Save your self(-determination)

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.

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 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.

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:

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?

Apologia

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.)

Choice and choices, Part I

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.

Self-Directed Services: My endorsement

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

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 the matter with the Self-Directed Services Program

The self-directed services (SDS) proposal been developed simultaneously by the administration and the legislature is encountering resistance bewildering in light of the almost universal wish for SDS. Notwithstanding that I've written about this a couple months ago, I thought millions of people probably would like an update on my thinking, hence this post. Following is my interperetation of the resistance to the current SDS proposals.

First of all, our community is by and large suspicious of anything printed on DDS letterhead. I suspect giving the magnitude of change represented by SDS, some portion of the current concern would manifest. While I have suggested and am about to resuggest that DDS made mistakes in the development of this proposal, a perfect draft would not have met hosannas. I think the response is fair in light of history, but probably not fair to the current proposal.

A second source of worry in the community has to be a fear for the programs which frequently serve clients in the current delivery system and are unlikely to serve clients, regardless of the final language. Many of these programs are barely surviving now and even if SDS only enrolls 5% of California's people with developmental disabilities many agencies are rightly threatened with a change or die crisis. Not only entrenched professionals but people who benefit from those agencies are rightly concerned about SDS.

That said, there are a few almost bewildering elements of the proposal which keep coming up in community fora like the 6 (to-date) CDCAN teleconferences, meetings at Regional Centers and other public events where this topic comes up. Good things to fix, if this proposal is going to find the acclaim many of us expected. These changes are more than political and more than cosmetic, many of us want SDS to succeed, not just pass.

The clearest of these is the foggy funding proposal. Althought the program is voluntary and people are free to leave if they don't like their budgets, it is very hard have faith in a capped budget based on factors that are aren't available. It would be very helpful if DDS would develop and publish their formula, bearing in mind that there is no reasonable formula which won't bring out some of the torches and pitchforks.

To me, the most infuriating source of concern (but far from the most important) is the (softening) language that forbids SDS participants from using congregate (group) programs. This does not infuriate because I advocate for, use or provide these types of services my family and I don't. It infuriates me for these reasons:
1. This program is primarily about choice, and significant choice is being obstructed because of the (noble) values of the DDS and regional center employees and pilot project participants. This program doesn't belong to anyone except ALL people served by this system who think they can provide better for themselves at lower cost than their service coordinator can.
2. The exclusive language makes the overall proposal needlessly more complex than it already is, insuring extra unintended consequences.
3. The exclusion, which is unnatural to the purpose and generates extra risk to participation, also provides a target for those few who don't want SDS to happen. Politically, it just doesn't make sense.
4. It fails to account for the lives many clients lead. There are a significant number of clients who can benefit from SDS who will with considerable risk and, therefore instability. Several ¡Arriba! clients are capable of living well for years in their own homes but periodically encounter challenges that require them to spend short terms under more intensive care or monitoring. These clients could be well-served under SDS simply by not hindering them.
5. Finally, it's unnecessary, dammit. Phil Bonnet, the admired Executive Director of one of the pilot project regional centers recently said that of the 120 or so pilot participants none chose to spend SDS funds on congregate services. SDS is likely to satisfy the thirst for more included lives with no regulatory help. Of course, that's the bad news for those who are concerned for congregate agencies. It'll still be change or die time.

Aaah. I'm a little vented. To be continued. For now, let's just say that publishing a budget formula and deleting all language that exists in order to promote inclusion would improve the proposal itself as well as its reception.

The next new day: Second Plenary

Topic: Preparing People with Disabilities to Perform Meaningful Work in Integrated Environments
Speaker: Lou Brown, Professor Emeritus, University of Wisconsin

Talking about two populations. People with severe handicaps and people

President Bush's Commission.
If you have the label of developmentally disabled or cerebral palsy in Florida you ar 85% likely to be unemployed.

Referrrals to:

Skill training program?
Community College? "A stay of execution"
Segregated Workshop or
Sit at home

What happens to people with disabilities when their parents pass or become unable to care for individual.

Entitlements, discretionary program, therapy, paraprofessional, door-to-door service, and then at 21, individuals want the same things.

Academics? Algebra, Canterbury Tales, customs in foreign lands.

As adults: Sex, money, privacy

Replace clients in workshops with a wax replica.

Integrated work environment:
General environment, use natural proportuin
No more than two with disabilities in the immediate work environment.
Must work within sight sound and touch of coworks without disabilities.

[This is too funny]

Chamber of commerce definition of work: "If she doesn't do it I have to pay someone else to do it."



"Sorry. Intelligence is not distributed equally across people. If you knew my mother-in-law you'd understand why I think that."

Work, community and citizenship diploma. This is the goal.

If the goal is to keep unemployment high? What could we do?
Regular education with a 1:1 paraprofessional. Make sure they're exposed to abstract academics. Eliminate social promotion. Lower age at which you can quit school. 2000 kids quit school because they couldn't pass the high school entrance exam. Put more people in special education. Segregate schools and classes. Hire teachers with emergency credentials. Confine a structure to school grounds. Hide disability, don't talk about it.

What does job ready mean?

If the goal is to increase employment we can:
Use a portfolio of the skills the child we need. Teach to do those things in the real world. Teach to be nice, work hard, be reliable, on-time. Don't do for someone what they should be doing themselves. Testimony to their competence, talent and hard work. If you are employed 20 hours per week with benefits the last year of school, chances are you will be employed all your life.

Proposal:
Get employers to open the doors by:
-Generate work training and employment options
-job analyses
-match worker with vocational setting
-Provide authentic assessment (in the real world
-Shift to natural supervision-
-Arrange support needed indefinitely

Tools for finding the jobs:
> Parent dream lists- when do you think your child will leave school, where would you like your child to work?
> Environment, activity, social needs
> Personal preference
> Corporate commitments
> Personal relationships
> Job development circle
> Vendor list
> Canvassing
> Quid pro Quo

Easy part is finding the jobs. Hard part is getting school personnel off-campus to introduce students to real world experience.

Job Analysis:
-What work is being done?
-Who is doing it?
-Can we do a part?

Horizontal enhancement and vertical enhancement
Vertical: Greater complexity. Horizontal: New things, similar complexity.

"The more people we give chances to, the more amazed we are by what people can do."

Lesson: Rather than giving many people disabilities access to a single work environment, give each person with disabilities access to many.

Self-Directed Services: And another thing!

It was raised today, again, about the barrier to using SD in a congregant setting (one in which more than one client is served the same way.) I have the deepest admiration for the minds and hearts of people who put together California's SD waiver and even why they chose to proscribe traditional services. Ultimately, though, the point of self-determination is the assumption that the client can decide what supports fit best. That makes it pretty hard to reconcile with regulations (proposed) that tell the client what not to decide fits best.

The strongest advocates for SD also tend to be the most passionate opponents of the traditional service system. As such, I'm on their side and trust them to be on mine. Nonetheless, it seemed like a pretty insular development process and the community hasn't been given a lot of time to digest and respond and argue for changes. I wish that were different. I think a good product could have been better and more honest had it been written more in the sunshine.

*** Correction -2/10/2005 ***
I have been told by a good friend, whom I trust, that significant effort was made to have the development process be open and transparent. Apparently, there was steering committee and anyone who inquired was meant to receive drafts and invitations. I certainly accept that pretty good outreach doesn't always mean everyone finds out about everything and that the process may only have seemed insular to those of us who were interested but didn't find our way into the mix. Apologies to anyone who felt the comment above was inaccurate or unfair.

Self-Directed Services: The mini-series

On a recent CDCAN teleconference (See post dated 6/22) Julia Mullen, one my favorite people, presented the long-awaited as-yet unfinished waiver proposal for self-determination. My phone started ringing pretty quickly with brutally and predictably successful attempts to have my opinion on the topic. Self-direction is a tidal reform, as potentially important as the Lanterman Act was in it's time. So, the fact that it could arrive over the next few years as a viable alternative for many people with disabilities is: exciting, scary, encouraging, troublesome, hopeful, sinister, etc. Like all big change, really.

Also, there are a lot of issues- some conceptual and more that occur in the space between theory and practice. After the teleconference I decided that my next few posts on this site would be a series on some of the issues that I think are important related to self-determination, with maybe a one-off post next week on a Christmas-y theme.

First- the primer: Self-determination (self-direction ((SD)) refers to a system in which individuals or families served are given a budget to control. In the traditional system, Regional Center staff determine what the client needs and procure something similar regardless of cost under a host of regulations that define and limit and motivate and control available resources. The services are controlled, but the cost is not. Under an SD system, the cost is prescribed but the services are regulated primarily by the client. The person served has a great deal more real control over services including a larger share of the oversight, accountability and right to define what (or who) is a useful support.

Now, the introduction to the upcoming series:

The postings on self-direction will try to approach a lot of the issues around SD in general and the current contents of the waiver to be proposed. The goal will be partly to demystify what is being proposed, to clarify which parts of the future regulations I feel really need to be written right, and, in the name of full-disclosure, to advocate that our community seek to refine SD but not to block it. In the end, my biggest fear about the future of SD is that we will allow the perfect to be the enemy of the good.

First-thing to know: As Dr. Mullen described the upcoming regulations, California's SD program will be voluntary and accessible in both directions. The promise, and its an important one, is that everyone who fears SD, or is served badly by it, will be free to remain in or return to services under the current model. I do fear that the blackhearted gnomes who run many Regional Centers will use the SD option to tighten control over client's served under the traditional model, but generally as long as the system is truly optional in both directions, there is no erosion of clients' rights.

So: Here are the big issues around SD that I see as deserving the inquiry of our community. Subject to any feedback I may receive later- these will be the topics I'll cover in this series:

1. SD is reform, not "reform." Here are the differences between reform and "reform:" The former actually creates efficiency and lowers costs in parallel with lower funding in order to maintain or improve services. The latter is 99% more likely to occur and is bull-sign.
2. SD, if done correctly and honestly, will erode the importance and budgets of both regional centers and vendors (in the aggregate) in California's DD system. If it doesn't, it won't work.
3. SD will increase the opportunity for fiscal abuse of people with developmental disabilities. Expect to subtract from both the new freedoms and the new savings generated, costs and controls related to preventing. identifying and prosecuting abuse. The mandatory fiscal agent is a positive example of the costs and control above.
4. The savings threshold planned may be unrealistic for a while. The current plan calls for individuals in the SD program to have budgets which average out to 90% of the current cost of the program and to hire a fiscal manager (paid for from the 90% remaining) to share the oversight role. When I ran numbers looking for savings under the SD model, I came up with an initial 12% cost-reduction for services to be shared between the state's budget, the client's level of support and my own operations. One way the SD program might fail is if the benefits to the client and provider don't materialize. I would strongly encourage a phased-approach to savings.
5. Remember that the success of SD as a concept depends on a marketplace for services and supports that needs to develop and mature. I expect SD to succeed in the medium term but it may well seem a catastrophe six-months in.

Institutional Institutionalization in the community-based system

A few weeks ago, I was at a meeting with, among others, a woman (G) whose son (T), in his late teens with severe disabilities and superb gifts, was seeking assistance of the type our system was always intended to provide. G and T wanted support which would follow the choices T makes and the goals he seeks to attain. They wanted humble agency(ies) to provide individualized services. When Assemblman Frank D. Lanterman proposed the radical legislation that created California's community-based system as an alternative to institutionalization he specifically envisioned a system that answer this call. In the 35 years since Governor Reagan signed the Lanterman Developmental Disability Act, every advocate calling for support to our system or opposed changes to it have argued that Californians with developmental disabilities are owed exactly what G and T have asked for.

And yet, as of meeting G, she had been unable to find what is so clearly promised to her son. It's a disappointing moment that calls a lot into question.

How can we, every time a reform is proposed that we don't like argue the moral necessity of providing individualized, client-centered services if people who want them can't find them?

How will we demand the State pay the full cost of a community-based system when the $3 billion dollars already provided by the State and Federal Governments seem to be buying something else?

What does California's Community-Based system of support actually provide and why isn't it what its supposed to be? Can we get there from here?

To discuss the last question, I'm confident that we can get there from here. I think the system is readier to meet clients where they are and follow them than the number of conferences on bridging the gap gives it credit for. Most service providers and staff and many Regional Center personnel know how to listen and be humble and try things they don't know how to do. There isn't much else I would see in terms of needed capacity.

There must be barriers, though. When I met G, all she and T were looking for was basically to see the Lanterman Act enacted. And yet, G and her advisors were having trouble finding a ready provider. Wanna know what I think the barriers are?

I think the system designed as an alternative to institutionalization retains relics of exactly that system. The whole system of accountability is designed to work best when the Regional Center is in charge of the provider who's in charge of the client. We can talk all we want about clients owning their services, but as long as regional centers can punish providers for the natural consequences of client's informed choices (or the preferences of the family,) providers who serve humbly are resisting not following the natural design of the system.

There are other relics. What many in the system call the "big three" when they talk about services- i.e, residential group-home, day program and transportation is probably the most common service configuration. Why is it so common? It's probably the cheapest price-point for providing 24-hour care. It's also, essentially an institution without walls. It matters that there are no walls, but it is interesting that the community-based system so often emulates the experience of the institution.

The true, often hidden, brilliance of the community-based system was that it would allow individuals with disabilities to select their own preferred balance of risk and reward. If any law or public administration interns are reading this, a great project would be to review Titles XVII and XXII of California's Welfare and Institutions code to determine what percentage of the regulations bias DDS, Regional Centers, Providers and Clients against higher-risk solutions.

Three great values that sometimes go great together

During the ILS Coalition conference, a consultant to the state legislature talked about the conflict between emphasizing choice and emphasizing safety. It's a real comfort to see someone get this and I wanted to write a little about the values in our system and how they interact.

I think there are three main moral values written into state law regarding support for people with developmental disabilities. These three values are unanimously supported (at least in public but I think with general sincerity as well) throughout our community. These are:
1. People with developmental disabilities should live lives and pursue goals of their own choosing,
2. People with developmental disabilities should be as safe, as healthy and as well as possible, and
3. People with developmental disabilities should be integrated into the community as substantially as every other member.

These three values sometimes align with one another perfectly. Other times, these two or more of these values conflict or compete. A cliche we use is "People should be free to choose, but you don't let them jump in front of a moving bus." The problem with the metaphor is that it's a metaphor. What is the threshold for free to choose. When is someone jumping in front of a bus (other than when they're jumping in front of a bus.) I know people who work in this field who think eating poorly calls for aggressive intervention. Do you or do you not help someone with a seizure disorder join a hang-gliding club?

Integration is often even trickier. During an intake I once suggested to a new, young client that we could help her join a church choir because she was religious, isolated and liked music. Her answer, and I've heard it more than this once was "No. I don't like normal people, they're mean to me." This is a real conflict. Those of us who care acutely for people with disabilities want to live in a society where cerebral palsy, cognitive challenges, and other disabilities are traits not stigmas, like green eyes or a really bizaare sense of humor. Still, we can't promise people with disabilities that if they participate in the greater community that they won't be insulted, victimized or alientated. If we're honest, we can almost promise that they will be. We no longer question people with other minority identities who prefer the company of those they feel most like.

When we talk about these conflicts, someone always suggests a solution (a church choir where the music director has a child with disabilities.) I believe the solution is besides the point. In working with challenged people we've chosen conflict. The separate character of our system's participants is largely defined by balancing conflicts among our values. Some programs are, when the conflicts grow acute, highly risk-averse others are ultimately zealous about client choice while some purr about integration. The presence of different solutions to the same challenge among available supports is part of the genius of this system and as long as people with disabilities can find support that reflects there own values, our system works.