Families and Reform

The Apostle Stanley is stirring it up in the comments in the post below this one, comforting the afflicted and afflicting the rational.  His comments have inspired some thought on my part, no mean accomplishment.  

If you look through this blog over the years, those reforms I argue for most consistently: transparent and public outcome evaluations of programs and policies, self-determination and its pale cousin self-directed services and value-stream management share a common assumption: That end users of the system, given the means and opportunity to do so, will choose quality supports providing the maximum likelihood of achieving the client or families goals.  It is on this basis as well, that I tend to kick against top-down, regimentary solutions such as those Stanley suggests.

I make this assumption in direct contradiction to some experiences I've had.  I am often at meetings with groups of clients and/or family-members gathered for the purpose of advocacy.  Often at those meetings, complaints are rife towards service providers and regional centers.  The commonest answer to "have you discussed this with your agency/regional center?" seems to be "I am afraid they will retaliate."  The commonest response to "Have you considered changing agencies/service coordinators?" seems to be "It's a lot of work and, anyway, the next one might be worse than the last." 

I recently told a good friend after one such meeting of my suspicion that if mediocrity in a service provider cost money, excellence would abound.  Likewise, I suspect that if listless service coordination made extra work, service coordinators would struggle to be responsive.  

I am sure fears of retaliation aren't entirely unjustified and I certainly grant (and assert) that discovering quality supports is impractically hard.  But, if end users won't seek alternatives to poor service, then Stanley is probably right, the only way this system will get any better is a top-down process that will also make it less creative, innovative and diverse.

Well, that was kind of sensible, mostly

As some of you might have heard through a friend of a friend, the Governor's May Revision of his budget is out. It did not live up to the Cassandaric expectations that I and others had. There is no apparent further cutting to DDS' budget, although there are further reductions due to lower caseload which can mean either (A) we have looked at the data and the trend is lower than expectations or (B) we have some evil plans so subtle that to announce them would be like putting marzipan on a gourmet gateau. It will be worth asking questions about that. 

In some ways, I have to say I'm a little disappointed. First and least, because I think the sustainability and stability of funding is more important to what we do than sufficiency, and I'm skeptical that such a large budget gap can be honestly solved without more pain (and fewer 'S's.) Secondly and more importantly, because this system is so reluctant to change, even for improvement's sake that budget crises are usually the minimum requirement to discuss reform. Thirdly, I'm pre-emptively disappointed because the various associations, providers and regional centers are generally much more vigorous in defense of Regional Center cuts, than when the cuts bypass agencies and harm clients directly as is the case in the May Revision. The eye-catching cuts are to CAL-WORKS, which many people with disabilities use, IHSS which many people with disabilities use and Medi-Cal which most people with disabilities use. 

So the question is: If we could reform the DDS system to provide more value with less money given a promise* that any savings would go to backfill IHSS, Medi-Cal and/or CALWORKS what would we, as a community, do? If the answer is nothing, we deserve much worse treatment than the administration has so far given us.

*I'm not sure it would be wise to believe that promise, although "why save money for people with disabilities to protect prison guards" is both a realistic and depressingly cynical response.

***6/5 Update: I learned a new blogging trick, by Jim.  Comments are currently closed on this topic but open on all others.  If you find this outrageous, please contact me or leave a comment in the post above.  If anyone wishes to email me and doesn't have my address, it can be obtained by clicking on my name under "Contributors" above and reading down the left hand column of my profile.