Thursday, October 21, 2004

The Vendor's Song (Rising costs, fixed rates)

I just received a copy of a letter concerning yet another unfunded State mandate service providers to the clients of this system are faced with. The figuratively millions of people who read this site regularly know that I think higher rates aren't the solution to the problems of the system. Ron Cohen, Executive Director of United Cerebral Palsy of Los Angeles, Ventura and Santa Barbara Counties just reminded me why I may want to qualify that position.

There is, after all, a funding crisis for the agencies that serve people with developmental disabilities. Reimbursement rates are fixed and things keep happening at the policy-making level (worker's compensation costs, new administrative duties, new labor laws) that raise costs without improving outcomes. The strategy of incremental funding cuts alongside incremental increases in cost is approaching its natural conclusion. As Ron points out, at his agency, 1400 people losing homes and services is not far-off. Statewide, I'd be suprised if there weren't tens of thousands of people with disabilities so threatened. Ron's just a little more honest (and normally a lot funnier) than many of his peers.

Nothing will change my conviction that the pincipal problems needing reform in this aren't rates. Nonetheless, not reforming this system while allowing the funding to ebb is causing an unnecessary crisis for service providers and, consequently for clients. The need for reform is present and acute.

Monday, October 11, 2004

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.

Friday, October 08, 2004

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.

Monday, October 04, 2004

Evaluation, yet again

The ILS Coalition conference was last week, and it kind of got me going, so there may be a few posts this week. I promised earlier to talk in more depth about evaluation for system and the topic came up at the conference. Folks have waited avidly and long enough for the answers. Hating to disappoint anyone, here they are.

I guess the first question is why we need an evaluation. Here are three reasons:
1. To improve the quality of the system,
2. To eliminate waste in the system,
3. To learn how policy decisions are connected to outcomes.

California's statutes which set out the goals and methods of the system set some criteria for how quality is defined. The system succeeds when it:
A. Provides support for the choices clients make as to how they live and which goals they pursue,
B. Allows people with developmental disabilities to live lives similar to those experienced by their non-disabled peers (this is typically, but not necessarily described as integration of clients into the broader community),
C. Preserves the health and maximize the safety of clients.

Since evaluation becomes the set of incentives that professional participants face, the system that works for California should respond to the needs numbered 1-3, while incenting the mission of the system described in A-C. To accomplish all of this, the following should be elements of a statewide system for evaluation:

Client-centeredness: While the evaluation has to begin with valid outcomes which will make sense in the aggregate, the value of the measurement should depend on the stated goals of the individual client. Some of the waste in our system comes from supporting individuals to accomplish goals that don't interest the client. Sure, I agree, everyone should work and participate in the greater community but its awfully easy to lose an unwanted job or get kicked out of a club you hate to see. The statewide evaluations can and should aggregate the outcomes the clients choose to pursue rather than measure the success of clients in achieving statewide policy goals. I bet I write a better explanation of this another day.

Reasonable Expectations: A baseline level of accomplishment should be predicted and the outcomes judged against that baseline. This doesn't suggest low expectations, it refers to the idea that clients who face greater challenges should be as desirable to serve as people who are more typical of the population at large. No-one can defend planning for people based on traits like measured IQ, assessed functional abilities or behavioral history. Nonetheless to extend proper credit and reward audacity, baseline expectations can and should be adjusted with standard measures of ability. This can not only help make more challenged clients more attractive to serve, but may ultimately allow clients and their family members to identify agencies that may succeed especially well (or fail spectacularly often) with similar challenges to theirs.

Universality: Evaluations should focus on every client every year and reflect on every program they used and the regional center they're with. In order to identify successful strategies, every program should be measured for success and diverse cohorts should be identified. With 200,000 participants an annual survey of client outcomes can quickly separate what is working with whom from what is waste. Furthermore, the potenial exists to make service and agency selection an informed choice which it isn't today. The faster successful programs and strategies are identified and connected to real people, the less waste and failed agencies will tie up scarce resources.

Transparency and availability: The means of assessing success and the scores achieved by agency, program type and regional center need to be accessible to everyone. This is where there's a pragmatic difference between California's private sector system and other states' self-run systems. In a single system, the goal of evaluation is to measure the success of the overall system. California's system depends on the private sector to provide and clients to select the services and supports which will succeed for each individual. The best system for eliminating waste would be to insure that people considering services have the means to identify the right supports and providers through clear, transparent and easily available information.

If you've read this far, I probably owe you lunch.

Yet more on evaluation

The ILS Coalition conference was last week, and it kind of got me going, so there may be a few posts this week. I promised earlier to talk in more depth about evaluation for system and the topic came up at the conference. Folks have waited avidly and long enough for the answers. Hating to disappoint anyone, here they are.

I guess the first question is why we need an evaluation. Here are three reasons:
1. To improve the quality of the system,
2. To eliminate waste in the system,
3. To learn how policy decisions are connected to outcomes.

California's statutes which set out the goals and methods of the system set some criteria for how quality is defined. The system succeeds when it:
A. Provides support for the choices clients make as to how they live and which goals they pursue,
B. Allows people with developmental disabilities to live lives similar to those experienced by their non-disabled peers (this is typically, but not necessarily described as integration of clients into the broader community),
C. Preserves the health and maximize the safety of clients.

Since evaluation becomes the set of incentives that professional participants face, the system that works for California should respond to the needs numbered 1-3, while incenting the mission of the system described in A-C. To accomplish all of this, the following should be elements of a statewide system for evaluation:

Client-centeredness: While the evaluation has to begin with valid outcomes which will make sense in the aggregate, the value of the measurement should depend on the stated goals of the individual client. Some of the waste in our system comes from supporting individuals to accomplish goals that don't interest the client. Sure, I agree, everyone should work and participate in the greater community but its awfully easy to lose an unwanted job or get kicked out of a club you hate to see. The statewide evaluations can and should aggregate the outcomes the clients choose to pursue rather than measure the success of clients in achieving statewide policy goals. I bet I write a better explanation of this another day.

Reasonable Expectations: A baseline level of accomplishment should be predicted and the outcomes judged against that baseline. This doesn't suggest low expectations, it refers to the idea that clients who face greater challenges should be as desirable to serve as people who are more typical of the population at large. No-one can defend planning for people based on traits like measured IQ, assessed functional abilities or behavioral history. Nonetheless to extend proper credit and reward audacity, baseline expectations can and should be adjusted with standard measures of ability. This can not only help make more challenged clients more attractive to serve, but may ultimately allow clients and their family members to identify agencies that may succeed especially well (or fail spectacularly often) with similar challenges to theirs.

Universality: Evaluations should focus on every client every year and reflect on every program they used and the regional center they're with. In order to identify successful strategies, every program should be measured for success and diverse cohorts should be identified. With 200,000 participants an annual survey of client outcomes can quickly separate what is working with whom from what is waste. Furthermore, the potenial exists to make service and agency selection an informed choice which it isn't today. The faster successful programs and strategies are identified and connected to real people, the less waste and failed agencies will tie up scarce resources.

Transparency and availability: The means of assessing success and the scores achieved by agency, program type and regional center need to be accessible to everyone. This is where there's a pragmatic difference between California's private sector system and other states' self-run systems. In a single system, the goal of evaluation is to measure the success of the overall system. California's system depends on the private sector to provide and clients to select the services and supports which will succeed for each individual. The best system for eliminating waste would be to insure that people considering services have the means to identify the right supports and providers through clear, transparent and easily available information.

OK. That was probably arcane and boring even for this weblog. If you've read this far, I probably owe you lunch.