Developmental Disability System Reform

Information and Rumination about changes to California's community-based system for people with developmental disabilities.

Tuesday, November 17, 2009

The (Draft) Ten Guiding Principles for the ICBM

At the request of Anonymous, here is the draft I received as the "ten guiding principles for the Individual Choice Bugeting Model Process." (ICBM) I am typing this all in so I expect Anonymous gratitude.

  • Reduces overall state General Fund costs.
  • Increases fairness, equity, and transparency in the allocation of resources.
  • Accounts for geographical cost differences.
  • To the extent possible, relies on existing state data systems and assessment processes.
  • Accommodates individuals with exceptional or unique care needs and their associated purchase-of-service costs.
  • Easy and efficient to administer for consumers, families and regional center personnel.
  • Does not jeopardize individual's health, safety and/or well-being.
  • Does not impose any unfunded mandates on participants, providers or regional centers.
  • Promotes individuals' ability to achieve and maintain living arrangements and work in the least restrictive settings.
  • To the extent possible, can be implemented within existing resources.

A few things I would note. First, just to cushion the sarcasm to follow, I'll just say that I don't disagree with anything listed and I don't mean to criticize the author(s) in particular.

With that said, I think it is less important what the principles are than that there are ten. This is clearly a document of good intentions, more than a design plan. It is also worth noting that with a maybe exception for the third principle, these are all principles designed into the traditional system as well. On the one hand, you can consider ICBM a useful attempt to try again. On the other hand, there is nothing in these principles to provide for anyone's optimism.

The last thing I'd point out is that nothing here refers to using unvendored supports, decreasing the involvement of the regional center or either providing relief from or adding to the current, expensive and unimpressively accountable regulatory system. So the pessimists I call my brothers and sisters and inanimate or ungendered kin can rightly justify a jaundiced expectation. If ICBM does constitute some sort of constructive reform, that feature will have been added later.

**Addendum**
A couple of bonus thoughts at no additional charge: One is that the "unfunded mandates" line is interesting given that Counties and IHSS workers are running around buying fingerprint scans willy-nilly and typically at the expense of the provider. I wonder if this line exists in order to specifically lay to rest fears along those lines or whether the author intends it as comforting boilerplate.

Also, the fact that this is a draft of principles and was presented as current in November should maybe suggest to the providers of suspended services to consider other lines of work. If this represents the extent of the work, and it may not, that doesn't promise much in the way of quick development or expeditious deployment.

**Duodendum**

I recently received a note that DDS did not produce the document quoted above and cited below. This might be good news, as we can hope that the actual development process is further along than it seemed and may also be less obvious. The bad news is that most of what I have written in the two posts now seems frivolous and mean. Well, sort of bad and not at all news, but I do repent of the error.

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Wednesday, November 11, 2009

ICBM outgoing

Last week, I received a copy of the draft of 10 guiding principles for the new Individual Choice Budget Model. A few things I'd note. The first is that after several months there is a draft version of 10 guiding principles for the new Individual Choice Budget Model. That right there is discouraging. The second is that the 10 principles look so thoroughly rhetorical. Protect safety, ensure choice, save the state money. Good ideas, all, and I offer this blog as a pretty good proxy for what five years of work along these lines will probably look like.

The rub is you can't really root against them because there are clients and vendors being held hostage until the ICBM is certified by the Director of DDS to have been implemented and to be saving the state money. My modest proposal, submit this blog as the complete implementation of the model and certify that you're saving money by canceling the development.

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Tuesday, October 06, 2009

A fair hearing for fair hearings

So, there seem to be vendors in LA County who know that I recently made the executive director of a local regional center angry with a needlessly hostile description of regional center habits vis-a-vis the termination or reduction of services without the prescribed ID team meeting or notification of fair hearing rights. Regarding the degree I exaggerated (I might have said service coordinators never follow the regulations in this situation,) I feel comfortable that I was within the statistical margin of error. Regarding the degree to which my tone was needlessly hostile amid a very strained effort to pull the community together in the best interest of all, I do repent (and did apologize.)

But, while running your mouth foolishly is a terrible pedagogical technique, I mights use the event to talk about the difference between how I, as a vendor, view the fair hearing (and aid pending) laws, which I believe is sharply different from the way regional center personnel hear vendors talk about those laws. Consider this my effort to follow the aforementioned executive director's lead and deepen the partnership between two segments of the community that often don't collaborate or communicate well in good times and have particular need of each other now.

In my experience, by far the commonest way that our services are terminated or reduced begins with a phone call from the service coordinator to the vendor agency. Friends who run agencies throughout the state assure me this is their experience, as well. The client is often left out of the process entirely, even though state be provided a team meeting in which they are to be the leader. At that meeting, if the client does not agree to service termination or reduction of reduction of services both state and federal (for Medical waiver enrollees) law require that they are to be provided notice of their right to appeal, their right to support for the appeal, and their right to continue their service as currently provided until the appeal is resolved, if they choose to appeal. I won't say again that this protocol is never followed, but I will say again that this protocol is rarely followed unless a vendor insists that it be followed.

However, the law is clear, plain and theoretically binding. When someone calls the office or an ¡Arriba! supervisor to say that "I am cutting" or "I have to cut" or "these new regulations require that I cut" services, we are all trained to remind them of the regulations which apply to that process. The result is almost always an ID team meeting at which the SC explains to the client the reason for the cut, the staff make sure the client understands what is being done and, most importantly, the client has the opportunity to review what is proposed, consider what the price will be and then the ID team can work together to look for solutions if the transition will create important problems.

The value of the hearing rights is not necessarily in the hearings themselves. More often, the value comes from the ID team everybody felt too busy to sit in on until it was required. ¡Arriba! staff are forbidden from encouraging clients to appeal, unless the client first states that they are uncomfortable with the change. I have been director of this agency for nine years and to the best of my recollection, our clients have had informal hearings maybe three or four times and formal hearings zero times. But many times, clients have had productive ID team meetings as a consequence of the threat of an appeal. While we are all looking to thoughtfully make the best solutions for our budget problems, I would argue that the ID team meetings will be crucial.

As long as the best way to get a thoughtful, collaborative meeting remains the threat of an appeal, vendors should remain vigilant about insisting on those rights. (Plus, they are, you know, rights.) While a regional center employee might receive reminders of the regulations as antagonistic, from this vendor's perspective, we insist on them for collaborative purposes.

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Thursday, September 03, 2009

Praise Where It's Due

I have been critical on this site (and most places I've bothered to write or speak) of our legislators' lack of curiosity regarding the outcomes of the program they fund with taxpayer money. So I have to give credit to Assemblymember Hector Delatorre of Southgate. The commentary below and decision to audit the system represent a surprisingly thoughtful first step on a long road toward capable legislative oversight of DDS.

Given that a letter from vendors was cited as a reason for the audit, you can imagine why whistle-blower protection plays such a big role in Delatorre's presentation. That wouldn't have been on my list of first topics, particularly because client confidentiality and the vagaries of client choice make proof of retaliation unlikely even upon granting whistleblower immunity. Whistleblower protection could be a useful cog in some future accountability machine, and any of you who read this blog frequently know how I feel about accountability. Still, only a vendor could think this was the best beginning.

But I have to say, I was impressed by Delatorre's grasp of the subtler point that regional centers function as much as government agencies as they do as non-profit public benefit organizations. That isn't as obvious as it is true and the Assemblyman brings up points in the video below I had certainly never thought of. This issue has a stomach-turning potential to turn out in strange ways if explored in depth, and many of those ways might be sort of sinister. But I'm going to guess that restructuring the system away from regional centers or absorbing them into the apparatus of the state is far far beyond anything the legislature will be ready to handle soon.

I'll confess I'm a little concerned about the feedback the audit will receive. If the audit committee were auditing the vendor community, quite a bit of the feedback from other stakeholders would surely be scathing and some of that unfair. In this case, the same is likely to be true. People like to come forward with a complaint. Sycophancy is also a risk.

At some later point, I might write something about opportunities and risks that loom behind this survey. But, for now, kudos to the assemblymember for taking an interest in our system.

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Monday, August 31, 2009

Mr. Manners and five budget cutting taboos

The following is my first ever attempt to opine on good manners but, clearly, we need a new post up and this is what I got.

Brother Doug's Behavioral Tip for DDS:
When Regional Centers are wrong, be strong. In the past, Regional Centers have acted variously with regard to the need to cut costs. Some have been consultative and careful. Others have behaved as stupidly, precipitously and imperiously as a rabid whippet in a fox' den. On those occasions, DDS (as well as Disability Rights California) have been worse than useful so far as I can tell. I can only assume DDS allows regional centers their heads (wooden and otherwise) based on the idea that nobody comes willingly to cuts and other stakeholders will be fractious and unwilling in any case. I think this is a mistake.

When Westside Regional Center came out with their (dismal) expenditure plan years ago, many of the elements were clearly in violation of trailer bill language. Nonetheless, DDS was publicly supportive and despite that support, the community was fractious and rebellious and it took months for any POS behavior to change. As a counter-example, San Gabriel/Pomona Regional Center got upstream of some cuts by making them collaboratively in a forward looking way. Of course there are some yet to make, but I would wager that by working with the community, some spending reductions are already realizing savings and have done so since May without much rebellion and, so far as I am aware, any needless loss of life and welfare (as I was sorry to witness when FDLRC made it's expenditure plan without resistance.) Any strength DDS shows in preventing regional centers from too much expedition is likely to be rewarded with client welfare and more savings.

Dom Douglas's Tips for Regional Centers: Get in the habit of respecting the rights of clients and what wisdom there is in vendors and family members. As above (and in the post below) the imperious, expeditious management style is likely to be expensive, inefficient and produce needlessly sorrowful outcomes. I know most if not all of you think that all clients and vendors do with cuts is complain and resist. As a vendor and a family member, I would that we're only bumptious when laws that don't exist are given as reasons for things we hope to avoid. Generally, the community understands why there are cuts but we want them implemented as thoughtfully as possible. Most regional centers have never tested experimentally what would happen if a collaborative, person-centered approach were taken. Most other stakeholders have an evidence basis to doubt that pushy regional centers will do much well or right. Now is a good time to learn collaboration together.

Cousin Doug's epistle to other regional center vendors: To the degree that Regional Centers will work with us, the clients will listen to us and the DDS will defend, act also in good faith. It is not our place to provoke clients and antagonize service coordinators who have reached a mutually successful agreement. Those clients who need our help defending needed supports continue to have the right to a fair hearing. We will make much better advocates for those clients that need defending if we don't try to create clients who want defending. It will be harder for our detractors to accuse us of refusing to give up units of service if we show discretion and good taste. This year will stink financially for direct care providers and their bosses more than anyone else in the system, but the system doesn't owe us a living, either.

Ole' Doug's advice to clients and their families: Understand that everyone supporting you is under stress. This doesn't require apology, gratitude or certainly not the stifling of grievances (we need grievances expressed now more than ever.) But remember that however foolish, selfish, useless, youthful, greedy, controlling or impenetrable the professionals around you might be by nature, there are forces pressing us to be worse. If our behavior were personal, it would be much better.

To my friends in the chamber of commerce: Ironically, the most expensive ways we do things tend to be the least integrative of people into the community. The best ways we can implement our budget cuts for fiscal purposes and/or to preserve the value of the system will be for you all to see more of us. Take this opportunity to make new friends, employees and customers.

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Tuesday, August 04, 2009

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.

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Tuesday, July 14, 2009

Serving Stanley for Free

In the comments for the previous post, Stanley asked:
"Thanks for providing specific provider details...hate to push one so willing to provide such information...butbut wondering how do rates compare with actual cost of providing quality programs...do rates paid by RC cover all cost of providing quality support...are all IPP needs/goals covered by rates.

Questions arise based on process used to determine cost of providing support for my daughter...eg/ie, agency gave RC cost to provide support...RC either approved or denied these cost...I do not recall any mention of what rate would apply...there was no discussion of an agency who could provide same support for less...did such an agency exist...how does one quantify/equate lower rate and program quality.

And among many things I have not seen is a list of state-set rates...there seems to be a disconnect between rates, cuts and cost...also

How do cuts effect Lanterman entitlements...ie/eg, Though DDS wrote that it will maintain the entitlement of the Lanterman Act, it simultaneously wrote that it would mitigate the expenses associated with the growth in population?"
Here are some thoughts, I invite readers to add their own:

1) I am absolutely certain that rates and quality are not perfectly or even well correlated. There are a lot of things that cost money to do badly and are free if you do them well. Just as a quick example, with individualized services, there is always a tension between management's idea of how those services should be provided and the end user's. There is always a fiduciary concern that the client's money be spent appropriately pitted against the client's interest in having their money spent according to their wishes in a timely fashion. An agency can spend a lot of money imposing the management's interest while many clients provide their own vision for free. This is just a theory, but I have long suspected that leaner individualized supports are probably much more person-centered supports.

To agencies like ¡Arriba!, fairly lean individualized providers, the most important benefit from better funding is staff retention. But if management is injudicious or unwise in who gets retained, as I confess to having been on a few occasions, then quality doesn't benefit. Good funding can allow management to be too comfortable trusting staff and allow people who could more productively do something else stick around longer. So better rates can improve or erode quality, depending on the willingness of managers, staff and clients to make difficult decisions before making payroll becomes a maybe thing.

A few cautions, though: A lean, quality-focused, person-centered agency most likely will see quality go up and down as rates do. I guess my answer to that part of the question is that the impact of budget cuts on accessibility is more obvious than the impact on quality. Another caution is I know even less than DDS and the regional centers what the factors of quality in a congregate support are. It may be that as services become more intentionally programmatic, standardized and institutional that funding per unit of service has a simpler and more positive correlation with quality.

2) The connection between rates and the IPP is obvious if you are talking about SLS or the total Regional Center POS budget. Otherwise, the IPP is purchased by buying units of service that may not be through the same vendor code or agency. At ¡Arriba!, for example, we can support every part of a client's IPP at our new, lower rate but the cost goes up because we have to add hours of service for each goal we work on with a client. I understand that for SLS clients and SDS clients the "rate" is a composite of costs pursuing different parts of the IPP so it would surprise me if an SLS provider could say yes in answer to your question. I can, though, provided I am given enough authorized hours to juggle it all.

Obviously, if the POS budget is capped this year (but exists) then some IPPs will have to get less ambitious. That might even be a good thing if we could trust people to prioritize wisely and thoughtfully. If anyone reads this and trust that IPPs will diminish wisely and thoughtfully, please let me know in the comments. I'd sure like to hear it.

As to your comment about the disconnect you perceive between rates, costs and cuts- I can only agree. It's madness. A herd of cows would design a more rational system. A pack of wolves would design a more honest one. A cabal of cannibals would design a more defensible one.

**Update** Through the good offices of a good friend, Stanley, here is the list of rates and rate-setting mechanisms:

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