Organic farming and row crops.

In some ways, the DDS system is the future of effective government, depending on entitled rights and an engaged private sector to serve the needs of a challenged population. The mission of the whole edifice is to sprawl, broad and variable enough that each person served can find their own access point to the help they need for their challenges and aspirations. An organic approach like this parallels innovations in the business world where individualization has proven more efficient in many scenarios than the standardization that the industrial revolution brought and maintained.

The culture of government, however, has trouble with risk and risk is synonymous with variation. So, having envisioned an ecology of support, the organs of government soon fall back to establish control and order. Instead of encouraging relatively unfettered innovation, the regulations develop over time to specify the types of service available and to constrain the freedom of the service providers, rather than specifying outcomes and allowing competing and co-existing models for delivering such. For example, if you compare the older regulations governing Independent Living Services with those governing Supported Living Services, their are significantly more barriers established in the latter. Consequently, individuals who would be classic supported living clients may receive Independent Living Services instead as a result of, perhaps, economic or health risks which result in sometimes leaving apartments to stay long-term with family.

Over time, the instinct at regional centers has often been to harden and sharpen the distinctions. For example, to deny any individualized living support or training to individuals who live with their families or in group homes, which often has the effect of limiting people to their current setting. The consequence has tended to be to regiment the people served rather than to liberate them.

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.

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.)

Why transparency matters

Transparency may be the most underappreciated feature of a strong system. Every day system stakeholders experience the ability of bureaucrats throughout the system to stretch the letter and spirit of existing statute and regulation. Often, those innovations are flexible solutions to situations not foreseen in the development of existing law. Often the experience is of a misrepresented regulation for the purpose of saying no to a flexible or compulsory solution.

The more that DDS, Regional Center and Vendor actions are exposed to sunshine, the more likely flexible solutions will be applauded and inappropriate denials of rights will cost the decision-maker. At every level of the system from the legislature to the quality of breakfast in a group-home, people with disabilities benefit from the various agencies understanding that the quality of their work being widely known and understood.

I offer an additional point, my own theory. I do believe that control must be balanced with the organic process of policy-making. Because most decisions are made in the dark by people alone, each of whom most often prefer to be in control, I expect that the system of support for people with disabilities is massively out of balance on the side of rigidity. An open dialogue can massage that stiffness and restore some of the flexibility the developmental disability system in particular was wisely designed for.

The CDCAN initiative to enable journalism by system stakeholders is so important. The fact that anyone's actions may be the subject of a webcast marks a major change to the milieu in which professionals act regarding disability rights and opportunities. Along with the teleconferences which highlight the micro-effects of macro-policy, CDCAN is the largest part of a systemwide push for greater transparency and through that, greater accountability and better decision-making.

CDCAN is not intended to be, nor should it be the only agency expanding transparency. At the local level support groups, boards of directors, blogs (God help us,) and other networks have the opportunity to make transparent local and even individual policy-making and action.

A note about client and worker confidentiality. The right of the individuals involved in this system impedes transparency but also represents a crucial element of the dignity of the individual. Efforts to increase informal information-sharing and public awareness of what actually happens in the system need to consider the importance of privacy and privacy-protecting law. That said, two principles should be remembered: The freedom of the press is enumerated in the constitution and, therefore, no law or regulation can impede the right of people to seek information regarding public decision-making and to publicize the information obtained is superior to every confidentiality provision on the books. Second, confidentiality is the property of the person the decision regards, not the professionals participating. There is unlikely to be a legal offense where a person wants their story told.

Update: Chris Thompson has left a link to a site he writes with a partner on transparency as a communication tool. Click here to read about why transparency matters.

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.

This year's cost containments

Demonstrating either my clairvoyance or my willingness to talk about matters I know nothing of, a few comments on the cost containments to be proposed by DDS this Spring. It's my workup for the California Disability Community Action Network teleconference so those of you with good fortune to read this before the teleconference will know what I'll say, and those of you listen to the teleconference first can quit reading now.

The cost containment mentioned in the Governor's Budget may include new contract language for regional centers requiring certain Purchase of Service decisions to be made in a certain way. For example, the low-cost provider able to meet the needs of the consumer shall be used and, where appropriate group services should be used rather than one-on-one services. On a common sense basis in which the words appropriate and need have their usual meanings and include a respect for important preferences, this should already be the case and isn't. In that regard, I'm tempted to agree with this proposal.

On the other hand, the first requirement of citizenship is to disagree with the administration and I do. Confidently. Two perspectives seem very difficult for the Department, which make disagreement not only possible but easy.

On the one hand, regulations and statutes and contract language have very little to do with service coordination except in cases where they amount to no and that seems like the better answer to the regional center decision-maker. Many of us here the once-proposed requirement to prefer group settings where appropriate and imagine that it will be quoted and followed faithfully always and only where inappropriate. The low-cost provider who meets the client's needs will be the provider at whatever cost who meets the service coordinator's needs or no-one's. I'll wager that no end-user of this system or vendor will find my claims here controversial or exaggerated.

The second, and more essential perspective missing from this proposal is the understanding that regulations are most often sources of inefficiency and poor outcome. When our system works best it provides a continuum of support to clients that reduces the need for supervision, future assistance and expensive support by assisting the individual to make choices. This is the most cost-effective behavior in our system where the client lives fully and the taxpayers save money. Any regulation, including contract language, of that process inhibits creativity, innovation and motion along this path. Proposals like the one I expect are as likely to freeze a client in an unchosen environment at needless cost as they are to save money.

Back to Self-Directed Services

Many of us are looking forward to the implementation of Self-Directed Services (SDS) in 2007 or 8 or 11 or so. Of course, all of us looking forward to that roll-out are assuming that when SDS rolls out, it will include self-direction as one element of the program. Just to honor the name and all. Here are three questions:

1. Will the roles of Service Brokers and Regional Center Staff be clear and separate? Service Coordinators (SCs) have for a long time expressed strong preferences towards what services and agencies clients receive support from. This makes a Service Coordinator a valuable resource to clients who are uninformed, indecisive or dependent. For self-directed services to live up to its name, an almost complete divorce from the service coordination function would have been optimal. In the case, it is at least necessary to redefine the role of the SC in a way that will not occur naturally, to make room for the new autonomy given to the client and to allow the service broker to be valuable. I would recommend a prohibition on SCs discussing matters appropriate to the role of the Service Broker.

2. Will the oversight of the SDS program support or inhibit the control of the consumer? Assuming that there will be accountability in this system (a boy can dream) it will be important what measures are tracked. Such indicators as level of integration, generic social network, and level of employment are great social goals but can't be assumed. Some people with disabilities prefer the company of other people who identify the same way. Some people find paid work less rewarding than volunteer work. Granted, SDS is an integration program in self-determination drag, but some accountability for the misnomer should require that clients be allowed to choose their own objectives and that no-one be incented to deflect or undermine those choices.

3. Will this system manage risk better in SDS than it does in the Regional Center system? Autonomy means nothing without the availability to take risk, and no plan is person-centered without an understanding of what chances may be taken and which won't be. Under the current system the assumption is that risk is good unless something goes wrong and then it was bad. Will the SDS include a new view that lets the individuals served choose which chances to take, and enjoy the results. Those of us who are eager to help people through SDS program plans will depend on the idea that if our jobs are done well and the client experiences an adverse result from an informed choice, that we won't be buried with the emperor.

I'm pessimistic that I know how these questions will be answered. Doesn't hurt to ask 'em, though.