The meaning of Marty

As many more people than are ever likely to read this blog now know, Marty Omoto today announced the suspension of his advocacy work through the California Disability Community Action Network.  As everyone I'm aware reads this blog knows, Marty and I are both friends and colleagues and I admit to both a bias and an interest in his welfare.  So, like Mark Antony over the body of Caesar, I want to publicly share some thoughts about the systemic importance of Marty's work while maintaining the friendship privately.  Friends, Californians, countrymen, I come to contextualize Marty, not to praise him.

Going back to the days when he was with UCP, Marty is best known for his reports and townhall meetings.  Leaving aside other accomplishments, Marty's work has revolutionized advocacy in the narrowest sense of that word, preparing the people whose welfare is most affected by public policy with information and involving them in their own struggle.  

This is not the way things were done when I entered this system in 2000.  During the Service Delivery Reform effort, my introduction to this system, California's DD policy and Sacramento, stakeholders represented peers who were strangers.  A good person elected by a dozen or a hundred others to represent People First spoke for 200,000 strangers.  Someone selected by the State Council on Developmental disabilities spoke for the same 200,000 strangers.  A few associations sent lobbyists or representatives (of which one was Marty.)  These associations might have 100 or 200 members each or ten or twelve, and they would speak for their 8,000 peers, the overwhelming majority of whom were strangers.  ARCA would speak for their members and the 8000 providers and the 200,000 clients.  SEIU spoke for workers in the field, of whom, maybe, a few thousand were voting members and 100,000 were not consulted in any useful form or fashion.

Marty shared inside late-breaking information at all hours, to anyone interested.  Somewhere around 50,000 people are now kept up to date and provided a platform for input through Marty's efforts.  Is it possible that any stakeholder group ever gathered by DDS included the will of 500 people who had been substantively consulted or that 1000 people ever learned what had been discussed by any other channel?  

In an open vote in a public place, the proposition that our work ought to be person-centered would receive something near consensus.  In that same forum, we would pass a resolution for the dignity of every person with disabilities and their right to informed consent.  Any group of us with strangers watching supports the inclusion of people with disabilities into the whole tapestry of our society.  "Nothing about us without us" would be acclaimed at convention up to the rafters and down the street, born on the shoulders of confident advocates and electric wheelchairs.

In our system, there is always room for disagreeing with one another, always room for arguing with one another, and outside of the present emergency, even some room for pillaging, cheating and insulting each other.  But if we understand those principals we claim to uphold, there has to be room and support for the distributed, democratic and collective advocacy that wasn't here before Marty put it here and isn't likely to remain if he departs.

Save your self(-determination)

On this blog, we have discussed SDS (self-determination or self-directed services.)  For examples, you can click here (and please forgive the self-referential first result.)  I have tended to argue stridently for self-determination in concept and ambivalently for self-determination services as proposed and grouchily about SDS' roll-out.  Now SDS seems dead after an unfriendly end-of-life. But the basic concept still seems relevant, particularly with the traditional DDS system wheezing and scowling.

So, a first question would be what was the basic concept?  If you read the languishing proposal to the federal government, you don't know.  But I would argue that the basic premise was that the individual level is the best one for identifying and addressing the needs of an individual.  

When you look at what SDS offered, there are obvious efficiencies available under a person-centered service regime which can save the state money and improve benefits.  Now that the SDS movement is on the shoals and it's cargo poisoning seals, we have an opportunity to consider whether what was important in SDS remains viable and worth salvaging from the wreck.

Self-identification of needs and solutions remains, in theory, the official law of the land and the funniest joke in the villages.   There exist more than one way of putting the I back in IPP/IFSP.  Certainly, the preference for providing supports by availability rather than appropriateness allows a great deal of waste in our system, of state funds and client energy.  This ought to remain a focus in bad financial times more than in good ones.

Administrative cost will continue, I'd think, to be under pressure.  Instead, this is what advocates seem to defend most passionately.  Clients who are able to protect themselves don't need to be paid to do so.  Clients who are able to advocate for themselves don't need to be paid to do so.  Clients who can judge among available options for their own goals don't need to be paid to do so.  So why hasn't the devolution of the purchase and oversight power of regional centers and vendored executives come under attack with the community budget, for those clients able to take up the same task?  Even the development of SDS empowered regional centers, progressively, to apply themselves to tasks capable individuals will do for free.  

Throughout our current budget fandango, deregulation continues to not come up as a means of reducing fiscal pressure.  It ought to be remembered that beside stifling innovation, regulations always have a fiscal cost as well.  A correct system will balance the cost of regulation and supervision against the not unreasonable fear of liberated vendors.  SDS offers a terrific vehicle for testing a more person-centered regime as a cost-effective means of oversight, but even without SDS, some rebalancing is called for.

Unvendored services still offer more cost-effective resources for many currently vendored efforts.  As long as the only way some ¡Arriba! clients can reliably carry out normal activities is by ¡Arriba! employee chaperones, we will continue to provide that assistance at our new, low, low rate.  But there are a lot of trips for which a neighbor with a Camaro and twenty bucks for gas is an almost perfect substitute at half the cost.  SDS was a useful model for testing the safety and availability of unvendored providers of unskilled services.  Even without SDS, policy-makers ought to be broadening system resources. Unvendored services can often be more integrative and inclusive than vendored ones.

Without a formal SDS proposal, some of the the composite policies still offer relief to a stressed system.  The development of those policies, in turn, can increase the level of self-determination in our system.  SDS may now be decomposing and might have started to decompose premortem, but before we bury the remains, it's worth seeing if there aren't some nutritious bones left in the carcass.  If we aren't that hungry yet, we are likely to be soon.

Impertinent data

At the Senate subcommittee meeting yesterday, I was reading through the agenda which mentioned DDS's annual report which was described as "pertinent data" about the people served by the system.  Let's use that as an excuse to talk about what data DDS doesn't provide (or gather.)  Service outcomes would sure be useful, particularly in a shrinking budget.  Which Independent- and Supported Living agencies are most or least likely to help someone move out from a residential facility, and which are most likely to see their clients return to licensed lives? Which employment models and agencies are most likely to see their clients move upward in income and downward in support need?  Which residential facilities serve happy clients and which are essentially traps?  Which transportation agencies have the best record of picking up on-time and dropping off uninjured?  Do some agencies see more abuse than others?

Other pertinent data would be pertinent data.  Do some regional centers provide more information on options and alternatives without being asked?  Do some regional centers see their clients live more fully or require less support over time?  Are there regional center policies that might correlate with outcomes?  Which regional center will be the first to notify a client of their appeal rights as required? 

This would all be pertinent data.  This information would help our system learn, evolve and do better work with less waste.  We would be better off if we had no idea how many Californian 15-year-olds have diagnoses of autism and some notion of what works for those that do.

The people and their anointed

California's political system is a funny creature.  Our politics tangle in the radical democracy of the ballot initiatives then get caged by the radical republicanism of legislators who choose their constituents rather than the other way around.  I never feel our government truly represents the people except when I compare the results of the two law-making processes.  When I insult our legislators, it is principally over their carefully districted intransigence against common sense, voting aye on every expenditure without a thought for value and nay on every tax without a care for cost.  And yet, we seem about to vote down the proposition 1x tax increases and how often does a bond measure fail?  The two systems really are parallel. 

Somehow, the one heroic effort of the legislature- to redact representation from their duties of office- has also failed.

Better government ahead?

The good and great have reminded me that I haven't posted here in a while.  I started to, now and then, but obviously, I'm delinquent earning my pay and reputation as a blogger.  I have no coherent or clever ideas to post about, so now is a perfect time to remedy the situation.

Generally speaking, I have been an enthusiastic critic of California's legislature and a temperate admirer of the administration.  One thought substitute I can offer is this: We may reasonably hope that California's government improves as a result of the budget crisis.  The legislature might improve because fools and cowards wait to be forced before acting, so the impossibility of California's budget may be enough to move a super-majority, if not a consensus in the statehouse.  Someone should spray paint legislators shoes on the capitol carpet to verify, but our representatives may start to move any day now.

The administration might improve also because of reduced friction.  For three terms now, DDS has sought to reduce the growth of its spending.  Good ideas and bad ideas have come to naught (the resistance obviously being to ideas.)  In our current predicament,  the reform instinct ought to be nearly as common outside the Bateson building as it is within. 

There are reasons a reforming government may not be a good thing.  Some of the ideas that have come out of DDS for reform have spanned the range from simplistic to stupid, the statewide POS standards being an example of the latter category, and "discounted" rates an example of the former.  But some, such as self-determination/direction and performance accounting have been inspired unaccomplishments.  If the administration can focus on smart reform, to the purpose of more efficiently serving people with disabilities and the legislature can learn to say yes to good ideas and no to advocates as needed, then the California's burgeoning poverty may yet profit the state.

And a note on trust and reform

Here is something in the way of reform: Who do we trust?

If a reform requires regional center discretion, such as the frequent proposal to require maximum cost efficiency from a vendor or allowing negotiated payments, most of the community won't trust the reform because we don't as a rule trust regional centers.  We don't trust regional centers because as a rule, they aren't trustworthy.  They aren't trustworthy because, as a rule, when someone at a regional center does something unwise, whimsical or badly, nothing unpleasant will happen to them.  This tends to be true for individual service coordinators, executives, boards and middle managers.  The community but for ARCA won't support reforms that empower the regional center to do anything because we all know well that regional centers are too empowered already.

If a reform empowers vendored agencies, we won't support it either.  Take for instance, the example of proposals to have vendors rather than regional centers perform the service coordination function.  The community won't support that reform to empower private vendors because the community doesn't trust us and the community doesn't trust us because we have not been reliably trustworthy.  We are not reliably trustworthy because, in general, nothing bad ever happens to agencies for poor performance.  Nothing bad happens to agencies for poor performance because nothing bad happens to regional centers for poor performance.

There are a lot of reasons that self-determined services (SDS) make sense, but I suspect one reason SDS offers the only recent example of reform (stalled as it is) must be that it doesn't empower anyone who has any experience with power to be proven untrustworthy.  Not long hence, support brokers and financial management services must take their places as proxies for the politically untouchable clients as stereotypical reprobates.  Soon, we will not trust them because they will not have been trustworthy because nothing will happen to the bad ones because nothing bad will happen to the people meant to oversee them.

Reliable accountability remains the reform needed before any other can be expected to go forward. 

A note on DDS work groups.

Today during the CDCAN town hall teleconference, DDS Director Terri Delgadillo mentioned the working groups she has convened to look at structural reform. Such working groups are typically composed primarily of association representatives and an aberration or two.  Recognizing that these work groups are a step toward transparency and community input, a few questions ought to be asked.

How representative are the work groups?

How transparent are the meetings?

Do the work groups advance a reform agenda?

The first question is easy.  The work groups are not representative in any important way.  They do tend to be diverse ideologically in the sense that whatever CRA is calling itself now always defends congregate facilities and whatever Protection and Advocacy is calling itself now, had its staff been trained in the practical arts rather than law, would likely chloroform and kidnap every client that entered such a place.  But there's a problem of selection bias in calling the work groups ideologically diverse.  As long as CRA' and PAI' are at the table, congregation v integration seems like a more important issue than it does almost anywhere else.  So, what passes for diversity tends be a divergence of limited viewpoints rather a collective voice.  The work groups seem not to be meaningfully integrated into or representative of the greater community of people interested in the development or reform of our system.  

I suspect if you could inebriate the architects of the work groups (and you generally can,) they would tell you that the real selection is based on getting buy-in rather than input.  The first composition probably begins with the list of groups with the means to scuttle or inconvenience legislation, continues with the natural opponents of the first group, and ends with Connie L. This is politically smart, and as long as the goal is pacific politics, the process makes sense.  But if the time for reform has come at last, workgroups made up of well known "stakeholders" with rigid "positions" will get in the way.