Wednesday, December 10, 2008

Rushing Reform

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.

Tuesday, November 11, 2008

The Governor's New Proposal

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.

Thursday, October 16, 2008

The Obama rate increase

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.

Wednesday, September 10, 2008

Channeling Paul

In the comments to the post below, Paul wrote: 

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.

Tuesday, September 02, 2008

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

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.


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.  

Monday, July 14, 2008

Capitalism, Freedom and Inclusion

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 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.

Wednesday, June 25, 2008

Entitled to what?

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.

Friday, May 30, 2008

Families and Reform

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.

Thursday, May 15, 2008

Well, that was kind of sensible, mostly

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.

Monday, April 28, 2008

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

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.

Monday, April 14, 2008

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

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.

Friday, April 11, 2008

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.

Wednesday, April 02, 2008


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?

Tuesday, March 25, 2008

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.

Friday, February 29, 2008

Whose quality?

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?

Friday, February 01, 2008

The Great Debate: Congregate?

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:

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.

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?

Tuesday, January 22, 2008

Brand New Same Old?

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.

Wednesday, January 16, 2008

A return to Heurism and/or Wereism

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.