Controlling Regional Center Costs.

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.

Two bills.

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.

The end is nigh, eat at Joe's

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.

Peer Pressure

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.

Newish Day, Day 1 in the Garden

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.

Oracle

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.

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

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.

An announcement

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.

My (advocacy) New Year Resolutions

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)

A New Day- The Prequel

Next week, the Association of Regional Center Agencies (ARCA- for definition of a Regional Center see the archive, July-ish) will hold a two-day conference on non-traditional supports for people with developmental disabilities. It's pretty hard to tell whether or not the conference has changed since it was about more inclusive day programs or whether the language was broadened. It's good to see Regional Centers engaging new ways of doing things as a group, and I applaud at least the purpose. I'm hopeful that this will be a useful, constructive, maybe transformational event. Not suprisingly, I'm a little cynical as well.

The first red-flag is the density of the programming. I think there will be dignitaries giving plenary speeches and sitting on panels for about 15 of the 16 hours. The content seems built around the idea that most people don't know what to do, but once told, might obey. That is the paradigm for dialogue in our system and it's more pervasive than good well or, even, disability. My hope that this event has value apart from the Super Bowl party on Sunday is pretty much pinned on the idea that the panelists in the workshops have been given a 4-minute time limit.

The unrecognized reality is that nearly our entire system (based on my five-year sample of people I talk to) agree about how the system should serve its clients. Every State bureaucrat, Regional Center bureaucrat, Vendor Bureaucrat, parent, client and demagogue involved agrees that the system should be more client-centered, customized and responsive. Pretty much all of us are trying. Most of us are somehow a great deal smarter and more innovative than the conversations we have together. Most of us have more insight than the experts we bring in to explain things to each other.

So the hope is that we can mark a change in tone from next week. More of the soul-crushing same is too painful to imagine but exactly what the conference agenda suggests.

Here's what I hope, though- The Monday morning dignitaries point out that the system's been talking and writing its brochures along these lines for a long time. If the system hasn't delivered everytime, or most of the time, or often enough to mention- it's probably because there are systemic barriers to the transormation. Not a lack of will or a lack of intelligence, just stuff in the way. I bet if we started to talk about where each of us (the not experts) encounter the barriers, we could really start to change things.