Baron-centered services

When we talk about person-centered services, and most of us speak about such services reverently, we assume that the most efficient and most morally appropriate support for people with disabilities would form from the will of the end user, be shaped by those closest to the end user and that each degree of separation from the end user would decrease influence significantly. I don't challenge that assumption which I find works both philosophically and mathematically.

I have written before here how frustrating it can be the degree to which advice, technical assistance, rule-making and program formation follow a feudal system in which the principality of DDS is invoked by the baronies of the regional centers to direct the viscounts and baronets of the various vendored agencies. This is the least efficient, most morally suspicious method of standardizing services, particularly when the message seems to be "Here is how to provide person-centered services."

A feudal system requires the consent of the governed as much as a Democracy does. It bears mentioning that one reason the community-based system revolves around such centralized control has been that the vendors are so cagey, political and reluctant to insist that knowledge flow both ways or even offer some when asked. Clients and their families could provide more guidance too, probably.

And yet, in the current funding environment, I find it noteworthy that in our collective panic, the trend seems to be toward a more feudal system, particularly where information sharing is concerned. The ELARC board retreat, rather than a conversation, was allocated nearly entirely to congratulating the regional center (something it deserves- in many ways ELARC has been a model of administrative competence) and the promotion of some person-centered tools they developed. The participants, vendors, clients and family members were asked their input only in the final 15 minutes and in response to the question "What can we do to promote use of these instruments."

So let it be said here that the purpose of this meeting was to promote person-centered process offers only irony and evidence that many who promote individualized support don't understand what they say they are promoting.

If current events require a new level of partnership and a higher degree of efficiency, there will be much more time spent in which vendors, families and clients instruct regional centers. It takes effort to make a smart system and it takes thought. The distributed wisdom of community-based system ought to be our best instrument for making opportunity ought of current challenges. To that end, the certainty of regional center personnel and the recalcitrance of direct care users and providers are the most obvious obstacles.

Sidenote: I don't suspect that regional center personnel or vendors are intentionally complicit in the centralized course of decision-making in this system. I just think that findings have followed the funding for so long that long-time participants in the system, a group in which I'll soon have to admit membership, don't even realize how arrogantly or submissively they are behaving.

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.

Peer Pressure

I have already been reminded that those who are friendly towards me expect a more biting review of the conference than the one below. Please forgive me, friend, for forgetting my place. There's no better metric for the failure of the conference than that.

To be more biting means to be a little repetitive, because the weakness I found were those I predicted in this space, but to recap.

Wrong format and content: It is pure vanity for anyone to believe the substance or particulars of that conference are change agents or that the conference itself is a change agent. The truth beyond the fiction presented is this: No one working in this field needed this conference to learn the words "dignity," "meaningful," "individualized" or "appropriate." No one there needed models presented to provide dignified, meaningful, individualized and appropiate support. None of us missed the transformation from doing to to doing for to working with to working for people with disabilities. What we needed, need and don't have is a system in which the right, effective and most valuable support prospers and the deadening one is entombed rather than the person served.

What exists now exists as it does because the supports now offered are adaptive to the environment. Like gum chewing in a lecture hall. If we want change, and I think we're sincere about that, we have to change the environment and I don't believe we are sincere about changing the environment. We want to watch from under the sea as our issue prosper on land.

Look at the conference. Dignitaries, experts and other charlatans speaking from a lectern about listening. The conference was a site-based, segregated day-program using generations-old prompts to modify behaviors.

The topic is not what to do differently but how the system needs to change so that we can all get what we claim to want. When a system changes, every element within it changes in form, function or both. Regional Centers have to change. Providers have to change. Clients and families and DDS has to change. First change? Learn to use question marks. If the Devil were a question mark, it would have been the cherubs that fell.

Wrong Message: The message continues from last year. That the failure of the system is a failure of imagination. Or a failure of willingness. This is not true. All over the state are clients who know what support they want, unmatched to the many providers ready, willing and able to provide that support. It's not even a failure of will. The failure is to ask why the system doesn't tolerate the services we all imagine and how intolerance can become encouragement.

Glossary:
ADAPTIVE, adj. Expedient. Ethical.
APPROPRIATE, adj. Traditional.
COURAGEOUS, adj. Selectively submissive.
DIGNITY, n. A shimmering blanket draped over the head of the pitiful to reflect the beauty of the beholder.
INDIVIDUALIZED, adj. Filled to taste, as a glass from a vat.
MALADAPTIVE, adj. Inconvenient.
MEANINGFUL, adj. Fully funded.

Self-Directed Services (SDS) Regulations, an update.

The Community Services and Supports Branch of DDS held the second of a string of meetings with various specific stakeholders on Tuesday in Sacramento. There is to be a general stakeholder meeting on October 25 in Sacramento and a series of three teleconferences before the proposed regulations are filed with the Office Administrative Law which is planned for the dawn of the new year.

The first thing to be brought up in any discussion of SDS is the fact that it is currently linked in statute to the computer system CADDIS coming online. What has passed for progress with CADDIS is that in 2001-2004 DDS pushed back the "live" date by one year annually and in 2005 they pushed it back by a month every 30 days. They are backing up by a year, maybe, three times per annum so the true process for implementation of SDS almost certainly looks like this:

January, 2007 the regulations are to be filed with the Office of Administrative Law for a one-year process of acceptance.
January or, maybe, April 2008 the regulations are enrolled.

May, 2008, the live date for CADDIS is estimated to be March, 2010 and trailer bill language is sought to alter the statute so that SDS can be implemented following changes to the current data system and the roll-out date for SDS becomes January 1, 2009.

Summer, 2018 the necessary changes to the current SANDIS data system are completed and an entirely different set of regulations take effect.

All of that said, I can offer a few impressions of the current state of the regulations.

First, the budget setting methodology has been fairly well articulated. I'm not mammothly impressed by the statistical methodology on the surface but in fairness, I have no idea what was tried and how it worked. A demonstration of the methods and charts of the underlying data might lead to the conclusion that the methods were wholesome and fair or offer the community at large a means to improve them, apart from our instinct to just make everything more expensive where possible.

Notably, DDS has separated durable medical and environmental adaptations from the initial budget calculation to allow people who need long-lasting equipment to purchase that without fear of depleting the budget for ongoing needs. That was a smart and positive change. Unless such expenses are with-held from the calculated averages that make up one of the available budget methodologies, the cost-savings from SDS might be diminished and cost-savings will be important toward sustaining SDS.

Also, the readiness of the regulations was not what I might expect from something two months from filing. There seemed to be a lot of discussion points and items DDS seemed ready to reconsider. This suggests one of two things:

Either the meeting was something of a placebo with sincere intention to make improvements but also the willingness to make notes in the draft at more points than staff was willing to alter; or

There is no right version where the community will be happy and changes will continue to be suggested until we are all dead, which would suggest the previous possibility as the smartest strategy.

In either case, there are two new areas where I would have concerns somewhat more compelling than my usual flippancy:

1. In the eligibility requirements there was a disagreement between staff and some of the attendees whether or not the requirements in the regulations were more restrictive than in the underlying statute. As a historical note: During the discussions convened by Senate staff, the original DDS proposed statutory language contained this: that the eligibility criteria include, but not limited to. The Senate staff made clear that the "but not limited to" would be dropped in the statute and it was. The history is important because it makes clear that DDS was not meant to be empowered with the right to tighten the the eligibility criteria. For this reason, I think it is only appropriate, as long as there is controversy about the meaning of the regulatory language, to use the statutory language verbatim in that section. It will, after all, be the interpretation of the individual regional centers, not the intent of DDS which govern the implementation of regulations in nearly every case.

2. The "accountability system" as it is currently constructed seems to be as fraudulent as the one we now "use." In the current draft of regulations it will be the responsibility of the SDS client to submit an evaluation of vendors, which would be a wonderful thing to do if and only if the requirement to evaluate is enforced, something the current regulations offer no mechanism for, and the evaluations are aggregated and easily obtained, something else the current regulations offer no mechanism for. I would strongly urge DDS, if the authority exists in statute, to provide for a useful reporting system on quality. Granted, one of the virtues of SDS is the ease with which individuals can fire unhelpful supports, but a far more helpful method of improving quality would be to allow SDS participants some method for identifying those providers most apt to provide helpful support. If that cannot be done under existing authorities this requirement ought to be struck as a useless intrusion on the client's time.

Related to this second point, there are some elements, SIR reporting by unvendored providers comes to mind, that seem unenforceably mandated. Unenforceable mandates tick me off.

Two where the regulations seemed surprisingly strong:

A. The budget allocation process is magnificently transparent and predictable which will make it easy for potential participants to judge whether or not they will be well-served by SDS and which method to choose. There can't be three other sections in Title XVII as well-designed. That said, and as noted above, the right method for developing the actual funding attached to the process will make the difference between SDS being popular or almost unuseable.

B. The descriptions of the Financial Management Service, the role of regional center personnel, and the assignments of service providers are less overdefined than I expected them to be, compelling me to partially and semi-sincerely apologize for my previous post. In my opinion, DDS still erred on the side of over-regulating but not by as much as I was prepared to rant against.

On a whole separate note, I wish to grouse that those who pressed for eligibility criteria to exclude people receiving services in congregate settings will regret that decision a year or two after SDS rolls out, should they be blessed with world enough and time. I still believe that the effect will be to minimize community integration as a byproduct of the new system. That error being now enshrined in law, there isn't much to be done about that but whine, as I do here.

Self-Direction, Finale (for now)

To those who have noticed and inquired and thank you to those that have, I thought I'd wait until the new self-directed services regulations come out and then fume about how prescriptive they are and how they over-regulate while under-protecting the enrollees. I thought the new regulations would be out by now. That much I was wrong about.

Essential Lifestyle Planning as polytheism

Essential Lifestyle Planning (ELP) is a conceptual name given to a category of thinking and doing in the social services also called Person-Centered Thinking (PCT.) Blogging from the 2006 ELP Trainers Conference, I can report that this remains to me an intriguing, flexible and useful line of work. Agendas from the conference and some shapr insights that I hear here are being posted on the East LA Vendor Learning Community weblog.

One of the concerns that I have had and continue to have about the change process is how we prevent person-centered thinking from locking in as a secular faith. There are many holy words in PCT, rites (tools,) and styles of worship. There are anointed clergy, renegade evangelists and false prophets. The concern is that so much of every religion is hypocrisy and one of the challenges we face is how not to be superficially devout.

I have no doubt that person-centered people-first language and rigorous use of the tools can produce lives as restricted and support as meaningless as is currently practiced in our worst instutions. At the end of the day, the change we seek is to listen and respond and provide meaningful assistance and nothing about ELP makes that inevitable unless we're listening, responding and providing meaningful assistance. I have no doubt this religion will continue to spread and evangelize, but I wonder who will be saved.

Money and Reform

Lately I've been getting crosswise of friends, colleagues and conspirators over my baffling opposition to better funding for our system. I thought I'd clarify to you, dear reader since I feel kindly towards you unlike those rascals. But, I do believe this as well: The gap between how the system functions and how it should is greater than the gap between current funding and optimum funding. Add to that the great truth of life and government: that money is the enemy of reform.

It's not so much that I believe rates are high enough, but that I suspect a lot of funding isn't helping people with disabilities. I don't know how much, but I further suspect that much of the wasted many is not otherwise neutral but harmful. Redundant people signing off on client's choices. Quality evaluations that serve no particular purpose but around which client lives and agency practices are disrupted. Fiscal controls which repeat other ones and serve as a break on the system's ability to respond to change, challenge and opportunity. Systems of accountability which can be safely ignored by participants but which, again, disrupt beneficial processes.

It's a funny thing to me: All the best advocates I've known, when near home complain about dismal behavior by regional centers, scurrilous crimes by vendors, the lack of challenge for success. The lack of punishment for failure. And yet, we arrive in Sacramento and face the legislature and administration and say "we need more money," not mentioning any of the problems that bothered us in our homes and businesses.

I do believe the following:
*Self-perpetuating boards implementing public entitlements was a bad idea and has produced predictable consequences.
*The fact that all information regarding the quality of support options is universally not just subjective but idiosyncratic and anecdotal produces inefficiency and limits rational choice well beyond what any end user or tax payer should have to bear.
*Some massive amount of creativity is squelched by fear-driven decision-making by people marginal to the life of the end-user.

If all this is true, then to focus on funding over reform betrays everything we claim to believe and everyone we say we love in this system.

Oh, I said I'd write weekly didn't I?

My new friend, PARCA writes a blog advocating Regional Center Reform. He and I agree on a lot, and I was reading his site today, where he reminded me that I haven't ground my accountability axe recently. Shame on me.

Accountability is a massive deficit in this system. How much money is spent on needlessly restricting clients, providing useless services through feckless providers, choosing costlier options to superior ones, adding layers of bureaucratic duty or regulation unaccompanied by better outcomes? I don't know and neither does anyone else. So a lot, no doubt. Lest someone accuse me of regional-center bashing, I do hereby confess the lack of accountability is systemwide and applies to vendors, regional centers, pretty much anyone taking a penny under the DDS line item. My own belief is that the lack of accountability probably does more harm than the lack of funding to consumers.

The big picture need for accountability requires a systemic, thoughtful approach and drastic reform. But here's something we can do today:

A low-cost, drip-dry way to improve the oversight in our system would be to improve transparency. This can be accomplished with a little care for confidentiality by the magic of carbon-copying. As a matter of policy, any communication sent to a provider agency can be cc-ed to their vendoring regional center. Any communication sent to a regional center, if clients' names are redacted, can be cc-ed to the Department of Developmental Services (DDS) or the Centers for Medicare and Medicaid Services (CMS.) Any communication sent to the department can be sent to CMS as well.

It's a poor substitute for a system of outcome measurements that defers to choice, but I'll wager it would help in the interim.

"Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God." -Phillipians 4:6 (KJV)