Developmental Disability System Reform

Policy, Choice and the Lanterman Act

2011-09-01T08:31:00.000-07:00

A friend sent me this link. The concern (in the blog post linked) is that with a new state policy promoting integrated employment as a goal for every adult, that the individualization will be lost. In response, I feel torn between two cynicisms. On the one hand, state policy has little enough to do with actual practice that I would gladly accept a state policy stating the purpose of the regional center system as "for the enablement of the deaths-by-torture of vendor managers" for a small rate increase or the right to taze service coordinators who fail to convene ID teams. If we are honest, there is no catastrophe here. The most I expect the policy change to cause is a few bad meetings and series of sanctimonious speeches. Who'll notice?

On the other hand, I can share the writer's annoyance this far: Policy statements less substantial than a dentist's breath are a bad habit that promotes other bad habits. That we can safely divorce such statements from outcomes has made it all too easy to also divorce outcomes from our thinking. In turn, that makes ridiculous policy positions much more acceptable (c.f. the opening paragraph.) Does anyone doubt that the widening divergence of policy and practice hinders system reform for cost's sake or for quality's?

So, pretending for a moment that I take this seriously, here are some concerns:

We have a very hard time at consistently distinguishing between aspirations, moral imperatives and greedy shenanigans. It may not be clear, for example, whether it is better to be unemployed in the competitive labor market or productive at a site-based program. Were the policy implemented at all, it would undoubtedly be implemented inconsistently and in many cases counter-productively.
If we really want to streamline the system, it is never, in my experience, less efficient than when we try to help people do what they don't want to, and nothing is easier to sabotage than employment. How many hours of needed ILS, SLS, respite and vocational development would be cut or reallocated to support heroic efforts to find jobs for people who don't want them or aren't comfortable in an integrated setting, all in an environment where people who do want jobs can't find them?

All of this said, I agree with the state that every adult served by the system who is not employed in a competitive, integrated, profitable position ought to be a sign that something should be improved.

Did DDS cut something correctly?

2011-07-06T09:48:00.001-07:00

When I hear from worried vendors concerned about cuts, much or most of the dyspepsia is over the limitation to 15% administration in negotiated rates. There certainly can be a case against that cut. People who live on their own and can't use the commonest forms of communication are highly vulnerable and for those of us who serve such people, their best protection is not the regional center, or the area board or in many cases families but oversight from the administration of their service provider. Furthermore, to the extent that we are careful and detailed as a system, there will be many cases when service designs will have to be revised to bring down overhead and those revisions may not have a smooth path to follow.

However, my instinct tells me that the greatest flaws in the budget-cutting regime over the last years has been the combination of rigidity with uncertainty. Consider my personal black beast, the new audit requirements. The cost of that requirement, it seems safe to predict, will reach the tens of millions of dollars per year systemwide in purely administrative costs. Those costs are real, certain, specific, mandatory and tangible. But the mechanism by which that requirement will save the state money is hypothetical. To be kinder, I suppose we could say hopeful.

By comparison, the 15% cap can be at least anecdotally supported as a way of saving money and the combination of vendor, client and regional center have a fair degree of flexibility to decide what features of the support should be sacrificed to reach a clear threshold. Of course, the same combination is also empowered to launder their way out of savings via reclassification of effort, but still. To the extent that it works, the cut can be tailored to protect the needs of the consumer, the competency of the provider and the preference of the regional center.

Apart from Stanley, anybody out there want to give DDS credit for this? Or are there other cuts that seem smart to you?

ILS/SLS Workgroups

2011-03-27T10:51:00.000-07:00

So, this here workgroup thingabob is open enough to have too many participants but not quite open. Since some of us are representing all of us, CDCAN is holding weekly conference calls for what happens in the meetings to come out. Along those lines, I'll post my input to the group here.

Email sent 3/25:

Due to the inspired (yet stern) leadership of Tammy Bachrach, ELARC VAC chair, we spent the bulk of our meeting yesterday divided into tables based on the workgroups. The ILS/SLS group recognized that the legislature has changed their focus from service standards to "best practices," so we allowed ourselves the liberty of focus on cost-saving practices around ILS and SLS. Following are suggestions from the group.

For ILS: It was suggested that we might get more realistic service plans if, when a referral is made for a new ILS client, that in addition to the agencies referred to serve the client, a different ILS agency be referred the task of writing the initial assessment. The suggestion recognizes that when an agency writes its own initial assessment, even the honest and wise among us have a natural bias towards overestimating the need (although probably not by a lot, demagogues.) The assessing agency would have to agree not to work with the assessed client for at least a year.

There are some down-sides to this to be concerned with. One is just that regional centers might prefer agencies that write emaciated service plans. It would be important that the assessing agencies also be serving ILS clients and that the assessor rotate. Also, in areas where there is only one or two ILS providers this arrangement will not be possible. An objection from the group was that the assessment serves an important function of developing a mutual understanding between a new vendor and a new client.

All of that said, I think the idea has merit and should be discussed.

For SLS: There were two suggestions. Unlike the ILS suggestion, these had unanimous support in our discussion group.

1. It was felt that benefit appeals specialist (particularly, but not exclusively regarding IHSS) may be more efficient than some agencies at insuring that IHSS hours are covered by IHSS rather than the regional center or an agency. The proposal is that regional centers cultivate these advocates and vendors that choose this assistance would surrender a portion of their administrative funding proportional to their expected benefit management cost.

2. If somebody could, for heaven's sake, do something about worker's compensation costs for SLS providers, those providers would be thrilled to surrender a like amount of their hourly rate.

Email sent 3/27:

Hi, all. Me again. FIrst, to commend Scott. I think that was a nice job. The only exception I'd take is that some level of skill-development service ought to be available to clients living with family do not intend to change their home setting immediately. Whether that service is provided under the myth of Adaptive Skills Training rather than the myth of Independent Living Skills, makes no difference I can see.

Something that has been on my mind which is related to the topic at least: (The following is written in a prophetic voice, by which I mean I hope to be heard but don't really expect to be listened to, a la Jonah in Ninevah)

A lean system has to be a smart system and our system is never less smart than when it is focused on some sort of reform having to do with vendor codes and categories. Regional Center staff, forced by the nature of the regional center's role to make policy with a minimum of information and a maximum of effect, tend towards involuntary glibness and in my experience lose what concentration and permeability they otherwise retain when the topic of vendor codes is on the table.

Likewise, vendor executives, already prone to priestly grandeur and martyrdom (cf, this email,) are never more divisive, sanctimonious and grasping as when we contest our vendor codes (excepting, of course, when unions sponsor bills.)

To direct care staff and clients, vendor codes represent less than nothing. I don't believe anyone who will be in the room Monday would be able, watching individualized support delivered, to identify the vendor code under which delivery takes place. Either services are led by the client and his or her needs and abilities under the influence of a circle of support or not. If so, the service itself is probably efficient, whether or not the referral process or agency supervision, for example, are. If not, it's wasteful of taxpayer money and negligent of the value clients have the right to expect. I believe that any discussion of reform that focuses on category or code is likewise wasteful of scarce funding and negligent of important support.

So my concern with the work of our group is that it represents a deepening of our reliance on irrelevancies and distractions in defining the value we deliver and setting its price; and steps further away from efficiency and smartness in our system. The legislature has opened an opportunity to be brighter by changing the administration's proposal of "purchase of service standards" to a proposal of "best practices." Granted, that was a bad use of nomenclature but an improvement in focus. I do hope we can take advantage of this. As I said, I don't mean to change the agenda, but I would point out that most of the work we've accomplished so far has been the delivery of data and instructions from DDS and the return of criticism. I don't think much achievement will have been undone if we change our focus.

There is work to be done in how and why clients are assigned for agencies and services, work to be done on how vendors deliver that service. Granted that our services must always be individualized, it isn't necessarily the case that all regional centers and vendors need all of their processes to be idiosyncratic for that purpose. There must be opportunities for service delivery to become leaner which would lead us in a better and smarter direction than a discussion of standard hours or normal eligibility. Since by any name we are really talking about budget cuts, I would hope those cuts could be as much as possible to process rather than to support.

In sincere friendship and admiration (but with a pinch of sarcasm by which old friends recognize me,)

Doug

May God bless and keep you, make his face shine upon you and be gracious unto you. Amen.

Forecast

2011-02-17T17:08:00.000-08:00

Alongside "draconian," "savage," "irresponsible," "responsible" and "common sense," "darwinian" is an adjective that deserve to modify the cuts in process. Still, there seems to be little discussion of how the system will evolve in the presence of significantly less funding and new regulations. To the extent that there's a vision for change, it seems to be towards accountability, a welcome new feature, if the new accountability systems proposed didn't seem as spectacularly inefficient as the worst images of the system and if there were some little bit of the new oversight that addressed outcomes.

But as to the composition of the system, I have a very hard time believing that will not change over the next year. What has frustrated me the most watching the changes so far has been the lack of intentionality to it all. In essence, real cuts have come with implementing statute which in at least half the cases was implausible. This has left it to regional centers to cut services not mentioned in the trailer bills. So, from the be the change you seek department, here is my projection for the system we are now creating.

Congregate care will be much more prominent on the menu of options, and large providers will dominate: Larger non-profits, with some notable exceptions such as Jay Nolan Community Services, are principally site-based, secondarily group-based, and often have individualized services attached as tiny portions of the whole. They are also more likely to be non-profit and to fund-raise successfully. These services have been unsuccessfully targeted for cuts. But are the best placed to weather them and have generally avoided implementation of most, leading to cuts not targeted in individualized care.

There will almost certainly be fewer providers in the future. Parent-providers may continue and large agencies should survive but the smaller agencies that comprise most of the individualized system will be less sustainable. These agencies may merge with one another to survive, or close. To the extent that large non-profits are willing and able to provide ILS, SLS, micro-enterprise support or that smaller agencies can merge, person-centered services may continue to be available. But it is worth noting that under the hedgehog principle that firms specialize for a reason, it seems worth noting that at large agencies that provide both congregate and individualized support, ILS and SLS et cetera are usually very small pieces of overall programming.

Note: For the purpose of this post I am not assuming that this is a bad thing for people with disabilities, but I also do not assume this will make care more efficient. While congregated services are cheaper per person and per hour, clients receiving individualized support often require much less of it. I think it would be impossible to say based on data we have whether the site-based system is more or less efficient than its alternative. For example, micro-enterprise and job-coaching are much more common than workshops or enclaves with clients of ILS and SLS services which eliminates a lot of bureaucracy.

Moreover, changes rarely go well without planning and, thus far, DDS has been scrupulous in spreading damage to the system fairly evenly. As a consequence, whatever system change will come is likely to favor not cost-savings nor efficiency, nor quality but the fiscal positions of the providers. Fortunately for everyone, blogging is a low-overhead activity.

In praise of the monkey

2011-02-16T18:29:00.000-08:00

I had a recollection this morning of the old system-reform workgroups. The purpose as given was to make changes to the system, in partnership between DDS and other stakeholders, for the purpose of producing more value for the people the system served. All of the conversations, however, wound up focused on making the system more expensive. Better ideas were quickly forgotten in favor of silly ones. More than once since then, I've wondered what it takes to get sincerity and mission from experienced advocates. As much as anything, that question led to my ongoing support for CDCAN.

So, with that in mind, I like the survey monkey DDS employed for ideas regarding purchase of service standards. I'm skeptical that the resulting standards will be any less foolish than much of the existing trailer bill language. Even DDS, which is trying to reduce funding, can't seem to complete a thought on reform without bloating the cost of the system. (I would credit them for paying attention during the system reform.) But at least they are getting input some of which will be candid and thoughtful. I hope DDS continues to solicit feedback broadly and do hereby award them three bananas for current efforts.

A few notes on things as they are

2011-02-11T17:13:00.000-08:00

Just a couple quick observations from the hearing 2/10.

First, Ms. Delgadillo used the continuing availability of new vendors in response to a question regarding the affect of existing rate cuts. It bears noting that new vendors receive higher rates than the older vendors that currently have most of the capacity. The number of agencies closing, assuming it is small, might be evidence that rate cuts aren't too damaging but the number of new vendors is entirely irrelevant as a datum.

Second, the audit suggestion depresses me. DDS needs to find ways of lowering the cost of the system other than by raising the cost of the system.

Things DDS (or LAO) should be thinking about, Part I

2011-02-04T14:40:00.000-08:00

While DDS plays with service standards and administration costs and other proposals from which the unforeseen consequences will outnumber the planned reforms by 1,000 to one, there are some foreseeable scenarios for which planning could mitigate harm and reduce costs. Here is my list:

Consolidation is inevitable. The cuts the governor has proposed are more than the system can bear, but even without further cuts, many agencies are now unsustainable and there will be further cuts. What's more, there is no likelihood that the cuts as proposed will be the cuts as experienced. Things intended no longer to be compensated will be paid for and things left protected will be cut. Agencies will reach the point that they are no longer large enough to justify management and those agencies will start to close. The clients served by those agencies will in most cases receive new supports from different agencies.

Barriers to sale or merger of existing agencies can be removed, allowing the clients to avoid interruption of important relationships and lowering the administrative burden on both regional centers and vendors from the reallocation of those clients. The alternative is the existing process which is needlessly traumatic for clients and staff and needlessly costly for agencies and the state.

The savings in the Bureau of State Audit reports are between the headlines: So far, trailer bill language coming from DDS seems focussed on the most lurid offenses the BSA found in its work. I can certainly agree that IRC's budget-padding ought to be cut off and extra funding for relatives of regional center employees ought to be cut off. But booking savings seems foolish. It strikes me unlikely that any new statute will prevent miscreants and thieves employed by regional centers from spending any new money in ways that their colleagues have been caught.

But between the headlines were examples of how regional centers may waste money in small ways every day. To someone working in this system, a family member of someone who is a client in this system, the anecdote of the regional center employees explaining a contracting decision with an undocumented, unexplained preference resonated with countless experiences repeated so regularly I'd stopped noticing until I saw it in print. The new trailer bill language regarding large contracts might have prevented one $950,000 absurdity but perhaps never another. Reviewing vendor selection by regional centers by sampling the tens of thousands of opportunities that arise each year to be unintentionally inefficient holds much more promise.

As someone who has encountered both wild bears and domestic termites, I assure my friends in Sacramento that common, small pests do much more damage than big rare ones.

Look differently at rates: One way this system was meant to be efficient was competition. The problem is that there has never been a good tool for regional centers to use to reliably (or semi-reliably) judge quality and rates are opaque, so whatever providers compete on the basis of, it isn't quality and it isn't cost.

This has a couple implications. First, rates should be public so that agencies can compete on that basis. Second, it means that for the most part, the state is paying whatever rate was given to whatever agency was chosen on whatever basis. In the short term, if further rate cuts are anticipated, given that the rates are close to random, it would be better to cap rates than to continue hurting the low cost providers by the same percentage as the expensive ones. The usual justification why the rate system is so irrational has always been that to rationalize it would cost some agencies and they'll fight the change. That's still true, but seems pretty important in the present circumstances.

But rates ought to public and regional centers and/or DDS ought to publish them. That will make it a little harder for regional centers to neglect that consideration and a little harder for high-cost vendors to hype their own costs. Furthermore, it would help in negotiations as the fear of being cheated could be as completely allayed as it is possible to allay that particular phobia.

Query to readers: What do you think DDS should be considering while they write the trailer bill language? (Leave a comment and then go tell them.)

Questions

2011-01-21T14:24:00.000-08:00

Marty Omoto reported today that the Department of Developmental Services will publish its process for identifying cuts. That's a good thing, although the coincident report that the new trailer bill language will be available next week suggests it won't be much of a process. I'm left wondering if DDS, which has now had two years of near certainty that further cuts were coming to think about this. I'm curious whether they will seek to reduce costs generally or in a targetted way. In other words, machete in the daytime or grapefruit spoon in the dark?

About the Examiner

2010-08-08T10:33:00.000-07:00

So, I thought I would begin the new dealybob at Examiner.com with an explanation of what I would write as a reference for any future readers who would happen by. That first post was rejected, probably appropriately, for being too much in the first person. But, just to share, here is what it would have said.

***

Welcome,

This will be my first article as an Examiner (and so, the oldest one in my eventual archive.) It's a good place to predict what this column will cover. Consider this half a promise and half a bet, if there are takers for either.

This column will cover events, trends and policies related to the provision of human and social services. Professional caregiving is often publicly funded and usually highly-regulated so public policy will be discussed extensively, but market forces and demographics will also be considered. Sporadically, we in the social services think about actual people, so expect occasional profiles of people with disabilities, policy-makers, caregivers, charlatans and reprobates.

About me: I work in the social services industry as the chief executive of a small for-profit company that assists adults with developmental disabilities to live independently, as a subcontractor to state contractors. We will soon offer companion services to the elderly and physically disabled.

There is a phrase in the paragraph just above to make anyone skeptical, so here are the biases I'll admit to up front-

There are two principle purposes for having a social and human services system, to defend the threatened and to extend community participation beyond the barriers that nature and circumstance impose.
Services provided through government tend to be both inefficient and underfunded for their missions. The former defect makes a bigger difference than the latter and is more fixable. Inefficient service delivery creates costs not only to the taxpayer but also to the people who depend on the support provided, through malarkey.
Purely private services may (or may not) be more efficient, reliable and of higher quality but are also extremely rare. Very few of us will ever receive professional care not influenced by public policy.
Ideology drives idiots crazy, madmen to folly and reasonable people to fake deafness. This column will be very interested in the granular details of what works and doesn't work in both regulation and the marketplace. Democrats, Republicans, vampires of both union and capitalist varieties, dithering managers and doddering staff all may receive attention here, some of which may be complimentary.
I am a reformer, may heaven have pity and my neighbors patience.

Sounds fun, right? I welcome your comments.

Brand new bag

2010-07-21T14:38:00.000-07:00

Howdy and a quick announcement. I am now writing generally about social services, human services and professional caregiving for Examiner.com. It's something slightly closer to a job than this blog has been. The new site will take most of the effort I've been putting into this site (roughly 1400%) and be less focussed on developmental disabilities. I'll keep this site so Andy and Stanley have somewhere to rant and I can get deep in the policy weeds from time. The link to my new page is in the title of this post.

You're all welcome to join the conversation there.

Talking cents

2010-07-06T08:22:00.000-07:00

The dollars needed to preserve the system will not be forthcoming, I'm afraid. Not for a long time, anyway. I believe our choices will be to let it all continue to crumble or start seeing nickels and dimes worth of actual service as more desirable than advocacy denominated in billion dollar bills.

In support of a resolution I've proposed to the San Gabriel/Pomona Regional Center Vendor Advisory Committee, I've recently had the opportunity to retell this story: In 2002 or so, I started receiving a lot of phone calls from Service Coordinators asking me questions that took me by surprise. But they had a pattern: Many asked about the clients' height and weight (useful mostly if you are going on rides at Disneyland or boarding a helicopter;) some asked about the clients' ambulation (useful for special olympics planning;) others asked if the client had been out of service for any extended periods, out of state or hospitalized or in prison (useful for identifying fraud, assuming the same vendor would bill fraudulently and then answer the question diligently.)

The questions were odd and there was no particular place for me to find the answers, so after receiving the calls I would generally get up, search through the client's file and, if that didn't turn up the answer, call the supervisor responsible for the case who would, next time she wasn't with a client search through notes for the answers. Then I would call the SC back with or without the right answer. I don't know how much time SCs were spending on the questions, but Arriba staff were spending several hours per week.

At some point, I found an unimpertinent way of asking "why are you asking?" and the answer came "for the waiver documentation" nine times out of ten. After that I talked to the very smart person in charge of said documentation and we worked out a template, to be included in every progress report, that would answer all of these questions. Staff already, when updating the reports looked in all the places that data would be for the answers to other questions so once we changed our template, the administrative workload here went down sharply and at least some time was saved for the SCs who eventually would learn that the answer was sitting on their own computer. At the very least, the calls per client-question fell from two to one.

Spread that change from Arriba's 100 or so clients to a regional center's some-thousand-and-some, and it might be that half a year of one person's work could be saved. That's not a ton, but it could be enough to turn an administrative position into a service position or a savings.

So, here's a question for commenters who seem to need questions: What are some other small changes that might make the cost of service left while leaving the service intact?

The pettiest post on this site

2010-04-07T10:58:00.000-07:00

This is a very small point, but the conversation around caseload ratios for service coordinators has become too funny to leave be. What I keep hearing is that for HCBS waiver clients, the caseload ratio remains limited to 62:1 but that the cap has been lifted entirely for non-waiver clients. It makes sense that people would say this because neither CMS nor DDS nor anyone else want California to twit the federal government in a way that requires a response.

But, the assertion keeps getting made without irony or humor or apparent self-awareness so let's just us, we few who discuss here, set the record straight. If the non-waiver caseload is uncapped, then the waiver caseload is also uncapped. The reason I think so: I don't know of a regional center that has waiver and non-waiver caseloads. As far as I know, all service coordinators have mixed caseloads.

This means that that to say "we have a 75:1 caseload ratio" means the same distribution as to say "we have a 62:1 caseload ratio for HCBS clients and a 101:1 ratio for non-waiver clients (assuming 2/3 of clients are on the waiver and I did my math right.) Really, this is a very unimportant point, but I do hope you will join me in smirking whenever you hear someone claim that the caseloads are fixed for waiver clients.

Other closures

2010-04-01T07:42:00.000-07:00

Much has been made of the pending closure of Lanterman Developmental Center, and it would be to our detriment to ignore the impact of the planned closure of Lanterman Regional Center. According to DDS Director, Teri Delgadillo, Lanterman is being closed and merged with Harbor and Westside regional centers to save money. As Ms. Delgadillo says in her statement, "The administration considers these three regional centers, which have already harmonized their service coordination process to the degree that client expectations have been regionalized. Furthermore, by pooling staff, the combined regional center will have the capacity to say 'no' in more than 80 languages."

"We certainly defer," Director Delgadillo continued, "to the combined 80-person board of the merged center in terms of naming the new facility and appointing management. But DDS personnel are recommending 'Richard Riordan Regional Center,' because we enjoy the sense of whimsy that alliteration brings."

Walt Disney Regional Center, which will be created from the merger of South Central and Orange Country RCs will have the capacity to say "please" and "thank you" in more than 30 languages and on legal pleadings.

Because a new post is sorely needed

2010-03-19T09:16:00.000-07:00

I apologize to the few but loyal readers that not much has come to mind to write about here. There's big news about Lanterman Developmental Center, of course, a topic on which I don't feel qualified to opine about.

But, in the post below, Godwin's Law seems to have reproven itself and the phrase "dead white male philosophers" has also appeared and I feel ready to propose my own Doug's First Law of Internet Discourse: To wit, no subject is so arcane that common platitudes won't dominate the discussion once the topic has been exhausted.

So, lacking anything else to mind, I'll open the thread to you all with three questions:

First, if anyone out there has interacted with the Delatorre audit, I'd be interested in hearing about the tone and rigor of the inquiry. Can anyone tell how well-informed the study has been or whether it appears vindictive or exploratory?

Second, if self-determination/directed-services is no longer an available option for streamlining and improving the system, what would you all suggest as a conceptual frame for intentional systemic reform?

Third, an anonymous guest suggested something I absolutely agree with (and have agreed with in previous posts,) that more funding won't fix a broken system. Anonymous suggests Stanley's answer to the question, but I am curious for two sentence answers: Do you all think the system is primarily underfunded or primarily broken?

Some etiquette: Let's start by answering one of the three questions (as opposed to two, all or none) per comment, begin by identifying which question you are answering and, if at all possible, consider the poor blogger who feels compelled to read all the comments and try to begin with two- or three-sentence replies.

I'll try to come up with a new post before anyone begins comparing department directors to war criminals.

Who will reward the far-seeing?

2010-01-29T10:42:00.000-08:00

OK, so this post was either not prescient or very prescient. I doubt we're done with cutting.

So, here's a topic for discussion. Immanuel Kant distinguished between phenomena, things that are observed, and noumena, things as they are in themselves. One thing I believe strongly about our system (and most others) is that the phenomena we describe when we talk about support to people with developmental disabilities, are almost entirely process. That makes sense, considering that support is initially a verb. But process is hard to defend and, really, if all we do is do, and nobody gets anything of value in itself, then it may be right that we have trouble defending. My question, regarding what our system produces, is what do you all think the noumenon is? What is the thing in itself that people with disabilities receive from all the work that goes on.

Just to handicap the discussion, "dignity," "sovereignty," "choice" or "safety" sound too abstract to me. Is there something people get from being supported that they would know they lacked if the system went away? What are those things?

So how is everybody?

Looking forward to 2010

2009-12-30T06:57:00.000-08:00

Well, heck. The new year will bring new cuts. We all have known that for a while and none of us have any excuse for not being ready for them. I just updated my resumé, for example. I do hope people understand that the next round of cuts proposed might eliminate entire programs and, perhaps, state departments. But for my optimistic year's end post, I'd like to suggest criteria for guessing whether DDS thought through the cuts it is about to propose:

If the cuts proposed have been (tragic but) thoughtful:

Rates will compress toward the low end, not fall by a fixed percentage.
In explaining the cuts, resistance by large lobbying organizations won't be mentioned.
Those will be least affected who are most urgently in need.
The package will contain not only clear descriptions of what regional centers are to do differently, but enforcement mechanisms for reining in inventive interpretations or, at least, an expressed and manifest willingness to publicly side with other stakeholders some of the time.
Andy Pereira will need to think a short while before ranting.
Some non-residential agencies may actually close.
Contrary to the "furthest from the client" meme, the scope of support will narrow more than oversight fades.
Many members of the cost-cutting stakeholder group will complain that they weren't listened to and mean it this time.
The interdisciplinary team (IDT) approach, Individual Program Plan (IPP) primacy and fair hearing rights will be strengthened.
The limits on the IDT and IPP will be clarified, in terms of requiring a clinical and practical rationale for support.

To expand on my thinking (apart from my comment about Andy- you just gotta know Andy,) ideology will not produce a budget solution nor a human solution. To get both, consideration must be applied to efficiently shrinking the system, maximizing cuts realized (rather than scored) and minimizing disruption acknowledged (rather than ignored.)

The first challenge is that we have spent years in denial that any change to the system is necessary and one result of that is that the map of the system isn't much more detailed than it was 9 years ago when I got here (and when the map showed "Here be dragons" across the state.) So there is no real possibility that the changes to be proposed will be wise or wholesome.

That said, some common sense can be applied. It is clearly better to retain a decreased number of low-cost support agents than to continue trying to keep all the state's executive directors employed. This is why a downward compression of rates is wiser than a fixed reduction and why it is better to restore the clinical and practical requirements to the scope of a client's service than to list categories of service to be discontinued.

Because we can't describe our current reality (without lying, exaggerating or generalizing beyond the scope of surrealism,) it is important to retain whatever intelligence the system does feature. This is why both quality assurance and the ID teams remain an important feature. There's also some hope to be had that if the system shrinks more than its smarter features, the system itself can grow a little less mystical in process and product.

Likewise, for the system to grow smarter it is absolutely mandatory that regional centers grow less glib, for clients to have clear understanding of new limitations and for some agencies to close. But the most important factor is that stewardship of this system and its resources for the benefit of the people served has to improve for the remnants to matter. Which is why such proposals as an x% rate cut across the board or the evacuation of regional centers will prove a lack of good thinking by the administration.

Of course, this budget is bad enough that we just have all non-residential care proposed for elimination. In which case, dangit.

The (Draft) Ten Guiding Principles for the ICBM

2009-11-17T11:27:00.000-08:00

At the request of Anonymous, here is the draft I received as the "ten guiding principles for the Individual Choice Bugeting Model Process." (ICBM) I am typing this all in so I expect Anonymous gratitude.

Reduces overall state General Fund costs.
Increases fairness, equity, and transparency in the allocation of resources.
Accounts for geographical cost differences.
To the extent possible, relies on existing state data systems and assessment processes.
Accommodates individuals with exceptional or unique care needs and their associated purchase-of-service costs.
Easy and efficient to administer for consumers, families and regional center personnel.
Does not jeopardize individual's health, safety and/or well-being.
Does not impose any unfunded mandates on participants, providers or regional centers.
Promotes individuals' ability to achieve and maintain living arrangements and work in the least restrictive settings.
To the extent possible, can be implemented within existing resources.

A few things I would note. First, just to cushion the sarcasm to follow, I'll just say that I don't disagree with anything listed and I don't mean to criticize the author(s) in particular.

With that said, I think it is less important what the principles are than that there are ten. This is clearly a document of good intentions, more than a design plan. It is also worth noting that with a maybe exception for the third principle, these are all principles designed into the traditional system as well. On the one hand, you can consider ICBM a useful attempt to try again. On the other hand, there is nothing in these principles to provide for anyone's optimism.

The last thing I'd point out is that nothing here refers to using unvendored supports, decreasing the involvement of the regional center or either providing relief from or adding to the current, expensive and unimpressively accountable regulatory system. So the pessimists I call my brothers and sisters and inanimate or ungendered kin can rightly justify a jaundiced expectation. If ICBM does constitute some sort of constructive reform, that feature will have been added later.

**Addendum**

A couple of bonus thoughts at no additional charge: One is that the "unfunded mandates" line is interesting given that Counties and IHSS workers are running around buying fingerprint scans willy-nilly and typically at the expense of the provider. I wonder if this line exists in order to specifically lay to rest fears along those lines or whether the author intends it as comforting boilerplate.

Also, the fact that this is a draft of principles and was presented as current in November should maybe suggest to the providers of suspended services to consider other lines of work. If this represents the extent of the work, and it may not, that doesn't promise much in the way of quick development or expeditious deployment.

**Duodendum**

I recently received a note that DDS did not produce the document quoted above and cited below. This might be good news, as we can hope that the actual development process is further along than it seemed and may also be less obvious. The bad news is that most of what I have written in the two posts now seems frivolous and mean. Well, sort of bad and not at all news, but I do repent of the error.

ICBM outgoing

2009-11-11T09:32:00.000-08:00

Last week, I received a copy of the draft of 10 guiding principles for the new Individual Choice Budget Model. A few things I'd note. The first is that after several months there is a draft version of 10 guiding principles for the new Individual Choice Budget Model. That right there is discouraging. The second is that the 10 principles look so thoroughly rhetorical. Protect safety, ensure choice, save the state money. Good ideas, all, and I offer this blog as a pretty good proxy for what five years of work along these lines will probably look like.

The rub is you can't really root against them because there are clients and vendors being held hostage until the ICBM is certified by the Director of DDS to have been implemented and to be saving the state money. My modest proposal, submit this blog as the complete implementation of the model and certify that you're saving money by canceling the development.

A fair hearing for fair hearings

2009-10-06T13:01:00.000-07:00

So, there seem to be vendors in LA County who know that I recently made the executive director of a local regional center angry with a needlessly hostile description of regional center habits vis-a-vis the termination or reduction of services without the prescribed ID team meeting or notification of fair hearing rights. Regarding the degree I exaggerated (I might have said service coordinators never follow the regulations in this situation,) I feel comfortable that I was within the statistical margin of error. Regarding the degree to which my tone was needlessly hostile amid a very strained effort to pull the community together in the best interest of all, I do repent (and did apologize.)

But, while running your mouth foolishly is a terrible pedagogical technique, I mights use the event to talk about the difference between how I, as a vendor, view the fair hearing (and aid pending) laws, which I believe is sharply different from the way regional center personnel hear vendors talk about those laws. Consider this my effort to follow the aforementioned executive director's lead and deepen the partnership between two segments of the community that often don't collaborate or communicate well in good times and have particular need of each other now.

In my experience, by far the commonest way that our services are terminated or reduced begins with a phone call from the service coordinator to the vendor agency. Friends who run agencies throughout the state assure me this is their experience, as well. The client is often left out of the process entirely, even though state be provided a team meeting in which they are to be the leader. At that meeting, if the client does not agree to service termination or reduction of reduction of services both state and federal (for Medical waiver enrollees) law require that they are to be provided notice of their right to appeal, their right to support for the appeal, and their right to continue their service as currently provided until the appeal is resolved, if they choose to appeal. I won't say again that this protocol is never followed, but I will say again that this protocol is rarely followed unless a vendor insists that it be followed.

However, the law is clear, plain and theoretically binding. When someone calls the office or an ¡Arriba! supervisor to say that "I am cutting" or "I have to cut" or "these new regulations require that I cut" services, we are all trained to remind them of the regulations which apply to that process. The result is almost always an ID team meeting at which the SC explains to the client the reason for the cut, the staff make sure the client understands what is being done and, most importantly, the client has the opportunity to review what is proposed, consider what the price will be and then the ID team can work together to look for solutions if the transition will create important problems.

The value of the hearing rights is not necessarily in the hearings themselves. More often, the value comes from the ID team everybody felt too busy to sit in on until it was required. ¡Arriba! staff are forbidden from encouraging clients to appeal, unless the client first states that they are uncomfortable with the change. I have been director of this agency for nine years and to the best of my recollection, our clients have had informal hearings maybe three or four times and formal hearings zero times. But many times, clients have had productive ID team meetings as a consequence of the threat of an appeal. While we are all looking to thoughtfully make the best solutions for our budget problems, I would argue that the ID team meetings will be crucial.

As long as the best way to get a thoughtful, collaborative meeting remains the threat of an appeal, vendors should remain vigilant about insisting on those rights. (Plus, they are, you know, rights.) While a regional center employee might receive reminders of the regulations as antagonistic, from this vendor's perspective, we insist on them for collaborative purposes.

Praise Where It's Due

2009-09-03T19:09:00.001-07:00

I have been critical on this site (and most places I've bothered to write or speak) of our legislators' lack of curiosity regarding the outcomes of the program they fund with taxpayer money. So I have to give credit to Assemblymember Hector Delatorre of Southgate. The commentary below and decision to audit the system represent a surprisingly thoughtful first step on a long road toward capable legislative oversight of DDS.

Given that a letter from vendors was cited as a reason for the audit, you can imagine why whistle-blower protection plays such a big role in Delatorre's presentation. That wouldn't have been on my list of first topics, particularly because client confidentiality and the vagaries of client choice make proof of retaliation unlikely even upon granting whistleblower immunity. Whistleblower protection could be a useful cog in some future accountability machine, and any of you who read this blog frequently know how I feel about accountability. Still, only a vendor could think this was the best beginning.

But I have to say, I was impressed by Delatorre's grasp of the subtler point that regional centers function as much as government agencies as they do as non-profit public benefit organizations. That isn't as obvious as it is true and the Assemblyman brings up points in the video below I had certainly never thought of. This issue has a stomach-turning potential to turn out in strange ways if explored in depth, and many of those ways might be sort of sinister. But I'm going to guess that restructuring the system away from regional centers or absorbing them into the apparatus of the state is far far beyond anything the legislature will be ready to handle soon.

I'll confess I'm a little concerned about the feedback the audit will receive. If the audit committee were auditing the vendor community, quite a bit of the feedback from other stakeholders would surely be scathing and some of that unfair. In this case, the same is likely to be true. People like to come forward with a complaint. Sycophancy is also a risk.

At some later point, I might write something about opportunities and risks that loom behind this survey. But, for now, kudos to the assemblymember for taking an interest in our system.

Mr. Manners and five budget cutting taboos

2009-08-31T09:49:00.000-07:00

The following is my first ever attempt to opine on good manners but, clearly, we need a new post up and this is what I got.

Brother Doug's Behavioral Tip for DDS:

When Regional Centers are wrong, be strong. In the past, Regional Centers have acted variously with regard to the need to cut costs. Some have been consultative and careful. Others have behaved as stupidly, precipitously and imperiously as a rabid whippet in a fox' den. On those occasions, DDS (as well as Disability Rights California) have been worse than useful so far as I can tell. I can only assume DDS allows regional centers their heads (wooden and otherwise) based on the idea that nobody comes willingly to cuts and other stakeholders will be fractious and unwilling in any case. I think this is a mistake.

When Westside Regional Center came out with their (dismal) expenditure plan years ago, many of the elements were clearly in violation of trailer bill language. Nonetheless, DDS was publicly supportive and despite that support, the community was fractious and rebellious and it took months for any POS behavior to change. As a counter-example, San Gabriel/Pomona Regional Center got upstream of some cuts by making them collaboratively in a forward looking way. Of course there are some yet to make, but I would wager that by working with the community, some spending reductions are already realizing savings and have done so since May without much rebellion and, so far as I am aware, any needless loss of life and welfare (as I was sorry to witness when FDLRC made it's expenditure plan without resistance.) Any strength DDS shows in preventing regional centers from too much expedition is likely to be rewarded with client welfare and more savings.

Dom Douglas's Tips for Regional Centers: Get in the habit of respecting the rights of clients and what wisdom there is in vendors and family members. As above (and in the post below) the imperious, expeditious management style is likely to be expensive, inefficient and produce needlessly sorrowful outcomes. I know most if not all of you think that all clients and vendors do with cuts is complain and resist. As a vendor and a family member, I would that we're only bumptious when laws that don't exist are given as reasons for things we hope to avoid. Generally, the community understands why there are cuts but we want them implemented as thoughtfully as possible. Most regional centers have never tested experimentally what would happen if a collaborative, person-centered approach were taken. Most other stakeholders have an evidence basis to doubt that pushy regional centers will do much well or right. Now is a good time to learn collaboration together.

Cousin Doug's epistle to other regional center vendors: To the degree that Regional Centers will work with us, the clients will listen to us and the DDS will defend, act also in good faith. It is not our place to provoke clients and antagonize service coordinators who have reached a mutually successful agreement. Those clients who need our help defending needed supports continue to have the right to a fair hearing. We will make much better advocates for those clients that need defending if we don't try to create clients who want defending. It will be harder for our detractors to accuse us of refusing to give up units of service if we show discretion and good taste. This year will stink financially for direct care providers and their bosses more than anyone else in the system, but the system doesn't owe us a living, either.

Ole' Doug's advice to clients and their families: Understand that everyone supporting you is under stress. This doesn't require apology, gratitude or certainly not the stifling of grievances (we need grievances expressed now more than ever.) But remember that however foolish, selfish, useless, youthful, greedy, controlling or impenetrable the professionals around you might be by nature, there are forces pressing us to be worse. If our behavior were personal, it would be much better.

To my friends in the chamber of commerce: Ironically, the most expensive ways we do things tend to be the least integrative of people into the community. The best ways we can implement our budget cuts for fiscal purposes and/or to preserve the value of the system will be for you all to see more of us. Take this opportunity to make new friends, employees and customers.

Baron-centered services

2009-08-04T11:33:00.000-07:00

When we talk about person-centered services, and most of us speak about such services reverently, we assume that the most efficient and most morally appropriate support for people with disabilities would form from the will of the end user, be shaped by those closest to the end user and that each degree of separation from the end user would decrease influence significantly. I don't challenge that assumption which I find works both philosophically and mathematically.

I have written before here how frustrating it can be the degree to which advice, technical assistance, rule-making and program formation follow a feudal system in which the principality of DDS is invoked by the baronies of the regional centers to direct the viscounts and baronets of the various vendored agencies. This is the least efficient, most morally suspicious method of standardizing services, particularly when the message seems to be "Here is how to provide person-centered services."

A feudal system requires the consent of the governed as much as a Democracy does. It bears mentioning that one reason the community-based system revolves around such centralized control has been that the vendors are so cagey, political and reluctant to insist that knowledge flow both ways or even offer some when asked. Clients and their families could provide more guidance too, probably.

And yet, in the current funding environment, I find it noteworthy that in our collective panic, the trend seems to be toward a more feudal system, particularly where information sharing is concerned. The ELARC board retreat, rather than a conversation, was allocated nearly entirely to congratulating the regional center (something it deserves- in many ways ELARC has been a model of administrative competence) and the promotion of some person-centered tools they developed. The participants, vendors, clients and family members were asked their input only in the final 15 minutes and in response to the question "What can we do to promote use of these instruments."

So let it be said here that the purpose of this meeting was to promote person-centered process offers only irony and evidence that many who promote individualized support don't understand what they say they are promoting.

If current events require a new level of partnership and a higher degree of efficiency, there will be much more time spent in which vendors, families and clients instruct regional centers. It takes effort to make a smart system and it takes thought. The distributed wisdom of community-based system ought to be our best instrument for making opportunity ought of current challenges. To that end, the certainty of regional center personnel and the recalcitrance of direct care users and providers are the most obvious obstacles.

Sidenote: I don't suspect that regional center personnel or vendors are intentionally complicit in the centralized course of decision-making in this system. I just think that findings have followed the funding for so long that long-time participants in the system, a group in which I'll soon have to admit membership, don't even realize how arrogantly or submissively they are behaving.

Serving Stanley for Free

2009-07-14T08:47:00.000-07:00

In the comments for the previous post, Stanley asked:

"Thanks for providing specific provider details...hate to push one so willing to provide such information...butbut wondering how do rates compare with actual cost of providing quality programs...do rates paid by RC cover all cost of providing quality support...are all IPP needs/goals covered by rates.

Questions arise based on process used to determine cost of providing support for my daughter...eg/ie, agency gave RC cost to provide support...RC either approved or denied these cost...I do not recall any mention of what rate would apply...there was no discussion of an agency who could provide same support for less...did such an agency exist...how does one quantify/equate lower rate and program quality.

And among many things I have not seen is a list of state-set rates...there seems to be a disconnect between rates, cuts and cost...also

How do cuts effect Lanterman entitlements...ie/eg, Though DDS wrote that it will maintain the entitlement of the Lanterman Act, it simultaneously wrote that it would mitigate the expenses associated with the growth in population?"

Here are some thoughts, I invite readers to add their own:

1) I am absolutely certain that rates and quality are not perfectly or even well correlated. There are a lot of things that cost money to do badly and are free if you do them well. Just as a quick example, with individualized services, there is always a tension between management's idea of how those services should be provided and the end user's. There is always a fiduciary concern that the client's money be spent appropriately pitted against the client's interest in having their money spent according to their wishes in a timely fashion. An agency can spend a lot of money imposing the management's interest while many clients provide their own vision for free. This is just a theory, but I have long suspected that leaner individualized supports are probably much more person-centered supports.

To agencies like ¡Arriba!, fairly lean individualized providers, the most important benefit from better funding is staff retention. But if management is injudicious or unwise in who gets retained, as I confess to having been on a few occasions, then quality doesn't benefit. Good funding can allow management to be too comfortable trusting staff and allow people who could more productively do something else stick around longer. So better rates can improve or erode quality, depending on the willingness of managers, staff and clients to make difficult decisions before making payroll becomes a maybe thing.

A few cautions, though: A lean, quality-focused, person-centered agency most likely will see quality go up and down as rates do. I guess my answer to that part of the question is that the impact of budget cuts on accessibility is more obvious than the impact on quality. Another caution is I know even less than DDS and the regional centers what the factors of quality in a congregate support are. It may be that as services become more intentionally programmatic, standardized and institutional that funding per unit of service has a simpler and more positive correlation with quality.

2) The connection between rates and the IPP is obvious if you are talking about SLS or the total Regional Center POS budget. Otherwise, the IPP is purchased by buying units of service that may not be through the same vendor code or agency. At ¡Arriba!, for example, we can support every part of a client's IPP at our new, lower rate but the cost goes up because we have to add hours of service for each goal we work on with a client. I understand that for SLS clients and SDS clients the "rate" is a composite of costs pursuing different parts of the IPP so it would surprise me if an SLS provider could say yes in answer to your question. I can, though, provided I am given enough authorized hours to juggle it all.

Obviously, if the POS budget is capped this year (but exists) then some IPPs will have to get less ambitious. That might even be a good thing if we could trust people to prioritize wisely and thoughtfully. If anyone reads this and trust that IPPs will diminish wisely and thoughtfully, please let me know in the comments. I'd sure like to hear it.

As to your comment about the disconnect you perceive between rates, costs and cuts- I can only agree. It's madness. A herd of cows would design a more rational system. A pack of wolves would design a more honest one. A cabal of cannibals would design a more defensible one.

**Update** Through the good offices of a good friend, Stanley, here is the list of rates and rate-setting mechanisms:

Dreaming with the Governor

2009-07-07T15:44:00.000-07:00

While we're waiting for work to be done by the legislature, and since I haven't posted here in a month, I have some thoughts about one plank in the Governor's proposed cuts to DDS. One of the elements of the cost-cutting plan calls for Regional Centers to refer clients to the lowest cost provider of the desired service who is able to meet the requirements of the client. My agency seems to be the current low cost provider of individualized supports serving the SGPRC catchment area and, perhaps, the ELARC catchment area as well.

In a way, this is a better bad policy than most, at least from the provider perspective, particularly where agencies with state-set rates are concerned. The biggest budgetary risk from the rate cut implemented February 1 will be that vendors with already low rates close and are replaced with agencies whose rates remain higher than those charged by the low-cost providers before the cut. In fact, when the rate cut went through, ¡Arriba! was the second lowest-cost provider and remained so until our better closed in April. The risk is that unit costs rise or, at least, the overall affect becomes uncertain.

One smart way to avoid that trouble would be to cap rates rather than lower them proportionally. In that case, high-cost providers would be forced to charge less and if they failed to restructure their costs, they would be more likely replaced by lower-cost vendors.

But the proposal makes some sense, too. Under it, lower cost providers are to be strengthened after the proportional cuts through higher volume. This should help preserve the lower-cost providers. Setting aside for the moment my usual bitterness that the system should be so vendor-centered, at least the budgetary intent has a better shot with this proposal implemented.

Except it probably won't be implemented. I have very little hope that this agency will see more referrals. Regional centers are already incented to and expected to use the low-cost provider able to meet the clients' needs. When the previous low-cost provider closed, how many of their former clients were referred to us for service? Exactly. Even in the middle of a financial crisis that forced the regional center to cut hours, the lowest-cost alternative wasn't used.

So worry not, my friends, about this particular piece of trailer bill. Should it pass, your friends and loved ones will not be herded into low-cost programs but will continue to enjoy the higher-cost services of whatever quality they now receive. Hopefully, the cut was scored conservatively.

The meaning of Marty

2009-06-04T20:02:00.000-07:00

As many more people than are ever likely to read this blog now know, Marty Omoto today announced the suspension of his advocacy work through the California Disability Community Action Network. As everyone I'm aware reads this blog knows, Marty and I are both friends and colleagues and I admit to both a bias and an interest in his welfare. So, like Mark Antony over the body of Caesar, I want to publicly share some thoughts about the systemic importance of Marty's work while maintaining the friendship privately. Friends, Californians, countrymen, I come to contextualize Marty, not to praise him.

Going back to the days when he was with UCP, Marty is best known for his reports and townhall meetings. Leaving aside other accomplishments, Marty's work has revolutionized advocacy in the narrowest sense of that word, preparing the people whose welfare is most affected by public policy with information and involving them in their own struggle.

This is not the way things were done when I entered this system in 2000. During the Service Delivery Reform effort, my introduction to this system, California's DD policy and Sacramento, stakeholders represented peers who were strangers. A good person elected by a dozen or a hundred others to represent People First spoke for 200,000 strangers. Someone selected by the State Council on Developmental disabilities spoke for the same 200,000 strangers. A few associations sent lobbyists or representatives (of which one was Marty.) These associations might have 100 or 200 members each or ten or twelve, and they would speak for their 8,000 peers, the overwhelming majority of whom were strangers. ARCA would speak for their members and the 8000 providers and the 200,000 clients. SEIU spoke for workers in the field, of whom, maybe, a few thousand were voting members and 100,000 were not consulted in any useful form or fashion.

Marty shared inside late-breaking information at all hours, to anyone interested. Somewhere around 50,000 people are now kept up to date and provided a platform for input through Marty's efforts. Is it possible that any stakeholder group ever gathered by DDS included the will of 500 people who had been substantively consulted or that 1000 people ever learned what had been discussed by any other channel?

In an open vote in a public place, the proposition that our work ought to be person-centered would receive something near consensus. In that same forum, we would pass a resolution for the dignity of every person with disabilities and their right to informed consent. Any group of us with strangers watching supports the inclusion of people with disabilities into the whole tapestry of our society. "Nothing about us without us" would be acclaimed at convention up to the rafters and down the street, born on the shoulders of confident advocates and electric wheelchairs.

In our system, there is always room for disagreeing with one another, always room for arguing with one another, and outside of the present emergency, even some room for pillaging, cheating and insulting each other. But if we understand those principals we claim to uphold, there has to be room and support for the distributed, democratic and collective advocacy that wasn't here before Marty put it here and isn't likely to remain if he departs.

Save your self(-determination)

2009-05-21T13:44:00.000-07:00

On this blog, we have discussed SDS (self-determination or self-directed services.) For examples, you can click here (and please forgive the self-referential first result.) I have tended to argue stridently for self-determination in concept and ambivalently for self-determination services as proposed and grouchily about SDS' roll-out. Now SDS seems dead after an unfriendly end-of-life. But the basic concept still seems relevant, particularly with the traditional DDS system wheezing and scowling.

So, a first question would be what was the basic concept? If you read the languishing proposal to the federal government, you don't know. But I would argue that the basic premise was that the individual level is the best one for identifying and addressing the needs of an individual.

When you look at what SDS offered, there are obvious efficiencies available under a person-centered service regime which can save the state money and improve benefits. Now that the SDS movement is on the shoals and it's cargo poisoning seals, we have an opportunity to consider whether what was important in SDS remains viable and worth salvaging from the wreck.

Self-identification of needs and solutions remains, in theory, the official law of the land and the funniest joke in the villages. There exist more than one way of putting the I back in IPP/IFSP. Certainly, the preference for providing supports by availability rather than appropriateness allows a great deal of waste in our system, of state funds and client energy. This ought to remain a focus in bad financial times more than in good ones.

Administrative cost will continue, I'd think, to be under pressure. Instead, this is what advocates seem to defend most passionately. Clients who are able to protect themselves don't need to be paid to do so. Clients who are able to advocate for themselves don't need to be paid to do so. Clients who can judge among available options for their own goals don't need to be paid to do so. So why hasn't the devolution of the purchase and oversight power of regional centers and vendored executives come under attack with the community budget, for those clients able to take up the same task? Even the development of SDS empowered regional centers, progressively, to apply themselves to tasks capable individuals will do for free.

Throughout our current budget fandango, deregulation continues to not come up as a means of reducing fiscal pressure. It ought to be remembered that beside stifling innovation, regulations always have a fiscal cost as well. A correct system will balance the cost of regulation and supervision against the not unreasonable fear of liberated vendors. SDS offers a terrific vehicle for testing a more person-centered regime as a cost-effective means of oversight, but even without SDS, some rebalancing is called for.

Unvendored services still offer more cost-effective resources for many currently vendored efforts. As long as the only way some ¡Arriba! clients can reliably carry out normal activities is by ¡Arriba! employee chaperones, we will continue to provide that assistance at our new, low, low rate. But there are a lot of trips for which a neighbor with a Camaro and twenty bucks for gas is an almost perfect substitute at half the cost. SDS was a useful model for testing the safety and availability of unvendored providers of unskilled services. Even without SDS, policy-makers ought to be broadening system resources. Unvendored services can often be more integrative and inclusive than vendored ones.

Without a formal SDS proposal, some of the the composite policies still offer relief to a stressed system. The development of those policies, in turn, can increase the level of self-determination in our system. SDS may now be decomposing and might have started to decompose premortem, but before we bury the remains, it's worth seeing if there aren't some nutritious bones left in the carcass. If we aren't that hungry yet, we are likely to be soon.

Impertinent data

2009-05-08T13:04:00.000-07:00

At the Senate subcommittee meeting yesterday, I was reading through the agenda which mentioned DDS's annual report which was described as "pertinent data" about the people served by the system. Let's use that as an excuse to talk about what data DDS doesn't provide (or gather.) Service outcomes would sure be useful, particularly in a shrinking budget. Which Independent- and Supported Living agencies are most or least likely to help someone move out from a residential facility, and which are most likely to see their clients return to licensed lives? Which employment models and agencies are most likely to see their clients move upward in income and downward in support need? Which residential facilities serve happy clients and which are essentially traps? Which transportation agencies have the best record of picking up on-time and dropping off uninjured? Do some agencies see more abuse than others?

Other pertinent data would be pertinent data. Do some regional centers provide more information on options and alternatives without being asked? Do some regional centers see their clients live more fully or require less support over time? Are there regional center policies that might correlate with outcomes? Which regional center will be the first to notify a client of their appeal rights as required?

This would all be pertinent data. This information would help our system learn, evolve and do better work with less waste. We would be better off if we had no idea how many Californian 15-year-olds have diagnoses of autism and some notion of what works for those that do.

The people and their anointed

2009-05-04T09:38:00.000-07:00

California's political system is a funny creature. Our politics tangle in the radical democracy of the ballot initiatives then get caged by the radical republicanism of legislators who choose their constituents rather than the other way around. I never feel our government truly represents the people except when I compare the results of the two law-making processes. When I insult our legislators, it is principally over their carefully districted intransigence against common sense, voting aye on every expenditure without a thought for value and nay on every tax without a care for cost. And yet, we seem about to vote down the proposition 1x tax increases and how often does a bond measure fail? The two systems really are parallel.

Somehow, the one heroic effort of the legislature- to redact representation from their duties of office- has also failed.

Better government ahead?

2009-05-04T09:00:00.000-07:00

The good and great have reminded me that I haven't posted here in a while. I started to, now and then, but obviously, I'm delinquent earning my pay and reputation as a blogger. I have no coherent or clever ideas to post about, so now is a perfect time to remedy the situation.

Generally speaking, I have been an enthusiastic critic of California's legislature and a temperate admirer of the administration. One thought substitute I can offer is this: We may reasonably hope that California's government improves as a result of the budget crisis. The legislature might improve because fools and cowards wait to be forced before acting, so the impossibility of California's budget may be enough to move a super-majority, if not a consensus in the statehouse. Someone should spray paint legislators shoes on the capitol carpet to verify, but our representatives may start to move any day now.

The administration might improve also because of reduced friction. For three terms now, DDS has sought to reduce the growth of its spending. Good ideas and bad ideas have come to naught (the resistance obviously being to ideas.) In our current predicament, the reform instinct ought to be nearly as common outside the Bateson building as it is within.

There are reasons a reforming government may not be a good thing. Some of the ideas that have come out of DDS for reform have spanned the range from simplistic to stupid, the statewide POS standards being an example of the latter category, and "discounted" rates an example of the former. But some, such as self-determination/direction and performance accounting have been inspired unaccomplishments. If the administration can focus on smart reform, to the purpose of more efficiently serving people with disabilities and the legislature can learn to say yes to good ideas and no to advocates as needed, then the California's burgeoning poverty may yet profit the state.

And a note on trust and reform

2009-03-18T11:50:00.000-07:00

Here is something in the way of reform: Who do we trust?

If a reform requires regional center discretion, such as the frequent proposal to require maximum cost efficiency from a vendor or allowing negotiated payments, most of the community won't trust the reform because we don't as a rule trust regional centers. We don't trust regional centers because as a rule, they aren't trustworthy. They aren't trustworthy because, as a rule, when someone at a regional center does something unwise, whimsical or badly, nothing unpleasant will happen to them. This tends to be true for individual service coordinators, executives, boards and middle managers. The community but for ARCA won't support reforms that empower the regional center to do anything because we all know well that regional centers are too empowered already.

If a reform empowers vendored agencies, we won't support it either. Take for instance, the example of proposals to have vendors rather than regional centers perform the service coordination function. The community won't support that reform to empower private vendors because the community doesn't trust us and the community doesn't trust us because we have not been reliably trustworthy. We are not reliably trustworthy because, in general, nothing bad ever happens to agencies for poor performance. Nothing bad happens to agencies for poor performance because nothing bad happens to regional centers for poor performance.

There are a lot of reasons that self-determined services (SDS) make sense, but I suspect one reason SDS offers the only recent example of reform (stalled as it is) must be that it doesn't empower anyone who has any experience with power to be proven untrustworthy. Not long hence, support brokers and financial management services must take their places as proxies for the politically untouchable clients as stereotypical reprobates. Soon, we will not trust them because they will not have been trustworthy because nothing will happen to the bad ones because nothing bad will happen to the people meant to oversee them.

Reliable accountability remains the reform needed before any other can be expected to go forward.

A note on DDS work groups.

2009-03-11T16:00:00.000-07:00

Today during the CDCAN town hall teleconference, DDS Director Terri Delgadillo mentioned the working groups she has convened to look at structural reform. Such working groups are typically composed primarily of association representatives and an aberration or two. Recognizing that these work groups are a step toward transparency and community input, a few questions ought to be asked.

How representative are the work groups?

How transparent are the meetings?

Do the work groups advance a reform agenda?

The first question is easy. The work groups are not representative in any important way. They do tend to be diverse ideologically in the sense that whatever CRA is calling itself now always defends congregate facilities and whatever Protection and Advocacy is calling itself now, had its staff been trained in the practical arts rather than law, would likely chloroform and kidnap every client that entered such a place. But there's a problem of selection bias in calling the work groups ideologically diverse. As long as CRA' and PAI' are at the table, congregation v integration seems like a more important issue than it does almost anywhere else. So, what passes for diversity tends be a divergence of limited viewpoints rather a collective voice. The work groups seem not to be meaningfully integrated into or representative of the greater community of people interested in the development or reform of our system.

I suspect if you could inebriate the architects of the work groups (and you generally can,) they would tell you that the real selection is based on getting buy-in rather than input. The first composition probably begins with the list of groups with the means to scuttle or inconvenience legislation, continues with the natural opponents of the first group, and ends with Connie L. This is politically smart, and as long as the goal is pacific politics, the process makes sense. But if the time for reform has come at last, workgroups made up of well known "stakeholders" with rigid "positions" will get in the way.

Measuring caps on the Mohs scale.

2009-02-20T15:25:00.000-08:00

There are several notorious topics to pick up after my sabbatical from this blog. My favorite format on this blog has been the debate format, so let's start with a discussion of the hard cap on spending which I believe will be on the ballot in May. (Part of the compromise made with Republicans for a fifth of their votes.) If voters approve the proposition (I'm guessing,) the spending side of the state budget will be limited to current spending plus a growth factor, likely to equal population growth plus inflation.

There's no question a hard cap causes realistic concerns for the future of this system and, more importantly, the people the system serves. But the notion not only attacks the principle of a community digging in to support the needs of their neighbors, it also defends the principle of good government. As with previous debate posts (here and here,) I'll post five arguments for and against a proposition and invite commenters to give their own opinions.

The proposition: A hard cap on state spending may benefit people supported by California's developmental disability system.

Pro:

1. With the size of government set in the constitution, the focus may move from polarizing and tiresome demagoguery to governance. The debate I listened to from the Senate Gallery on Wednesday and read in the press was a competition between a philosophy that taxes are the root of all evil and one that government spending is the sole source of earthly virtue. If the voters set the proper size of government, legislators can turn to subtler and more constructive discussions of priorities and process. Of course, we'll probably need a whole different set of legislators to grasp the concept.

2. Under a spending cap regime, voters will have to better interrogate their own values. As dismal as our legislators have been, their most meritorious action has been to claim to represent their constituents. In proposition after proposition and election after election, spending whether for water, punishment or people with problems seems to get our rubber stamp. If the hard cap requires that long imprisonments and prosperous prison guards must be weighed against help for people born challenged, it is entirely possible that we discover ourselves to be a little more Tamino with our neighbors and a little less Night Queen. A society that chose help for a struggling neighbor over vengeance upon an erring one might be easier for the disabled to integrate into.

3. A leaner system might produce better outcomes. Another way our State has failed to choose is between the well-intentioned control-freak and the good-hearted failure. Regulations build up in our system for good reasons but without any cost-benefit analysis. Meanwhile, the system does not discriminate between (or identify) functionaries and agencies that are highly productive and those that kindly serve badly. There are often many people who have to say yes before an individual can be served, or their services can change. Heaven alone knows how many people are struggling needlessly due to ineffective support. Hell has the accounting on needless regulatory costs. If this system has to struggle with choices, some of the energy and resources we lose might well be doing mild harm or weak good while stronger support is available

4. A trade-off between growth and predictability has value. The cycle has quickened from annual to pretty near monthly in which promises are made, budget crises confessed,promises revoked, outrage erupts and the promises get restated but only partially and decreasingly kept. It's hard to imagine who benefits from such chaos. A system in which per-person funding declined slowly and predictably might be better than such a volatile one, even setting aside that the funding outcome might not be worse. A learning system could probably improve efficiency and keep pace with the declines in capacity if those declines were predictable. Morever, it is unrealistic to think government can continue to grow sustainably as a share of society.

5. We have more important battles to fight. This is almost corollary to the point above, but I remember a conversation with the mother of a 40-year-old with autism when her son was about 32. My friend said, at a protest of budget cuts, that we haven't even started the right war yet. The important struggle has always been making the system work better for those it serves. At least since I got here in 2000, the urgent one has been funding. Steven Covey says that what is important but not urgent makes the best use of time.

Con:

1. Changes in the frequency and severity of developmental disabilities do not track the population and or correlate with inflation. Duh. The increasing frequency of autism, for example, had nothing to do with the factors which will ultimately determine the total size of the state budget. Once a hard cap is enshrined in the constitution, the state will lose flexibility to address important changes.

2. See #2 of the pro arguments. We might also discover that as a people we really prefer to persecute our neighbors than to meet them. In fact, I kinda do.

3. Competition for state funds favors the many and the well-funded. Even after clients, families, support staff and people of conscience are totaled up, those who fear crime, want wider roads and/or use marijuana outnumber us. Teachers, prison guards and ne'er-do-wells are more organized and wealthier. In an uncapped budget, there are two ways we can grow: by winning an argument with other beneficiaries or one with tax protestors. Under a hard cap, we can only grow at the expense of another beneficiary. What's more, other beneficiaries will see us the same way.

4. There is no reason to think our system will get smarter as it gets leaner. The record so far: We cut less costly and more integrated service modalities more aggressively than more expensive and segregated ones. We cut low-cost providers proportionally with more expensive providers of the same service. Most new regulations are written for the purpose of containing cost and avoiding risk, not to make services more efficient or integrative. The best and smartest advocates our system has had in the legislature haven't succeeded in making positive reforms. Nothing has been accomplished in my time here to make the market mechanisms in the system work to allow useful accountability, transparency or information to clients or family members. A cheap dumb system is unlikely to function as well as a prosperous dumb system.

5. Are self-directed services rolled out yet? Right. SDS in many ways represents a miniature of the best we could hope for from a capped state government and three gubernatorial terms have not brought it to statewide reality. Unpromising.

OK, y'all's turn.

A note about position papers

2009-01-14T17:00:00.001-08:00

I read the ARCA position paper today, and will just call it a proxy for all the others out there in order to save time. When the state has an unsustainable budget and the legislature has shown itself unable to think or act and you release a paper announcing your opposition to most of the cuts, the intended audience is fellow stakeholders not government. Kind of like the guy who raises his hand in class because he wants the attention of a classmate. Very thorough, although they seem to have left out their position on cuts to DDS headquarters. Can anyone tell me what else is missing?

Rushing Reform

2008-12-10T16:07:00.000-08:00

According to my good friend, Marty Omoto, Republicans in the California Legislature, while auditioning for hell, have argued that the state budget crisis should be resolved through "cuts and reforms." I have argued here consistently that reform would likely benefit both the system and the budget. I have also complained about the fact that legislators seek to cut the budget without streamlining the system. So I should be happy.

But this blog is filled with what I mean by reform. What the legislators mean, in this case, is making cuts and crossing your fingers. That's the opposite of reform. It is, in fact, the status quo, everyone too rushed to think about what they're doing and why and whether they should. So, by all means, lets get to reform. But fix the budget crisis first.

As to the aforementioned Brer Omoto, a fundraiser will be held December 15 to raise money for CDCAN. Information on how to contribute can be found clicking here. Marty and CDCAN have done more to democratize and link information and advocacy than any other person/organization and represent a crucial ingredient in any smart reform.

The Governor's New Proposal

2008-11-11T08:59:00.000-08:00

Well, that was fast. The three-month late annual budget lasted six troubled weeks and now the legislature is back in session, ordered by the Governor to redo the math. In the governor's proposal is a 3% payment reduction to regional center vendors and a 3% cut to regional center operations. Vendors and regional centers would be hurt a little. Also on the table are cuts to SSI/SSP, IHSS and MediCal. People with disabilities could be hurt a lot.

What ought to also be considered is how to make some of the cuts less damaging. For vendors and regional centers, that means relaxing some compliance costs. While the transition to genuine and efficient outcomes-based accountability will remain beyond the scope of the special session (and the grasp of the legislators,) authority could be given to DDS to reconsider some of its regulations on a cost-benefit basis. As of right now, regional centers and vendors have the power to reduce some of our more paper-centered activities. While accountability of some form is absolutely critical, there is a conflict between cost and agility on the one hand and compliance on the other. I suspect if we looked more analytically and honestly, we'd find we err far on the latter side. Of course, if we were more analytical and honest, we'd all be bankers.

The Obama rate increase

2008-10-16T09:33:00.000-07:00

Apologies for my absence, it's likely to continue, but I wanted to point up that the Obama economic recovery plan which will not occur regardless of who wins in the election includes a $3000 tax credit for small businesses who take on a new employee. For my colleagues in the executive directing business with high turnover, this plan could really add up. Be careful, though, spend it on wage increases and you risk killing the goose that laid the golden egg.

Channeling Paul

2008-09-10T10:17:00.000-07:00

In the comments to the post below, Paul wrote:

Doug,

Have you noticed that over the last several years we have “hammered out..” a budget that actually shrinks our opportunitu to hammer out one in the future? What I mean is this…

As we shift more and more to federal funding as an answer to our budget we become more and more enslaved to the whims of federal budget makers. Is this the Sacramento’s fault? Ultimately I would say yes, after all they are the ones that say yeah or nay.

But lets be fair – we do not need to search far to find fantasies and fallacies about unmatched state dollars, waiver, backfill, and outrageous numbers like 1.4 Billion in untapped federal monies. In fact, we do not need to search at all. The advodivas, the advocrates – the politicians are within our own ranks.

How can we not love a person that implies through poignant protestation that we are being short changed 1.4 Billion dollars? We love him or her just as we love the politician that tells us that he or she will cut our taxes and double our entitlements at the same time.

Until we can address our realities Andy words are axiomatic, “It does not, will not, cannot exist in our government.” Until we acknowledge that some of our efforts at home are, “little more than the brightly-colored bunting and balloons of a democracy”

I have noticed, just as I noticed that you said articulately something I've been trying to squawk out for the lifetime of this blog. Missing from his list is the amount of time, energy and audience we waste debating the prevalence of "classic" autism. There are a few problems that I would identify in our approach:

1. We argue with the idea of waste in the system before looking for it. If there is waste in the system, and we all know there is, it is interfering with effective support for people with disabilities and counteracting the well-spent funds. If there is waste in the system, identifying and eliminating it would be that much funding we would not have to defend. That we find so many ways to fight against the unexamined implication also allows those who would cut our finding to decry wasteful spending without expectation of quantifying it.

2. That we even care what resources might be available takes the conversation away from the mission and into the money. We will never win an argument about money. We have people who need and deserve our support. They are compelling people, sympathetic people and above all, people. It is easy to not care about acronymmed arcana like FFP. It is hard to dismiss a human striving to overcome a profound challenge.

3. Nothing depresses me more than the number of my dear friends in the DDS advocacy community who have been saying for 8 years that we can't start the important fight until funding is secure. Funding will never be secure. As long as you think funding comes first, you have surrendered the battle for everything you say matters.

How to have self esteem when you're a DD service provider

2008-09-02T10:37:00.000-07:00

I may be, as a social services chief executive, a member of a despised class rightly suspected of promoting unaccountable, dishonorable and inefficient expenditures.

I may be, as an advocate, a typical charlatan using blubbery words to ask my neighbors to place my interests above their own.

I may be, as a blogger, the tea-totaling equivalent of that obnoxious souse at the bar holding forth on matters beyond his ken as if an alcoholic haze were a worthy substitute for any actual knowledge.

I may be scandalous, stupid and self-important, lazy, long-winded and loveless but I am not a California legislator, Alhamdulillah!

The opportunity for Democrats and Republicans to demonstrate their commitment to principles has passed and it passed with no creditable gestures toward principle.

The opportunity to hammer out a smarter, leaner or more compassionate and just budget passed with no apparent fervor for smartness, leanness, compassion or social justice.

It is time for the legislators to stop pointing at one another. It is time to vote for a flawed, inefficient, stupid budget because this year's budget has gestated too long not to resemble its parents.

Selah

P.S. The above was provoked by an email sent by State Senator Dutton to supporters sharing Pete Wilson's criticism of Schwarzenegger's budget plan. In all likelihood, all of his colleagues in both houses are sending similarly sanctimonious and second-hand commentary to supporters (more and more loosely defined.) As a supporter, I wanted to explain the following:

Drug dealers may be predators, but they perform.

Government contractors may be parasites, but they are humble.

Undocumented workers may be illegal, but they do what they are paid to do.

People with severe enough disabilities may not be as economically productive as their non-disabled peers, but many accept wages in consideration of output.

In short, there is nobody in this state that any member of our legislature might wish to punish, prosecute or patronize who is not a better public servant until a budget is presented the governor. Until then, criticize no one.

Capitalism, Freedom and Inclusion

2008-07-14T15:15:00.000-07:00

I have been re-reading Milton Friedman's Capitalism And Freedom, may God have mercy on my wretched soul. Here is a passage I find relevant to the discussions here:

"The characteristic feature of action through political channels is that it tends to require or enforce substantial conformity. The great advantage of the market, on the other hand, is that it permits wide diversity."

Far more elegantly (and probably more glibly) than I have done, Friedman makes the case that I have tried to make (e.g. here and here,) that in asking DDS to provide too many assurances we not only create inefficiencies in the system by encouraging more central planning of the lives of the individuals served, we also undermine the inclusiveness the society we claim the intention to open. Following Friedman's argument, the more activist we ask DDS to be, the less able our system will become to model the inclusiveness we promote.

"...a major source of objection to a free economy is precisely that...it gives people what they want instead of what a particular group thinks they ought to want. Underlying most arguments against the free market is a lack of belief in freedom itself."

Incidentally, openness to diversity includes patience with extreme nerds, For those interested, the reason I am rereading this book which was written the way Alan Greenspan speaks is an online book club being hosted by Free Exchange, the economics blog sponsored by The Economist newspaper's online entity. Anyone unlovable and fascinated may wish to participate but please behave and don't tell them I sent you. My subscription is my only friend besides my dogs, and they're Keynesians.

Entitled to what?

2008-06-25T09:46:00.000-07:00

Paul, maskless, brings up a very good point in the comments for the aging post below. He states "Since I have found wide and interesting interpretations of the Lanterman Act I want to start where I hope we can agree. Client or families [SIC] goals are not implicit entitlements under the Lanterman Act."

I'm inclined to agree. One of the challenges to the present system and any future better one is distinguishing between the outcomes of support and the results that are in the control of the end user. It is fairly clear and I suspect uncontroversial that the entitlement is to service and support for the purpose of moderating the affects of developmental disabilities on the lives (goals) of the individuals served. I might argue the proper outcome measurement for a service provider or regional center is a process measurement for the end user. The quality support may not have to result in a person with disabilities experiencing success, but in their succeeding or failing the same way a person without disabilities would.

And yet, much disenchantment is with the event that people with disabilities are still unhappy and/or unfulfilled after receiving services. Here lies one of the problems with using client satisfaction as an outcome. Another lies in the fact that achievers are rarely satisfied.

I'd be interested to hear your thoughts. Especially yours, Stanley, you old crank.

Incidentally, Monday marked the fourth anniversary of this blog even if I didn't. Thanks to all of you have joined the conversation over that time.

Families and Reform

2008-05-30T14:59:00.000-07:00

The Apostle Stanley is stirring it up in the comments in the post below this one, comforting the afflicted and afflicting the rational. His comments have inspired some thought on my part, no mean accomplishment.

If you look through this blog over the years, those reforms I argue for most consistently: transparent and public outcome evaluations of programs and policies, self-determination and its pale cousin self-directed services and value-stream management share a common assumption: That end users of the system, given the means and opportunity to do so, will choose quality supports providing the maximum likelihood of achieving the client or families goals. It is on this basis as well, that I tend to kick against top-down, regimentary solutions such as those Stanley suggests.

I make this assumption in direct contradiction to some experiences I've had. I am often at meetings with groups of clients and/or family-members gathered for the purpose of advocacy. Often at those meetings, complaints are rife towards service providers and regional centers. The commonest answer to "have you discussed this with your agency/regional center?" seems to be "I am afraid they will retaliate." The commonest response to "Have you considered changing agencies/service coordinators?" seems to be "It's a lot of work and, anyway, the next one might be worse than the last."

I recently told a good friend after one such meeting of my suspicion that if mediocrity in a service provider cost money, excellence would abound. Likewise, I suspect that if listless service coordination made extra work, service coordinators would struggle to be responsive.

I am sure fears of retaliation aren't entirely unjustified and I certainly grant (and assert) that discovering quality supports is impractically hard. But, if end users won't seek alternatives to poor service, then Stanley is probably right, the only way this system will get any better is a top-down process that will also make it less creative, innovative and diverse.

Well, that was kind of sensible, mostly

2008-05-15T06:35:00.000-07:00

As some of you might have heard through a friend of a friend, the Governor's May Revision of his budget is out. It did not live up to the Cassandaric expectations that I and others had. There is no apparent further cutting to DDS' budget, although there are further reductions due to lower caseload which can mean either (A) we have looked at the data and the trend is lower than expectations or (B) we have some evil plans so subtle that to announce them would be like putting marzipan on a gourmet gateau. It will be worth asking questions about that.

In some ways, I have to say I'm a little disappointed. First and least, because I think the sustainability and stability of funding is more important to what we do than sufficiency, and I'm skeptical that such a large budget gap can be honestly solved without more pain (and fewer 'S's.) Secondly and more importantly, because this system is so reluctant to change, even for improvement's sake that budget crises are usually the minimum requirement to discuss reform. Thirdly, I'm pre-emptively disappointed because the various associations, providers and regional centers are generally much more vigorous in defense of Regional Center cuts, than when the cuts bypass agencies and harm clients directly as is the case in the May Revision. The eye-catching cuts are to CAL-WORKS, which many people with disabilities use, IHSS which many people with disabilities use and Medi-Cal which most people with disabilities use.

So the question is: If we could reform the DDS system to provide more value with less money given a promise* that any savings would go to backfill IHSS, Medi-Cal and/or CALWORKS what would we, as a community, do? If the answer is nothing, we deserve much worse treatment than the administration has so far given us.

*I'm not sure it would be wise to believe that promise, although "why save money for people with disabilities to protect prison guards" is both a realistic and depressingly cynical response.

***6/5 Update: I learned a new blogging trick, by Jim. Comments are currently closed on this topic but open on all others. If you find this outrageous, please contact me or leave a comment in the post above. If anyone wishes to email me and doesn't have my address, it can be obtained by clicking on my name under "Contributors" above and reading down the left hand column of my profile.

What's not in the DDS Report, Controlling Regional Center Costs, Part II

2008-04-28T16:06:00.000-07:00

Another cost-saving, service improving fantasy of mine is the idea of outcome- rather than cost-based payments. The idea is similar to Self-Directed Services but would be more appropriate for those clients less able to manage their own programs. The idea is that specific outcomes can be priced based on the difficulty of reaching them and a general idea of the individual's special challenges. This method can improve services and reduce costs to the extent that:

1) The objective is clearly defined and observable. "Adolph will maintain optimum health" or "Joanna will be happy in his home" are not the quality of IPP goals that work best for this.

2) There is sufficient information, honestly (!) brokered on behaviors and other non-obvious challenges to be overcome.

3) Clients do not reach their own objectives currently because the system's incentives are geared toward maintaining the status quo or, worse, letting crises develop.

4) The cost-based approach is absurd and inefficient, except as compared to the rate structure it generates.

Granted this is so different from what we do now, that lots of input would probably improve the suggestion, but the basic idea is that the objectives would be priced and agencies willing to undertake the job could be interviewed by the client. An agency that delivered success for clients in a timely fashion would be overpaid according to current standards, while an agency that was unable to accomplish the client's goals would not be paid at all.

There is a danger that clients who are hard to work with, have more audacious goals, or present greater risk will be hard to find support for at any price, so the method might never safely replace the current model for everyone.

What do y'all think?

**UPDATE** The scary smart friend I referred to in the earlier post emailed me to look up 4648(a)7 in the Lanterman Act in reference to this post. It reads:

(7) No service or support provided by any agency or individual
shall be continued unless the consumer or, where appropriate, his or
her parents, legal guardian, or conservator, or authorized
representative, including those appointed pursuant to subdivision (d)
of Section 4548 or subdivision (e) of Section 4705, is satisfied and
the regional center and the consumer or, when appropriate, the
person's parents or legal guardian or conservator agree that planned
services and supports have been provided, and reasonable progress
toward objectives have been made.

I think a lot of things about this line of code are interesting, both in light of this post and also in light of the requirements that no service can be discontinued without the agreement of the client or the opportunity to appeal. A tension between two statutory requirements, resolved through universal noncompliance. But to the point at hand, I'd say that discontinuing services that produce no results is a good way of involving some little bit of natural selection into the process (in other words, a well-conceived ignored statute,) but you can improve on that by allowing agencies that achieve results more efficiently to capture some of the benefit of success. This is likely the only way that excellent workers will ever be paid significantly better than indifferent personnel.

What's not in the DDS Report, Controlling Regional Center Costs, Part I

2008-04-14T15:52:00.000-07:00

OK, first of all, my purpose in adding this post is not to cut off commentary in the post below. Feel free to read and comment on either (or neither.) But I am in the mood to expand on my own snarky comment regarding socialism. Here is the first of some ideas I would have added to the DDS report had it been my honor to write it. This will be the first in a series of one or more proposals to control regional center costs and improve service through deregulation.

Eliminate vendor codes: Whatever the intention of the vendor codes, the principle functional purpose they rightly serve is to limit the breadth of service a single provider can offer, lowering the quality of the services vendors provide. The (likely) unintended function is to foster service denials by implying, at least sometimes, false redundancies. This reduces the flexibility of Regional Centers. A tertiary function of the service code is to waste regional center operations budgets on distractive, unproductive idiocies which then discredit the notion that non-profit boards provide guidance.

Finally, vendor codes probably add administrative costs needlessly by requiring different needs to be met under separate administrative arrangements. For example, if a person receives job-coaching but also needs help budgeting, cleaning their apartment and socializing, that person will generally be helped by three different agencies or at least three separate divisions of one agency with separate staff for the employment assistance, living skills and social assistance. This means the state pays for the liability insurance three times, the administration three times and the training and recruitment three times at the vendor side and the quality assurance three times, the service coordination three times and the billing three times on the regional center side. (Plus all the ~~unproductive~~ time spent by core staff at regional centers trying to cleverly craft changes to the purchase of service policies and get them rubber-stamped by glassy-eyed board members.) Meanwhile, the client gets possibly triple the number of people to work with and is at risk that some need will not be met due to limitations placed on the vendor categories.

The vendor codes help the regulations to address specific service designs that address specific needs specifically but there are two reasons this might not actually be helpful. First, if you read the service standards portion of the California Welfare and Institutions Code, Title XVII - Division 2, Chapter 3 which defines the service codes and cross out all the regulations that are not typically monitored or enforced, too vague to provide clear guidance or that essentially self-repeal (cf section 56742 (a)(3-4)) you might easily be left with nothing but paragraph numbers and the vendor codes themselves anyway. The second reason this might not be important is that it is a fundamentally agency-centered approach and directly contrary to the person-centered approach we pretty much all claim is holiest and most efficient. (Note: This last point is the commonest hypocrisy in our system and your correspondent is usually guilty of it before swallowing the lees in his first cup of coffee.)

(Anecdote warning) My biggest regret from all my time in this field is this: Once upon a time, when I had done this work for about a year, a man who gave his name as Michael called and said he wanted to hire ¡Arriba! using his own money because he was living in a group home and the "independent living training" he got from the home wasn't helping him to move out (!) on his own. He said he had asked for ILS training from Lanterman Regional Center and been told that ILS services were not available to people who live in group homes because the group homes were supposed to provide that help. The thought of letting a client pay privately for services the regional center center should have provided was appalling but I have regretted ever since not asking his full name or offering help to get ILS into his IPP. This anecdote serves two purposes in this post: The first is as a caution that sometimes it can be a very good idea to have more than one agency provide services to the same individual, such as when there's a conflict in interest like expecting a residential facility to help an individual move out. Second, that while I sadly do not know the details of this case and there may have been logic to the regional center decision, it is not hard to imagine a case where a situation far better for an individual and far less costly to the State was foiled by a policy defined in terms of vendor code. Can anyone imagine a case where needless expenditures are reduced or client value added through categorizing services?

Advantages/Disadvantages: Advantages of this option include (1) Cost-savings through reduction of unnecessary administration, (2) improving the flexibility of service providers including regional centers and their vendors to be of use to clients, (3) simplifying the regulations, (4) a key step toward value-based rather than cost-based budgeting, (5) a person-centered approach to service design, coordination and implementation and (6) reduction in greenhouse gas emissions. Disadvantages include (1) costs related to retraining senior management at several regional centers to do something productive or replacing same, (2) creepy feeling that once-reliable service boundaries are giving way to free love and poetry slams, (3) priestly positions lost, some unionized and (4) loss of scale economies related to optimum use of the boards' rubber-stamps.

Total Savings: Indeterminate.

Hey, look, the DDS folks get paid to do this. You have to admit, though, green for advantages and red for disadvantages was inspired.

**UPDATE: A good friend who is also scary smart just emailed that CMS requires service codes for the waiver, which is either a deal-breaker or a proposal-changer, depending on A) what level of definition CMS regulations require of the service code and B) how the service codes are required to be applied. California defines programs by service code, but if CMS does not require that it may be possible to code for instance, activities or needs rather than programs after the fact. This was how hospital billing was often done back when I knew about hospital billing. Also, depending on CMS' definition of service code, it may be possible at least to broaden the definition to achieve some of the goals in this proposal. For example if there were one service code for housing and supervision, one for medical supplies, one for each regulated professional service and one for all others including SLS, day programs, ILS, supported employment, respite, social/recreational, waste, fraud and abuse.

Controlling Regional Center Costs.

2008-04-11T11:07:00.000-07:00

The California Department of Developmental Services (DDS) has produced a document entitled "Controlling Regional Center Costs." (You can click on the title of this post to download it or read it in your browser.) To my eye, the document is very carefully written not to give license for foolish cuts. Once you have read most of the proposals contained you would have to be as dumb as box of rocks to consider smart. Also, for those in the panicky state of fretting that this report represents an assault on the entitlement or a murderous conspiracy, it ought to be noted that some of the most favorably described cost control measures are preventive, such as investments in better dental care, expanding employment and affordable housing. I would give some laud and honor to the writers for careful wording.

This may be the first of a series of posts on this report, the next likely to deal with selected proposals but start with two questions:

Given the past experience of DDS reports and their influence on policy-making, is it likelier that advocates will pay too little or too much attention to this? The Service Delivery Reform report opened few doors in Sacramento but it has held a lot of doors open.

Why is socialism the only answer to reduce government spending? An ongoing frustration of mine is that all the virtues of the Lanterman Act as a mechanism for efficient, responsive care depends on innovation, creativity, liberty and choice. It continues to depress me that centrally defining, regulating and limiting what can be done is always the response of government, and frankly, of most of our advocates. We love to talk about innovation and creativity, never more than when we find some new way to instruct our neighbor.

And, friend Paul, I promise that none of the posts regarding this document, if there are more, will discuss or promote funding as a purpose or point. That's not what I do here, and really isn't what I do in Sacramento either.

Leadership

2008-04-02T16:06:00.000-07:00

One of the perpetual issues in the system is that of leadership development and the good friend who scolds me behind the scenes when I go long between posts has this issue often on his mind. So, good friend, here is a post in which we can discuss leadership.

Leadership is one of those things we mostly all yearn for but, like other nearly-universal human hungers, we may disagree on what kind of monkey we want to be satisfied by. In a system in which power, control and sovereignty are the largest common currency, leadership generally may even be dangerous. I suspect some would say we don't produce enough leaders to meet demand and Tom Pomerantz' touring schedule supports that position. Others argue that we are producing plenty of leaders in the form of plain-spoken clients and uncomfortably empowered family members (cf. Stanley) but that these leaders are A) Too locally focused and personally interested to lead in harmony; B) Not listened to; and/or C) adorable but hardly authoritative.

If you all are waiting for me to say something smart about leadership, that had also been my hope but I think I'd best turn the floor over. Here are some questions:

1. Do we need more leaders?

2. Can we develop leaders without indoctrinating them? And if not is it leadership we're developing?

3. Do you agree with Voltaire who is often quoted saying he would rather obey one lion than 200 rats?

4. If herding cats is the paragon of leadership in chaos, what is being herded by a herd of cats the paragon of?

Two bills.

2008-03-25T10:33:00.000-07:00

There are two bills we are supposed to be talking about, AB 2424 (Beall) and AB 1192 (Evans.) Both seem simultaneously well-intended and not helpful but I'm open to having explained to me why the bills are either diabolical or useful.

To summarize briefly, AB 2424 is a wide-ranging 30+ page concoction meant to implement for especially transition-age children with developmental disabilities some of the recommendations of the SB 1270 hearings. Long legislation makes my head swim a little and I definitely need a second or seventh reading but one thing jumps out at me immediately: The law puts a lot of mandates on regional centers to, for instance, do timely IPPs and to have a bias towards work in an integrated setting. We've discussed before here whether or not that bias is appropriate but what is troubling me is that there are already IPP-related mandates that are complied with, if not never, within the statistical margin of error of never. Fair Hearing rights would be one example.

Until there is some evidence that the legislature controls the executive branch and DDS can and does require compliance with regulations from regional centers, any legislative input into the IPP process seems either pointless or cruel. To put in the funding contract language requiring compliance is entirely pointless without monitoring and enforcement, which is why no DDS client has ever (with a confidence interval of p=95%) heard of their fair hearing rights unless they were themselves intrepid researchers or were assisted by a wise parent or craven vendor.

AB 1192, which I have also heard referred to as AB 1983 (maybe a pet name) is similarly clearly well-meant and otherwise baffling. This bill will require establishment of an abuse registry, require that service providers consult said registry and forbid service providers from hiring people listed. Like the pursuit of integrated employment opportunities, the rationale is unassailable. I imagine every other ED, like me, loses more sleep over the prospect of employing an abuser than over funding which is otherwise everything we love. What I can't figure out is the value of the registry. It seems to me that if a person has been convicted of a crime including abuse, that conviction should appear on the criminal background check we are already required to do. If a person has not been convicted of a crime, it seems abusive and, perhaps, unconstitutional to prevent that person from working on the basis of a crime they have not been tried for and found guilty.

So, I guess there are two points we can discuss here. The first is: What don't I get about these bills? Is there a reason to support them other than their intent? The second is whether it is harmless to pass harmless legislation or whether such legislation causes damage as a distraction from important advocacy that otherwise might be done.

Brer Stanley, I know you have in the past expressed enthusiasm for 2424. Educate me, please.

Whose quality?

2008-02-29T15:04:00.000-08:00

Inspired by Brer Stanley, our new topic for debate is about quality. Quality is something we all agree is important and then, by and large, ignore. People who have read this blog in the past know that the opinion here is that the single most important reform we could make to our system is ongoing evaluation of the quality of programs, regional centers and policies on the basis of outcomes. Here's the tricky part: We just debated whether choice is or is not more important than integration. If it is, there's a challenge to the measurement of quality. It is very hard to standardize the evaluation of choice because standard measures need to be valid , meaning that the metric must measure what is designed to measure and be counted the same way by different surveyors. So the challenge will be developing valid metrics to gather statewide while honoring choice.

One model, the one used by HSRI, for instance, I think, is fairly strong on validity but weak on choice. Even if you evaluate based on whether a client reports being given a choice, if every other metric assumes the state's preferred outcome and rewards for it, the pressure is to treat all people with developmental disabilities as if their most intimate decisions are to be pleasing to the people at the Bateson Building in Sacramento.

The common alternative model, I think of it as the JN or LQA model, is to have a deeply considerate and subjective evaluation so cumbersome it typically sits on someone's shelf unimplemented.

A typical Life Quality Assessment was kind of silly because it was so subjective that which day of the week a client was interviewed could alter the entire result. A more valid survey biases every professional in a client's life toward state policy and away from the person served.

So, the question to you all is: Is it better to employ a highly valid system that might counteract client choice or is it better to use a subjective system which honors choice at the expense of usefulness or is there a better or more balanced solution?

The Great Debate: Congregate?

2008-02-01T10:01:00.000-08:00

An issue that comes up often in backrooms and private conversations but rarely in open policy discussions is whether the State should establish a preference for non-congregate supports as matter of law. The discussion we just had was so much fun, and thanks to all who participated, that I would like to see if we can't continue discussion. I'll play a similar role to the one I played on the 22nd, where I'll introduce my understanding of the two sides in the discussion and ask skeptical questions of the people who leave comments. As before, you are welcome to be as anonymous as you like, but please choose some form of address so that if people want to take up your points and support or challenge you, they can make clear to whom they are referring.

101: There are, as there should be, many ways that people with developmental disabilities are served. A distinction can be and is drawn between "congregate" support and "community-based" support. "Congregate" support is often delivered in a licensed facility ordained to the purpose of assisting people with disabilities, most often with paid staff who, at any given time, are responsible for more than one supported person. "Community-based" support is generally delivered in places not otherwise dedicated to people with disabilities in particular and there is typically one or more paid staff-person assigned to concern themselves with each supported person. Exceptions to the preceding are probably rife, but I think that will do for the needs of a blog. Common examples of congregate services are residential facilities where people with disabilities live under supervision and day activities designed to occupy the supported person's time away from home constructively. Common examples of community-based services are wrap-around individualized services intended to secure individuals in homes and lives with maximal sovereignty and liberty. There are few, if any, voices arguing that more congregate care is our best future and it is almost as rare to hear anyone argue that tomorrow all the congregate care in the State should be shuttered. So the argument is generally whether incremental and intentional shifts toward community-based care should be centrally directed or whether the state should remain neutral on the mix of services employed.

The Proposition: The State of California should change statute and promulgate policies in order to prefer community-based services for supported individuals to congregate services.

Introduction and an observation: In all likelihood, there would be no debate, the hopelessly contrary excepted, that people with disabilities should be safe and well, pursuing goals of their choosing and fully integrated into the community. Taken together, those three aspirations: Safety, choice and integration are always supported. In the practice of people living lives, those three virtues are often in conflict with each other and different people resolve those conflicts differently. In his first letter to the church in Corinth, Paul wrote of three virtues: faith, hope and charity, stating that of the three charity was the greatest. I would contend that this debate is really a dispute over whether safety, choice or integration is the equivalent of Paul's charity in the scriptures of California Welfare and Institutions Code, Title XVII.

OK, so here are my top five pros and cons to the proposition above:

PRO:

1. While congregate services may be of great value to the individuals served, they do not fundamentally change society's view of people with disabilities. Only the presence of people with disabilities in full view of and participation in society will change how those unaffected by disability see their neighbors.

2. Efficiency is a subtler thing than people like to claim. If community-based services cost twice what congregate services do "per unit" but deliver thrice the satisfaction, freedom and social value, then community-based services are more efficient, not less.

3. As the costs of legal liabilities and risks grow, models of support in which the State and its agents have less direct responsibility for the safety of the individuals served grow less costly compared to site-based care. As quickly as the cost of staffing, the main component of individualized support, has grown, the price of insuring facilities may grow much faster.

4. None of us are free as long as one of us has their toothpaste chosen for them.

5. People with "developmental disabilities" have adapted and grown with support much more quickly and easily than the support itself. For the state to remain neutral on the evolution of the system is actually to be biased toward older models.

CON:

1. Policy makers can not dictate the values of the individuals served.

2. Whatever models of support may compete in the marketplace, choice is always more efficient than policy-making. Those who provide wrap-around individualized support know how much money, time and effort gets wasted replacing jobs for people who intentionally and cheerfully engineer their own firings.

3. There is a subset of people served by this system whose medical and emotional needs are unmanageable without support and who would be spectacularly expensive to help if their needs weren't served together with others. If we're honest about the resources available to us, such as specialized nurses, there is probably a subset of people it would be impossible to serve except in a congregate setting.

4. As an 18-year-old girl I was trying to help find integrated activities once told me. "I don't like normal people. Don't you have a group with people like me I can join?" As a 55-year-old woman I was trying to help find a generic job told me, "Stop treating me like I'm normal. I'm not normal." What no policy maker, program director or advocate can do is go back in time and undo the message some people with disabilities have taken to heart they belong to a separate group. To ask frightened individuals with disabilities to bear a special cost for our joined past is unfair.

5. The Lanterman Act itself does not divide history. The institutional mode of "support" was an expensive failure. The fact that residential facilities and day programs were created under the Lanterman Act as community-based alternatives does not mean they don't replicate the model. The trend of history is the fading of institutions and the rise of the individual. 200,000 people increasingly unaccustomed to segregation can decrease the prevalence of congregated care on their own while the State maintains it's integrity by not choosing between choice and integration.

OK, friends: Whatcha got?

Brand New Same Old?

2008-01-22T08:54:00.000-08:00

A good friend wrote to me with a comment on my previous post below.

The email read, in part, "ok-- i agree with your points- but trust me - sds will end up being mostly same old same old."

This is worth discussing. I invite my friends who lurk here, cross post to list servers, and/or read out of a sense of friendly obligation to discuss this in the comments section. Comments can be left anonymously but on the off-chance a conversation actually develops here, I ask for this: If you comment anonymously, please use a pseudonym or unique signature so participants can respond to your comment with some form of address.

Five reasons to think self-directed services, SDS, will be a new, more valuable and more efficient model of service delivery:

1. Program design belongs to the person or family served. A client-centered design is not guaranteed but it should be the most natural result. In the traditional model, the wisdom, insight, bias and preference of the service provider and service coordinator are the most likely guidance.

2. To the extent that accountability and oversight are transferred away from the regional center to the people served, inefficiencies in defining, assessing and assuring quality are significantly reduced. These inefficiencies in the traditional model widely deplete fiscal resources, human resources and efficacy.

3. Layers of overhead can be eliminated. Vendorization of service providers, reporting requirements, worker's compensation, mandatory reporting, employer liability, general liability are all provider costs that can be eliminated or reduced under SDS, especially where the client does not use a co-employer agency. Insurance for SDS clients is a brilliant investment for SDS dollars where staffing is involved.

4. To the extent that decision-making is located in the client's home, rather than in the broker and/or regional center, the iterative reviews of client choices that inhibit both creativity and dispatch can be reduced. For those of you who were reading during the series on Value Stream Management which began here, this represents an efficiency improvement referred to as making the value stream flow.

5. As neighbors and system civilians replace agencies in the provision of some supports, natural supports in the community can be constructed and strengthened.

Five reasons to suspect that SDS will turn into the same old corruption we're saddled with now:

1. The development of the regulations followed the same process of speculative problem-solving that many feel inhibits creativity and thins the robustness of supported living. I have argued here that regulations for the system have been overwritten, undercomplied with and often ambiguous, detracting from the very virtues of efficiency, market-driven discipline and individualism that characterized the original intent and intelligence of the Lanterman Act. These regulations are well-intended, thoughtful and smart but it is probably the nature of regulation writers to see regulations in too positive a light and, what's more, California regulators have to harmonize with the habits of federal lawgivers. There is no reason, based on available drafts of the upcoming regulations to think SDS won't be over-regulated, stiffening the flexibility we look to for a better model.

2. While brilliant people have made sincere and thoughtful cases for the exclusion of people being served in congregate settings and allowances have been made to overcome that criterion, the concern remains that the most costly, least person-centered and most confining parts of the system have been protected from the reforms involved. This also means those who can benefit the most from SDS will be excluded. This creates two risks: The first, that salutary results will be diminished, reducing enthusiasm and advocacy the program will need to survive or thrive. The second, that as the more individualized and person-centered supports grow leaner, the already expansive portion of advocacy and consultation offered by bulkier, less responsive agencies continues to grow.

3. Scoundrels are scoundrels wherever they gather. The regulations leave a lot of room for regional center input and control. There's no certainty that service brokers will function as envisioned. The same bad habits that attenuate the virtues of the current system can easily thrive in the new system.

4. While some regional centers, including the five pilot sites and San Gabriel/Pomona have shown commendable enthusiasm for the new program, it will not be difficult for regional centers leery of SDS at the management level to undermine, redefine and/or disincline the engagement of the program.

5. The spontaneous occurrence of idiocy remains a distinct possibility. By idiocy, I offer this example. Stupidity that limits the flexibility of service models intended to provide responsive, person-centered care and justified by incomprehensible paeans to quality, person-centeredness and "the principles of the New Day conference" not only occur but find limited resistance and meet little reason. If Westside and Orange County regional centers can do it to ILS, they can repeat with SDS. Two or three years out, look for regional centers to propose converting SDS into a formal congregate steeplechase and be met with a resounding "um."

Your turn. Discuss.

A return to Heurism and/or Wereism

2008-01-16T11:59:00.000-08:00

This is the one hundredth post on this website, a cause for celebration no doubt and maybe kindness or neutrality. To think without cynicism is to hear the beating of angels' wings through a bird-splashed windshield, but I have had some thoughts recently about how the "Support broker" position in self-directed services might develop differently than it is conceived so far.

As presented, the position is largely designed to provide for two functions, that of a person-centered plan-writing guru and secondly as a clearinghouse for referrals to appropriate resources available for SDS client/managers to fulfill their plans. Without disparaging either function, I wonder if there aren't roles of greater value into which the service broker role might grow, much as ILS agencies have changed wherever permitted from the role initially conceived to a more valuable one unforeseen but unprevented by regulations.

While person-centered planning as a brand-name set of operations can be a wonderful contribution to the service and support people receive, some of that value may be diluted by the self-directed aspect of self-directed services. What's more, as much as I and ¡Arriba! have been and continue to be boosters of Essential Lifestyle Planning and person-centered thinking, we have been boosters with a sneaking suspicion that the basic ideas are more important to advocates on average than to the people the thinking is meant to be centered on, paradoxically. It is almost certain also that "person-centeredness" has a much wider dominion as an amorphous catchphrase translating, approximately, to the English "Holy" or "Pious" than it does as a practice.

The clearinghouse function will, for many SDS clients be sufficient and magical. If a client's purpose is to recreate at lower cost and with greater control the traditional one:one services they've received, and that client lives in an environment with a high density of people with disabilities, then their purpose is a grand one. For these SDS clients, an advisor who makes a business out of knowing who is providing what supports at what costs and how their clients seem to enjoy the service can be very valuable. In more rural or less-served communities, in languages spoken by very few, and to people whose purpose with SDS is to more creative than, say, replacing supported employment with a look-alike SDS equivalent, it is not clear what breadth of knowledge would be necessary to make a service broker a useful expert, or how they could possible charge enough for such expertise.

So, with the wisdom of a service broker whose caseload is expected to double this month from one to two clients, I will speculate out loud that a primary function of the service broker will be as a management consultant to SDS clients. It has been such a long fight to acknowledge that people with disabilities, themselves, have the best ideas for what they value and need, that we might have grown reluctant to acknowledge that other capacities, such as designing and managing programs that work are learned skills. There is no reason to assume that any given SDS client will not be a brilliant manager and reliable planner, but there is also no reason to expect her neighbor to be.

If you look from agency to agency- ok we've established this doesn't happen- if someone would look from agency to agency with an eye to quality and efficiency there might be a wide variation. For SDS clients who have to depend largely on themselves for their success, that kind of variation endangers the success of the SDS program and the wellbeing of clients who don't get it right away. Regional center staff, generally, will not be able to provide advice on program management any more reliably than clients will intuit that knowledge instinctively. However, a service broker with experience in program management can provide real value toward greater success and security of individual SDS programs. For some subset of SDS clients, management consulting will be the most valuable function of a service broker.

What does this theory require of us now? Probably nothing. While the SDS guidelines will probably over-regulate who can be a service-broker, the basic function of management consultant is not forbidden to service brokers. It is always worth remembering with new things that unexpected results might be salutary. I think the only policy suggestion I have to offer for now, is that when the time comes to review and improve whatever regulations are about to be promulgated, that some thought be given to a more nuanced method of preventing conflicts of interest if to do so will improve the quality of service brokers.

An illustrious and heuristic new year to us all

2007-12-31T09:36:00.000-08:00

So, an anonymous friend or stranger, commenting in the post below, reminded me that I started this blog to be an undisciplined but thoughtful problem-solving forum. A cruel reality that I think needs to be held up before I return to my original purpose is this: This year's "reform" discussion is doomed to stupidity because no credible and systemwide effort to measure, identify, examine or rationalize what actually happens in this system has been performed and the pressures against the cost of the system are too urgent. I expect smart and well-intended people using all the information tools available to put forth ideas for gently reducing the funding our system. Those people, if they believe they know how the system works now and where the problems are have over-rated their guesses and gossip.

But, maybe in the midst of the coming catastrophe, there will be opportunities to talk about accountability, transparency and adding features to the system that will make it smarter. Here's my new year's list of topics I hope will be seriously discussed.

1. Those of us with client-level perspectives know that the regulations guiding this system are routinely not followed. In the end, we need to decide if we believe that a client-centered system is truly more valuable and more cost-effective. If we do, we need spare and judicious regulations routinely followed with consequences for those who ignore the rights of clients to guide their program plans.

2. Efficiency, the economic concept, unlike the political euphemism, "efficiency," is the heart of justice. In an efficient system, some of us would lose our jobs but those most vulnerable in the system including clients, direct-care workers and families would be likelier to benefit from the money and effort spent. The honest definition of efficiency is the value added for the cost expended. Skilled and management workers need to understand that a more efficient system might need some of us less, but moral individuals should be ready to be counted in that number. I can still fix old cars and might get my roping back with practice.

3. The system needs to get much, much smarter. We don't measure and track outcomes. At the policy level there is no hopeful way to direct resources where they will help the most. At the client level, there is no reliable way to choose the most helpful support among alternatives. The cost of neglecting the intelligence of our delivery model will be tragic this year. If vendors, regional centers, unions or other stakeholders seek to delay or deter transparent evaluation and easy access to information about quality, they deserve to be ignored or over-run. It is a very late hour to start this conversation in earnest.

4. There is real magic available in self-directed services. The regulations are too many and the funding too sparse for some people to benefit but for those who can make it work, significantly lower costs and better quality of life will likely be the rule rather than the exception. The silver line around the gathering squall is that SDS will appeal to many who have been leery of it. First chance we get, though, those eligibility criteria should be revisited and relaxed.

5. Be kind to the grouchy, negative, critical and portly.

Best wishes to all of you in the new year.

The end is nigh, eat at Joe's

2007-12-10T13:34:00.000-08:00

The $10 Billion deficit the State is facing is likely to deepen rather shallow and most of the tricks we've been using for the last five years are no longer available. Cuts to the Department of Developmental Service's budget can be anticipated. It may be a short period of anticipation, too, relieved by midyear changes to the budget, although expecting the legislature to move too slowly is not unreasonable.

Whatever the cuts will be, they won't be smart. If we kept data on outcomes and the value added by programs and models to the lives of people with disabilities, the cuts could focus on the least helpful programs to preserve the most critical, helpful or useful. Since the only outcome metrics currently employed are the self-righteousness of the providers, clients and families, all indications are that every program and agency appears crucial and excellent, I am pleased to report.

If there were reasonable transparency, we could anticipate that those agencies that provide the most cost-effective care might be favored for referrals and some of the deficits made up by suggestions that those people with choices to make be encouraged to consider the cost. Since the referral process is not transparent, nor the evaluation process and the cost data is fairly meaningless, our only hope for absorbing cuts through information is the assumption that IPPs will be more thoroughly considered in the lean times. The good news is they won't be less thoroughly considered by and large.

So, the cuts are fairly doomed to folly. Another question, though, is will they save the state money? That is questionable. Lacking information on what works and what saves and what costs (a recent spreadsheet handed out at Assemblymember Buell's hearing in San Jose estimated savings to taxpayers from people with disabilities working but did not include estimates of taxpayer costs to find, create and support the jobs,) it is likely that this year's "cuts" will be of the normal sort, meaning services and supports that lower cost will be targetted equally with those that are relatively expensive and if rates are reduced it is likely to be by an even percentage, putting the low cost providers at disproportionate risk as compared to the high cost providers. In the end, without drastic moves against the Lanterman Act and its entitlement itself, the system will probably suffer a deficiency that, by a second year, may be greater than "cuts" written into the budget.

There would be a better way if outcomes were measured and information made usefully available to people with disabilities, their families, regional centers and providers. There would be a better way if there were a reliable means of accountability. Instead, the legislative and executive branches will do their level best without any useful information. My frustration will continue to be how little effort gets put into getting smarter.

For those of us who really want to see Self-Directed Services grow and prosper, though, there is a silver lining: The nags, scolds, sanctimonious pencil heads and vampires among us may accidentally wind up temporarily on the side of the angels.

Thinking Out Loud

2007-10-10T06:13:00.000-07:00

How do we measure an idea?

By if it makes you wiser or freer?

By echoes rung from mumbling lips?

By boats afloat on questing trips?

By whether it can start a war?

By poetry and metaphor?

By destruction of walls and fences?

Or inflation of pretenses?

By orators taking up the cause

for promulgation of new laws?

By if it gives your spirit wings

Or your pocket cash to spend on things?

Whatever thought quickens your blood,

If it leads a conference, it's a dud.

FIRST PRINCIPLE, n. An Afterthought.

Yammer Masala

2007-09-09T14:30:00.000-07:00

I have been accused by private email of being a bad representative of the obsessive compulsive blogger, having taken August off. Now, the accusation is from a friend who has an employee tasked with producing a blog and still doesn't have one, but, leaving that aside, probably something needs saying and I should say something else in this space once a month. It doesn't seem too much to ask.

So, a couple of news updates: AB 1427, the subject of my most recent post on this site (conveniently linked to for those with broken scroll bars) passed out of committee and is due for a final vote this coming week. The primary function of this bill is to serve as an organizing and recruiting tool for anti-union trade associations. Ironically, my prediction is that the pro-union legislature will pass the bill and the union-surly Governor will veto it. But we'll see,

AB 18, The Warren Mattingly Signature Stamp Act, authored by Assemblymember Blakeslee survived an attack by Protection and Advocacy, Inc. and also awaits final passage, but probably has a better chance of being signed into law by Governor Schwarzenegger. The many of us who remember Warren fondly wish this bill well and thank Mr. Blakeslee and his staff.

Now, regarding representation, Assemblymember Buell began a process of public hearings on the future of the Lanterman Act with a private one. At the private "roundtable" discussion, Mike McCoy, the new Executive DIrector of the California Rehabilitation Association (CRA,) described his organization as "The Statewide Organization of Providers." As one of the 8,000 plus service providers not represented by CRA, it seems worth reminding stakeholders to stay on the honest side of hyperbole when claiming to represent others. CRA has represented its membership honorably, so far as I am aware, but more providers are eager to distance themselves from that representation than are members. "A statewide organization of providers" isn't much of an edit but in front of the legislator it's best to prevent real time editing by colleagues. Especially when your arrogance is matched and your sarcasm inadequate as compared to your peers with blogs who happen to be in the room.

Microphobia

2007-07-24T10:57:00.000-07:00

AB 1427 is a bill, now in suspense (whatever that means) with provenance that may as well be SEIU (it is not, per se, a union bill but close enough for blogging standards.) It contains no real mechanism for organizing and discussions with opponents, including one I had with a good friend yesterday, typically involve concerns around incrementalism. The fear seems to be that if the union accomplishes something in legislation around this system that the next step will be more invasive and followed by the eschaton.

Many who know me and the few who read this blog may remember that I don't love this bill. But I do think it's a small thing and unworthy of vigorous opposition. Change works best in small steps and if incrementalism is a fear advocates indulge in, a frozen system that can't improve is the natural result, kind of like the one we already complain about. While we are counting increments to fear, here are some the bill contains, other than a unionized workforce:

1. Accountability. The evaluation scheme outlined in the bill seems a little questionable to me, requiring comparison to a control group but offering no incentive or mechanism to establish that control group. To call the evaluation outcome measurement one has to assume that better-trained, longer serving staff automatically lead to better outcomes, which is not unreasonable but is still a process measure. Despite the flaws, the proposal is the first in a while that attempts to measure its own success. If this bill passes, actual valid quality accounting might become a standard part of our system in my niece's lifetime, although it would be rash to presume that it will.
2. Professionalism. From many perspectives, receiving healthcare benefits and regular training units can be more or less indistinguishable from professionalism. Professionalism does not grow more vigorously in a culture of CEUs, like mold in agar, but it is at least true that training and benefits can confer the appearance of a professional class. If the pilot project is successful in making staff more professional-seeming, there is a risk that one day the cowardly lion, tin man and scarecrow will end up agency executives if they aren't already.
3. Incremental Incrementalism. AB 649, a massive, systemic goliath of a bill failed. Last year, a more ambitious predecessor to this bill failed as a gut-and-amend amendment. If AB 1427 passes, we must be concerned that eventually, massive labor unions, trade associations and other special interests will put forward bills encouraging italicization of ambiguous words using permissive language.

Checking in

2007-06-19T10:49:00.000-07:00

We still have a structural deficit and lots of bills going through appropriations. Not much to report on accountability. Will let you know if I hear anything.

The Oracle of Santa Clarita

2007-05-16T05:33:00.000-07:00

To a lonely desert village, just outside of L.A.
Came a wanderer searching for meaning.
There was said to be an Oracle, far less rare today,
And two dogs to interpret the gleaning.

For the legend was written from sidebar to scaffold
That, without even charging a fee,
The magus was kind to the bitter and baffled
And a master of lexicography.

The journey was long and the way hard to follow
And mystery shrouded the labors.
For the pathway was bent like the flight of a swallow
And the house, it looked just like it's neighbors.

But the seeker, at last, discovered the master
Sitting sagely beneath a broken tree
"Tell me, Oh wise one, for my life's a disaster,
What does it mean to live free?"

The oracle nodded his head, wise and kind
and spoke in a voice soft and hoarse
"That is a verb, intransitive, and defined
'To elect your slaveholder', of course."

And then the wise man rose with a flourish
And, turning his wise and kind head,
Pointed to the seeker and addressed the chorus
"If you don't mind, please explain what I said."

LIVE FREE, v.i. To elect one's slaveholder.
ORACLE, n. A prophetic lichen.
SEEKER, n. A rolling moss.

Cynical Reform

2007-05-15T15:25:00.000-07:00

I haven't posted in a spell and a new friend asked me today about whether I thought reform worked better from within or from without. Aristotle, Muhammed, John Huss, Martin Luther, Jean Paul Rousseau and Benjamin Franklin all have given us wise counsel on this very question, which, not being smart, I won't bother to include.

Being a dog-fancier, though, I think it is useful to consider the 4th Century B.C. Philosopher, Diogenes, the Cynic. The word Cynic originally meant dog. The reform Diogenes followed and taught was to live as a dog lives, unashamed of ones habits and desires and at once self-indulgent and propertyless. When Alexander The Great offered Diogenes to give him any gift the philosopher asked, Diogenes asked the conqueror of the known world to step out of Diogenes' sunlight.

What does this have to do with reform being more effective internally or externally? Diogenes of Sinope sought to change his environment by concentrating on his appetites, nourishing those consistent with living and disregarding those he saw as distractions. He became wealthy by changing his standard of well-being. All reforms begin by choosing the right appetite.

So we in this system, when we are near to home complain about choices made for us, the frustration of our own will by others and the impositions of other emperors on our daily activities. I would contend that the central appetite of the system is for autonomy, that the enemy of autonomy is sovereignty and that the chief distracting appetite is for funding.

So, this cynic, would propose that the first reform to be attempted is to stop worrying about funding, refrain from trying to command the neighbor and concentrate on cynical choices. Then we can get to reliable, person-centered outcome data.

This, by the way, is what happens when you post because you haven't posted in a while. Silence has its own muses.

Diamonds and dirt are forever.

2007-04-18T13:50:00.001-07:00

If you want to level an accusation against regional center vendors generally and be confident you can make it stick, this vendor recommends "They suffer fools far too gladly." Westside Regional is in its, approximately, fourth attempt to convert Independent Living Services (currently service code 520, for those keeping score in your programs) into a standardized supported living-like program funded at a flat rate.

There are many astonishing aspects to this: the durability of demonstrated bad thinking, the ascendency of paperwork over people in the proposal, that the initial public conversation about each attempt always begins with a plan rather than a request for insight, the ivory-tower thinking of a community-based non-academic institution, the failure to account for client rights or the passive acceptance by vendors of a plan contrary to their own interests, hypothetical values and the needs of the people they serve. It's a little hard to pick out the worst aspect of this iteration and probably not worth the effort.

A little history, to be read as though it were in the oral tradition because I don't have time to fact check. Some time, in or around 2001, it was explained to me that Westside had conducted a pilot test of flat-rate ILS but that in the evaluation it was discovered that vendors did, in fact and strangely enough, respond to incentives and underserved their clients. Clearly, flat-rate ILS was an experiment that failed.

Nonetheless, the proposal returned from the grave twice more before now with the added twist of requiring the ILS vendors to become SLS vendors without changing their scope of service, except perhaps, to add 24-hour emergency response to replace the Regional Center's. On the first of these occasions, DDS was made aware by vendors of the proposal and a message was sent through vendors that the proposal did not appeal to the Department and could not be supported under the regulations. The second time, a letter was sent by DDS with the same message. Part of what makes this proposal so mystifying is that it seems to have no consituency beyond the Regional Center bureaucrats. If it were a tolerable cost-reduction scheme, DDS, at least should have liked it.

And here we are again. I was not present at the vendor meeting where the latest draft was announced, but as it was reported to me the Westside vendors offered no resistance. Maybe they see something I'm missing, but based on my reading of the proposal I can only imagine that either the vendors agreeing haven't thought the proposal through or they already know they'll cheat.

The plan calls for a minimum weekly activity with a flat rate covering that effort or more, plus a significant amount of paperwork beyond what is called for in regulations. On an hourly basis, the rate equates to $35.71 per hour, as a long term average, is higher than many ILS agencies receive but less than what others receive. However in long months, that rate will fall to $30 which, while higher than ¡Arriba!'s rate, is lower than most. There is no compensation for the extra paperwork and no allowance made for even small spikes in service, need or planning requirements (A medical appointment, court date or an SSI appeal can not be accomplished in increments of one hour.) If an agency provides even a small number of hours beyond the minimum, the effective rate is likely to fall 30% or more from their state-set rates. Furthermore, by requiring the activity to be weekly, the proposal would prohibit agencies from concentrating sparse hours to reduce the cost of paid travel between clients. This is why I am certain that agreeable vendors must either be fooled or frauds.

There are massive problems afflicting the proposal with regard to the rights of clients. To eliminate vendor code 520, and implement the new reporting requirements, the regional center would need to a) not inform clients of available alternatives, b) cancel services categorically, c) cancel existing services without ID team meetings and due process. All of these steps are necessary to implement this proposal and none of them compliant with existing statute, relevant regulations and/or federal law (in the case of Medicaid waiver clients.)

To summarize, this proposal has a long history of failure, is illegal, hypocritical, unhelpful and impractical.

And yet, there is value in this proposal: It is a perfect example of why innovation fails in this system. While there is no explicit goal for this proposal, beginning the conversation with a purpose and developing, in collaboration with vendors and clients, might have led to a solution with the possibility of a positive outcome. You can almost hear the voices within the regional center saying "we have to make our plan internally and then announce it as a done deal or else the vendors will just put up obstacles." By making that choice, they've left us with no alternative.

It may be worth noting that the Executive Director of this regional center delivered a scathing criticism of vendors for not providing attentive, responsive and individualized support at the New Day conference in 2005. Hopefully, the irony that he is overseeing a persistent effort to standardize the individualized services Westside can offer is amusing to someone.

Train Campaign

2007-04-05T11:30:00.000-07:00

What is clear to almost everyone I know who is involved in this system is that training follows only good people in importance when it comes to quality of care. What seems to be clear to a lot of people other than me is that large amounts of formal training in a standardized statewide mandate will help a whole lot.

Recently I have been made aware of campaigns or suggestions by The ARC of California, the California Rehab Association and the Consumer Directed Services Network (CDSN, an ideological fellow-traveler with the Service Employees Internation Union (SEIU) all of which have proposed funding access to curricula from The College of Direct Support (CoDS.) One proposals would mandate the training for everyone, one requests funding, and one would implement a pilot project through an Assembly Bill, AB 1427 which offers a rate enhancement for agencies whose employees, among other requirements, complete 200 hours of online training. I can be supportive, generally, of access to the CoDS curricula for staff but am generally dour regarding both the prospect of a statewide mandate and the amount 200 hours.

The most peristaltic reaction I had is to the idea of the mandated training. Anyone who is in the professional or receiving end of client-centered support learns quickly that almost no knowledge is universally applicable. Some small number of techniques for more quickly and usefully establishing communication between staff and clients, such as Essential Lifestyle Planning may be of universal application but almost nothing else is. So one obvious drawback to a statewide curriculum is efficiency. In one-on-one, person-centered support the majority of formal training will be useless between a given staff person and a given receiver of services. Less so, but also, this will be the case in congregate services, however standardized. Spread requirements for training across a system serving over 200,000 individuals and the waste must be in the millions of dollars at least. The current system clearly doesn't want for waste or wasteful suggestions which are both in great supply and substantial demand.

The second concern, related to the first is the general one I carp about regularly. An effective system of delivering value to individuals must allow that individual to define the value. Statewide training mandates are one more large intrusion into the time, funding, and attention of those who offer and receive services driven, devised and defined by strangers.

A final concern, and this one takes in the AB1427 proposal in its current form is the matter of whether formal training not required by the task is good, bad or neutral. They say if you have a hammer in your hand, everything looks like a nail. My concern is that providing tools by training will influence the suggestions staff and managers will make, what problems they see to solve and how they approach those problems. At some point, the standardized curricula may detract from quality of care as easily and often as they help.

Training is important but only helpful when helpful. Standardized curricula can be harmful and are far less likely to be helpful than either informal training or formal training prompted by the needs and situation of the service user.

My suggestion is that more appropriate training is the change worth seeking, measurably better training a laudable goal and more training shady in the typical way.

Inclined to agree

2007-03-07T13:51:00.000-08:00

When meeting the obligations of the community-based system is projected to cost more than the budget allocated, the Department of Developmental Service (DDS) is required to file a "deficiency request" with the legislature to request an appropriate additional amount. In January, DDS submitted such a request for the current year.

Senator Dennis Hollingsworth, a member of the Senate subcommittee to which DDS' request was presented sent a letter to the rest of the subcommittee stating his opposition to roughly two thirds of the request because it was not accompanied by any attempt at reform.

I don't know if Senator Hollingsworth and I would agree on what reform means, but I agree with him that this system has proven we will not spend our way to excellence. That war is lost whether we continue to have battles or not. If the community won't fight for reform with the same vigor that we've fought for money, the "reform" will be a familiar, unconstructive, unproductive, inefficient, damaging, depressing and/or diabolical one like the Purchase of Service Sandards of the past which will damage the lives of indivuals without saving money. Better to ask for a leaner, more person-centered support system focused on adding value to the lives of people with disabilities with less regard for the institutions involved.

We can win that war, if we'll fight it, because excellence, unlike the current system, is sustainable.

Peer Pressure

2007-02-07T09:54:00.001-08:00

I have already been reminded that those who are friendly towards me expect a more biting review of the conference than the one below. Please forgive me, friend, for forgetting my place. There's no better metric for the failure of the conference than that.

To be more biting means to be a little repetitive, because the weakness I found were those I predicted in this space, but to recap.

Wrong format and content: It is pure vanity for anyone to believe the substance or particulars of that conference are change agents or that the conference itself is a change agent. The truth beyond the fiction presented is this: No one working in this field needed this conference to learn the words "dignity," "meaningful," "individualized" or "appropriate." No one there needed models presented to provide dignified, meaningful, individualized and appropiate support. None of us missed the transformation from doing to to doing for to working with to working for people with disabilities. What we needed, need and don't have is a system in which the right, effective and most valuable support prospers and the deadening one is entombed rather than the person served.

What exists now exists as it does because the supports now offered are adaptive to the environment. Like gum chewing in a lecture hall. If we want change, and I think we're sincere about that, we have to change the environment and I don't believe we are sincere about changing the environment. We want to watch from under the sea as our issue prosper on land.

Look at the conference. Dignitaries, experts and other charlatans speaking from a lectern about listening. The conference was a site-based, segregated day-program using generations-old prompts to modify behaviors.

The topic is not what to do differently but how the system needs to change so that we can all get what we claim to want. When a system changes, every element within it changes in form, function or both. Regional Centers have to change. Providers have to change. Clients and families and DDS has to change. First change? Learn to use question marks. If the Devil were a question mark, it would have been the cherubs that fell.

Wrong Message: The message continues from last year. That the failure of the system is a failure of imagination. Or a failure of willingness. This is not true. All over the state are clients who know what support they want, unmatched to the many providers ready, willing and able to provide that support. It's not even a failure of will. The failure is to ask why the system doesn't tolerate the services we all imagine and how intolerance can become encouragement.

Glossary:
ADAPTIVE, adj. Expedient. Ethical.
APPROPRIATE, adj. Traditional.
COURAGEOUS, adj. Selectively submissive.
DIGNITY, n. A shimmering blanket draped over the head of the pitiful to reflect the beauty of the beholder.
INDIVIDUALIZED, adj. Filled to taste, as a glass from a vat.
MALADAPTIVE, adj. Inconvenient.
MEANINGFUL, adj. Fully funded.

The Second Semi-Annual New Day, Summary

2007-02-07T09:12:00.000-08:00

On the whole, the conference was as I expected, although the session entitled "What do I do now that I'm out of High School?" was constructive. It covered a project working within colleges to integrate people with developmental disabilities. It's not clear how truly integrative the project has been but the outcomes they tracked demonstrate that the project seems beneficial. If the consortium working on that project presses, improves and changes, integration might grow within it.

For those who asked why I listed Limericist as my title, I answer:

When you preach to the choir from the dais
Always make sure what you say is
What they want to hear
Or at least as near
As you can so you don't end up payless.

Newish Day, Day 1 in the Garden

2007-02-05T15:27:00.000-08:00

I feel pretty good about my prediction for this month. Report from today: Imagine 5400 fingernails on blackboards. The problem with a Regional Center-organized conference is that conferences, by nature, tend to built on the assumption that the speaker's have the authority of pioneers and regional centers, by nature, tend to use pioneer era thinking. I've spent the last six hours, with the exception of Kim Belshé's presentation of the Governor's health plan, being encouraged to boldly imagine the world I live in already and be fearful for nothing. I don't drink, but I wish I did and may yet tonight.

The second semi-annual new day

2007-02-05T08:11:00.000-08:00

The New Day California is a brand new, efficiently aged institution. The purpose is to urge other people to do what they ought without discussing why they don't. The 2005 conference featured some swell keynote speakers, two preposterous luncheon speeches on the second day and one highly valuable outcome. People who attended said it was grand. I'm looking forward to this year's conference equalling the previous one and will be sharing my observations live.

At present, I'm in a chair awaiting the first general session. Nice padding.

Speaking of dialogue, a fable

2007-01-25T15:25:00.000-08:00

The Coyotes, The Foxes and The Wolf

Once upon a time, in the east of the county, there was a fox hunting ground. The land was full of rabbits and the foxes lived well. One day, a wolf came and started eating rabbits and howling at the moon. The foxes feared that the howl would attract human hunters who would take all the rabbits and leave the foxes to starve. So the foxes snuck up on the wolf and quickly tore out his throat.

All was well in foxland until a pack of coyotes came and started hunting and baying. "We must get rid of the coyotes like we did the wolf," said one fox.
"There are too many and they're bigger than us," said another.
"I have a plan," said a third and all the foxes saw that it was a wise plan.

The foxes sent an emmisary to the coyotes to suggest a conference on sustainable lagoculture. For their empowerment, the fox ambassador suggested that the coyotes as immigrants should convene the planning committee which would develop, identify and elect the steering committee for the conference.

Moral: It is kinder to silence your neighbors by fang than by forum.

Oracle

2007-01-23T07:55:00.000-08:00

The new legislative year is underway. Having consulted a crystal ball, or at least a coke bottle, I feel confident making the following prediction about the course of advocacy this year:

January: The first post of the year on Developmental Disability System Reform will post on or before the 22nd. This marks the traditional start of the Advocacy Calendar.

February: The 2007 A New Day California conference will promote a new approach to day services with a curriculum based on the assumption that change lags for want of public hectoring to encourage it. Various dignitaries and assorted charlatans will cure the disease but the symptoms will continue unabated. The Service Employees International Union (SEIU) will propose legislation to expand membership and stimulate activism at the California Rehabilitation Assocition (CRA.)

March: Many parts of the advocacy community will press for system reform, defined as funding increases.

April: Many parts of the advocacy community will press for system reform, defined as rate increases.

May: Upon release of the Governor's May Budget Revision and the "discovery" that costs and revenues are further out of balance than previously "thought." The advocacy community will press for ending the rate freeze, defined as system reform.

June: The budget will not pass by the constitutional deadline.

July: The budget will pass and will be okay except from an accounting standpoint.

August: Meetings will be held to develop a white paper on system reform.

September: Legislators will be educated on the needs of the system by advocates, then locusts.

October: There will be a vendor-organized conference based on the assumption that change lags for want of public hectoring of regional centers. Less luminous dignitaries and charlatans will address that deficit than will have at the ARCA conference.

November: An ILS agency Executive Director will turn 40 and wonder what's taking so long.

December: Meetings will be scheduled for the purpose of getting a head start on next year's advocacy and then postponed until February.

Lessons from 2006

2006-12-27T10:26:00.000-08:00

Here are some things I learned or had (re)confirmed this year.

1. DDS is so angry at my writing about self-direction that they dropped CADDIS during my vacation to make me look stupid.
2. People with a taste for real change aren't always who you think.
3. System funding is as much an emotional issue for people as it is a practical one, but chocolates and flowers would be cheaper and more helpful.
4. "Efficiency" is a word people love to say and hate to hear.
5. "Accountability" is another.
6. Connecting people is the heart of every important reform.
7. The job of helping people with disabilities to live more fully is still worth doing.
8. The job of changing our system so it helps people with disabilities live more fully is most glorious because it is so unlikely.
9. Some people think living in solitary idleness in your own home is so much better than living with friends in a segregated setting that no one would ever choose the latter even if it came with a large stipend and DSL.
10. Saving the current system and funding it better is an errand for a superior and more committed fool.

Further on the topic of choice

2006-11-29T10:00:00.000-08:00

On the topic of choice, I have expressed some opinions. I would like to elaborate on a related issue. In weighing the relative merits of choice and integration, I still remain committed to the idea that choice should trump and that neither the State nor Regional Centers, nor agencies have a compelling enough interest to push integration on those who prefer to live and receive services in a segregated system.

That said, after hearing a very compelling speech just yesterday on the topic, I also agree with two embellishments on that position.

The first additional point is that the boundaries of choice as a policy goal may vary in the advocacy of different people, but these distinctions are philosophical not moral. I may disagree with those who believe the state should differently fund integrated and segregated services in order to support the choice of integrated services, but I do so on practical grounds and with no truer compassion or greater honesty than those who take the opposite position. To the extent that state, regional center or agencies believe they have a compelling interest in limiting choice to a more integrated environment, it is appropriate for those entities to better support integrated services than segregated ones.

The second additional point I'll confess is that I agree absolutely with value-based funding as an improvement on the collossally irrational system we have now. I also agree that the supports necessary to sustain people with developmental disabilities in integrated lives are more valuable than those that support the same individual in a segregated setting, given that the former is harder to accomplish. If integrated services were to receive biased funding in their favor on the basis of value rather than cost, I could support such a policy.

OK, satisfied, J? And I posted in November, too.

Self-Directed Services (SDS) Regulations, an update.

2006-10-13T12:16:00.000-07:00

The Community Services and Supports Branch of DDS held the second of a string of meetings with various specific stakeholders on Tuesday in Sacramento. There is to be a general stakeholder meeting on October 25 in Sacramento and a series of three teleconferences before the proposed regulations are filed with the Office Administrative Law which is planned for the dawn of the new year.

The first thing to be brought up in any discussion of SDS is the fact that it is currently linked in statute to the computer system CADDIS coming online. What has passed for progress with CADDIS is that in 2001-2004 DDS pushed back the "live" date by one year annually and in 2005 they pushed it back by a month every 30 days. They are backing up by a year, maybe, three times per annum so the true process for implementation of SDS almost certainly looks like this:

January, 2007 the regulations are to be filed with the Office of Administrative Law for a one-year process of acceptance.
January or, maybe, April 2008 the regulations are enrolled.

May, 2008, the live date for CADDIS is estimated to be March, 2010 and trailer bill language is sought to alter the statute so that SDS can be implemented following changes to the current data system and the roll-out date for SDS becomes January 1, 2009.

Summer, 2018 the necessary changes to the current SANDIS data system are completed and an entirely different set of regulations take effect.

All of that said, I can offer a few impressions of the current state of the regulations.

First, the budget setting methodology has been fairly well articulated. I'm not mammothly impressed by the statistical methodology on the surface but in fairness, I have no idea what was tried and how it worked. A demonstration of the methods and charts of the underlying data might lead to the conclusion that the methods were wholesome and fair or offer the community at large a means to improve them, apart from our instinct to just make everything more expensive where possible.

Notably, DDS has separated durable medical and environmental adaptations from the initial budget calculation to allow people who need long-lasting equipment to purchase that without fear of depleting the budget for ongoing needs. That was a smart and positive change. Unless such expenses are with-held from the calculated averages that make up one of the available budget methodologies, the cost-savings from SDS might be diminished and cost-savings will be important toward sustaining SDS.

Also, the readiness of the regulations was not what I might expect from something two months from filing. There seemed to be a lot of discussion points and items DDS seemed ready to reconsider. This suggests one of two things:

Either the meeting was something of a placebo with sincere intention to make improvements but also the willingness to make notes in the draft at more points than staff was willing to alter; or

There is no right version where the community will be happy and changes will continue to be suggested until we are all dead, which would suggest the previous possibility as the smartest strategy.

In either case, there are two new areas where I would have concerns somewhat more compelling than my usual flippancy:

1. In the eligibility requirements there was a disagreement between staff and some of the attendees whether or not the requirements in the regulations were more restrictive than in the underlying statute. As a historical note: During the discussions convened by Senate staff, the original DDS proposed statutory language contained this: that the eligibility criteria include, but not limited to. The Senate staff made clear that the "but not limited to" would be dropped in the statute and it was. The history is important because it makes clear that DDS was not meant to be empowered with the right to tighten the the eligibility criteria. For this reason, I think it is only appropriate, as long as there is controversy about the meaning of the regulatory language, to use the statutory language verbatim in that section. It will, after all, be the interpretation of the individual regional centers, not the intent of DDS which govern the implementation of regulations in nearly every case.

2. The "accountability system" as it is currently constructed seems to be as fraudulent as the one we now "use." In the current draft of regulations it will be the responsibility of the SDS client to submit an evaluation of vendors, which would be a wonderful thing to do if and only if the requirement to evaluate is enforced, something the current regulations offer no mechanism for, and the evaluations are aggregated and easily obtained, something else the current regulations offer no mechanism for. I would strongly urge DDS, if the authority exists in statute, to provide for a useful reporting system on quality. Granted, one of the virtues of SDS is the ease with which individuals can fire unhelpful supports, but a far more helpful method of improving quality would be to allow SDS participants some method for identifying those providers most apt to provide helpful support. If that cannot be done under existing authorities this requirement ought to be struck as a useless intrusion on the client's time.

Related to this second point, there are some elements, SIR reporting by unvendored providers comes to mind, that seem unenforceably mandated. Unenforceable mandates tick me off.

Two where the regulations seemed surprisingly strong:

A. The budget allocation process is magnificently transparent and predictable which will make it easy for potential participants to judge whether or not they will be well-served by SDS and which method to choose. There can't be three other sections in Title XVII as well-designed. That said, and as noted above, the right method for developing the actual funding attached to the process will make the difference between SDS being popular or almost unuseable.

B. The descriptions of the Financial Management Service, the role of regional center personnel, and the assignments of service providers are less overdefined than I expected them to be, compelling me to partially and semi-sincerely apologize for my previous post. In my opinion, DDS still erred on the side of over-regulating but not by as much as I was prepared to rant against.

On a whole separate note, I wish to grouse that those who pressed for eligibility criteria to exclude people receiving services in congregate settings will regret that decision a year or two after SDS rolls out, should they be blessed with world enough and time. I still believe that the effect will be to minimize community integration as a byproduct of the new system. That error being now enshrined in law, there isn't much to be done about that but whine, as I do here.

Self-Direction, Finale (for now)

2006-09-29T10:12:00.000-07:00

To those who have noticed and inquired and thank you to those that have, I thought I'd wait until the new self-directed services regulations come out and then fume about how prescriptive they are and how they over-regulate while under-protecting the enrollees. I thought the new regulations would be out by now. That much I was wrong about.

Organic farming and row crops.

2006-08-16T09:54:00.000-07:00

In some ways, the DDS system is the future of effective government, depending on entitled rights and an engaged private sector to serve the needs of a challenged population. The mission of the whole edifice is to sprawl, broad and variable enough that each person served can find their own access point to the help they need for their challenges and aspirations. An organic approach like this parallels innovations in the business world where individualization has proven more efficient in many scenarios than the standardization that the industrial revolution brought and maintained.

The culture of government, however, has trouble with risk and risk is synonymous with variation. So, having envisioned an ecology of support, the organs of government soon fall back to establish control and order. Instead of encouraging relatively unfettered innovation, the regulations develop over time to specify the types of service available and to constrain the freedom of the service providers, rather than specifying outcomes and allowing competing and co-existing models for delivering such. For example, if you compare the older regulations governing Independent Living Services with those governing Supported Living Services, their are significantly more barriers established in the latter. Consequently, individuals who would be classic supported living clients may receive Independent Living Services instead as a result of, perhaps, economic or health risks which result in sometimes leaving apartments to stay long-term with family.

Over time, the instinct at regional centers has often been to harden and sharpen the distinctions. For example, to deny any individualized living support or training to individuals who live with their families or in group homes, which often has the effect of limiting people to their current setting. The consequence has tended to be to regiment the people served rather than to liberate them.

Essential Lifestyle Planning as polytheism

2006-07-25T14:55:00.000-07:00

Essential Lifestyle Planning (ELP) is a conceptual name given to a category of thinking and doing in the social services also called Person-Centered Thinking (PCT.) Blogging from the 2006 ELP Trainers Conference, I can report that this remains to me an intriguing, flexible and useful line of work. Agendas from the conference and some shapr insights that I hear here are being posted on the East LA Vendor Learning Community weblog.

One of the concerns that I have had and continue to have about the change process is how we prevent person-centered thinking from locking in as a secular faith. There are many holy words in PCT, rites (tools,) and styles of worship. There are anointed clergy, renegade evangelists and false prophets. The concern is that so much of every religion is hypocrisy and one of the challenges we face is how not to be superficially devout.

I have no doubt that person-centered people-first language and rigorous use of the tools can produce lives as restricted and support as meaningless as is currently practiced in our worst instutions. At the end of the day, the change we seek is to listen and respond and provide meaningful assistance and nothing about ELP makes that inevitable unless we're listening, responding and providing meaningful assistance. I have no doubt this religion will continue to spread and evangelize, but I wonder who will be saved.

Apologia

2006-07-10T15:04:00.000-07:00

Maybe, Doug Antagonistes. There, that's pretentious. Anyway, Greek really can make a fool look smarter.

I have been informed recently that it is a little confusing trying to guess where I will come down on a given issue, particularly when it comes to new regulations. I thought now would be a good time to restate the first principles of reform as I measure them.

1. Choice Trumps

Most everyone involved in California's Developmental Disability System agrees on three things: That people with disabilities should live lives based on their own choices, that people with developmental disabilities should be fully integrated into their communities and that the health and safety of a served individual should be protected. Even a reprobate like me agrees with all three of these principles.

Not long after becoming a part of this system as an Uncle and as an executive it became clear that on a great day or with an extraordinary client, these three principles work together in perfect harmony. Most of my professional life, however, there are conflicts between two or all of these principles. In extreme situations, like a human locked in a box or someone with frequent seizures and a history of depression wanting to take a handgun hang-gliding, the conflict can be fairly easily resolved. When the distinctions are fine, however, I think we all demonstrate that one of these values is a moral imperative and the other two aesthetic preferences.

In the end, I find that client choice is where I won't give. Integration is important and should be a choice, but what of those people who don't choose integration. If what we call disability is to be seen as many of us would like it seen, as part of the normal diversity of humanity then people who neurological diagnoses are essentially normal and belong to a minority. When other minorities choose to live in communities where they belong to a local majority, this is generally considered ok. It should be with our clients as well. On health and safety, in extreme circumstances intervention is necessary and desireable as it would be with an alcoholic relative or a suicidal friend. However, like in those examples, it is important for the intervenor to establish that the individual, were they fully aware of all factors and able to implement a wise choice on their own, would behave differently. The default has to be in favor of an individual's choice.

I honor, but often differ on policy matters, with groups which hold health and safety or community integration as their most important policy goal. This frequently puts me at odds with my friends over the closing of Developmental Centers and the appropriateness of congregate services. When I disagree with CAIC or PAI, it's typically on this point.

My policy: When in doubt, choose humility. Because I told you to.

2. Err on the side of under-regulation.

When talking about policy, there is another matter to consider: Statewide laws and regulations can never take into account the idiosyncrasies that make up most of the matter of a human services system. In my own little imagination there is a formula. Since I made a pun of Agonistes above, I get to call this formula, Doug's Law: The formula for Doug's Law holds that 1 divided by (10 to the power of X)+1 is the likelihood of a decision being correct where x is equal to the number of intermediary reporters between the person affected and the person making a decision. So, a decision made by direct care staff has a 50% chance of being correct for the person served. A supervisor making a decision based on the advice of the direct care person has a likelihood between 8-9% of making the right choice. Regional center policies probably provide the right solution around 1 time in a thousand and DDS about 1% as often as a regional center. Executive Directors of agencies would get it right around 1%-.01% of the time if they weren't so pitiably stupid. There is no empirical evidence to support Doug's Law but it sounds right and anecdotal evidence abounds.

The upshot of this is that regulations that sound morally correct are very rarely right in implementation. I lean heavily toward reform which relaxes regulation in favor of accountability for outcomes. Specifically, risk, reward and oversight (verification) should be the guiding principles of the entire body of law by which the state manages this system. I honor but differ with groups that frequently propose or favor regulations which serve to bound decisions made by people who would not recognize the proponents in the criminal line-up which many should be standing in at any given time. As a consequence, I frequently disagree on policy matters with organized labor, most large advocacy groups, and many parents' groups on matters concerning regulation of agencies and regional centers, and I tend to disagree with regional centers on the value of POS policies as guidelines.
My policy: Support insuring outcomes and leaving process to chance. Plan to follow.

3. Put the cart before the horse.

Almost everyone I know agrees that outcomes are all important and almost no policy is ever proposed or implemented that doesn't directly controvert this principle. Every time a "best practice" is mandated, every time a proposal comes forth to prefer one mode of support over another, every time wages are legislated the assumption is that this will help clients live lives that are meaningful to them and yet the 200,000 or so people aren't often asked by policy makers what is meaningful to them or what help is needed.

Separating a person served by our system from the most appropriate support is massively inefficient, because money is spent on something that doesn't help as much as an alternative. No one handy suggests a tool before they know the project and yet some groups annually propose to alter the landscape of available services without ever learning what help is needed by whom for what purpose except anecdotally. People whose primary language is neither English nor Spanish nor spoken are rarely heard from even anecdotally. Once again, the real accomplishment would be to see that every person served makes progress towards life as they would choose it. Given that nothing useful is ever measured in our system, I could not be more certain that it is possible to mandate any service mode now vendored or imagined at any funding level without helping anybody.

Aesthetically, I don't like congregated services. To the (statistically nonexistent) extent that my niece's Uncle Doug will advise her service decisions she will never even look at a site-based day program or a group home. But still, as in item 1, I don't believe any person born with disabilities should suffer further because of my good judgement and moral vision. If the system worked right, and I am right on the unattractiveness of congregant services, most such programs will close and the rest be genuinely needed. While I cannot picture a stranger (or my niece) working in a site-based work activity program and be happy about it, it's actually fairly easy to imagine someone who, for some time, would benefit more from such a program than any other type. Just off the cuff, someone with significant anxiety towards the community at large, no existing work skills, normal fine and course motor control, and treatable behavioral issues might succeed in a WAP setting to prepare for more integrated and more meaningful work, while that same person might fail repeatedly without that preparation.

Some of this inefficiency actually harms clients as opposed to just wasting scarce resources or not helping as much as possible. When process becomes the focus, the goals of the client can be adversely affected as easily as neglected.

Again, I honor but often differ with people (nearly everyone I like) who would use state or regional center policy to determine broadly which forms of service are available to the community at large.

My policy: Support letting the design and prevalence of supports result from their success meeting the real needs of individuals, even if the result is more of format I don't like and less of what I personally sell. As a matter of policy.

Oh, and happy second anniversary to this blog (last month.)

Why transparency matters

2006-05-08T06:59:00.000-07:00

Transparency may be the most underappreciated feature of a strong system. Every day system stakeholders experience the ability of bureaucrats throughout the system to stretch the letter and spirit of existing statute and regulation. Often, those innovations are flexible solutions to situations not foreseen in the development of existing law. Often the experience is of a misrepresented regulation for the purpose of saying no to a flexible or compulsory solution.

The more that DDS, Regional Center and Vendor actions are exposed to sunshine, the more likely flexible solutions will be applauded and inappropriate denials of rights will cost the decision-maker. At every level of the system from the legislature to the quality of breakfast in a group-home, people with disabilities benefit from the various agencies understanding that the quality of their work being widely known and understood.

I offer an additional point, my own theory. I do believe that control must be balanced with the organic process of policy-making. Because most decisions are made in the dark by people alone, each of whom most often prefer to be in control, I expect that the system of support for people with disabilities is massively out of balance on the side of rigidity. An open dialogue can massage that stiffness and restore some of the flexibility the developmental disability system in particular was wisely designed for.

The CDCAN initiative to enable journalism by system stakeholders is so important. The fact that anyone's actions may be the subject of a webcast marks a major change to the milieu in which professionals act regarding disability rights and opportunities. Along with the teleconferences which highlight the micro-effects of macro-policy, CDCAN is the largest part of a systemwide push for greater transparency and through that, greater accountability and better decision-making.

CDCAN is not intended to be, nor should it be the only agency expanding transparency. At the local level support groups, boards of directors, blogs (God help us,) and other networks have the opportunity to make transparent local and even individual policy-making and action.

A note about client and worker confidentiality. The right of the individuals involved in this system impedes transparency but also represents a crucial element of the dignity of the individual. Efforts to increase informal information-sharing and public awareness of what actually happens in the system need to consider the importance of privacy and privacy-protecting law. That said, two principles should be remembered: The freedom of the press is enumerated in the constitution and, therefore, no law or regulation can impede the right of people to seek information regarding public decision-making and to publicize the information obtained is superior to every confidentiality provision on the books. Second, confidentiality is the property of the person the decision regards, not the professionals participating. There is unlikely to be a legal offense where a person wants their story told.

Update: Chris Thompson has left a link to a site he writes with a partner on transparency as a communication tool. Click here to read about why transparency matters.

Money and Reform

2006-04-20T15:56:00.000-07:00

Lately I've been getting crosswise of friends, colleagues and conspirators over my baffling opposition to better funding for our system. I thought I'd clarify to you, dear reader since I feel kindly towards you unlike those rascals. But, I do believe this as well: The gap between how the system functions and how it should is greater than the gap between current funding and optimum funding. Add to that the great truth of life and government: that money is the enemy of reform.

It's not so much that I believe rates are high enough, but that I suspect a lot of funding isn't helping people with disabilities. I don't know how much, but I further suspect that much of the wasted many is not otherwise neutral but harmful. Redundant people signing off on client's choices. Quality evaluations that serve no particular purpose but around which client lives and agency practices are disrupted. Fiscal controls which repeat other ones and serve as a break on the system's ability to respond to change, challenge and opportunity. Systems of accountability which can be safely ignored by participants but which, again, disrupt beneficial processes.

It's a funny thing to me: All the best advocates I've known, when near home complain about dismal behavior by regional centers, scurrilous crimes by vendors, the lack of challenge for success. The lack of punishment for failure. And yet, we arrive in Sacramento and face the legislature and administration and say "we need more money," not mentioning any of the problems that bothered us in our homes and businesses.

I do believe the following:
*Self-perpetuating boards implementing public entitlements was a bad idea and has produced predictable consequences.
*The fact that all information regarding the quality of support options is universally not just subjective but idiosyncratic and anecdotal produces inefficiency and limits rational choice well beyond what any end user or tax payer should have to bear.
*Some massive amount of creativity is squelched by fear-driven decision-making by people marginal to the life of the end-user.

If all this is true, then to focus on funding over reform betrays everything we claim to believe and everyone we say we love in this system.

This year's cost containments

2006-03-22T11:42:00.000-08:00

Demonstrating either my clairvoyance or my willingness to talk about matters I know nothing of, a few comments on the cost containments to be proposed by DDS this Spring. It's my workup for the California Disability Community Action Network teleconference so those of you with good fortune to read this before the teleconference will know what I'll say, and those of you listen to the teleconference first can quit reading now.

The cost containment mentioned in the Governor's Budget may include new contract language for regional centers requiring certain Purchase of Service decisions to be made in a certain way. For example, the low-cost provider able to meet the needs of the consumer shall be used and, where appropriate group services should be used rather than one-on-one services. On a common sense basis in which the words appropriate and need have their usual meanings and include a respect for important preferences, this should already be the case and isn't. In that regard, I'm tempted to agree with this proposal.

On the other hand, the first requirement of citizenship is to disagree with the administration and I do. Confidently. Two perspectives seem very difficult for the Department, which make disagreement not only possible but easy.

On the one hand, regulations and statutes and contract language have very little to do with service coordination except in cases where they amount to no and that seems like the better answer to the regional center decision-maker. Many of us here the once-proposed requirement to prefer group settings where appropriate and imagine that it will be quoted and followed faithfully always and only where inappropriate. The low-cost provider who meets the client's needs will be the provider at whatever cost who meets the service coordinator's needs or no-one's. I'll wager that no end-user of this system or vendor will find my claims here controversial or exaggerated.

The second, and more essential perspective missing from this proposal is the understanding that regulations are most often sources of inefficiency and poor outcome. When our system works best it provides a continuum of support to clients that reduces the need for supervision, future assistance and expensive support by assisting the individual to make choices. This is the most cost-effective behavior in our system where the client lives fully and the taxpayers save money. Any regulation, including contract language, of that process inhibits creativity, innovation and motion along this path. Proposals like the one I expect are as likely to freeze a client in an unchosen environment at needless cost as they are to save money.

Back to Self-Directed Services

2006-03-09T14:42:00.000-08:00

Many of us are looking forward to the implementation of Self-Directed Services (SDS) in 2007 or 8 or 11 or so. Of course, all of us looking forward to that roll-out are assuming that when SDS rolls out, it will include self-direction as one element of the program. Just to honor the name and all. Here are three questions:

1. Will the roles of Service Brokers and Regional Center Staff be clear and separate? Service Coordinators (SCs) have for a long time expressed strong preferences towards what services and agencies clients receive support from. This makes a Service Coordinator a valuable resource to clients who are uninformed, indecisive or dependent. For self-directed services to live up to its name, an almost complete divorce from the service coordination function would have been optimal. In the case, it is at least necessary to redefine the role of the SC in a way that will not occur naturally, to make room for the new autonomy given to the client and to allow the service broker to be valuable. I would recommend a prohibition on SCs discussing matters appropriate to the role of the Service Broker.

2. Will the oversight of the SDS program support or inhibit the control of the consumer? Assuming that there will be accountability in this system (a boy can dream) it will be important what measures are tracked. Such indicators as level of integration, generic social network, and level of employment are great social goals but can't be assumed. Some people with disabilities prefer the company of other people who identify the same way. Some people find paid work less rewarding than volunteer work. Granted, SDS is an integration program in self-determination drag, but some accountability for the misnomer should require that clients be allowed to choose their own objectives and that no-one be incented to deflect or undermine those choices.

3. Will this system manage risk better in SDS than it does in the Regional Center system? Autonomy means nothing without the availability to take risk, and no plan is person-centered without an understanding of what chances may be taken and which won't be. Under the current system the assumption is that risk is good unless something goes wrong and then it was bad. Will the SDS include a new view that lets the individuals served choose which chances to take, and enjoy the results. Those of us who are eager to help people through SDS program plans will depend on the idea that if our jobs are done well and the client experiences an adverse result from an informed choice, that we won't be buried with the emperor.

I'm pessimistic that I know how these questions will be answered. Doesn't hurt to ask 'em, though.

Oh, I said I'd write weekly didn't I?

2006-02-21T14:07:00.000-08:00

My new friend, PARCA writes a blog advocating Regional Center Reform. He and I agree on a lot, and I was reading his site today, where he reminded me that I haven't ground my accountability axe recently. Shame on me.

Accountability is a massive deficit in this system. How much money is spent on needlessly restricting clients, providing useless services through feckless providers, choosing costlier options to superior ones, adding layers of bureaucratic duty or regulation unaccompanied by better outcomes? I don't know and neither does anyone else. So a lot, no doubt. Lest someone accuse me of regional-center bashing, I do hereby confess the lack of accountability is systemwide and applies to vendors, regional centers, pretty much anyone taking a penny under the DDS line item. My own belief is that the lack of accountability probably does more harm than the lack of funding to consumers.

The big picture need for accountability requires a systemic, thoughtful approach and drastic reform. But here's something we can do today:

A low-cost, drip-dry way to improve the oversight in our system would be to improve transparency. This can be accomplished with a little care for confidentiality by the magic of carbon-copying. As a matter of policy, any communication sent to a provider agency can be cc-ed to their vendoring regional center. Any communication sent to a regional center, if clients' names are redacted, can be cc-ed to the Department of Developmental Services (DDS) or the Centers for Medicare and Medicaid Services (CMS.) Any communication sent to the department can be sent to CMS as well.

It's a poor substitute for a system of outcome measurements that defers to choice, but I'll wager it would help in the interim.

"Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God." -Phillipians 4:6 (KJV)

A New Blog

2006-02-09T14:33:00.000-08:00

The Vendor Leadership Forum (VLF), a subcomittee of the Eastern Los Angeles County Regional Center Vendor Advisory Committee (VAC,) has established a weblog as part of its effort to form a learning community and to be transparent to the community.

This new blog (linked permanently at left and in this post above) will open up the progress, challenges, milestones and planning of the VLF for information and feedback. The members of the VLF will all have the opportunity to describe the journey, the scenery and the adorable natives we meet along the way. We invite all of you to read and comment there.

Administration

2006-02-08T15:50:00.000-08:00

I think our system has a funny relationship with administration. On the one hand, it's almost a tenet of faith that administrative costs deprive the clients. On the other, the State and Regional Centers sure seem to come up with a lot of ideas for vendors to do more of it. There are a few things that stand out to me about the role of administration in our system.

The first is this: Our system derives its efficiency and effectiveness from the individualism in the service planning. In theory always and in reality sometimes, services provided are so well matched with the client and his or her situation that there is no waste and yet every disability-related need is met. OK, right, but the point is, the matching of service to need and the flexibility to treat each client individually clearly requires more management that one-size-fits-all solutions. Add to that our emphasis on integration and services being located in the home and in the community and it becomes clear that the quality-assurance and communications functions of administration are more demanding and more productive than in standardized, facility-based models of care.

The second thing that stands out is this: Administration and management interfere with the process by which individuals and their staff find their own way. Quality Assurance, service planning and coordination are all interventions in the organic process of person-centered support. Administration may be necessary or beneficial but it can easily be stultifying, invasive and counter-productive. Like this entire system, cost-benefit analysis should be applied to both administration and the regulations and policies that promote administration to make sure we do the optimum amount of administration the best way possible. I should clarify that by analysis I mean analysis and nothing that begins with "I think" like this post did.

Choice and Choices, Part II

2006-01-24T14:55:00.000-08:00

The process of filtering the client's IPP through vendor codes has two major costs. The most important is to the well-being of the client. This post will explore the less important cost, to the efficiency of the system.

To recap, the process of planning and purchasing support in California's developmental system begins with the client, those the client cares to have input and the service coordinator from the Regional Center, as well as any professional support providers in place to review the clients preferences, their disabilities and to plan for whatever support will mitigate the effects of the disabilities on the individual's aspiration. Good start if done correctly.

The next step is generally to attribute the supports to certain vendor codes based on matching needs with codes, but primarily based on Regional Center POS policies. At this point, the plan becomes centered on the vendors not the clients. The efficiency cost is this: If the POS policies are taken as gospel and they too often are, there can be a gap in resources which can only be bridged by purchasing the wrong support for too much money.

Here's an example off the top of my head but not theoretical. If a Regional Center tries to contain costs by limiting units of service available based on vendor codes, one can imagine (or name) a client whose needs exceed the provisions of the POS policy. If, as often happens, the regional center seeks to maintain those policies rather than make an exception, a client can fail to live in their own home, leading to a group home which leads to a day program which typically requires transportation. The result is, and this happens frequently in this system that when $5000 per year in support doesn't suffice to maintain a client in their own home, plan B costs closer to $40,000 per year while providing the wrong services for the client.

The response often made by people defending POS policies by vendor code is that they make exceptions when following the policy will lead to the client's living in a more restrictive setting. Heck, we're required by law. Anyone who works directly with clients knows how rarely this is the case. We go through this process. There is typically a long road into crisis and a longer one back from the brink. Clients in our program have died, ruined their credit or lost their health before the evidence that the POS policies were deficient became clear enough for the exception. The client who died now costs the State nothing. The others now cost the state roughly 6-8 times what the adequate level of support would have cost.

The result is that the system does not behave like a continuous array of supports to be tailored to the client's needs and preferences. It flows like lumpy oatmeal and people get involved in day programs they neither need nor want because the group home they didn't want to live in requires it. This is a costly problem that merits fixing for the sake of the budget if not for the sake of the clients.

An announcement

2006-01-18T14:41:00.000-08:00

Square Girl has generously agreed to write for this site. It's a big upgrade. Square Girl is a provider of Applied Behavioral Analysis to children with autism and a dedicated learner from them. Her blog, Girl Squared offers both the humility and cheerfulness that I simply can't provide you. Her analysis is very humane and compassionate and I can finally look forward to reading this blog myself. As a direct care provider, Square Girl has been recently confronted with how systemic dysfunction further challenges the children and families she supports. I recommend her site for wit and wisdom about her direct care service and look forward to the same regarding her perceptions of California's developmental disability system.

Part II of Choice and Choices will be up about the time I get off my dead butt and write it.

Choice and choices, Part I

2006-01-12T08:09:00.000-08:00

One of the great interruptions in the quality of lives of people with developmental disabilities, and a barrier to the efficiency of the system is the frequent failure to provide services on a continuous spectrum. The initial concept behind the Individual Program Plans (IPPs) is to assess the needs of the client in order to provide exactly what is needed to mediate the effects of the disability and provide for a meaningful life in the community. It's been widely agreed that the IPP is the central administrative and regulatory event in the provision of services in California's Developmental Disability System.

The IPP is designed to take into account the nuances that every individual brings to their own assistance. The client is expected to be both the central object and leading subject in the development of their own plan. The IPP carries every aspiration that well-meaning people have for useful service and every hope the taxpayers have for an efficient system.

Once the IPP is complete, however, the plan typically loses most of it's meaning as Service Coordinators try to allocate the meaning from the client's plan into vendor codes. Vendor codes represent modes of providing services and allow the delivery system to be regulated according to function. Most Regional Centers, often influenced by their vendor community and to a lesser extent, their clients, typically establish Purchase of Service policies (POS) based on restrictions on who can receive services from which vendor type under what circumstances and to what extent. This system offers efficiencies for the administration of a Regional Center but is just as clearly inefficient for the support of people with disabilities.

The processing of needs into codes might not be fatal where the understanding is, as it is in law, that the POS standards are guidelines for arranging things of lesser status than the POS. Essentially, the deal statute makes with the Regional Centers is: Set up your POS policies and if you can meet the client's needs within them great and if not, you must exempt the client from the policy. That's not the deal typically made between Regional Centers and clients which can often be summarized as I understand that's what you need, let me see what I got. I'll look at the POS policies.

Vendor codes makes sense to me. To assure minimum quality standards, it is necessary to regulate agencies and the vendor codes allow that to be done appropriately for broad categories of modes of service. For example, it is generally inappropriate to have three ILS clients being served by one staffperson at a time whereas at a site based program, the minimum appropriate ratio might be higher than that.

But given that services are placed in broad categories, keeping faith with clients and their IPPs requires that these categories be understood as ranges on a continuum not as separate and distinct modes. Seeking to fulfill a client-centered IPP with vendor-centered service purchasing betrays choice by limiting choices.

My (advocacy) New Year Resolutions

2006-01-03T11:34:00.000-08:00

Resolved, in 2006 I will:

1. Not lift one finger if the only motivation is to save the (present) system;

2. Be open-minded and constructively engaged in any system-reform proposals.

3. Continue to study, implement and support the development of more efficient and client-centered service delivery;

4. Be even crankier than last year except toward clients and ¡Arriba! employees. I want to break the record.

5. Assist CDCAN in the development of it's statewide network.

6. By the end of the year not be an officer of any board or committee, except the Pomona Valleys Foundation.

7. Kick an innocent child. Insult someone important. (By January 31)

About Comments

2005-12-30T19:29:00.000-08:00

In order to prevent disruption of the comments on this site by spammers and taggers, I am disallowing anonymous commentary. N.B. This does not require someone to expose their actual identity. If you wish to comment on this site without disclosing who you are, you can establish a free account by registering with blogger. These accounts do not require anymore information than an email account which can be blocked from view in the "Edit my profile" section of your new blogger account. I apologize for any inconvience.

OK, I got a bunch of spam on this very comment so now there is a verifier requirement. I think it may be difficult for people with certain disabilities to use, so if you wish to comment and have trouble, there is an email address connected to my profile and I will be happy to post comments even if I disagree with them. No profanity, though, please.

Value Stream Management, Summary and Conclusion

2005-12-05T13:28:00.000-08:00

The Lean model proposed through Value Stream Management offers moral excellence to the agencies serving people with disabilities. The Lanterman Act promises choice, integration, health and safety as outcomes of three billion dollars in funding to Californians with developmental disabilities. The statutes passed within the Lanterman Act, the regulations produced under the Lanterman Act and the policies and procedures of our agencies, however promise next to nothing.

The assurances that do exist fall into two categories. Caseload ratios, provider qualifications, records responsibilities and board membership standards are all process requirements which partly define costs but have no measured bearing on client outcomes. The outcomes promised and measured, mainly on Individual Program Plans (IPPs) and Individual Service Plans (ISPs) rarely get followed up on. In other words, quality is neither designed into nor inspected into this system.

Every professional working in the system and every client and family benefitting from it does so toward the purpose that people with disabilities live better, more meaningful lives of greater consequence to their communities. The accomplishment of that goal is a moral good. Any waste absorbing resources which would otherwise serve the goal of the system is an ethical taint on those who tolerate it.

Advocates frequently point to poor funding by the state and lack of responsiveness of regional centers and their vendors as the great evils suffered by people with disabilities, but I submit that the most plentiful errors depriving our clients has been the systemwide failure to account for and eliminate waste. Furthermore, as long as this is the case advocating for resources is hampered by our inability to assure lawmakers of what the benefit will be from greater investment, if any.

W. Edwards Deming, the statistician Total Quality Management guru famously argued that quality cannot be inspected into a system, it has to be designed in. At the end of the day, the most compelling moral challenge to the constituents of this system is to build in process which eliminates waste and improves quality. Until that happens, the contrast of client-centered values and labyrinthine process will remain an unfunny irony.

Value Stream Management, Perfection

2005-10-13T15:38:00.000-07:00

The fifth and final step in developing a lean system or agency is the pursuit of perfection. Most of the inefficiencies in our system are the cumulative effect of years of making habits out of responses. In a system or agency that has followed the four preceding steps, it is likely that over time, persistent new forms of waste will inevitably develop. The result would likely be a magnificent, transformative improvement eroded over time.

The alternative to this is to continuously address waste through a permanent team. Value Stream Management was pioneered in Japan and two Japanese words are used to describe change in this context. Kairetsu refers to radical change and the expected result of a VSM transformation. Kaizen refers to incremental change. Kaizen teams are a continuous presence bringing representatives from all along the value stream seeking waste, either waste that was not recognized during Kairetsu or new waste that finds its way into the system later. The lean agency commits itself to a permanent war with waste.

The result, in industry, has been a massive reduction in cost at the outset, but also small, incremental reductions in cost forever after. When we talk about cost reductions within this system, the assumption is a reduction in quality. Remember that part of this process is to have the client define quality. Eliminating waste improves quality while reducing costs.

Value Stream Management, Pull Value

2005-10-12T11:16:00.000-07:00

Traditional models of enterprise are based on production. The producer is at the center of process which also includes vendors and buyers. From the producer to the buyer, we can think of this as a process of pushing goods and services. The firm designs, generates, markets and sells its wares to an end user. The communication between producers and end users consists primarily of the producer convincing the customer that what is offered is valuable and the feedback from a potential customer who chooses to believe and buy or go elsewhere.

I'll argue that most of California's system operates on the push model. The seminal event in the availability of a service or support comes when an agency creates a service design and presents that to the Regional Center for vendorization. The Regional Center may then offer that service, as designed, to a client. Although some agencies (such as ¡Arriba!) submit minimal service designs with the intent that the actual service provided will be designed by the client, the system model is clearly designed according to the old industrial pattern.

In a lean system, this model reverses. The analysis, process and activity are all designed around the idea of pull. In other words, the end user defines the value. Instead of a series of suppliers beginning with miners and farmers and ending with a consumer, we look to a series of customers leading from the consumer back through the value stream. The macro process would look like this, there is a meeting at which the client describes his or her situation and what they want. The professionals attending that meeting would then be responsible for providing the support indicated to the client which they would seek from either their superior or an outside agency. They are now the customer pulling value from up stream. It's like The Lanterman Act only for real.

Value Stream Management, Make Value Flow

2005-09-29T11:10:00.000-07:00

The next important concept in a lean agency is making value flow to the client. Basically, this means the identification and elimination of barriers, delays, redundancies and any other waste. Beginning from the customer's perspective, the parties closest to the client examine all that they do and need in order to create value for the consumer. Are any steps taken unhelpful or counterproductive. If so those steps should be eliminated, unless they are required by compliance. In that case effort should be allocated towards changing the requirement.

The next step repeats the previous one with a new customer. Now, instead of the consumer, the direct care worker (DSP) is the customer and those who provide resources to the DSP evaluate their activities, eliminating any waste of time, treasure, effort or energy along the way to providing the DSP what he or she needs to provide value to the client. As above, some waste will be immediately correctible and some will be in service of robust statute, policy or regulation. Either way, that waste (called Type II waste) is as bad as the correctible (Type I) waste.

To make an agency lean, these step should be followed not only for the entire heirarchy at the agency, but as far back in the Value Stream as can be observed. At each step, the purpose is to eliminate wasted functions. As the process goes on, it will be mapped in terms of tasks, not jobs. At each step, the influences causing Type II waste should be recorded for the purpose of advocacy.

When this process is complete, all the Type I waste should be eliminated and value will flow more quickly and efficiently from the finding source to the client. It should be noted that in this system, real leanness will have to change regional centers and DDS as well as vendored agencies.

Here's an opinion. I suspect this system has an absurd amount of waste and that a ridiculous amount of it is of Type II.

*****Second section

I received Spam as soon as I initially posted this. I don't like spam but haven't taken precautions against it because one option eliminates anonymous posting (although it allows a person to take a name not their own) and the other includes a verifier which could be hard for people with disabilities. How would you, dear readers feel about a requirement that you identify yourselves (as anyone or anything) in order to make a comment?

Value Stream Management, Identify the Value Stream

2005-09-16T12:40:00.000-07:00

Apologies for my neglect of this site, now, where were we?

Once value is specified in terms of what the client wants, the next step in developing a lean system or organization is to identify the value stream. This refers to the sequence of actions that bring resources forward toward the end client. It includes everything the agency does, but also everything their suppliers do. In California's system, for example, the process of becoming lean would start with what the client needs and look at how the direct support staff provide for that. The next step would be to look at the both the program design and the supervisor and how each provide the needed resources for the direct support person to serve the customer.

Value Streams when looked at honestly are extraordinarily complex and long, and rarely confined within a single agency in manufacturing. Certainly not in this system. This does not mean by itself that they are wasteful or inefficient. The economist, Milton Friedman once used a cover photo on one of his books depicting himself holding a pencil. The point of the photo was the pencil which contained rubber from Indonesia, metal mined in Central America, wood from canada and graphite from somewhere else (it's been awhile since I read Friedman) and were assembled and sold in the United States for a dime apiece.

A rough example of a value stream might be as follows: A male Supported Living client is hungry so a staffperson cooks for him using food purchased by another staffperson with money delivered by a Supervisor. Those funds may have been given to the Supervisor by an agency comptroller who cashed a check with funds for several clients received from the regional center as the fiduciary for Social Security. On another branch of the Value Stream, the employee cooking was following a person-centered Individualized Service Plan (ISP) which authorized cooking and described any parameters to the meal. That ISP may have been reviewed by a supervisor and must have been also reviewed by a regional center employee, signed off on by a Program Manager and funded. Both the funds and the terms of approving the ISP were delivered to the regional center from DDS based on allocations and controlling statutes set forth by the California legislature. If the client was eligible for the Medicaid waiver, a second branch of the allocation and regulation process travels through the federal government.

There are three things that I believe can safely be said about the process above:
1) That it is an oversimplification of the value stream leading to a single client eating a single meal,
2) That it probably repeats tens of thousands of times per day in California, maybe a half-million times per year.
3) That it probably doesn't go smoothly every time at every step. Even 99% success reflects a lot of defects in a tiny portion of the overall community-based system.

Taken together, if the assertions above are true, there exists extraordinary potential for both improving the satisfaction of clients and reducing the cost of the system. Just in the preparation of meals. Just in Supported Living clients.

Note: Because demons have prevented me from updating this site regularly, I am adding a feed to the links. People interested in this site who have browsers with RSS capability can bookmark the link marked "Pay attention!" to be notified of updates.

Value Stream Management, Specify Value

2005-08-01T14:43:00.000-07:00

The first step in Lean Thinking is to specify value: What will our whole process from the legislative appropriation through the client create, and what that should cost. At this step, original and comprehensive thinking are crucial. For example, in our system, we often treat the service provided as the outcome. I suspect that we think this way, because in our system, the service is, in fact, the last compensated part of the process. Sometimes assigning a value to the service doesn't seem like such a good idea in case someone compares the cost, but this is why we try to fix stuff.

I would suggest that in the system design, value is creatively and well described. We say that the system exists so that people with developmental disabilities can choose and experience lives similar to their non-disabled peers as fully integrated members of their community. To this we add health, safety and dignity at least in interactions with the participants in the system. This isn't very specific, but it is humane, measurable, creative and comprehensive. The current specification in statute of what that should cost is "whatever it takes" which may be unsettling to many taxpayers and politicians but it won't be me pushing for a hard number. It may be useful, however, that if Lean Thinking settles in that some rationale for costs may actually be useful in providing better lives to clients.

So we have three pieces of our value specification:
1. The outcome of the system is that people with developmental disabilities will live in a manner of their own choosing a life equivalent to that of a non-disabled peer as an integrated member of their community.
2. The client's experience of the system will be dignified, attentive and safe.
3. It will cost whatever necessary to meet the first two value propositions and no more.

That looks pretty specific to me, although we can debate how often those propositions are really carried out. I would contend that everywhere in this system that we are not conscientiously specifying value the implied value specification is this:
1. The outcome of the system is that people receive services of their choosing.
2. The client's experience with the system will comply with Regional Center policies and state regulations.
3. Costs will be in line with those incurred by other clients deemed similar.

So, I would say the system is relatively successful in specifying value but wholly unsuccessful in remembering or communicating the specification.

Value Stream Management, Introduction

2005-07-22T09:45:00.000-07:00

This series of posts will propose a new concept of leanness from the one used currently in our system and outline a roadmap for getting there. This introduction will contrast the proposed definition to the one typically used and lay out the parts of the lean roadmap, which will make up the next five posts in this series.

The idea of leanness in a chronically underfunded system usually refers to underperformance. When we talk about how lean our agencies have become, we usually refer to things we feel we should be doing or be doing more of. My friends who run agencies might point out regulations they no longer comply with, a reduction in Quality Assurance activities, services that our clients need or want that they no longer offer, etc. The failure to perform key tasks is a predictable outcome of frozen rates and growing mandates, but it's better described with the word erosion than leanness.

I remember an old joke about the guy who lost 20 pounds of ugly fat when he was decapitated. That's a good metaphor for our concept of leanness. The usage in Lean Thinking refers to the elimination of waste. Waste can be found at three levels,
1. Activities and costs that do not actually generate value for our clients,
2. Activities and costs that could generate the same amount of value with less investment if done differently, and
3. Activities and costs for which there are substitutes that generate equal or greater value for clients with less investment.

I think most agencies serving California's people with developmental disabilities are about as eroded as they can be. I would argue that none, including the one I run, are as lean as they should be. Growing leaner is a process of increasingly and consistently directing dollars and energy into creating value for the people we serve.

So, the roadmap outlined by Womack and Jones follows the following process.

Part I: Specify Value, defining what needs are served;
Part II: Identify the Value Stream, recognize the contributors to the generation of the value specified;
Part III: Make the Value Stream flow, this step represents a radical reimagining of how work is best done with a focus on seeking and eliminating waste;
Part IV: Pull, which is a corporate analogy of person-centered support; and
Part V: Perfection, which institutionalizes a permanent and continuous process of improving steps I-IV.

So the next five posts in this planned nine-part series will look at each of the parts of Lean Thinking in the context of California's system of service and support for people with developmental disabilities.

New series of posts-Value Stream Management

2005-07-15T09:59:00.000-07:00

Thanks to everyone who wished this site a happy birthday or blogiversary or whatever it was. The next series of posts, probably nine in all will discuss the benefits of Value Stream Management as a paradigm for reform of this system. The series will roughly follow James P. Womack and Daniel T. Jones' book Lean Thinking.

There are a few reasons that Value Stream Management (VSM) is an attractive model. The first is that the concept of "Let the customer pull value" is essentially a business-world equivalent of person-centered thinking. The second is that the paradigm defines efficiency in a way that I find much more engaging than the normal way that we discuss the idea in this field. Those of you who have known me for awhile know how pessimistic I am that our system will ever be fully funded to operate under the current structure. The real hope for a better system falls to redesign and reimagination. A third reason is that VSM promotes honesty and transparency regarding the possibility of doing things better.

A Disclosure: I am currently working with partners to develop an instrument for applying the concepts of Value Stream Management to our system. While I certainly honor objectivity, I should admit that I both have already made up my mind as to VSM's value and hope to profit from its application.

Bouncing baby blog

2005-06-22T05:53:00.000-07:00

Happy first birthday, little Developmental Disability System Reform. You're number one on Google and number one in our hearts. Back to the mine!

Self-Directed Services: My endorsement

2005-06-17T08:11:00.000-07:00

I support self-directed services (SDS) because in concept, SDS programs empower people with disabilities by removing some control from service providers (including both Regional Centers and direct service-providers,) because an effective SDS program lowers the cost of quality in services and supports by involving the person best able to control costs in the negotiation for price, and because without SDS the integration and sovereignty sought by the DDS system for people with disabilities are largely absent from its workings.

The current proposal adopted by the legislature's budget conference committee certainly will implement the initials SDS and may well lead to the actual manifestation of its meaning. The ban on using SDS while a client lives in a congregated facility or uses a day program certainly limits both the choice of clients and the benefit to the system and the state. The failure to specify the role of service coordination staff in SDS, which may or may not occur in writing the regulations, leaves up in the air how much actual control will pass to people with disabilities and, therefore, whether or not this new program meets its goals or produces significant benefits.

Fears as to whether the regulations being developed will follow the normal process of public input have placed many erstwhile supporters of SDS into a skeptical state.

All of that said, this proposal is the most promising reform to come this close to implementation. So, I endorse the SDS proposal with the anticipation that legislative and regulatory corrections will be needed to implement SDS itself.

What's the matter with the Self-Directed Services Program, Part III

2005-05-19T16:41:00.000-07:00

May 18, 2005

Re: SDS

My professional angst regarding the development caught a second wind. I always do share my winds, so here’s the breeze: What if SDSP passes, is implemented and still doesn’t happen. The way this could be so? If the protection features built in create an environment in which the control that clients have over their services actually declined.

Here’s the new data: Regional Center (RC) Service Coordinators (SCs) are intended to review monthly whether potentially very broad language from the clients Individual Program Plan (IPP- I know, I know) to decide whether it was being implemented appropriately. Under the current program, SCs have more frequent interaction, more discretion to intervene and more ways that they are accountable for outcomes. A rational SC who sees SDS as values-neutral would take more control of client services under the new proposal than the current system.

The essential point is that Self-determination will not achieve it’s stated goals unless it transfers authority to clients which simply won’t happen unless responsibility transfers as well. The best and worst professionals in the system regularly circumvent controlling regulations and can be expected to do so in opposition to the purpose of SDS as long as they remain responsible for all the client outcomes. It has to be in everyone’s interest that the client controls services or else we’ll have fake self-determination to go with fake entitlement.

I know this looks ugly in print, but ideally under SDS, the client with their FMS and Service Broker have to have sole responsibility for things that Regional Centers are now accountable for. Examples might include the following:
ÿ Preventing morbidity and mortality,
ÿ Decisions to work or not work and how and where,
ÿ Progress that is or is not made (clients must be allowed a learning curve,) and
ÿ The extent to which the individual participates in the broader community.
This doesn’t mean that clients in SDS should not be counted toward all policy goals, just that RCs shouldn’t get credit or blame for the outcome.

What makes SDS bold, is the trust it places in people with disabilities to serve their own best interests. What makes so many current programs so sucky is the failure to trust the client. Here are a coupl

1. SDS participants should count against a separate performance contract for their Regional Centers. The new draft of the proposal, makes a good start on developing a new one, but doesn’t yet separate from the old one Taken a step further, vis-à-vis an SDS client, RCs should be more responsible for providing control to SDS clients and less responsible for traditional policy outcomes. Appropriate language might state that all the metrics now used for RCs will be reported to and recorded by the Department, but not apply to the RCs performance contact. The SDS outcomes can be used against those from the performance contracts to measure the success of both programs as compared to one another and provide policy guidance into the future.
2. Clarify new roles. Limit what SCs may do to a very simple role that only makes sense if we are empowering clients. Limit service providers’ responsibility for documentation, to clarify that services delivered under SDS are accountable to the client alone (and through the client to the RC for purposes of documentation. Everyone affiliated with an agency remains a mandatory reporter, and obviously, the documentation left must allow for reasonable assurance that services are being rendered. Paperwork requirements that document anything other than services actually rendered should be discontinued where service providers are concerned.

What's Right about Self-Directed Services

2005-05-16T10:54:00.000-07:00

OK, so the Self-Directed Services Program (SDS) proposal has flaws and has been managed imperfectly. Here's why I want SDS to pass anyway, and what I plan to do about it.

Self-Directed services differs from the current system in this way: Those who choose SDS sacrifice a (theoretically) flexible budget spent on restricted resources for a restricted budget which can be spent creatively. This produces a number of efficiencies, such as reducing the principle-agent problem which inflates costs, straightening out lines of accountability, and improved opportunity to find and use resources which lead to lasting changes in the ability of the client to participate fully in society.

In this way, SDS can be expected to lower the cost of quality in support for people with developmental disabilities, improve the harmony between what's needed and what provided while institutionalizing the personal sovereignty sought by the Lanterman Act within it.

Here's my thinking about what to do in seeking SDS as a part of a richer system:

First and foremost, the community needs to take the ownership of SDS. The negativity that many of us feel or have felt toward this proposal seem primarily directed at the parts of the proposal that are not organically SDS. Examples include limitations on client choice, on due process, and on oversight. These elements of the proposal don't arise by necessity from SDS and in fact, diminish SDS and place the success of the program unduly at risk.

Under the U.S. and California constitutions, the part of government meant to belong most directly to the people is the legislature. To this point, DDS has been defining what SDS is to the legislature through proposed trailer bill language. That language is close enough to right that the community needn't write much. I plan to direct my attention to communicating the purpose, importance and optimum design of SDS directly to my legislators and Senator Chesbro. I urge my friends in our community to do the same.

What's the matter with the Self-Directed Services Program, Part II

2005-05-09T06:04:00.000-07:00

A continuation of the second-guessing from the previous post, this series is meant to be commentary on the response to SDS rather than an analysis of the program proposal. Today's scolding: The proper usage of the word "voluntary."

An apparent disconnect between direct policy-makers and the community comes from differences between how the first group uses the term "voluntary" and how the second group hears it. On CDCAN townhall telemeetings, there has been frequent use of the term which seems not to be convincing a lot of the community.

To the direct policymakers, the fact that the program is voluntary means it doesn't have to work for everybody. To the community, there seems to be a sense that "voluntary" means the program needs only to work for the people DDS likes best. The difference was clearest on two recent conference calls when people described the pilot project participants as pioneers and others referred to the same group, essentially, as the anointed. The difference reflects something that I believe I have also detected, that there has been a broad, community-based but group of fierce advocates with strong values that believes itself to own this program and a far broader group with a strong interest in SDS that feels unincluded. The truth is, it is easy for government to find anointed pioneers and hard to find most of the others for whom this program should also be designed.

Nonetheless, this program is emblematic of how the State sees our community, and offers the kind of reform that break the cycle of a system growing more expensive and less successful. The failure of SDS to be implemented will break a lot of hearts, but it's failure to succeed broadly once implemented carries more tragedy. The voluntary nature of SDS justifies the a trade of rigidity (budget formula) for new choices. It remains important that the program be designed as robustly as possible whether it's voluntary or mandatory.