Wednesday, December 22, 2004

Self-Direction, Episode II

In which Regional Centers and vendors are predicted to decline in importance as a result of SD.

First of all, I expect to remain in business and well-fed. The decline in importance probably won't be drastic and in most cases is likely to focus much of the system more on core mission. Overall, it's hard to predict whether shrinking budgets and costs will balance out in favor of, or to the detriment of the agency.

I think it's safe to assume that vendors will shrink as a proportion of the whole. Regional Centers will have to as well to make the whole reform work. The benefit from this change is, many clients receive professional assistance from vendors because there are no natural resources in the community able to provide needed help for free. Clients are able to employ unvendored, unlicensed alternatives for support that requires little training, oversight or infrastructure. This can remove lower-value activities from the responsibilities of vendors to provide and regional centers to monitor.

Please note that some of the savings will come from a reduction in the need for source documentation and process-focused quality assurance. I'm trusting that the reduced need for these types of scrutiny will result in a reduction in them. If not, it will be an unnecessary missed opportunity to improve the system both in terms of quality of benefit and cost. Plus, the people who think I'm preposterously gullible will have been right again.

A final note on shrinking service providers- and I think I am hopelessly naive here, in order to sustain the best of what the system has to offer, I think it would be a good idea to reduce pressures on rates and the POS and Operations budgets of Regional Centers by reducing agency funding by more than half but less than all of the realized savings. The high-value activities that agencies will continue to manifest have been underfunded for a long time and can have greater impact through more robust funding.

Monday, December 20, 2004

Self-Directed Services: Episode I

In which Doug rants about what real reform is and explains why Self-Direction qualifies.

OK, so the first thing is to distinguish real reform and "reform." The analog for me is to construction. Smarter architecture and better carpentry technique can allow structures to accomplish new things, find new uses or maintain the old function with fewer materials. We kind of already read in the papers about what happens when builders try to do things the same way with lesser materials.

The parental co-pay starting in January is not real reform, it's the opposite, because it adds costs not related to the function of the system in order to change who pays. More cost, no added benefit to the client.

The Statewide Purchase of Service Standards (POSS) that I expect to be proposed in January are likewise, not real reform. I expect them to raise the cost to the State and reduce benefit to society. My prediction is reasonable but unsupported by facts as is the opposite prediction. In a clear and concrete way, the POSS proposal is an arbitrary attempt to use less lumber in building an identical structure. The real savings or added cost depends on how soon it collapses and which attorneys the injured employ.

Self-direction, on the other hand, is better architecture. One of the chief inefficiencies in our system is what economists call the "Principal-Agent problem." That means that the people making decisions have different goals and incentives than the supposed beneficiaries. The inefficiencies that economists connect with this problem are, yup, waste, fraud and abuse. Basically, resources are diverted from their purpose to serve the goals of the agent (i.e., service coordinators, life quality assessors, direct-care staff, portly executive directors, etc.) Please note, this isn't always (or often) the intention of bad people, but often natural result of committed people who are worried about the alligator biting their bootheel and climbing their leg.

Under self-direction, the Principal (the client) is significantly more the agent than is currently the case. Service Providers are free to set rates and clients are free to pay them or to substitute a cheaper and sufficient alternative. The only reasonable outcome to expect is that the principal will seek a cost-effective array of services and reduce the incidence (and cost) of bad service selection by service-coordinators, inflated service provision by vendors, unrealistic expectations by life-quality assessors and clients' rights officers, etc.

The principal-agent problem persists, with the positions reversed, when you consider the goal to be stewardship of taxpayer dollars (a stated goal of the Lanterman Act.) Because clients and their families bear little or none of the cost of services under the current delivery model, they have no incentive to accept insignificant reductions in benefit in exchange for substantial cost savings. (In theory, the family share of cost assessment due to begin in January was meant to reduce this problem and maybe in another post I'll write about it's flaws as a solution.) In this case the State or the taxpayer or the system is the principal and the client/family member is the agent making decisions.

Consider: One cost that my agency bears (and therefore the State) is client absenteeism. If I send someone to work with a client who is not there, no service is delivered and I don't bill but I do pay staff for time and mileage and therefore I am restricted in my ability to lower my rate. Another cost related to providing services (this may be limited to specialized services like ours) is the cost of serving different individuals in different places. When staff see three different clients in an 8-hour day, there is often one hour of travel time during which there is no benefit to the client.

After last year's Self-Determination Conference I grabbed 10 files at random and calculated that a 100% reduction in client absenteeism and a 50% reduction in travel-time would amount to a 12% reduction in our costs for those 10 clients. Under the current delivery model, it would be illegal (I assume) and unethical (I'm certain) to offer to pay clients for perfect attendence and to work with staff less often for longer sessions. Granted, some clients may have sound and irremovable cause to miss sessions or to see us more often for less time. For the others, however, under a self-directed services model, I could absolutely offer a discount in exchange for consideration.

There's another available source of systemwide savings that would improve the benefits to clients. Because this system does not evaluate outcomes, nor supervise services, the focus of system's quality assurance process amounts to primarily a review of proxy documentation. The assumption is that if a thorough review of your documentation supports the the presumption of a quality program, then you may be alright.

This leads to two inefficiencies vis-a-vis either principle stakeholder groups- the clients and the taxpayers. Because our paperwork is the messenger of quality, vendors and regional centers dedicate probably more effort to turning out (or reviewing) good-lookin' sheets than actually improves our services. My reckoning has always been "they don't know how we're doing so they have to know what." In theory, when the person controlling the funds is the person who benefits (or not) from what they buy, the quality assurance currently being done can focus on measures of success rather than measures of effort. That means a shift in incentive to providers from describing services well to providing good service. As a consequence, resources will be redirected in the same direction. A client willing to continue paying for services means almost the same thing as a thorough documentation of effort and should be cheaper to maintain.

More client benefit, less cost, more sustainable agencies. Real reform.

Stay tuned later this week for the next episode.

Friday, December 17, 2004

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.

Friday, December 03, 2004

Best practice?

As I have mentioned many times before now, California's system of services to people with developmental diagnoses seems to teeter between the highly individualized, market-based, community-centered system envisioned in the authorizing legislation and the bureaucratic, standardized one that naturally evolved in the state-funded environment. Doubly ironic, but also a singular opportunity to explore the future of social services.

One place near the joining of this system's two natures is the so-called "best-practice." Best Practice is a concept widespread in the helping professions. Those of us who work in those professions (technically, I'm an administrator and therefore no help to anyone, but still...) prefer our jargon to be inclusive, which is the opposite of defined. To the extent the phrase means anything (and the first word absolutely never does,) it means methods that someone thinks ought to be common. Best practices might be methods that seem to work, and/or are ideologically derived, got written down by someone, or at least seem methodical.

In the world of Regional Center-funded agencies, "Best Practices" usually means forms that you fill out to prove that you did or said or tried to do something that the regional center thinks should be done or said or tried with everyone. This makes best practices an interesting part of our system because they either represent an expansion of the accountability that the system runs so short of; or an intrusion of standardization into a system in which both quality and efficiency derive from an individual framework.

Over ¡Arriba!'s five-year focus on becoming more client-centered and, therefore, less standardized, indicators are that the clients have grown safer and more stable in their independent lives. Our caseload is too small for this to qualify as statistics, but we clearly have gotten better at prevention and intervention and response by eliminating our internal best practices. From that standpoint, I always meet the laudable goals of most "Best Practice" conversations by feeling the goals will be better served without a new standard.

On the other hand, I'm also convinced that accountability is sorely lacking in this system. I have argued strenuously on this page and elsewhere for an outcomes- or results-based system of accountability. The process-based system of accountability that barely exists is a sorry substitute and "Best Practices" clearly extend that. I suppose if you accept that this system isn't even getting ready to start to develop a useful system of accountability, then the "Best Practice" model makes enough sense to weigh against the protection of person-centered services.

What this entire argument does present, however, is that increasing standardization is the cost of failing to provide true accountability for the results provided. As long as we don't measure and track outcomes against ambitions, and publish the results we should expect the system to grow more standardized, less innovative, less efficient and less individualized.

Wednesday, November 17, 2004

Individualized and Systemwide

I recently attended a small conference featuring Michael Smull on providing services using client-centered thinking (Thanks ELARC, SGPRC and Yvette.) Brer Michael made the point that the client-centered thinking that happens in our system largely occurs in spite of the design of the overall system. If we want the client-centered results we all say we want (at least in public) it's necessary to recognize how many ways our system is designed to prevent that from happening.

You can see it in so many practices, regulations, habits and behaviors. I was recently at an ILS conference at which a Quality Assurance specialist stated that everything's client-centered at his regional center, but that QA is really between the agency and the regional center.

The problem is, after the system was designed to maximize individualism, 30 years ago, traditional bureaucracy has been reasserting itself. That's not always a bad thing, but if unchallenged it certainly promotes standardization which is the opposite of individualization. In 2004 and from my broadening chair, it's not clear how much ours is even a community-based system. Regional Centers are so heavily regulated and so lightly monitored that it can be hard to tell sometimes whether innovation, creative problem-solving or the impact of local culture are more or less prevalent than in a state-run system. Several Regional Centers are in open warfare against client-centered alternatives to site-based standardized services.

My curmudgeonly opinion is that a rigorous, client-centered plan means exactly nothing when so many greater forces call for standardized thinking once the plan's been written. At an intuitive level, client-centered thinking may be the opposite of systemic thinking but I suspect the two depend on each other. Incremental solutions seem analogous to client-centered ones, but I suspect there is little that can be done at the client's, agency's or regional center's level that isn't undone by the standardized framework of the system.

Wednesday, November 03, 2004

Policy and Politics

So, it's the day after election day and it seems like a time to talk about the importance of policy in our political process. I've been assured by smart political people that policy never moves politics, that politics move policy (or immobilize it.) The day after yesterday I'm just not willing to tolerate that outlook, never mind the truth of it.

The question is always how much money is enough and that is the political question. Most observers of this system not only question whether it is delivering it's promise, many question whether it's even delivering $2 billion worth of that promise. It is through the insitutions set up to deliver services that the money either becomes appropriate support or not. Those institutions largely follow policies which may or may not be working. The system is a process of turning the money the State delivers into support and if the process isn't working, then change is needed. That change will be in the policy not the broader issue of funding.

I find myself uncertain about what I believe right now. It's a bad day to carry a passion for good government. What I feel sure of, though, is that good institutions bring out the best in people and bad ones the worst (that's a quote, I'm just not sure whose.) My faith is shaken today, but in the end things only get better through better institutions and in our expansive society, institutions increasingly are increasingly manufactured from people and policy, not stone.

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.

Tuesday, September 28, 2004

John O'Brien and the right system design

This post is a week or more late. I received word from my good friend, Julia Mullen, that John O'Brien had recently undergone surgery, and that we all should be thinking of him. I've had a couple of articles he wrote that I wanted to discuss in this space but couldn't find them. After a week of hunting, and this being a weblog (no accountability or expectation of accuracy,) I'm going to write about his work without it in front of me, confident that I won't mislead very many people.

John and his wife, Connie are two of the most important thinkers who analyze, describe and advocate on how society treats people with disabilities and how society can do better. The solutions they describe are both common-sense and radical. Maybe the greatest lesson I've learned from them is the recognition that common-sense is a radical departure in human services. That's how far we have to go.

The article I wanted to write about but can't find talks about redesigning the system so the incentives are aligned with the goals (duh?) All participants are described as agents and are expected to pursue their own self-interest (duh?) It's common sense because that is how the world works everywhere. It's radical, because we design our human service systems on the assumption that people who work for pay should otherwise be altruistic, mortifying their own needs in order to pursue the best interests of those who need help. The belief that direct care workers, boards of directors, executive managers of agencies, regional center staff, etc. should forsake their own interests in order to serve the client is pervasive. But is it realistic or even constructive?

It passes the What Would Jesus Do test, but until He returns, one of the chief sources of inefficiency in our system is how much those of us who participate in it hide what we're really up to. I wonder sometimes how much the state pays annually for camouflage. We create forms and pay people to fill them out which help us appear to follow instructions we all find absurd. We go to meetings with quality assurance folks and they ask us to do things we're too smart to do and then train staff how to imitate bad ideas while doing well. I'll be shocked if, upon arriving in heaven I find out that the State of California and philanthropists spent less than $25 million this year in the developmental disability system to pay the cost of misdirection. I won't be shocked if it's $250M. Then there's the cost involved when people actually take bad suggestions and implement them. There's human cost to that as well.

Our lack of honesty is a lack of efficiency and a deprivation of the aspirations of those we serve. Clients do it, their families too, providers and regional centers and the administration. All of this, in large measure, to appear as though we are pure servants and not self-interested people doing the best we can for ourselves while doing our best for the people we serve.

It's cathartic to admit that I'm fat but still hungry, successful but still ambitious and my hopes for myself drive my work along with those of the clients I serve. Now imagine how much better our system would work if you could eat, buy and aspire more by helping more.

One of John O'Brien's important contributions to our system has been to describe how our system might work better if it were set up to harness the skills and good will of well-intended, self-interested people instead of relying on ascetics.

So, best wishes, Dr. O'Brien, on a full and speedy recovery. Our thoughts and prayers are for your lasting health. Not just for your sake but also for ours.

Monday, September 13, 2004

Rate reform

Aha! The third rail! Hold on, my zipper's stuck.

Rate reform means different things to different people but the following applies as a rule.

For vendors: Rate reform = getting more money for doing the same work for the same people.
For government folks: Rate reform = getting more of the same work for the same people for the same money. Quality is subjective anyhow.

I'm indifferent as to whether rate reform should raise the number of dollars coming into this system. I'm zealous, however that the irrelevance of support needed to funding provided needs to change. The failure is nearly total to correlate funding with the resources required to provide the right support, in the right amount, with sufficient quality to produce the outcomes that our clients seek and the State benefits from.

So, here's another primer. This time on how rates are currently set in this system.

There are really three methods of rate-setting. These are state-set rates, residential rates and negotiated rates.
In the most common (state-set) method as I understand it, a new agency receives a temporary rate which is the same for a given category of service regardless of where you are in the State (Inyokern rate=San Francisco rate.) The agency then functions for one year under that rate, fills out a statement explaining that agency's costs over that year and a new rate is assigned. Obviously, if you get the joke, in your first year as a program you spend every cent you're paid and lose as much money as you can afford to on whatever you can in order to produce as high a bill as possible at the end of your first year. The adjusted permanent rate circles over the agency forever, cawing to the great white whale that lurks in the deep. Once in a long while, the state adjusts the oldest rates and those older agencies go from the lowest rates to the highest.

So here's how various factors affect state-set rates, a few years after assignment:
Market value of qualified workers in an area: Irrelevant
Changes in worker's compensation insurance cost: Irrelevant
Cost of appropriate training and skill-building: Irrelevant
Administrative cost of regulatory compliance: Irrelevant
Quality of care provided: Irrelevant
Year Established: High correlation.

In negotiated rates, the agency predicts it's costs, tells the Regional Center what those will be, and then a process takes place leading to a contract to provide services at a given rate. According to the Legislative Analyst's Office, these rates increase at three times the rate of the state-set ones.

Residential rates, as I understand them (and I don't know that I do) works like the state-set rates but with a cost-of-living increase (suspended for several years now) so the correlation between real factors and rates would be like state-set with year of establishment being less relevant.

So the main factors in the level of funding that agencies receive for providing services are:
Whether they have been vendorized in a category in which the rate is state-set or negotiated and what year that vendorization took place. The individual needs and aspirations of the people this system serves, and measurable success in meeting those needs and reaching those aspirations are divorced, utterly, from the fiscal process and the financial incentives.

I don't mean to imply that this is unprecedented or poor incentive. Lots of California industries reward you for being young.

Another interesting trick of the state system is that rates apply to units of service performed not on deliverables. So, spending all day accomplishing nothing pays better than quick success.

When we talk about "rate reform" in this system, we talk about how people are compensated for the work they do, not about what the state is actually buying.

So, I'm thinking about rate reform and wondering whether the system couldn't get a little more cost-effective by:

Correlating rates with the outcomes sought, challenges presented and the likelihood of success and making level of accomplishment the unit the rates are paid to.

I'd bet on more effective services and lower costs if there were incentives to achieve either.

ZZZZZZZAAAAaaappp

Monday, September 06, 2004

Labor Day

It's Labor Day and I'm at work, so consider this passive resistance. It seems like a good time to look at a recent and future proposal for reform to this system. The concept is loose, but Service Employees Internation Union (SEIU) put forward last year a proposal to create workforce service centers in this system. The proposal was pretty controversial, but a variation on it will come soon, so it seems like it deserves a place on this blog for the throngs who read weekly.

The next version of the proposal to come forward isn't known to me yet, so rather than write an endorsement or opposition, I'll just review where I stand on some of what were said to be the pros and cons of the previous concept.

Being long-winded, I'll start with an introduction: The original draft of AB 649 (Wiggins) (a hardly-related rewrite passed and currently awaits the governor's signature or not.) The basic idea was that by legislative fiat, thirteen centers would be created. All staff working directly with people who have developmental diagnoses through Regional Center funding would be employed by the centers and, basically rented out to the agencies responsible for the work. Different drafts of the proposal included different functions but in one or more draft the Centers would:
1. Recruit direct care staff;
2. Pay and provide benefits to the direct care staff (and, possibly, managers;)
3. Provide a fair-hearing process for disciplinary action;
4. Centralize many employment-related administrative functions;
5. Provide core training; and
6. Serve as a launching point for more efficient unionization of direct care staff. (Aye, thar's the rub.)

So, here are some of the arguments made about the concept and the conclusions I naively reached about them:

Hypothesis: "With a Union involved, we'll lose our ability to fire or discipline our staff."
Doug's Opinion: Maybe, but probably not. People with developmental disabilities are far too sympathetic and the system too expensive for an undisciplined workforce to sneak by.

H: Once the workers are unionized, people with disabilities will have a political lion to roar on their behalf.
D: I kind of don't trust this theory. I don't question that the membership and leadership of SEIU (and, maybe AFSCME) really want to do the right thing, and there's no doubt SEIU has more pull in Sacramento than pretty near anyone. Nonetheless, I've complained that the vendor-driven advocacy of the past is narrowed by its perspective and insufficiently challenged by our clients and their families. The same is true of Regional Center-driven advocacy. The same will likely be true if labor unions drive the advocacy.

H: Centralizing some of the system's administration will allow wages to rise without increasing the cost of the system or reducing quality of care:
D: Actually, as long as the operative word is allow (I do need a little wiggle-room,) I agree. 8000 agencies statewide hiring an average of 12 employees apiece can't possibly be efficient. As an example, ¡Arriba!, when we need staff, takes out ads at $80-150 per in obscure places for the purpose of hiring 1 person at a time. Combining that across the hundreds of similarly sized agencies in eastern LA County could provide for big ads in the LA Times, La Opinion and several others. The WSC concept also makes easier self-determination models of care which can be cheaper and more successful for some clients.

H: Having a monopoly on labor for this system is a terrible idea.
D: I'm pretty sympathetic to this argument, especially when you consider the proposals for governance in which someone appoints a board and there's no process for the community to dislodge the boards. When you look at the stubbornness of the failed regional centers, the idea that all labor provided to this system could be connected to similar administrative catastrophes, the concept is chilling. No new self-perpetuating or appointed boards in this system will get my support. Uh-uh.

Happy Labor Day, everyone!

Monday, August 30, 2004

The Problem with Providers

OK. I am a service provider, director of a regional center vendor agency. I confess. The concern regarding any reforms proposed by service providers, whether regional center vendors or regional centers themselves, is that our bright visions of the future tend to be better funded, less restricted versions of the present. The idea is almost always that if we were given the funds and the freedom to do what we now do for the people we now serve the lot of people with disabilities would improve.

This denies the central question about this system- are the people it serves getting the best possible most appropriate support. There's something anti-evolutionary about the premise that agencies need to thrive for people with developmental disabilities to do so. What about people who are poorly served, not only because of staff turnover or poor qualifications but also because the agencies serving them are philosophically unable to keep pace? I know that better wages for direct care staff would expedite the progress of clients. I suspect that the disappearance of some agencies would as well.

One question with no clear answer- could the elimination of underperforming agencies and their overhead free up enough resources to provide for better funding of well-performing agencies and a general improvement of the support people with disabillities receive? It is possible when you consider how many millions of dollars go to agency infrastructure and real estate that the closure of a few large site-based agencies could release significant funding back into the community. Whether or not that helps depends on whether the agencies do, and how much.

The purpose of reform needs to always be to sustain the progress being made by people with developmental disabilities. On the survival of service providers, even the service providers should be agnostic.

Wednesday, August 18, 2004

Regional Center Operations and System Reform

Today's topic: Things to think about when considering the Regional Center's role in our system, or, Why I have no friends in this world.

During California's lengthening budget debacle, the most common cost-containment proposals coming from vendor groups have advocated for reducing the size and scope of Regional Center operations. There are some important reasons that these proposals deserve a cautious response.

Primer paragraph: In California's community-based system of support to people with developmental disabilities, the legislature budgets funds to support the system which are allocated to the Department of Developmental Services (DDS.) DDS contracts with 21 private (more on "private" later) non-profit agencies, called Regional Centers (RCs) which have sole dominion for the provision of non-institutional services within a catchment area. The funding provided through those contracts is divided between Purchase of Service (POS) funds which must be spent on direct support through outside vendors and Operations which are intended to pay for those activities performed by Regional Center staff and which may be diverted to POS at the discretion of the Regional Center board. The primary roles of the Regional Centers are to identify eligible people, determine with the clients what supports are appropriate to the client's needs and aspirations, finding and purchasing those supports typically through vendors, and monitoring the quality of the support provided by vendors.

A few things all honest participants in this system can probably agree on:
1. All the activities Regional Centers are charged with are necessary.
2. The quality and effectiveness of Regional Center performance varies greatly between Regional Centers
3. There is probably an efficient formula for how much effort is spent on each Regional Center activity but no-one knows how to find it. Many of the formulas used are defined in statute.
4. Methods and policies employed at Regional Centers are of varying effectiveness, but there is no standard to distinguish success from failure within a frighteningly broad range. Also failure to budget accurately is the only failure likely to trigger oversight.

A few opinions I'll add with honest intent and questionable intellect and little expectation of conscensus:
1. Reasonable people may disagree as to whether all the activities Regional Centers are charged with should be done at Regional Centers, There may be economies of scale combining some activities between RCs but there are probably synergies (for example between quality assurance and service coordinators) that add value in keeping these activities together. Any proposal to change the functional makeup of Regional Centers should receive a whole lot of scrutiny.
2. The quality and effectiveness of Regional Centers' performance hardly varies at all over time. In my experience, badly run RCs stay bad and well-run ones tend to stay good. If I were going to propose Regional Center reform, I think this would be the most compelling fact.
3. The problem with any RC operations reform is that we don't track outcomes in our system. There is no basis, therefore, to improve staffing formulas. Smaller caseload ratios in service coordination could, for example, theoretically save money by reducing the purchases of chronically unsuccessful support or providing for more effective matching. It's highly likely that the right formula is different for rural RCs than it is for urban ones.
4. In my opinion, much of the proposals we've seen for reforming Regional Center operations reflect a lot of frustration with individual Regional Centers, how their responsibilities are discharged and the overwhelming difficulty (within the margin of error from impossibility) of changing Regional Center behavior.
5. I may be crazy, but the idea self-perpetuating boards overseeing public entitlements seems kind of goofy and pretty suspect.

Based on all of the above, I would be reluctant to support changes in what Regional Centers are meant to do or staffed for. Nonetheless, the frustration of clients, their families and vendors working with many Regional Centers is awfully well justified. Even the best Regional Centers are better at contract enforcement than determining program quality and its rare that they do well at informing families of options. Laws are regularly flouted at the worst regional centers. The entities charged with Regional Center oversight rarely act aggressively and appear fairly powerless.

The fact that many Regional Centers function badly doesn't call into question the value of those functions they do badly. On the contrary, the frustration throngs of us share at chronic failures proves the value of those activities. The best correction will be to amend the uncorrectability of these agencies. History found feudalism unsustainable. That duly elected officials have restored it for people with disabilities would make a cute irony if it weren't so wrong.

Tuesday, August 10, 2004

Accountability and Reform

We all like accountability, in principle and for other people. Someone reading past entrys in this blog to this point might think I'm trying to suggest that accountability is the most important reform for this system, more than funding, more than restructuring. That's about right.

The value of accountability, or the cost of its absence, is at the heart of the system's inefficiency in my opinion. I'll explain:
The system was designed to be more efficient than existing systems because of it's flexibility. Clients would receive those services that help, and not receive assistance that doesn't. Clients and their service coordinators would select those supports best suited to the client's challenges and aspirations or try to devise something better. Local communities, through the Regional Centers would guide the evolution of the services available to fit with local conditions. All of which works perfectly as long as there's a sound basis for the choices made.

The system, as designed is efficient because it allows enough flexibility to move people into less restrictive environments which are generally far less costly and because the individualization can prevent the expense of unnecessary, unhelpful or inappropriate support.

The lack of evaluation (which isn't getting better) and oversight (which still has a long way to go) has two effects which probably inflate the cost of the system without helping the clients:

First- There's a general lack of reliable information about what works and doesn't, which programs are effective and how some agencies might make a good match for a given client. As a consequence, it is nearly impossible for a client or family to select wisely or proactively. There's insufficient basis for a service coordinator to have confidence in a recommendation. Although nearly all agencies strive for excellence, only our own brochures indicate to us whether changes we make are going in the right or wrong direction.

Second- Theories aren't tested. Especially at the policy level (Regional Centers or the State,) there's no means to discern between policies that bring positive change and those that damage the ability of the community to support individuals with developmental disabilities. Several Regional Centers and DDS are run by layers of smart, mission-centered managers with smart, critical boards. Several are run by charlatans a long way down with complacent or self-serving boards. Regardless, the best intended ideas of smart people can be wrong as can the conspiracies of scoundrels. With no witness to the outcomes, either through their measurement or independent consideration, policies may serve the opposite of their intent for years without reversal. In this system the failure to recognize failed policies costs our clients and our state in the currencies of wellbeing and general fund dollars.

So, this blog will go on to discuss other proposed reforms. Now it has been said, my central conviction is that the best first reform for the sake of people with disabilities and the state budget would be the creation of real systemwide accountability.

This is why my office is in a brick building. Harder to blow down.

Tuesday, August 03, 2004

Oversight and Accountability

"For where two or three are gathered together in my name, there am I in the midst of them." Matthew 18:20

When you're omnipotent and omniscient, your presence among those gathered in your name is a grace. When you're disabled and policies affecting your life are debated, your presence among those gathered in your name is self-defense. The importance of organizing both locally and statewide is to insure that when two or three policy-makers gather in our name, we are there in the midst of them.

The flexibility of this system makes tracking changes and policies and the effects of both challenging. Policy is made outside the capitol that effects people with disabilities as well as the cost-effectiveness of the entire system. Regional Centers make policy as do county governments. These actions take place, typically with little community input or oversight. As a consequence, many policy choices which affect the success of the system are not questioned.

The importance of CDCAN (see post from June 22) is the success of the group and it's predecessors in gathering people with disabilities into hearings at which the laws governing our system are enacted. There's no doubting the success of this strategy in protecting our system. Local and statewide oversight by people with disabilities was intended for this system. At every regional center board meeting, at every DDS hearing, at every agency meeting and at every county commission hearing, the stakeholders should be in the middle.

Monday, July 26, 2004

Evaluation and Accountability

So, now that POSS standards have been so thoroughly discredited that they probably won't re-emerge as a proposal until August, it seems like this window can be used to discuss meaningful reform which might meet one-or-both criteria of improving the lives of people with developmental disabilities and improving the taxpayer's return on their investment.

The biggest omission in California's system is a meaningful, useful (or even non-fictional) system of evaluation and accountability. In human-service systems around the world, governmental or private it is standard practice to measure outcomes. In other words, since we know why we do this work its worth asking if we're succeeding and how well. Measuring outcomes, when done correctly, can establish causal relationships between the work that is paid for and the results which are obtained. The system, the people the system serves, service providers and the state's taxpayers can all benefit by:
-Making available objective information about which agencies and programs may best serve an individual;
-Allowing for informed budgeting so that more money goes where it helps and less where it doesn't;
-Improving advocacy by allowing consituencies to demonstrate what is lost when funds are unavailable; and
-Providing a basis for all system stakeholders to recognize what works, what doesn't and how to improve.
-Plus, one Director of a small ILS agency will sleep better at night, providing for better management of that agency and less crankiness at meetings.

Although California's state government hasn't done much to make evaluation happen, that isn't because a lot of smart people haven't put good thinking to the task. Julie Jackson, Deputy Director at California's Department of Developmental Services has thought about, worked on and advocated for evaluating services systemwide. Dr. Barbara Wheeler at USC/UAP has worked on devising an evaluation model which fully integrates the concept of choice into outcome measurement (this work is ongoing due to the distraction and unreliability of a colleague of hers who nonetheless found the time to start a blog.) California Community Action Network (the predecessor to CDCAN, mentioned below) has often focused attention on the need for outcomes for those who receive services. A national Core Indicators Project is years underway and the Service Delivery Reform committee which met a few years back picked some domains and agreed to set-up a learning model of evaluation as long as there was nothing complicated about it. Assemblymember Keith Richman (R-Northridge) included a first step toward evaluation in a bill he sponsored (AB 2775)this session which is being held in committee.

So why is there no real evaluation or useful accountability in the system? One problem we're up against is the difficulty of making long-term investment during a budget crisis (can you call it a crisis in it's fourth year?) I suspect another is that during the Davis Administration, the state Department of Finance fell in love with the idea of standardizing and set that agenda. Schwarzenegger's DOF is carrying the same torch. Yet another challenge is that service providers, who have tended to be the organizers of much of the system's advocacy tend to feel pretty strongly that measuring the result of their work is a poor substitute for funding it better. Hopefully, if real organizing continues at the grassroots level, the people who deserve the best possible system will focus more on their need for support that really helps than the historic concentration on provider rates.

Mind you, doing evaluation correctly or even well takes a lot of work. One old saw is, "What gets measured gets improved" and it can be challenging to make sure you actually measure the things you want to improve rather than the things you wish to avoid. In my experience, Unicorns are rarer than well-designed evaluation systems which are rarer than trout. In the case of California's system of support for people with developmental disabilities you can reverse the first two terms.

Later posts will discuss some thinking about what would make an evaluation system useful and meaningful to this system.

Tuesday, July 20, 2004

Statewide Purchase of Service Standards

I'll start with a couple of apologies. First, that my laptop was in the shop and I haven't updated this blog in awhile. Second, that this post will be even more arcane than most and probably indecipherable to anyone not well acquainted with California's community-based system of support to people with developmental disabilities. As always, I'll be happy to answer any questions by email.

One proposal for reform which keeps coming up is the one for statewide purchase of service standards (POSS.) This post will explain why this is a bad proposal unlikely to produce the desired outcomes of improving equity or lowering costs while reducing some of the virtues of the current system.

POSS seems at the surface like a reasonable proposal. For those not aware of how our system operates, State law provides an entitlement to people with developmental disabilities, including the criteria by which a person is eligible and the standards that service providers (Regional Centers and their vendors) must meet. The state then provides the Department of Developmental Services with a budget to fund Regional Centers, highly-regulated (in truth semi-governmental, but officially private non-profit) agencies which contract out to vendors to provide services. Those services are required to pursue the individual client's aspirations and reflect that client's needs and preferences. Each Regional Center (RC) has a local board of Directors and a monopoly on providing services to clients in the catchment area.

The intellectual basis for the POSS proposals have focused on concern about significant disparity in how much funding different RCs provide on a per-client basis. This has led some policy-makers to reach two conclusions: The first is that there are major inequities between how clients are served across regions and the second is that the high spending regional centers must be frivolous.

The conclusion was that statewide standards, essentially limitations on what any RC could offer to clients would improve equity and lower cost growth. Laudable goals. Absolutely. They fit with all three basic assumptions in my original post.

The problems come in when one considers how the standards would operationalize. A few more facts about this system before the analysis.

1. The Social Security Act, with which the State must comply to retain the 38% of system funding which comes through our Medicaid Waiver, requires the State to allow for fair hearings when a client feels that they have been wrongly denied a service or support. This requirement is not waivable as part of the Medicaid Waiver program.
2. There are two ways money gets wasted in this system- POSS is designed to prevent the waste that comes from state funds being spent on services or supports which are excessive, don't help or are otherwise inappropriate. The other is when services or supports are denied which would have allowed a client to live in a less costly, less restrictive setting.
3. The challenge that all RC staff face is that there is rarely clarity as to how the risks mentioned (in 2.) above are balanced.
4. California's regulations require an exception process for most RC purchasing policies to allow for unusual conditions in which the standard policies will fail to account for a legitimate need.

As a consequence of the four facts above, most client's receive services within their RC policy guidelines but some do not. When policies are applied which a client or their family/guardian/conservator feel should be waived due to health and safety needs or in order to allow the client to live in a less-restrictive environment, there are two processes (exceptions to policy and fair hearings) which allow the interested party to appeal for a different service decision.

Although the POSS proposal creates an exception when service limitations would cause someone to move to a more restrictive setting, the question is: How will that be determined. At the more liberal RCs, that finding will often occur. At the more restrictive ones, pretty much, the finding will occur only for board members and their families. As a result, actual behavior needn't change at any of the regional centers. The one difference will be that in the rare occassion that a client files an appeal, the likelihood of an RC decision being overturned is reduced because the RC will have been following state regulations rather than its own policy in denying services.

In other words, the likely result of POSS may be a small increase in the inequity of the system as liberal RCs retain the tools to remain so and restrictive RCs are emboldened to be more so.

So, POSS is unlikely to achieve it's objective vis-a-vis greater equity. What about cost?

That really depends on whether the funding wasted on inappropriate, ineffective or unhelpful supports will be reduced by the money wasted when decisions are made which lead to clients in more restrictive settings. Neither the sponsors of POSS, the writers of it, or I have any credible information to make that judgement. What information exists is interesting, though:

The RCs in LA County generally considered to be the most liberal in their POS policies also happen to have the lowest expenditures on a per client basis. Although there are a lot of possible explanations for the differences other than good policy-making, it is compelling that the evidence doesn't support the principle that for our system, conservatism and stewardship go together.

Ultimately, POSS would have reduced the individualization that is the moral core of this system with little promise of lower cost or greater equity. It may represent the best thinking of California's Department of Finance but we do better thinking in the community. And at DDS. The next post will be about some reforms with more promise being worked on at DDS and in the community.

Monday, June 28, 2004

Why call for system reform?

There are really two perspectives that call for reform. The most important is the sense of frustration often heard from people with developmental disabilities and their families that, in spite of California law, services don't fit. While nothing can be said of California's system uniformly, it is often said that the system continues to favor a few basic service configurations over innovative, individualized ones. Recent policies at some Regional Centers which refuse community-based day programs to clients because these are difficult to administrate confirm that institutional obstacles continue to frustrate the full implementation of the Lanterman Act.

A second, less important but more imposing political compulsion is the cost of the system. Defenders argue, I believe rightly, that the system seems costly only in the absence of verifiable accounting for the cost-savings the system also brings by deflecting people with disabilities from more costly care needs. When we consider the system's success in drawing down federal funds, private fundraising and add to that the unknown cost of care without our system in place, we offer a good deal to the state.

Be that as it may, the cost of this system grew significantly faster over the 20 years to 2002 than the economy of California, the resource which must be tapped to sustain us. Over those twenty years, that gap has been steadily accelerating. In the end, sustainability can't be measured against theoretical savings but only against available resources. Those who seek cost-saving reforms have a point, that the current system is unsustainable in the long-term.

What's more, the failure over the thirty-plus years of California's community-based system to measure and account for the outcomes provided is the reason we cannot reliably take credit for the savings achieved.

If the story ended there, I wouldn't have started this page. The mother of a 36-year-old with autism made the comment to me not long ago that we were all so busy fighting budget cuts that "we haven't even started fighting the right war yet." That battle will be for a system which fulfills the promise to accountably recognize the differences between people and fully implements the right plan for each. I believe we'll continue to fight the wrong war until we fight the right one. Many groups across the state are doing this, but many of the fiercest and most articulate advocates remain focused on funding the current system.

The accountable system, the truly individualized one can provide more to people with disabilities, save more from the state budget and account for the value it delivers. Starting next week, this blog will begin to discuss specific reform proposals. The underlying theory will be that the right war is the only one we can win.

Tuesday, June 22, 2004

California Disability Community Action Network

First things first. CDCAN is the most innovative political instrument I'm aware of. It's role is to inform and organize, through various media, all interested parties about the political life of California's services and supports to people with various disabilities. Anyone interested in the evolution of our system should be aware of this group.

Please note: The website is currently down so I've cancelled the link. People wanting more information can email Marty Omoto, Director/Organizer at martyomoto@rcip.com

Introduction

Hello, friends

This attempt to blog will include information, rumination, analysis and pomposity on the general topic of system reform for California's community-based system of support to people with developmental disabilities. Included will be links to useful websites on the topic, reviews of literature and proposals and proposals of proposals. I have no doubt that this will be as stimulating to everyone as it is to me. My goal will be to include an update not less than weekly.

My perspective on this topic is based on who I am and which airs I put on. I am the director of an Independent Living Skills agency. I am the uncle of a beautiful 4-year-old with disabilities. I am a reformer, may God have mercy on me.
MILLENNIUM, n. The period of a thousand years when the lid is to be screwed down, with all reformers on the under side. -Ambrose Bierce

My basic assumptions about this system are:

1. All people have the rights enumerated in our constitution including personal sovereignty which is not waived by receiving public benefits. Californians with disabilities are rightly entitled by law to support based on their personal challenges which does not interfere with their aspirations.
2. All people should expect their taxes to be handled dearly, used efficiently and to serve only ends endorsed through the constitutional process of government. Healthy systems are cost-effective and cost-effective systems are healthy, and no system without deliberate and rational accountability is healthy or cost-effective.
3. All state-funded systems ever and California's system of community-based support for people with developmental disabilities, especially, have plenty of opportunity to improve regarding the first two assumptions.

OK, so, let's see how this goes.