Other closures

Much has been made of the pending closure of Lanterman Developmental Center, and it would be to our detriment to ignore the impact of the planned closure of Lanterman Regional Center. According to DDS Director, Teri Delgadillo, Lanterman is being closed and merged with Harbor and Westside regional centers to save money. As Ms. Delgadillo says in her statement, "The administration considers these three regional centers, which have already harmonized their service coordination process to the degree that client expectations have been regionalized. Furthermore, by pooling staff, the combined regional center will have the capacity to say 'no' in more than 80 languages."

"We certainly defer," Director Delgadillo continued, "to the combined 80-person board of the merged center in terms of naming the new facility and appointing management. But DDS personnel are recommending 'Richard Riordan Regional Center,' because we enjoy the sense of whimsy that alliteration brings."

Walt Disney Regional Center, which will be created from the merger of South Central and Orange Country RCs will have the capacity to say "please" and "thank you" in more than 30 languages and on legal pleadings.

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.

A note about position papers

I read the ARCA position paper today, and will just call it a proxy for all the others out there in order to save time. When the state has an unsustainable budget and the legislature has shown itself unable to think or act and you release a paper announcing your opposition to most of the cuts, the intended audience is fellow stakeholders not government.  Kind of like the guy who raises his hand in class because he wants the attention of a classmate. Very thorough, although they seem to have left out their position on cuts to DDS headquarters. Can anyone tell me what else is missing?

How to have self esteem when you're a DD service provider

I may be, as a social services chief executive, a member of a despised class rightly suspected of promoting unaccountable, dishonorable and inefficient expenditures.

I may be, as an advocate, a typical charlatan using blubbery words to ask my neighbors to place my interests above their own.

I may be, as a blogger, the tea-totaling equivalent of that obnoxious souse at the bar holding forth on matters beyond his ken as if an alcoholic haze were a worthy substitute for any actual knowledge.

I may be scandalous, stupid and self-important, lazy, long-winded and loveless but I am not a California legislator, Alhamdulillah!

The opportunity for Democrats and Republicans to demonstrate their commitment to principles has passed and it passed with no creditable gestures toward principle.

The opportunity to hammer out a smarter, leaner or more compassionate and just budget passed with no apparent fervor for smartness, leanness, compassion or social justice.  

It is time for the legislators to stop pointing at one another. It is time to vote for a flawed, inefficient, stupid budget because this year's budget has gestated too long not to resemble its parents.

Selah

P.S.  The above was provoked by an email sent by State Senator Dutton to supporters sharing Pete Wilson's criticism of Schwarzenegger's budget plan.  In all likelihood, all of his colleagues in both houses are sending similarly sanctimonious and second-hand commentary to supporters (more and more loosely defined.)  As a supporter, I wanted to explain the following:

Drug dealers may be predators, but they perform.

Government contractors may be parasites, but they are humble.

Undocumented workers may be illegal, but they do what they are paid to do.

People with severe enough disabilities may not be as economically productive as their non-disabled peers, but many accept wages in consideration of output.

In short, there is nobody in this state that any member of our legislature might wish to punish, prosecute or patronize who is not a better public servant until a budget is presented the governor.  Until then, criticize no one.  

Cynical Reform

I haven't posted in a spell and a new friend asked me today about whether I thought reform worked better from within or from without. Aristotle, Muhammed, John Huss, Martin Luther, Jean Paul Rousseau and Benjamin Franklin all have given us wise counsel on this very question, which, not being smart, I won't bother to include.

Being a dog-fancier, though, I think it is useful to consider the 4th Century B.C. Philosopher, Diogenes, the Cynic. The word Cynic originally meant dog. The reform Diogenes followed and taught was to live as a dog lives, unashamed of ones habits and desires and at once self-indulgent and propertyless. When Alexander The Great offered Diogenes to give him any gift the philosopher asked, Diogenes asked the conqueror of the known world to step out of Diogenes' sunlight.

What does this have to do with reform being more effective internally or externally? Diogenes of Sinope sought to change his environment by concentrating on his appetites, nourishing those consistent with living and disregarding those he saw as distractions. He became wealthy by changing his standard of well-being. All reforms begin by choosing the right appetite.

So we in this system, when we are near to home complain about choices made for us, the frustration of our own will by others and the impositions of other emperors on our daily activities. I would contend that the central appetite of the system is for autonomy, that the enemy of autonomy is sovereignty and that the chief distracting appetite is for funding.

So, this cynic, would propose that the first reform to be attempted is to stop worrying about funding, refrain from trying to command the neighbor and concentrate on cynical choices. Then we can get to reliable, person-centered outcome data.

This, by the way, is what happens when you post because you haven't posted in a while. Silence has its own muses.

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.

The Second Semi-Annual New Day, Summary

On the whole, the conference was as I expected, although the session entitled "What do I do now that I'm out of High School?" was constructive. It covered a project working within colleges to integrate people with developmental disabilities. It's not clear how truly integrative the project has been but the outcomes they tracked demonstrate that the project seems beneficial. If the consortium working on that project presses, improves and changes, integration might grow within it.

For those who asked why I listed Limericist as my title, I answer:

When you preach to the choir from the dais
Always make sure what you say is
What they want to hear
Or at least as near
As you can so you don't end up payless.

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.

Self-Direction, Finale (for now)

Well, I'm getting bored of this topic. Sure hope no-one's reading it. The final point I wanted to make on self-direction is that pilot projects notwithstanding, much of the benefit will follow a learning curve. As a result, participants and stakeholders should not be discouraged if the new system is underwhelming. It's one thing to give a person control over their choices, which will be the first step, but another to have new choices. As new people learn to be of service, agencies learn to be more of service and efficiencies are discovered, the promise of self-determination will be fulfilled.

Self-Direction, Episode III

First of all, Happy New Year to everyone. May this year be one of strength, growth and learning for us all.

Now to the third major issue that concerns me (and, apparently Catgirl) regarding self-direction. With self-directed services there come a host of new opportunities for the abuse of people with developmental disabilities. This isn't fear-mongering. It happens already with In-Home Supportive Services. Family-members, friends, significant others find that the person with the disabilities has access to state funds that they can direct and persuade, trick, intimidate or convince that person to fund them for work that doesn't get done. I've seen it, Catgirl seems to have seen it.

It will happen with self-direction. The state will set aside resources to support people with disabilities to prepare for work, remain healthy, live independently, and otherwise mitigate the effects of the disability. Then, a parent, a cousin, neighbor etcetera will persuade the individual to turn the money over and neglect the individual. This will by no means happen in every case, I hope it will be rare. The State has a responsibility both to the taxpayer and individuals with disabilities to make sure it's rare.

The key will be monitoring and intervention which are reliable and sober and forceful enough that abuse feels risky to the would-be abusers. The new monitoring will need to be different from the current one (which needs to be different from itself) in the following ways:

1. The SD accountability system will need to be as much a law-enforcement system as a quality monitor. The current system is based on the enlightened self-interest of agencies that serve many clients. Using the current model, expressive, alert, and cared-for clients serve as a proxy for those less able to sound an alarm. Essentially, the monitoring I am subjected is fairly relaxed until someone alleges something that sounds like abuse or neglect. Then, the Regional Center will investigate that case and (presumably) if the allegation is substantiated will review other cases. If there is a pattern of abuse or neglect, the agency may lose enough business to go out of business. In a self-directed mode, many more of the service providers will be individuals with a pre-existing relationship with one individual whom they serve. Taking business away from someone who already isn't doing work isn't much incentive not to abuse or neglect. The threat of prison is a better one.

2. Outcomes will be more important. The current model already has trouble verifying billing for programs in which the time and location of services aren't fixed. In a self-directed services model, the possibility of verifying that services billed for were rendered becomes nearly hopeless since the units of service measurement, what constitutes service and what constitutes satisfactory work will be particular to the individual served. In its self-directed services model, the state should admit that the conditions a client experiences are crucial and that the arithmetic (units of service, etc.) will no longer be verifiable. Brokers and Fiscal Service Monitors should be empowered to focus on changes in the client's life to certify that bills should be paid. How you finess this with the Federal Waiver is an excellent question.

3. Monitoring must be more aggressive and at least occassionally intrusive. The family members of Regional Center clients who have pushed for this change are loving, devoted parents driven by a sense of urgency that their child be dignified, well-served and in control. As a consequence, I expect the familymembers pushing for this to feel angry or offended if, on the heels of this important victory for self-determination, people keep coming around with clipboards asking questions and judging whether the services being purchased are acceptably appropriate and successful. The problem is, the familymembers I meet at Self-determination conferences, community imperative meetings and advocacy events just aren't representative enough. Speaking for myself, and with my niece, nephew, brother and sister-in-law in mind, the idea of a person with disabilities isolated and ill-cared for while money flows from the state to resolve those problems is too much to give anyone carte blanche.

So, while we're calculating new levels of dignity, independence and a healthier fiscal environment from self-determination, I think we owe it to the most marginalized people, individuals with disabilities who miss even honest love from family and friends, that we deduct some independence for monitoring and some money for effective oversight. To me, this is a serious enough issue that as strongly as I support self-determination, I would just as fiercely oppose it without a system of monitoring and intervention worth relying on.

Contessa, Queen Anne, Dutchess Sherlene- Am I in trouble yet?

The Vendor's Song (Rising costs, fixed rates)

I just received a copy of a letter concerning yet another unfunded State mandate service providers to the clients of this system are faced with. The figuratively millions of people who read this site regularly know that I think higher rates aren't the solution to the problems of the system. Ron Cohen, Executive Director of United Cerebral Palsy of Los Angeles, Ventura and Santa Barbara Counties just reminded me why I may want to qualify that position.

There is, after all, a funding crisis for the agencies that serve people with developmental disabilities. Reimbursement rates are fixed and things keep happening at the policy-making level (worker's compensation costs, new administrative duties, new labor laws) that raise costs without improving outcomes. The strategy of incremental funding cuts alongside incremental increases in cost is approaching its natural conclusion. As Ron points out, at his agency, 1400 people losing homes and services is not far-off. Statewide, I'd be suprised if there weren't tens of thousands of people with disabilities so threatened. Ron's just a little more honest (and normally a lot funnier) than many of his peers.

Nothing will change my conviction that the pincipal problems needing reform in this aren't rates. Nonetheless, not reforming this system while allowing the funding to ebb is causing an unnecessary crisis for service providers and, consequently for clients. The need for reform is present and acute.

Rate reform

Aha! The third rail! Hold on, my zipper's stuck.

Rate reform means different things to different people but the following applies as a rule.

For vendors: Rate reform = getting more money for doing the same work for the same people.
For government folks: Rate reform = getting more of the same work for the same people for the same money. Quality is subjective anyhow.

I'm indifferent as to whether rate reform should raise the number of dollars coming into this system. I'm zealous, however that the irrelevance of support needed to funding provided needs to change. The failure is nearly total to correlate funding with the resources required to provide the right support, in the right amount, with sufficient quality to produce the outcomes that our clients seek and the State benefits from.

So, here's another primer. This time on how rates are currently set in this system.

There are really three methods of rate-setting. These are state-set rates, residential rates and negotiated rates.
In the most common (state-set) method as I understand it, a new agency receives a temporary rate which is the same for a given category of service regardless of where you are in the State (Inyokern rate=San Francisco rate.) The agency then functions for one year under that rate, fills out a statement explaining that agency's costs over that year and a new rate is assigned. Obviously, if you get the joke, in your first year as a program you spend every cent you're paid and lose as much money as you can afford to on whatever you can in order to produce as high a bill as possible at the end of your first year. The adjusted permanent rate circles over the agency forever, cawing to the great white whale that lurks in the deep. Once in a long while, the state adjusts the oldest rates and those older agencies go from the lowest rates to the highest.

So here's how various factors affect state-set rates, a few years after assignment:
Market value of qualified workers in an area: Irrelevant
Changes in worker's compensation insurance cost: Irrelevant
Cost of appropriate training and skill-building: Irrelevant
Administrative cost of regulatory compliance: Irrelevant
Quality of care provided: Irrelevant
Year Established: High correlation.

In negotiated rates, the agency predicts it's costs, tells the Regional Center what those will be, and then a process takes place leading to a contract to provide services at a given rate. According to the Legislative Analyst's Office, these rates increase at three times the rate of the state-set ones.

Residential rates, as I understand them (and I don't know that I do) works like the state-set rates but with a cost-of-living increase (suspended for several years now) so the correlation between real factors and rates would be like state-set with year of establishment being less relevant.

So the main factors in the level of funding that agencies receive for providing services are:
Whether they have been vendorized in a category in which the rate is state-set or negotiated and what year that vendorization took place. The individual needs and aspirations of the people this system serves, and measurable success in meeting those needs and reaching those aspirations are divorced, utterly, from the fiscal process and the financial incentives.

I don't mean to imply that this is unprecedented or poor incentive. Lots of California industries reward you for being young.

Another interesting trick of the state system is that rates apply to units of service performed not on deliverables. So, spending all day accomplishing nothing pays better than quick success.

When we talk about "rate reform" in this system, we talk about how people are compensated for the work they do, not about what the state is actually buying.

So, I'm thinking about rate reform and wondering whether the system couldn't get a little more cost-effective by:

Correlating rates with the outcomes sought, challenges presented and the likelihood of success and making level of accomplishment the unit the rates are paid to.

I'd bet on more effective services and lower costs if there were incentives to achieve either.

ZZZZZZZAAAAaaappp

The Problem with Providers

OK. I am a service provider, director of a regional center vendor agency. I confess. The concern regarding any reforms proposed by service providers, whether regional center vendors or regional centers themselves, is that our bright visions of the future tend to be better funded, less restricted versions of the present. The idea is almost always that if we were given the funds and the freedom to do what we now do for the people we now serve the lot of people with disabilities would improve.

This denies the central question about this system- are the people it serves getting the best possible most appropriate support. There's something anti-evolutionary about the premise that agencies need to thrive for people with developmental disabilities to do so. What about people who are poorly served, not only because of staff turnover or poor qualifications but also because the agencies serving them are philosophically unable to keep pace? I know that better wages for direct care staff would expedite the progress of clients. I suspect that the disappearance of some agencies would as well.

One question with no clear answer- could the elimination of underperforming agencies and their overhead free up enough resources to provide for better funding of well-performing agencies and a general improvement of the support people with disabillities receive? It is possible when you consider how many millions of dollars go to agency infrastructure and real estate that the closure of a few large site-based agencies could release significant funding back into the community. Whether or not that helps depends on whether the agencies do, and how much.

The purpose of reform needs to always be to sustain the progress being made by people with developmental disabilities. On the survival of service providers, even the service providers should be agnostic.

Regional Center Operations and System Reform

Today's topic: Things to think about when considering the Regional Center's role in our system, or, Why I have no friends in this world.

During California's lengthening budget debacle, the most common cost-containment proposals coming from vendor groups have advocated for reducing the size and scope of Regional Center operations. There are some important reasons that these proposals deserve a cautious response.

Primer paragraph: In California's community-based system of support to people with developmental disabilities, the legislature budgets funds to support the system which are allocated to the Department of Developmental Services (DDS.) DDS contracts with 21 private (more on "private" later) non-profit agencies, called Regional Centers (RCs) which have sole dominion for the provision of non-institutional services within a catchment area. The funding provided through those contracts is divided between Purchase of Service (POS) funds which must be spent on direct support through outside vendors and Operations which are intended to pay for those activities performed by Regional Center staff and which may be diverted to POS at the discretion of the Regional Center board. The primary roles of the Regional Centers are to identify eligible people, determine with the clients what supports are appropriate to the client's needs and aspirations, finding and purchasing those supports typically through vendors, and monitoring the quality of the support provided by vendors.

A few things all honest participants in this system can probably agree on:
1. All the activities Regional Centers are charged with are necessary.
2. The quality and effectiveness of Regional Center performance varies greatly between Regional Centers
3. There is probably an efficient formula for how much effort is spent on each Regional Center activity but no-one knows how to find it. Many of the formulas used are defined in statute.
4. Methods and policies employed at Regional Centers are of varying effectiveness, but there is no standard to distinguish success from failure within a frighteningly broad range. Also failure to budget accurately is the only failure likely to trigger oversight.

A few opinions I'll add with honest intent and questionable intellect and little expectation of conscensus:
1. Reasonable people may disagree as to whether all the activities Regional Centers are charged with should be done at Regional Centers, There may be economies of scale combining some activities between RCs but there are probably synergies (for example between quality assurance and service coordinators) that add value in keeping these activities together. Any proposal to change the functional makeup of Regional Centers should receive a whole lot of scrutiny.
2. The quality and effectiveness of Regional Centers' performance hardly varies at all over time. In my experience, badly run RCs stay bad and well-run ones tend to stay good. If I were going to propose Regional Center reform, I think this would be the most compelling fact.
3. The problem with any RC operations reform is that we don't track outcomes in our system. There is no basis, therefore, to improve staffing formulas. Smaller caseload ratios in service coordination could, for example, theoretically save money by reducing the purchases of chronically unsuccessful support or providing for more effective matching. It's highly likely that the right formula is different for rural RCs than it is for urban ones.
4. In my opinion, much of the proposals we've seen for reforming Regional Center operations reflect a lot of frustration with individual Regional Centers, how their responsibilities are discharged and the overwhelming difficulty (within the margin of error from impossibility) of changing Regional Center behavior.
5. I may be crazy, but the idea self-perpetuating boards overseeing public entitlements seems kind of goofy and pretty suspect.

Based on all of the above, I would be reluctant to support changes in what Regional Centers are meant to do or staffed for. Nonetheless, the frustration of clients, their families and vendors working with many Regional Centers is awfully well justified. Even the best Regional Centers are better at contract enforcement than determining program quality and its rare that they do well at informing families of options. Laws are regularly flouted at the worst regional centers. The entities charged with Regional Center oversight rarely act aggressively and appear fairly powerless.

The fact that many Regional Centers function badly doesn't call into question the value of those functions they do badly. On the contrary, the frustration throngs of us share at chronic failures proves the value of those activities. The best correction will be to amend the uncorrectability of these agencies. History found feudalism unsustainable. That duly elected officials have restored it for people with disabilities would make a cute irony if it weren't so wrong.