Monday, January 03, 2005

Self-Direction, Episode III

First of all, Happy New Year to everyone. May this year be one of strength, growth and learning for us all.

Now to the third major issue that concerns me (and, apparently Catgirl) regarding self-direction. With self-directed services there come a host of new opportunities for the abuse of people with developmental disabilities. This isn't fear-mongering. It happens already with In-Home Supportive Services. Family-members, friends, significant others find that the person with the disabilities has access to state funds that they can direct and persuade, trick, intimidate or convince that person to fund them for work that doesn't get done. I've seen it, Catgirl seems to have seen it.

It will happen with self-direction. The state will set aside resources to support people with disabilities to prepare for work, remain healthy, live independently, and otherwise mitigate the effects of the disability. Then, a parent, a cousin, neighbor etcetera will persuade the individual to turn the money over and neglect the individual. This will by no means happen in every case, I hope it will be rare. The State has a responsibility both to the taxpayer and individuals with disabilities to make sure it's rare.

The key will be monitoring and intervention which are reliable and sober and forceful enough that abuse feels risky to the would-be abusers. The new monitoring will need to be different from the current one (which needs to be different from itself) in the following ways:

1. The SD accountability system will need to be as much a law-enforcement system as a quality monitor. The current system is based on the enlightened self-interest of agencies that serve many clients. Using the current model, expressive, alert, and cared-for clients serve as a proxy for those less able to sound an alarm. Essentially, the monitoring I am subjected is fairly relaxed until someone alleges something that sounds like abuse or neglect. Then, the Regional Center will investigate that case and (presumably) if the allegation is substantiated will review other cases. If there is a pattern of abuse or neglect, the agency may lose enough business to go out of business. In a self-directed mode, many more of the service providers will be individuals with a pre-existing relationship with one individual whom they serve. Taking business away from someone who already isn't doing work isn't much incentive not to abuse or neglect. The threat of prison is a better one.

2. Outcomes will be more important. The current model already has trouble verifying billing for programs in which the time and location of services aren't fixed. In a self-directed services model, the possibility of verifying that services billed for were rendered becomes nearly hopeless since the units of service measurement, what constitutes service and what constitutes satisfactory work will be particular to the individual served. In its self-directed services model, the state should admit that the conditions a client experiences are crucial and that the arithmetic (units of service, etc.) will no longer be verifiable. Brokers and Fiscal Service Monitors should be empowered to focus on changes in the client's life to certify that bills should be paid. How you finess this with the Federal Waiver is an excellent question.

3. Monitoring must be more aggressive and at least occassionally intrusive. The family members of Regional Center clients who have pushed for this change are loving, devoted parents driven by a sense of urgency that their child be dignified, well-served and in control. As a consequence, I expect the familymembers pushing for this to feel angry or offended if, on the heels of this important victory for self-determination, people keep coming around with clipboards asking questions and judging whether the services being purchased are acceptably appropriate and successful. The problem is, the familymembers I meet at Self-determination conferences, community imperative meetings and advocacy events just aren't representative enough. Speaking for myself, and with my niece, nephew, brother and sister-in-law in mind, the idea of a person with disabilities isolated and ill-cared for while money flows from the state to resolve those problems is too much to give anyone carte blanche.

So, while we're calculating new levels of dignity, independence and a healthier fiscal environment from self-determination, I think we owe it to the most marginalized people, individuals with disabilities who miss even honest love from family and friends, that we deduct some independence for monitoring and some money for effective oversight. To me, this is a serious enough issue that as strongly as I support self-determination, I would just as fiercely oppose it without a system of monitoring and intervention worth relying on.

Contessa, Queen Anne, Dutchess Sherlene- Am I in trouble yet?

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