Brand new bag

Howdy and a quick announcement. I am now writing generally about social services, human services and professional caregiving for Examiner.com. It's something slightly closer to a job than this blog has been. The new site will take most of the effort I've been putting into this site (roughly 1400%) and be less focussed on developmental disabilities. I'll keep this site so Andy and Stanley have somewhere to rant and I can get deep in the policy weeds from time. The link to my new page is in the title of this post.

You're all welcome to join the conversation there.

The pettiest post on this site

This is a very small point, but the conversation around caseload ratios for service coordinators has become too funny to leave be. What I keep hearing is that for HCBS waiver clients, the caseload ratio remains limited to 62:1 but that the cap has been lifted entirely for non-waiver clients. It makes sense that people would say this because neither CMS nor DDS nor anyone else want California to twit the federal government in a way that requires a response.

But, the assertion keeps getting made without irony or humor or apparent self-awareness so let's just us, we few who discuss here, set the record straight. If the non-waiver caseload is uncapped, then the waiver caseload is also uncapped. The reason I think so: I don't know of a regional center that has waiver and non-waiver caseloads. As far as I know, all service coordinators have mixed caseloads.

This means that that to say "we have a 75:1 caseload ratio" means the same distribution as to say "we have a 62:1 caseload ratio for HCBS clients and a 101:1 ratio for non-waiver clients (assuming 2/3 of clients are on the waiver and I did my math right.) Really, this is a very unimportant point, but I do hope you will join me in smirking whenever you hear someone claim that the caseloads are fixed for waiver clients.

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.

Microphobia

AB 1427 is a bill, now in suspense (whatever that means) with provenance that may as well be SEIU (it is not, per se, a union bill but close enough for blogging standards.) It contains no real mechanism for organizing and discussions with opponents, including one I had with a good friend yesterday, typically involve concerns around incrementalism. The fear seems to be that if the union accomplishes something in legislation around this system that the next step will be more invasive and followed by the eschaton.

Many who know me and the few who read this blog may remember that I don't love this bill. But I do think it's a small thing and unworthy of vigorous opposition. Change works best in small steps and if incrementalism is a fear advocates indulge in, a frozen system that can't improve is the natural result, kind of like the one we already complain about. While we are counting increments to fear, here are some the bill contains, other than a unionized workforce:

1. Accountability. The evaluation scheme outlined in the bill seems a little questionable to me, requiring comparison to a control group but offering no incentive or mechanism to establish that control group. To call the evaluation outcome measurement one has to assume that better-trained, longer serving staff automatically lead to better outcomes, which is not unreasonable but is still a process measure. Despite the flaws, the proposal is the first in a while that attempts to measure its own success. If this bill passes, actual valid quality accounting might become a standard part of our system in my niece's lifetime, although it would be rash to presume that it will.
2. Professionalism. From many perspectives, receiving healthcare benefits and regular training units can be more or less indistinguishable from professionalism. Professionalism does not grow more vigorously in a culture of CEUs, like mold in agar, but it is at least true that training and benefits can confer the appearance of a professional class. If the pilot project is successful in making staff more professional-seeming, there is a risk that one day the cowardly lion, tin man and scarecrow will end up agency executives if they aren't already.
3. Incremental Incrementalism. AB 649, a massive, systemic goliath of a bill failed. Last year, a more ambitious predecessor to this bill failed as a gut-and-amend amendment. If AB 1427 passes, we must be concerned that eventually, massive labor unions, trade associations and other special interests will put forward bills encouraging italicization of ambiguous words using permissive language.

Diamonds and dirt are forever.

If you want to level an accusation against regional center vendors generally and be confident you can make it stick, this vendor recommends "They suffer fools far too gladly." Westside Regional is in its, approximately, fourth attempt to convert Independent Living Services (currently service code 520, for those keeping score in your programs) into a standardized supported living-like program funded at a flat rate.

There are many astonishing aspects to this: the durability of demonstrated bad thinking, the ascendency of paperwork over people in the proposal, that the initial public conversation about each attempt always begins with a plan rather than a request for insight, the ivory-tower thinking of a community-based non-academic institution, the failure to account for client rights or the passive acceptance by vendors of a plan contrary to their own interests, hypothetical values and the needs of the people they serve. It's a little hard to pick out the worst aspect of this iteration and probably not worth the effort.

A little history, to be read as though it were in the oral tradition because I don't have time to fact check. Some time, in or around 2001, it was explained to me that Westside had conducted a pilot test of flat-rate ILS but that in the evaluation it was discovered that vendors did, in fact and strangely enough, respond to incentives and underserved their clients. Clearly, flat-rate ILS was an experiment that failed.

Nonetheless, the proposal returned from the grave twice more before now with the added twist of requiring the ILS vendors to become SLS vendors without changing their scope of service, except perhaps, to add 24-hour emergency response to replace the Regional Center's. On the first of these occasions, DDS was made aware by vendors of the proposal and a message was sent through vendors that the proposal did not appeal to the Department and could not be supported under the regulations. The second time, a letter was sent by DDS with the same message. Part of what makes this proposal so mystifying is that it seems to have no consituency beyond the Regional Center bureaucrats. If it were a tolerable cost-reduction scheme, DDS, at least should have liked it.

And here we are again. I was not present at the vendor meeting where the latest draft was announced, but as it was reported to me the Westside vendors offered no resistance. Maybe they see something I'm missing, but based on my reading of the proposal I can only imagine that either the vendors agreeing haven't thought the proposal through or they already know they'll cheat.

The plan calls for a minimum weekly activity with a flat rate covering that effort or more, plus a significant amount of paperwork beyond what is called for in regulations. On an hourly basis, the rate equates to $35.71 per hour, as a long term average, is higher than many ILS agencies receive but less than what others receive. However in long months, that rate will fall to $30 which, while higher than ¡Arriba!'s rate, is lower than most. There is no compensation for the extra paperwork and no allowance made for even small spikes in service, need or planning requirements (A medical appointment, court date or an SSI appeal can not be accomplished in increments of one hour.) If an agency provides even a small number of hours beyond the minimum, the effective rate is likely to fall 30% or more from their state-set rates. Furthermore, by requiring the activity to be weekly, the proposal would prohibit agencies from concentrating sparse hours to reduce the cost of paid travel between clients. This is why I am certain that agreeable vendors must either be fooled or frauds.

There are massive problems afflicting the proposal with regard to the rights of clients. To eliminate vendor code 520, and implement the new reporting requirements, the regional center would need to a) not inform clients of available alternatives, b) cancel services categorically, c) cancel existing services without ID team meetings and due process. All of these steps are necessary to implement this proposal and none of them compliant with existing statute, relevant regulations and/or federal law (in the case of Medicaid waiver clients.)

To summarize, this proposal has a long history of failure, is illegal, hypocritical, unhelpful and impractical.

And yet, there is value in this proposal: It is a perfect example of why innovation fails in this system. While there is no explicit goal for this proposal, beginning the conversation with a purpose and developing, in collaboration with vendors and clients, might have led to a solution with the possibility of a positive outcome. You can almost hear the voices within the regional center saying "we have to make our plan internally and then announce it as a done deal or else the vendors will just put up obstacles." By making that choice, they've left us with no alternative.

It may be worth noting that the Executive Director of this regional center delivered a scathing criticism of vendors for not providing attentive, responsive and individualized support at the New Day conference in 2005. Hopefully, the irony that he is overseeing a persistent effort to standardize the individualized services Westside can offer is amusing to someone.

Train Campaign

What is clear to almost everyone I know who is involved in this system is that training follows only good people in importance when it comes to quality of care. What seems to be clear to a lot of people other than me is that large amounts of formal training in a standardized statewide mandate will help a whole lot.

Recently I have been made aware of campaigns or suggestions by The ARC of California, the California Rehab Association and the Consumer Directed Services Network (CDSN, an ideological fellow-traveler with the Service Employees Internation Union (SEIU) all of which have proposed funding access to curricula from The College of Direct Support (CoDS.) One proposals would mandate the training for everyone, one requests funding, and one would implement a pilot project through an Assembly Bill, AB 1427 which offers a rate enhancement for agencies whose employees, among other requirements, complete 200 hours of online training. I can be supportive, generally, of access to the CoDS curricula for staff but am generally dour regarding both the prospect of a statewide mandate and the amount 200 hours.

The most peristaltic reaction I had is to the idea of the mandated training. Anyone who is in the professional or receiving end of client-centered support learns quickly that almost no knowledge is universally applicable. Some small number of techniques for more quickly and usefully establishing communication between staff and clients, such as Essential Lifestyle Planning may be of universal application but almost nothing else is. So one obvious drawback to a statewide curriculum is efficiency. In one-on-one, person-centered support the majority of formal training will be useless between a given staff person and a given receiver of services. Less so, but also, this will be the case in congregate services, however standardized. Spread requirements for training across a system serving over 200,000 individuals and the waste must be in the millions of dollars at least. The current system clearly doesn't want for waste or wasteful suggestions which are both in great supply and substantial demand.

The second concern, related to the first is the general one I carp about regularly. An effective system of delivering value to individuals must allow that individual to define the value. Statewide training mandates are one more large intrusion into the time, funding, and attention of those who offer and receive services driven, devised and defined by strangers.

A final concern, and this one takes in the AB1427 proposal in its current form is the matter of whether formal training not required by the task is good, bad or neutral. They say if you have a hammer in your hand, everything looks like a nail. My concern is that providing tools by training will influence the suggestions staff and managers will make, what problems they see to solve and how they approach those problems. At some point, the standardized curricula may detract from quality of care as easily and often as they help.

Training is important but only helpful when helpful. Standardized curricula can be harmful and are far less likely to be helpful than either informal training or formal training prompted by the needs and situation of the service user.

My suggestion is that more appropriate training is the change worth seeking, measurably better training a laudable goal and more training shady in the typical way.

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.

Lessons from 2006

Here are some things I learned or had (re)confirmed this year.

1. DDS is so angry at my writing about self-direction that they dropped CADDIS during my vacation to make me look stupid.
2. People with a taste for real change aren't always who you think.
3. System funding is as much an emotional issue for people as it is a practical one, but chocolates and flowers would be cheaper and more helpful.
4. "Efficiency" is a word people love to say and hate to hear.
5. "Accountability" is another.
6. Connecting people is the heart of every important reform.
7. The job of helping people with disabilities to live more fully is still worth doing.
8. The job of changing our system so it helps people with disabilities live more fully is most glorious because it is so unlikely.
9. Some people think living in solitary idleness in your own home is so much better than living with friends in a segregated setting that no one would ever choose the latter even if it came with a large stipend and DSL.
10. Saving the current system and funding it better is an errand for a superior and more committed fool.

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.

Choice and Choices, Part II

The process of filtering the client's IPP through vendor codes has two major costs. The most important is to the well-being of the client. This post will explore the less important cost, to the efficiency of the system.

To recap, the process of planning and purchasing support in California's developmental system begins with the client, those the client cares to have input and the service coordinator from the Regional Center, as well as any professional support providers in place to review the clients preferences, their disabilities and to plan for whatever support will mitigate the effects of the disabilities on the individual's aspiration. Good start if done correctly.

The next step is generally to attribute the supports to certain vendor codes based on matching needs with codes, but primarily based on Regional Center POS policies. At this point, the plan becomes centered on the vendors not the clients. The efficiency cost is this: If the POS policies are taken as gospel and they too often are, there can be a gap in resources which can only be bridged by purchasing the wrong support for too much money.

Here's an example off the top of my head but not theoretical. If a Regional Center tries to contain costs by limiting units of service available based on vendor codes, one can imagine (or name) a client whose needs exceed the provisions of the POS policy. If, as often happens, the regional center seeks to maintain those policies rather than make an exception, a client can fail to live in their own home, leading to a group home which leads to a day program which typically requires transportation. The result is, and this happens frequently in this system that when $5000 per year in support doesn't suffice to maintain a client in their own home, plan B costs closer to $40,000 per year while providing the wrong services for the client.

The response often made by people defending POS policies by vendor code is that they make exceptions when following the policy will lead to the client's living in a more restrictive setting. Heck, we're required by law. Anyone who works directly with clients knows how rarely this is the case. We go through this process. There is typically a long road into crisis and a longer one back from the brink. Clients in our program have died, ruined their credit or lost their health before the evidence that the POS policies were deficient became clear enough for the exception. The client who died now costs the State nothing. The others now cost the state roughly 6-8 times what the adequate level of support would have cost.

The result is that the system does not behave like a continuous array of supports to be tailored to the client's needs and preferences. It flows like lumpy oatmeal and people get involved in day programs they neither need nor want because the group home they didn't want to live in requires it. This is a costly problem that merits fixing for the sake of the budget if not for the sake of the clients.

Choice and choices, Part I

One of the great interruptions in the quality of lives of people with developmental disabilities, and a barrier to the efficiency of the system is the frequent failure to provide services on a continuous spectrum. The initial concept behind the Individual Program Plans (IPPs) is to assess the needs of the client in order to provide exactly what is needed to mediate the effects of the disability and provide for a meaningful life in the community. It's been widely agreed that the IPP is the central administrative and regulatory event in the provision of services in California's Developmental Disability System.

The IPP is designed to take into account the nuances that every individual brings to their own assistance. The client is expected to be both the central object and leading subject in the development of their own plan. The IPP carries every aspiration that well-meaning people have for useful service and every hope the taxpayers have for an efficient system.

Once the IPP is complete, however, the plan typically loses most of it's meaning as Service Coordinators try to allocate the meaning from the client's plan into vendor codes. Vendor codes represent modes of providing services and allow the delivery system to be regulated according to function. Most Regional Centers, often influenced by their vendor community and to a lesser extent, their clients, typically establish Purchase of Service policies (POS) based on restrictions on who can receive services from which vendor type under what circumstances and to what extent. This system offers efficiencies for the administration of a Regional Center but is just as clearly inefficient for the support of people with disabilities.

The processing of needs into codes might not be fatal where the understanding is, as it is in law, that the POS standards are guidelines for arranging things of lesser status than the POS. Essentially, the deal statute makes with the Regional Centers is: Set up your POS policies and if you can meet the client's needs within them great and if not, you must exempt the client from the policy. That's not the deal typically made between Regional Centers and clients which can often be summarized as I understand that's what you need, let me see what I got. I'll look at the POS policies.

Vendor codes makes sense to me. To assure minimum quality standards, it is necessary to regulate agencies and the vendor codes allow that to be done appropriately for broad categories of modes of service. For example, it is generally inappropriate to have three ILS clients being served by one staffperson at a time whereas at a site based program, the minimum appropriate ratio might be higher than that.

But given that services are placed in broad categories, keeping faith with clients and their IPPs requires that these categories be understood as ranges on a continuum not as separate and distinct modes. Seeking to fulfill a client-centered IPP with vendor-centered service purchasing betrays choice by limiting choices.

What's the matter with the Self-Directed Services Program, Part II

A continuation of the second-guessing from the previous post, this series is meant to be commentary on the response to SDS rather than an analysis of the program proposal. Today's scolding: The proper usage of the word "voluntary."

An apparent disconnect between direct policy-makers and the community comes from differences between how the first group uses the term "voluntary" and how the second group hears it. On CDCAN townhall telemeetings, there has been frequent use of the term which seems not to be convincing a lot of the community.

To the direct policymakers, the fact that the program is voluntary means it doesn't have to work for everybody. To the community, there seems to be a sense that "voluntary" means the program needs only to work for the people DDS likes best. The difference was clearest on two recent conference calls when people described the pilot project participants as pioneers and others referred to the same group, essentially, as the anointed. The difference reflects something that I believe I have also detected, that there has been a broad, community-based but group of fierce advocates with strong values that believes itself to own this program and a far broader group with a strong interest in SDS that feels unincluded. The truth is, it is easy for government to find anointed pioneers and hard to find most of the others for whom this program should also be designed.

Nonetheless, this program is emblematic of how the State sees our community, and offers the kind of reform that break the cycle of a system growing more expensive and less successful. The failure of SDS to be implemented will break a lot of hearts, but it's failure to succeed broadly once implemented carries more tragedy. The voluntary nature of SDS justifies the a trade of rigidity (budget formula) for new choices. It remains important that the program be designed as robustly as possible whether it's voluntary or mandatory.

What's the matter with the Self-Directed Services Program

The self-directed services (SDS) proposal been developed simultaneously by the administration and the legislature is encountering resistance bewildering in light of the almost universal wish for SDS. Notwithstanding that I've written about this a couple months ago, I thought millions of people probably would like an update on my thinking, hence this post. Following is my interperetation of the resistance to the current SDS proposals.

First of all, our community is by and large suspicious of anything printed on DDS letterhead. I suspect giving the magnitude of change represented by SDS, some portion of the current concern would manifest. While I have suggested and am about to resuggest that DDS made mistakes in the development of this proposal, a perfect draft would not have met hosannas. I think the response is fair in light of history, but probably not fair to the current proposal.

A second source of worry in the community has to be a fear for the programs which frequently serve clients in the current delivery system and are unlikely to serve clients, regardless of the final language. Many of these programs are barely surviving now and even if SDS only enrolls 5% of California's people with developmental disabilities many agencies are rightly threatened with a change or die crisis. Not only entrenched professionals but people who benefit from those agencies are rightly concerned about SDS.

That said, there are a few almost bewildering elements of the proposal which keep coming up in community fora like the 6 (to-date) CDCAN teleconferences, meetings at Regional Centers and other public events where this topic comes up. Good things to fix, if this proposal is going to find the acclaim many of us expected. These changes are more than political and more than cosmetic, many of us want SDS to succeed, not just pass.

The clearest of these is the foggy funding proposal. Althought the program is voluntary and people are free to leave if they don't like their budgets, it is very hard have faith in a capped budget based on factors that are aren't available. It would be very helpful if DDS would develop and publish their formula, bearing in mind that there is no reasonable formula which won't bring out some of the torches and pitchforks.

To me, the most infuriating source of concern (but far from the most important) is the (softening) language that forbids SDS participants from using congregate (group) programs. This does not infuriate because I advocate for, use or provide these types of services my family and I don't. It infuriates me for these reasons:
1. This program is primarily about choice, and significant choice is being obstructed because of the (noble) values of the DDS and regional center employees and pilot project participants. This program doesn't belong to anyone except ALL people served by this system who think they can provide better for themselves at lower cost than their service coordinator can.
2. The exclusive language makes the overall proposal needlessly more complex than it already is, insuring extra unintended consequences.
3. The exclusion, which is unnatural to the purpose and generates extra risk to participation, also provides a target for those few who don't want SDS to happen. Politically, it just doesn't make sense.
4. It fails to account for the lives many clients lead. There are a significant number of clients who can benefit from SDS who will with considerable risk and, therefore instability. Several ¡Arriba! clients are capable of living well for years in their own homes but periodically encounter challenges that require them to spend short terms under more intensive care or monitoring. These clients could be well-served under SDS simply by not hindering them.
5. Finally, it's unnecessary, dammit. Phil Bonnet, the admired Executive Director of one of the pilot project regional centers recently said that of the 120 or so pilot participants none chose to spend SDS funds on congregate services. SDS is likely to satisfy the thirst for more included lives with no regulatory help. Of course, that's the bad news for those who are concerned for congregate agencies. It'll still be change or die time.

Aaah. I'm a little vented. To be continued. For now, let's just say that publishing a budget formula and deleting all language that exists in order to promote inclusion would improve the proposal itself as well as its reception.

A New Day- Summary

So, here are some reflections on the ARCA conference, starting with an overview (The previous 8 posts are notes from specific sessions:)

The conference was timely, and the content excellent and diverse in terms of the perspectives of experts from around (mostly outside) our system. Asking Peggy Collins to present a legislative perspective while Kim Rucker presented a client perspective on the same panel was especially inspired and made for an interesting contrast comparison with presenters from outside our system. That panel really clarified both the relevance of nationwide thinking and the criticality of local experience and perception. Julie Jackson did a terrific job in what may have been her public debut as Chief Deputy Director and I overheard many comments from my fellow wee folk reflecting that they looked forward to openness and/or honesty as characteristics that Julie brings to her new position.

So for all of those reasons, Kudos to ARCA and its conference committee for focussing on an important and actionable topic, and for recognizing well voices that our community needs to hear from.

On the other hand, my impression is that some opportunity was let go for now. Disappointments include the fact that so little dialogue was allowed by a dense schedule of presentations. Also, people with disabilities, their families, direct-care staff and service providers were highly underrepresented. There's an unmistakeable irony that the whole point of the conference was that currently available supports are overly prescriptive, unnecessarily limiting and unfairly unaccountable while the conference itself seemed organized around the principle that our community ails from not listening to the grown-ups. Did anyone get a conference evaluation form?

If anyone missed the irony, as I mentioned before, the lunchtime speakers on Tuesday described a perspective that the system is lazy, greedy, uncreative and divisive and that the responsibility of the Regional Centers for this state of affairs is in being overly tolerant. Those speeches also communicated pretty effectively that at least the speakers are contentedly out-of-touch with the community.

To the extent that the two RC directors at that session were intended to represent their peers (and the context suggests that they were) a lot of people will have found support for the idea that the Regional Centers are essentially arrogant and aloof. Many people who have been working for years to better serve clients will conclude that the purpose of the conference was to usurp their effort. As unfair and generally untrue as those messages are, they sure were sent.

A message for those who need it. Just over a year ago, the California Disability Community Action Network began successfully to connect people from this community to speak for themselves. The community has demonstrated that it can speak. About a week ago, the Vendor Advisory Committee of East Los Angeles Regional Center unanimously passed a resolution communicating to the board its willingness for and interest in eliminating barriers to person-centered supports. Countless other events sponsored or led by vendors, people with disabilities, family members and worker organizations sought to innovate the system towards a more reflective, responsive and cost-effective system. Generally, one aspect of these conversations and this conference has been the sense of each group that it is leading while everyone else stands around vainly defending the status quo and their own empires.

This conference was important, valuable and in many ways reflects the intelligence and determination of its organizers. It was an important milestone but the start of nothing. The events which recognize the unity of the entire community around an evolving, improving system; and which elevates dialogue above presentation will be the true dawn.

A newish Day: The tailspin

We just had the lunch session. On the positive side- the caesar salad, poppyseed rolls, chicken with shrimp and cheesecake were alright.

On the negative side, the speeches were sibgularly (or doubly.) The speeches were extroardinarily patronizing and, in my mind, prove how far some leaders are from listening. Our whole community is the choir, and they were preaching the fire that awaits.

They may be right about what's happening and they are right about why, they're also part of the problem with the rest of us. The people who don't want change and who want to portray regional centers as the barriers to change can quote liberally from those two speeches. They also might point out how limited the opportunities were for input. If we're going to put petty grievances with each other aside then listening to one another, allowing each other as partners and believing in each other are fine places to start. Patronizing, dismissing and talking over are not.

If either speaker had been paying attention, they couldn't have spoken from the perspective on display today.

My review: Safe harbor was granted at lunch to those who oppose change and those who seek change were marginalized. I give it an F. 

P.S. I haven't seen any conference evaluation forms. For all the good content, it's pretty clear that input and dialogue were not planned outcomes of this conference. At least not at the conference.

A New Day- The Prequel

Next week, the Association of Regional Center Agencies (ARCA- for definition of a Regional Center see the archive, July-ish) will hold a two-day conference on non-traditional supports for people with developmental disabilities. It's pretty hard to tell whether or not the conference has changed since it was about more inclusive day programs or whether the language was broadened. It's good to see Regional Centers engaging new ways of doing things as a group, and I applaud at least the purpose. I'm hopeful that this will be a useful, constructive, maybe transformational event. Not suprisingly, I'm a little cynical as well.

The first red-flag is the density of the programming. I think there will be dignitaries giving plenary speeches and sitting on panels for about 15 of the 16 hours. The content seems built around the idea that most people don't know what to do, but once told, might obey. That is the paradigm for dialogue in our system and it's more pervasive than good well or, even, disability. My hope that this event has value apart from the Super Bowl party on Sunday is pretty much pinned on the idea that the panelists in the workshops have been given a 4-minute time limit.

The unrecognized reality is that nearly our entire system (based on my five-year sample of people I talk to) agree about how the system should serve its clients. Every State bureaucrat, Regional Center bureaucrat, Vendor Bureaucrat, parent, client and demagogue involved agrees that the system should be more client-centered, customized and responsive. Pretty much all of us are trying. Most of us are somehow a great deal smarter and more innovative than the conversations we have together. Most of us have more insight than the experts we bring in to explain things to each other.

So the hope is that we can mark a change in tone from next week. More of the soul-crushing same is too painful to imagine but exactly what the conference agenda suggests.

Here's what I hope, though- The Monday morning dignitaries point out that the system's been talking and writing its brochures along these lines for a long time. If the system hasn't delivered everytime, or most of the time, or often enough to mention- it's probably because there are systemic barriers to the transormation. Not a lack of will or a lack of intelligence, just stuff in the way. I bet if we started to talk about where each of us (the not experts) encounter the barriers, we could really start to change things.