Monday, July 10, 2006

Apologia

Maybe, Doug Antagonistes. There, that's pretentious. Anyway, Greek really can make a fool look smarter.

I have been informed recently that it is a little confusing trying to guess where I will come down on a given issue, particularly when it comes to new regulations. I thought now would be a good time to restate the first principles of reform as I measure them.

1. Choice Trumps
Most everyone involved in California's Developmental Disability System agrees on three things: That people with disabilities should live lives based on their own choices, that people with developmental disabilities should be fully integrated into their communities and that the health and safety of a served individual should be protected. Even a reprobate like me agrees with all three of these principles.

Not long after becoming a part of this system as an Uncle and as an executive it became clear that on a great day or with an extraordinary client, these three principles work together in perfect harmony. Most of my professional life, however, there are conflicts between two or all of these principles. In extreme situations, like a human locked in a box or someone with frequent seizures and a history of depression wanting to take a handgun hang-gliding, the conflict can be fairly easily resolved. When the distinctions are fine, however, I think we all demonstrate that one of these values is a moral imperative and the other two aesthetic preferences.

In the end, I find that client choice is where I won't give. Integration is important and should be a choice, but what of those people who don't choose integration. If what we call disability is to be seen as many of us would like it seen, as part of the normal diversity of humanity then people who neurological diagnoses are essentially normal and belong to a minority. When other minorities choose to live in communities where they belong to a local majority, this is generally considered ok. It should be with our clients as well. On health and safety, in extreme circumstances intervention is necessary and desireable as it would be with an alcoholic relative or a suicidal friend. However, like in those examples, it is important for the intervenor to establish that the individual, were they fully aware of all factors and able to implement a wise choice on their own, would behave differently. The default has to be in favor of an individual's choice.

I honor, but often differ on policy matters, with groups which hold health and safety or community integration as their most important policy goal. This frequently puts me at odds with my friends over the closing of Developmental Centers and the appropriateness of congregate services. When I disagree with CAIC or PAI, it's typically on this point.

My policy: When in doubt, choose humility. Because I told you to.


2. Err on the side of under-regulation.
When talking about policy, there is another matter to consider: Statewide laws and regulations can never take into account the idiosyncrasies that make up most of the matter of a human services system. In my own little imagination there is a formula. Since I made a pun of Agonistes above, I get to call this formula, Doug's Law: The formula for Doug's Law holds that 1 divided by (10 to the power of X)+1 is the likelihood of a decision being correct where x is equal to the number of intermediary reporters between the person affected and the person making a decision. So, a decision made by direct care staff has a 50% chance of being correct for the person served. A supervisor making a decision based on the advice of the direct care person has a likelihood between 8-9% of making the right choice. Regional center policies probably provide the right solution around 1 time in a thousand and DDS about 1% as often as a regional center. Executive Directors of agencies would get it right around 1%-.01% of the time if they weren't so pitiably stupid. There is no empirical evidence to support Doug's Law but it sounds right and anecdotal evidence abounds.

The upshot of this is that regulations that sound morally correct are very rarely right in implementation. I lean heavily toward reform which relaxes regulation in favor of accountability for outcomes. Specifically, risk, reward and oversight (verification) should be the guiding principles of the entire body of law by which the state manages this system. I honor but differ with groups that frequently propose or favor regulations which serve to bound decisions made by people who would not recognize the proponents in the criminal line-up which many should be standing in at any given time. As a consequence, I frequently disagree on policy matters with organized labor, most large advocacy groups, and many parents' groups on matters concerning regulation of agencies and regional centers, and I tend to disagree with regional centers on the value of POS policies as guidelines.
My policy: Support insuring outcomes and leaving process to chance. Plan to follow.


3. Put the cart before the horse.
Almost everyone I know agrees that outcomes are all important and almost no policy is ever proposed or implemented that doesn't directly controvert this principle. Every time a "best practice" is mandated, every time a proposal comes forth to prefer one mode of support over another, every time wages are legislated the assumption is that this will help clients live lives that are meaningful to them and yet the 200,000 or so people aren't often asked by policy makers what is meaningful to them or what help is needed.

Separating a person served by our system from the most appropriate support is massively inefficient, because money is spent on something that doesn't help as much as an alternative. No one handy suggests a tool before they know the project and yet some groups annually propose to alter the landscape of available services without ever learning what help is needed by whom for what purpose except anecdotally. People whose primary language is neither English nor Spanish nor spoken are rarely heard from even anecdotally. Once again, the real accomplishment would be to see that every person served makes progress towards life as they would choose it. Given that nothing useful is ever measured in our system, I could not be more certain that it is possible to mandate any service mode now vendored or imagined at any funding level without helping anybody.

Aesthetically, I don't like congregated services. To the (statistically nonexistent) extent that my niece's Uncle Doug will advise her service decisions she will never even look at a site-based day program or a group home. But still, as in item 1, I don't believe any person born with disabilities should suffer further because of my good judgement and moral vision. If the system worked right, and I am right on the unattractiveness of congregant services, most such programs will close and the rest be genuinely needed. While I cannot picture a stranger (or my niece) working in a site-based work activity program and be happy about it, it's actually fairly easy to imagine someone who, for some time, would benefit more from such a program than any other type. Just off the cuff, someone with significant anxiety towards the community at large, no existing work skills, normal fine and course motor control, and treatable behavioral issues might succeed in a WAP setting to prepare for more integrated and more meaningful work, while that same person might fail repeatedly without that preparation.

Some of this inefficiency actually harms clients as opposed to just wasting scarce resources or not helping as much as possible. When process becomes the focus, the goals of the client can be adversely affected as easily as neglected.

Again, I honor but often differ with people (nearly everyone I like) who would use state or regional center policy to determine broadly which forms of service are available to the community at large.

My policy: Support letting the design and prevalence of supports result from their success meeting the real needs of individuals, even if the result is more of format I don't like and less of what I personally sell. As a matter of policy.
Oh, and happy second anniversary to this blog (last month.)

4 comments:

Andrew said...

Yo, Doug. I think I can write this like an email. No one's going to pull a post up from three years ago, are they?

Every so often, my old email provider adds a dozen or so saved emails from my past that it appeared to have lost forever last year. Today I found one you sent to me in July of 2006 with a link to this post. I'm sure I read it at the time, but re-reading it now is a complete pleasure.

Thanks for reminding me that there are at least a few others in this system who share my opinion that demonstrating your respect for a decision made by a developmentally disabled adult is almost always far more important to the individual than whatever outcome their decision might produce.
(Actually I’m sure there are well over 200,000 people in this system who share this opinion-unfortunately they’re opinions are usually not considered)Demonstrating your respect for their point of view by not designing or redesigning services without consulting them first is far more important than anything you might ever design without them.

I'm proud of the fact that the change we made from a client-run, community-based day program (on paper, at least), to a site-based art program came from a request by the clients in the program. The last thing I wanted was to spend years of precious spare time and thousands of dollars on a redesign that meant securing a building and remodeling so we could address all the rules, needs and interests of Community Care Licensing. I also knew we'd be kissing off any rate increases tied to community integrated services.

I asked them to do a little research so I could buy some time to figure out a way to manipulate them into a "better" decision. When I finally saw what they wanted--a place to be that felt like it was theirs; the training, tools and venue to express themselves; stuff to do that had a beginning, a middle, and most importantly, and end; a regular sense of change; and the status that comes from a stranger paying money for something you produced-I stopped scheming and started working.

As if by karmic design, or a good behavior modification plan, a week after starting a couple of months ago, I was convinced that my decision respecting their decision, was one of the best choices I've made. We caught a bit of great, good luck, when we happened to hire a brilliant teacher. Within hours our clients started producing sketches and drawings that blew their minds, and blew our minds, and blew the minds of their families, friends and anyone who stopped for a moment to look.

Far more important than the blown minds of staff and families were the self-images and identities, set in stone years ago, which, in an instant, sprouted wings and flew.

I caught a glimpse of this kind of change when we started getting people jobs through supported employment, but still, nothing like this ...nothing so fast and so dramatic.

(geez, Doug, even my short postings don't seem to fit any more...part two to follow)

Doug said...

Thanks, Andy. It was good to reread this post and enjoy how little my thinking has changed since then, and how little the system has changed.

And congratulations. You did a wise thing following someone else's intelligence.

I look forward to part 2.

Andrew said...

(... rounding third for a play at the plate!)

Trying to understand what's happening, the best I can come up with right now, is that our clients feel they were given magic. If you know you can't draw a window frame, and then suddenly your convinced you can draw anything you want, it must feel like magic. Not only did they acquire a competency they never dreamed possible, but for the first time in their lives, they had something many of us didn't have, and (again for the first time) it's something we clearly envy.

We're now adapting and changing almost everything we started with on day one. We know we got lucky and we have to make sure we don't blow it. When you are grabbed by the throat and given a divine revelation, you don't wait for "things to calm down" before you change your life or your behavior ... you walk away a little dizzy, but changed.

Five bucks says that we can get you to change your statement that you would never pick a site-based day program for your niece.

After three years, this great post of yours, finally got it's first comment. I'm sorry I didn't really give it the attention or praise it deserves, but surely at this stage of our friendship, you're not expecting me to spend any time or thought on anything but my most passionate interest ... me!

Once again, great post ...more people ought to listen to you (you won't admit it ... but deep down, you can't deny it)

Andy

Doug said...

And you win the bet. I'd be delighted for Payton to see your shop.