Monday, January 31, 2005

A New Day- The Prequel

Next week, the Association of Regional Center Agencies (ARCA- for definition of a Regional Center see the archive, July-ish) will hold a two-day conference on non-traditional supports for people with developmental disabilities. It's pretty hard to tell whether or not the conference has changed since it was about more inclusive day programs or whether the language was broadened. It's good to see Regional Centers engaging new ways of doing things as a group, and I applaud at least the purpose. I'm hopeful that this will be a useful, constructive, maybe transformational event. Not suprisingly, I'm a little cynical as well.

The first red-flag is the density of the programming. I think there will be dignitaries giving plenary speeches and sitting on panels for about 15 of the 16 hours. The content seems built around the idea that most people don't know what to do, but once told, might obey. That is the paradigm for dialogue in our system and it's more pervasive than good well or, even, disability. My hope that this event has value apart from the Super Bowl party on Sunday is pretty much pinned on the idea that the panelists in the workshops have been given a 4-minute time limit.

The unrecognized reality is that nearly our entire system (based on my five-year sample of people I talk to) agree about how the system should serve its clients. Every State bureaucrat, Regional Center bureaucrat, Vendor Bureaucrat, parent, client and demagogue involved agrees that the system should be more client-centered, customized and responsive. Pretty much all of us are trying. Most of us are somehow a great deal smarter and more innovative than the conversations we have together. Most of us have more insight than the experts we bring in to explain things to each other.

So the hope is that we can mark a change in tone from next week. More of the soul-crushing same is too painful to imagine but exactly what the conference agenda suggests.

Here's what I hope, though- The Monday morning dignitaries point out that the system's been talking and writing its brochures along these lines for a long time. If the system hasn't delivered everytime, or most of the time, or often enough to mention- it's probably because there are systemic barriers to the transormation. Not a lack of will or a lack of intelligence, just stuff in the way. I bet if we started to talk about where each of us (the not experts) encounter the barriers, we could really start to change things.

Friday, January 14, 2005

Self-Direction, Finale (for now)

Well, I'm getting bored of this topic. Sure hope no-one's reading it. The final point I wanted to make on self-direction is that pilot projects notwithstanding, much of the benefit will follow a learning curve. As a result, participants and stakeholders should not be discouraged if the new system is underwhelming. It's one thing to give a person control over their choices, which will be the first step, but another to have new choices. As new people learn to be of service, agencies learn to be more of service and efficiencies are discovered, the promise of self-determination will be fulfilled.

Wednesday, January 12, 2005

Self-Direction, Episode IV

I'm smart for a fish. I'll skip the bait of the Governor's budget and continue with writing about self-direction.

In terms of savings, I am convinced that a Self-directed system can provide equal or better care at lower cost. My concern at the outset is that the new marketplace needs time to develop and if the cost-savings required by the State at the outset are greater than those immediately generated by the new model, the deprivation of funding will starve the political interest in the model.

The requirements that the State plans to implement include a 5% aggregated savings, and an additional 5% (basically an insurance policy) which will be aggregated and reallocated in case of emergency. So the goal is that clients will have a budget that averages out to 90% of what their regional-center funded services would have cost. In addition, each client will be required to hire a fund manager from the budget remaining. What this means is that there is a number, somewhere over 10% that clients will have to immediately realize in order to be as well off as they were under the previous model. By year two or three, I'd be suprised if that level of savings were difficult to realize. In year one, it's pretty dicey.

The political question becomes important. Clients and their families have driven the development of the SD service model. If the model has early success, I suspect a significant portion of clients and their families will want to replace the old model with this one. If the initial roll-out is seen as a failure by the enrolled clients, we do know how to oppose things. In the minds of clients and their families, success or failure will not be measured by the State's savings but by improvements in their ability to acquire the support they need.

As I mentioned earlier, I can estimate a 12% ballpark level of savings with a random sample of our clients. If this is close to the right number, the current requirements are too high in the short run for SD to maintain its popularity. In the long run, the savings generated will probably exceed the current requirements. Here's why I think so:

To comply with both our internal sense of quality and state law, there are costs related to training, administration, supervision and staff development which are universal to all of our counselors and applies to every hour the help clients. Some of their activities are of extremely high value, other demand less of them than their preparation. For example, shopping. Some of our clients, due to their disability, need some slight assistance in order to buy groceries. For the reason given above, that work can't be done by us for less than our standard rate. For many clients, that support could be provided by someone else at lower cost. Probably 60% lower cost. The problem for the present is that many clients will not have someone on hand, with a vehicle, ready to take them shopping. The market for satisfactory, lower-cost alternatives to traditional services will take some time to develop and until it does, the largest savings won't materialize.

My concern with the 10% and a fiscal manager rule is that in the first year (or two,) clients will not have access to the same quality and quantity of support that they have had under the traditional system, and, as a result, self-directed services will lose the interest of many of those who would eventually benefit from it.

So, here are some possible remedies:
The Medicaid Waiver only requires cost-neutrality so the State may wish to eliminate the initial 5% of savings until, say the third year.
Because the fiscal manager will be performing functions currently provided through regional centers, use some of the operations appropriation to pay for the FSM.
Use a phased system, including a 2.5% savings requirement and a 2.5% "insurance premium" in the first year, with a planned increase in the third year.
A final possibility, as long as a client is free to move back and forth between the traditional system and self-direction, is to eliminate the "insurance premium" initially, first to allow time for the State to calculate the appropriate level and second to improve the success rate in the first year. The traditional system can be the resource of last resort.

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?