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?