Two bills.

There are two bills we are supposed to be talking about, AB 2424 (Beall) and AB 1192 (Evans.)  Both seem simultaneously well-intended and not helpful but I'm open to having explained to me why the bills are either diabolical or useful.

To summarize briefly, AB 2424 is a wide-ranging 30+ page concoction meant to implement for especially transition-age children with developmental disabilities some of the recommendations of the SB 1270 hearings. Long legislation makes my head swim a little and I definitely need a second or seventh reading but one thing jumps out at me immediately: The law puts a lot of mandates on regional centers to, for instance, do timely IPPs and to have a bias towards work in an integrated setting. We've discussed before here whether or not that bias is appropriate but what is troubling me is that there are already IPP-related mandates that are complied with, if not never, within the statistical margin of error of never. Fair Hearing rights would be one example.  

Until there is some evidence that the legislature controls the executive branch and DDS can and does require compliance with regulations from regional centers, any legislative input into the IPP process seems either pointless or cruel.  To put in the funding contract language requiring compliance is entirely pointless without monitoring and enforcement, which is why no DDS client has ever (with a confidence interval of p=95%) heard of their fair hearing rights unless they were themselves intrepid researchers or were assisted by a wise parent or craven vendor.

AB 1192, which I have also heard referred to as AB 1983 (maybe a pet name) is similarly clearly well-meant and otherwise baffling.  This bill will require establishment of an abuse registry, require that service providers consult said registry and forbid service providers from hiring people listed.  Like the pursuit of integrated employment opportunities, the rationale is unassailable.  I imagine every other ED, like me, loses more sleep over the prospect of employing an abuser than over funding which is otherwise everything we love.  What I can't figure out is the value of the registry.  It seems to me that if a person has been convicted of a crime including abuse, that conviction should appear on the criminal background check we are already required to do.  If a person has not been convicted of a crime, it seems abusive and, perhaps, unconstitutional to prevent that person from working on the basis of a crime they have not been tried for and found guilty.

So, I guess there are two points we can discuss here.  The first is: What don't I get about these bills?  Is there a reason to support them other than their intent?  The second is whether it is harmless to pass harmless legislation or whether such legislation causes damage as a distraction from important advocacy that otherwise might be done.  

Brer Stanley, I know you have in the past expressed enthusiasm for 2424.  Educate me, please.

Whose quality?

Inspired by Brer Stanley, our new topic for debate is about quality.  Quality is something we all agree is important and then, by and large, ignore.  People who have read this blog in the past know that the opinion here is that the single most important reform we could make to our system is ongoing evaluation of the quality of programs, regional centers and policies on the basis of outcomes.  Here's the tricky part:  We just debated whether choice is or is not more important than integration.  If it is, there's a challenge to the measurement of quality.  It is very hard to standardize the evaluation of choice because standard measures need to be valid , meaning that the metric must measure what is designed to measure and be counted the same way by different surveyors.  So the challenge will be developing valid metrics to gather statewide while honoring choice.

One model, the one used by HSRI, for instance, I think, is fairly strong on validity but weak on choice.  Even if you evaluate based on whether a client reports being given a choice, if every other metric assumes the state's preferred outcome and rewards for it, the pressure is to treat all people with developmental disabilities as if their most intimate decisions are to be pleasing to the people at the Bateson Building in Sacramento.  

The common alternative model, I think of it as the JN or LQA model, is to have a deeply considerate and subjective evaluation so cumbersome it typically sits on someone's shelf unimplemented.  

A typical Life Quality Assessment was kind of silly because it was so subjective that which day of the week a client was interviewed could alter the entire result.  A more valid survey biases every professional in a client's life toward state policy and away from the person served.

So, the question to you all is: Is it better to employ a highly valid system that might counteract client choice or is it better to use a subjective system which honors choice at the expense of usefulness or is there a better or more balanced solution?

The Great Debate: Congregate?

An issue that comes up often in backrooms and private conversations but rarely in open policy discussions is whether the State should establish a preference for non-congregate supports as matter of law.  The discussion we just had was so much fun, and thanks to all who participated, that I would like to see if we can't continue discussion.  I'll play a similar role to the one I played on the 22nd, where I'll introduce my understanding of the two sides in the discussion and ask skeptical questions of the people who leave comments.  As before, you are welcome to be as anonymous as you like, but please choose some form of address so that if people want to take up your points and support or challenge you, they can make clear to whom they are referring.

101:  There are, as there should be, many ways that people with developmental disabilities are served.  A distinction can be and is drawn between "congregate" support and "community-based" support.  "Congregate" support is often delivered in a licensed facility ordained to the purpose of assisting people with disabilities, most often with paid staff who, at any given time, are responsible for more than one supported person.  "Community-based" support is generally delivered in places not otherwise dedicated to people with disabilities in particular and there is typically one or more paid staff-person assigned to concern themselves with each supported person.  Exceptions to the preceding are probably rife, but I think that will do for the needs of a blog.  Common examples of congregate services are residential facilities where people with disabilities live under supervision and day activities designed to occupy the supported person's  time away from home constructively.  Common examples of community-based services are wrap-around individualized services intended to secure individuals in homes and lives with maximal sovereignty and liberty.  There are few, if any, voices arguing that more congregate care is our best future and it is almost as rare to hear anyone argue that tomorrow all the congregate care in the State should be shuttered.  So the argument is generally whether incremental and intentional shifts toward community-based care should be centrally directed or whether the state should remain neutral on the mix of services employed.

The Proposition:  The State of California should change statute and promulgate policies in order to prefer community-based services for supported individuals to congregate services.

Introduction and an observation:  In all likelihood, there would be no debate, the hopelessly contrary excepted, that people with disabilities should be safe and well, pursuing goals of their choosing and fully integrated into the community.  Taken together, those three aspirations: Safety, choice and integration are always supported.  In the practice of people living lives, those three virtues are often in conflict with each other and different people resolve those conflicts differently.  In his first letter to the church in Corinth,  Paul wrote of three virtues: faith, hope and charity, stating that of the three charity was the greatest.  I would contend that this debate is really a dispute over whether safety, choice or integration is the equivalent of Paul's charity in the scriptures of California Welfare and Institutions Code, Title XVII. 

OK, so here are my top five pros and cons to the proposition above:

PRO:

1. While congregate services may be of great value to the individuals served, they do not fundamentally change society's view of people with disabilities.  Only the presence of people with disabilities in full view of and participation in society will change how those unaffected by disability see their neighbors.

2. Efficiency is a subtler thing than people like to claim.  If community-based services cost twice what congregate services do "per unit" but deliver thrice the satisfaction, freedom and social value, then community-based services are more efficient, not less.

3. As the costs of legal liabilities and risks grow, models of support in which the State and its agents have less direct responsibility for the safety of the individuals served grow less costly compared to site-based care.  As quickly as the cost of staffing, the main component of individualized support, has grown, the price of insuring facilities may grow much faster.

4. None of us are free as long as one of us has their toothpaste chosen for them.

5. People with "developmental disabilities" have adapted and grown with support much more quickly and easily than the support itself.  For the state to remain neutral on the evolution of the system is actually to be biased toward older models.

CON:

1.  Policy makers can not dictate the values of the individuals served.

2. Whatever models of support may compete in the marketplace, choice is always more efficient than policy-making.  Those who provide wrap-around individualized support know how much money, time and effort gets wasted replacing jobs for people who intentionally and cheerfully engineer their own firings.

3. There is a subset of people served by this system whose medical and emotional needs are unmanageable without support and who would be spectacularly expensive to help if their needs weren't served together with others.  If we're honest about the resources available to us, such as specialized nurses, there is probably a subset of people it would be impossible to serve except in a congregate setting.

4. As an 18-year-old girl I was trying to help find integrated activities once told me.  "I don't like normal people.  Don't you have a group with people like me I can join?"  As a 55-year-old woman I was trying to help find a generic job told me, "Stop treating me like I'm normal.  I'm not normal."  What no policy maker, program director or advocate can do is go back in time and undo the message some people with disabilities have taken to heart they belong to a separate group.  To ask frightened individuals with disabilities to bear a special cost for our joined past is unfair.

5. The Lanterman Act itself does not divide history. The institutional mode of "support" was an expensive failure. The fact that residential facilities and day programs were created under the Lanterman Act as community-based alternatives does not mean they don't replicate the model. The trend of history is the fading of institutions and the rise of the individual.  200,000 people increasingly unaccustomed to segregation can decrease the prevalence of congregated care on their own while the State maintains it's integrity by not choosing between choice and integration.

OK, friends:  Whatcha got?

Brand New Same Old?

A good friend wrote to me with a comment on my previous post below.  

The email read, in part, "ok-- i agree with your points- but trust me - sds will end up being mostly same old same old." 

This is worth discussing. I invite my friends who lurk here, cross post to list servers, and/or read out of a sense of friendly obligation to discuss this in the comments section. Comments can be left anonymously but on the off-chance a conversation actually develops here, I ask for this: If you comment anonymously, please use a pseudonym or unique signature so participants can respond to your comment with some form of address.

Five reasons to think self-directed services, SDS, will be a new, more valuable and more efficient model of service delivery:

1.  Program design belongs to the person or family served.  A client-centered design is not guaranteed but it should be the most natural result.  In the traditional model, the wisdom, insight, bias and preference of the service provider and service coordinator are the most likely guidance.

2.  To the extent that accountability and oversight are transferred away from the regional center to the people served, inefficiencies in defining, assessing and assuring quality are significantly reduced.  These inefficiencies in the traditional model widely deplete fiscal resources, human resources and efficacy.

3.  Layers of overhead can be eliminated.  Vendorization of service providers, reporting requirements, worker's compensation, mandatory reporting, employer liability, general liability are all provider costs that can be eliminated or reduced under SDS, especially where the client does not use a co-employer agency.  Insurance for SDS clients is a brilliant investment for SDS dollars where staffing is involved.

4.  To the extent that decision-making is located in the client's home, rather than in the broker and/or regional center, the iterative reviews of client choices that inhibit both creativity and dispatch can be reduced.  For those of you who were reading during the series on Value Stream Management which began here, this represents an efficiency improvement referred to as making the value stream flow.

5.  As neighbors and system civilians replace agencies in the provision of some supports, natural supports in the community can be constructed and strengthened.

Five reasons to suspect that SDS will turn into the same old corruption we're saddled with now:

1.  The development of the regulations followed the same process of speculative problem-solving that many feel inhibits creativity and thins the robustness of supported living.  I have argued here that regulations for the system have been overwritten, undercomplied with and often ambiguous, detracting from the very virtues of efficiency, market-driven discipline and individualism that characterized the original intent and intelligence of the Lanterman Act. These regulations are well-intended, thoughtful and smart but it is probably the nature of regulation writers to see regulations in too positive a light and, what's more, California regulators have to harmonize with the habits of federal lawgivers.  There is no reason, based on available drafts of the upcoming regulations to think SDS won't be over-regulated, stiffening the flexibility we look to for a better model.

2.  While brilliant people have made sincere and thoughtful cases for the exclusion of people being served in congregate settings and allowances have been made to overcome that criterion, the concern remains that the most costly, least person-centered and most confining parts of the system have been protected from the reforms involved.  This also means those who can benefit the most from SDS will be excluded.  This creates two risks: The first, that salutary results will be diminished, reducing enthusiasm and advocacy the program will need to survive or thrive.  The second, that as the more individualized and person-centered supports grow leaner, the already expansive portion of advocacy and consultation offered by bulkier, less responsive agencies continues to grow.

3.  Scoundrels are scoundrels wherever they gather.  The regulations leave a lot of room for regional center input and control.  There's no certainty that service brokers will function as envisioned.  The same bad habits that attenuate the virtues of the current system can easily thrive in the new system.

4.  While some regional centers, including the five pilot sites and San Gabriel/Pomona have shown commendable enthusiasm for the new program, it will not be difficult for regional centers leery of SDS at the management level to undermine, redefine and/or disincline the engagement of the program.

5.  The spontaneous occurrence of idiocy remains a distinct possibility.  By idiocy, I offer this example.  Stupidity that limits the flexibility of service models intended to provide responsive, person-centered care and justified by incomprehensible paeans to quality, person-centeredness and "the principles of the New Day conference" not only occur but find limited resistance and meet little reason.  If Westside and Orange County regional centers can do it to ILS, they can repeat with SDS.  Two or three years out, look for regional centers to propose converting SDS into a formal congregate steeplechase and be met with a resounding "um."

Your turn.  Discuss.

A return to Heurism and/or Wereism

This is the one hundredth post on this website, a cause for celebration no doubt and maybe kindness or neutrality.  To think without cynicism is to hear the beating of angels' wings through a bird-splashed windshield, but I have had some thoughts recently about how the "Support broker" position in self-directed services might develop differently than it is conceived so far.

As presented, the position is largely designed to provide for two functions, that of a person-centered plan-writing guru and secondly as a clearinghouse for referrals to appropriate resources available for SDS client/managers to fulfill their plans.  Without disparaging either function, I wonder if there aren't roles of greater value into which the service broker role might grow, much as ILS agencies have changed wherever permitted from the role initially conceived to a more valuable one unforeseen but unprevented by regulations.

While person-centered planning as a brand-name set of operations can be a wonderful contribution to the service and support people receive, some of that value may be diluted by the self-directed aspect of self-directed services.  What's more, as much as I and ¡Arriba! have been and continue to be boosters of Essential Lifestyle Planning and person-centered thinking, we have been boosters with a sneaking suspicion that the basic ideas are more important to advocates on average than to the people the thinking is meant to be centered on, paradoxically.  It is almost certain also that "person-centeredness" has a much wider dominion as an amorphous catchphrase translating, approximately, to the English "Holy" or "Pious" than it does as a practice.

The clearinghouse function will, for many SDS clients be sufficient and magical.  If a client's purpose is to recreate at lower cost and with greater control the traditional one:one services they've received, and that client lives in an environment with a high density of people with disabilities, then their purpose is a grand one. For these SDS clients, an advisor who makes a business out of knowing who is providing what supports at what costs and how their clients seem to enjoy the service can be very valuable.  In more rural or less-served communities, in languages spoken by very few, and to people whose purpose with SDS is to more creative than, say, replacing supported employment with a look-alike SDS equivalent, it is not clear what breadth of knowledge would be necessary to make a service broker a useful expert, or how they could possible charge enough for such expertise.

So, with the wisdom of a service broker whose caseload is expected to double this month from one to two clients, I will speculate out loud that a primary function of the service broker will be as a management consultant to SDS clients.   It has been such a long fight to acknowledge that people with disabilities, themselves, have the best ideas for what they value and need, that we might have grown reluctant to acknowledge that other capacities, such as designing and managing programs that work are learned skills.  There is no reason to assume that any given SDS client will not be a brilliant manager and reliable planner, but there is also no reason to expect her neighbor to be.  

If you look from agency to agency- ok we've established this doesn't happen- if someone would look from agency to agency with an eye to quality and efficiency there might be a wide variation.  For SDS clients who have to depend largely on themselves for their success, that kind of variation endangers the success of the SDS program and the wellbeing of clients who don't get it right away.  Regional center staff, generally, will not be able to provide advice on program management any more reliably than clients will intuit that knowledge instinctively.  However, a service broker with experience in program management can provide real value toward greater success and security of individual SDS programs.  For some subset of SDS clients, management consulting will be the most valuable function of a service broker.

What does this theory require of us now?  Probably nothing.  While the SDS guidelines will probably over-regulate who can be a service-broker, the basic function of management consultant is not forbidden to service brokers.  It is always worth remembering with new things that unexpected results might be salutary.  I think the only policy suggestion I have to offer for now, is that when the time comes to review and improve whatever regulations are about to be promulgated, that some thought be given to a more nuanced method of preventing conflicts of interest if to do so will improve the quality of service brokers.

An illustrious and heuristic new year to us all

So, an anonymous friend or stranger, commenting in the post below, reminded me that I started this blog to be an undisciplined but thoughtful problem-solving forum.  A cruel reality that I think needs to be held up before I return to my original purpose is this:  This year's "reform" discussion is doomed to stupidity because no credible and systemwide effort to measure, identify, examine or rationalize what actually happens in this system has been performed and the pressures against the cost of the system are too urgent.  I expect smart and well-intended people using all the information tools available to put forth ideas for gently reducing the funding our system.  Those people, if they believe they know how the system works now and where the problems are have over-rated their guesses and gossip. 

But, maybe in the midst of the coming catastrophe, there will be opportunities to talk about accountability, transparency and adding features to the system that will make it smarter.  Here's my new year's list of topics I hope will be seriously discussed.

1.  Those of us with client-level perspectives know that the regulations guiding this system are routinely not followed.  In the end, we need to decide if we believe that a client-centered system is truly more valuable and more cost-effective.  If we do, we need spare and judicious regulations routinely followed with consequences for those who ignore the rights of clients to guide their program plans.  

2.  Efficiency, the economic concept, unlike the political euphemism, "efficiency," is the heart of justice.  In an efficient system, some of us would lose our jobs but those most vulnerable in the system including clients, direct-care workers and families would be likelier to benefit from the money and effort spent.   The honest definition of efficiency is the value added for the cost expended.  Skilled and management workers need to understand that a more efficient system might need some of us less, but moral individuals should be ready to be counted in that number.  I can still fix old cars and might get my roping back with practice.

3.  The system needs to get much, much smarter.  We don't measure and track outcomes.  At the policy level there is no hopeful way to direct resources where they will help the most.  At the client level, there is no reliable way to choose the most helpful support among alternatives. The cost of neglecting the intelligence of our delivery model will be tragic this year.  If vendors, regional centers, unions or other stakeholders seek to delay or deter transparent evaluation and easy access to information about quality, they deserve to be ignored or over-run.  It is a very late hour to start this conversation in earnest.  

4.  There is real magic available in self-directed services.  The regulations are too many and the funding too sparse for some people to benefit but for those who can make it work, significantly lower costs and better quality of life will likely be the rule rather than the exception.  The silver line around the gathering squall is that SDS will appeal to many who have been leery of it.  First chance we get, though, those eligibility criteria should be revisited and relaxed.

5.  Be kind to the grouchy, negative, critical and portly.

Best wishes to all of you in the new year.

The end is nigh, eat at Joe's

The $10 Billion deficit the State is facing is likely to deepen rather shallow and most of the tricks we've been using for the last five years are no longer available.  Cuts to the Department of Developmental Service's budget can be anticipated.  It may be a short period of anticipation, too, relieved by midyear changes to the budget, although expecting the legislature to move too slowly is not unreasonable.

Whatever the cuts will be, they won't be smart.  If we kept data on outcomes and the value added by programs and models to the lives of people with disabilities, the cuts could focus on the least helpful programs to preserve the most critical, helpful or useful.  Since the only outcome metrics currently employed are the self-righteousness of the providers, clients and families, all indications are that every program and agency appears crucial and excellent, I am pleased to report.

If there were reasonable transparency, we could anticipate that those agencies that provide the most cost-effective care might be favored for referrals and some of the deficits made up by suggestions that those people with choices to make be encouraged to consider the cost.  Since the referral process is not transparent, nor the evaluation process and the cost data is fairly meaningless, our only hope for absorbing cuts through information is the assumption that IPPs will be more thoroughly considered in the lean times.  The good news is they won't be less thoroughly considered by and large.

So, the cuts are fairly doomed to folly.  Another question, though, is will they save the state money?  That is questionable.  Lacking information on what works and what saves and what costs (a recent spreadsheet handed out at Assemblymember Buell's hearing in San Jose estimated savings to taxpayers from people with disabilities working but did not include estimates of taxpayer costs to find, create and support the jobs,) it is likely that this year's "cuts" will be of the normal sort, meaning services and supports that lower cost will be targetted equally with those that are relatively expensive and if rates are reduced it is likely to be by an even percentage, putting the low cost providers at disproportionate risk as compared to the high cost providers.  In the end, without drastic moves against the Lanterman Act and its entitlement itself, the system will probably suffer a deficiency that, by a second year, may be greater than "cuts" written into the budget.

There would be a better way if outcomes were measured and information made usefully available to people with disabilities, their families, regional centers and providers.  There would be a better way if there were a reliable means of accountability.  Instead, the legislative and executive branches will do their level best without any useful information.  My frustration will continue to be how little effort gets put into getting smarter.

For those of us who really want to see Self-Directed Services grow and prosper, though, there is a silver lining: The nags, scolds, sanctimonious pencil heads and vampires among us may accidentally wind up temporarily on the side of the angels.