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.