Save your self(-determination)

On this blog, we have discussed SDS (self-determination or self-directed services.)  For examples, you can click here (and please forgive the self-referential first result.)  I have tended to argue stridently for self-determination in concept and ambivalently for self-determination services as proposed and grouchily about SDS' roll-out.  Now SDS seems dead after an unfriendly end-of-life. But the basic concept still seems relevant, particularly with the traditional DDS system wheezing and scowling.

So, a first question would be what was the basic concept?  If you read the languishing proposal to the federal government, you don't know.  But I would argue that the basic premise was that the individual level is the best one for identifying and addressing the needs of an individual.  

When you look at what SDS offered, there are obvious efficiencies available under a person-centered service regime which can save the state money and improve benefits.  Now that the SDS movement is on the shoals and it's cargo poisoning seals, we have an opportunity to consider whether what was important in SDS remains viable and worth salvaging from the wreck.

Self-identification of needs and solutions remains, in theory, the official law of the land and the funniest joke in the villages.   There exist more than one way of putting the I back in IPP/IFSP.  Certainly, the preference for providing supports by availability rather than appropriateness allows a great deal of waste in our system, of state funds and client energy.  This ought to remain a focus in bad financial times more than in good ones.

Administrative cost will continue, I'd think, to be under pressure.  Instead, this is what advocates seem to defend most passionately.  Clients who are able to protect themselves don't need to be paid to do so.  Clients who are able to advocate for themselves don't need to be paid to do so.  Clients who can judge among available options for their own goals don't need to be paid to do so.  So why hasn't the devolution of the purchase and oversight power of regional centers and vendored executives come under attack with the community budget, for those clients able to take up the same task?  Even the development of SDS empowered regional centers, progressively, to apply themselves to tasks capable individuals will do for free.  

Throughout our current budget fandango, deregulation continues to not come up as a means of reducing fiscal pressure.  It ought to be remembered that beside stifling innovation, regulations always have a fiscal cost as well.  A correct system will balance the cost of regulation and supervision against the not unreasonable fear of liberated vendors.  SDS offers a terrific vehicle for testing a more person-centered regime as a cost-effective means of oversight, but even without SDS, some rebalancing is called for.

Unvendored services still offer more cost-effective resources for many currently vendored efforts.  As long as the only way some ¡Arriba! clients can reliably carry out normal activities is by ¡Arriba! employee chaperones, we will continue to provide that assistance at our new, low, low rate.  But there are a lot of trips for which a neighbor with a Camaro and twenty bucks for gas is an almost perfect substitute at half the cost.  SDS was a useful model for testing the safety and availability of unvendored providers of unskilled services.  Even without SDS, policy-makers ought to be broadening system resources. Unvendored services can often be more integrative and inclusive than vendored ones.

Without a formal SDS proposal, some of the the composite policies still offer relief to a stressed system.  The development of those policies, in turn, can increase the level of self-determination in our system.  SDS may now be decomposing and might have started to decompose premortem, but before we bury the remains, it's worth seeing if there aren't some nutritious bones left in the carcass.  If we aren't that hungry yet, we are likely to be soon.

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.

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.

Self-Direction, Finale (for now)

To those who have noticed and inquired and thank you to those that have, I thought I'd wait until the new self-directed services regulations come out and then fume about how prescriptive they are and how they over-regulate while under-protecting the enrollees. I thought the new regulations would be out by now. That much I was wrong about.

Back to Self-Directed Services

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

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

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

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

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

Self-Directed Services: My endorsement

I support self-directed services (SDS) because in concept, SDS programs empower people with disabilities by removing some control from service providers (including both Regional Centers and direct service-providers,) because an effective SDS program lowers the cost of quality in services and supports by involving the person best able to control costs in the negotiation for price, and because without SDS the integration and sovereignty sought by the DDS system for people with disabilities are largely absent from its workings.

The current proposal adopted by the legislature's budget conference committee certainly will implement the initials SDS and may well lead to the actual manifestation of its meaning. The ban on using SDS while a client lives in a congregated facility or uses a day program certainly limits both the choice of clients and the benefit to the system and the state. The failure to specify the role of service coordination staff in SDS, which may or may not occur in writing the regulations, leaves up in the air how much actual control will pass to people with disabilities and, therefore, whether or not this new program meets its goals or produces significant benefits.

Fears as to whether the regulations being developed will follow the normal process of public input have placed many erstwhile supporters of SDS into a skeptical state.

All of that said, this proposal is the most promising reform to come this close to implementation. So, I endorse the SDS proposal with the anticipation that legislative and regulatory corrections will be needed to implement SDS itself.

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

May 18, 2005

Re: SDS

My professional angst regarding the development caught a second wind. I always do share my winds, so here’s the breeze: What if SDSP passes, is implemented and still doesn’t happen. The way this could be so? If the protection features built in create an environment in which the control that clients have over their services actually declined.

Here’s the new data: Regional Center (RC) Service Coordinators (SCs) are intended to review monthly whether potentially very broad language from the clients Individual Program Plan (IPP- I know, I know) to decide whether it was being implemented appropriately. Under the current program, SCs have more frequent interaction, more discretion to intervene and more ways that they are accountable for outcomes. A rational SC who sees SDS as values-neutral would take more control of client services under the new proposal than the current system.

The essential point is that Self-determination will not achieve it’s stated goals unless it transfers authority to clients which simply won’t happen unless responsibility transfers as well. The best and worst professionals in the system regularly circumvent controlling regulations and can be expected to do so in opposition to the purpose of SDS as long as they remain responsible for all the client outcomes. It has to be in everyone’s interest that the client controls services or else we’ll have fake self-determination to go with fake entitlement.

I know this looks ugly in print, but ideally under SDS, the client with their FMS and Service Broker have to have sole responsibility for things that Regional Centers are now accountable for. Examples might include the following:
ÿ Preventing morbidity and mortality,
ÿ Decisions to work or not work and how and where,
ÿ Progress that is or is not made (clients must be allowed a learning curve,) and
ÿ The extent to which the individual participates in the broader community.
This doesn’t mean that clients in SDS should not be counted toward all policy goals, just that RCs shouldn’t get credit or blame for the outcome.

What makes SDS bold, is the trust it places in people with disabilities to serve their own best interests. What makes so many current programs so sucky is the failure to trust the client. Here are a coupl

1. SDS participants should count against a separate performance contract for their Regional Centers. The new draft of the proposal, makes a good start on developing a new one, but doesn’t yet separate from the old one Taken a step further, vis-à-vis an SDS client, RCs should be more responsible for providing control to SDS clients and less responsible for traditional policy outcomes. Appropriate language might state that all the metrics now used for RCs will be reported to and recorded by the Department, but not apply to the RCs performance contact. The SDS outcomes can be used against those from the performance contracts to measure the success of both programs as compared to one another and provide policy guidance into the future.
2. Clarify new roles. Limit what SCs may do to a very simple role that only makes sense if we are empowering clients. Limit service providers’ responsibility for documentation, to clarify that services delivered under SDS are accountable to the client alone (and through the client to the RC for purposes of documentation. Everyone affiliated with an agency remains a mandatory reporter, and obviously, the documentation left must allow for reasonable assurance that services are being rendered. Paperwork requirements that document anything other than services actually rendered should be discontinued where service providers are concerned.

What's Right about Self-Directed Services

OK, so the Self-Directed Services Program (SDS) proposal has flaws and has been managed imperfectly. Here's why I want SDS to pass anyway, and what I plan to do about it.

Self-Directed services differs from the current system in this way: Those who choose SDS sacrifice a (theoretically) flexible budget spent on restricted resources for a restricted budget which can be spent creatively. This produces a number of efficiencies, such as reducing the principle-agent problem which inflates costs, straightening out lines of accountability, and improved opportunity to find and use resources which lead to lasting changes in the ability of the client to participate fully in society.

In this way, SDS can be expected to lower the cost of quality in support for people with developmental disabilities, improve the harmony between what's needed and what provided while institutionalizing the personal sovereignty sought by the Lanterman Act within it.

Here's my thinking about what to do in seeking SDS as a part of a richer system:

First and foremost, the community needs to take the ownership of SDS. The negativity that many of us feel or have felt toward this proposal seem primarily directed at the parts of the proposal that are not organically SDS. Examples include limitations on client choice, on due process, and on oversight. These elements of the proposal don't arise by necessity from SDS and in fact, diminish SDS and place the success of the program unduly at risk.

Under the U.S. and California constitutions, the part of government meant to belong most directly to the people is the legislature. To this point, DDS has been defining what SDS is to the legislature through proposed trailer bill language. That language is close enough to right that the community needn't write much. I plan to direct my attention to communicating the purpose, importance and optimum design of SDS directly to my legislators and Senator Chesbro. I urge my friends in our community to do the same.

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.

Anonymous, I hardly knew ye

In my previous post, an anonymous friend left a comment with three questions that seemed relevant to the blog in general. In my ongoing effort to provide maximum service to all of my reader(s), I thought I would respond in a new post.

1. What if the agreements, reached in the beginning, change or evolve as movement is made toward the goal?
This is an excellent question regarding Earned Value Analysis. Because clients are free to change goals at any time, many objectives become obsolete before they can be accomplished. There are methods for dealing with this that shouldn't damage the basic right of clients to change their minds. One offhand example is that most methods of counting Earned Value give partial credit for partial success, so that if an objective agreed upon and funded with a 6-month time horizon is changed after two months, and the objective were 1/3 complete as planned, then the agency would still be evaluated well (6/6=2/2=1.) If a funding mechanism were attached, compensation for the 2 months would be equal to the portion the agency expected to earn in the same time. Please, anonymous or other reader, feel free to ask for more clarification if I haven't answered the question.

2. Do you tend to lean more toward Weber or Durkheim in your analysis of institutions?
Do what now? You may be confusing "opinionated" with "informed." If you read more weblogs about politics and government, the distinction should sharpen nicely. (Shrug)

3. What should anchor decisions about the appropriate level of intrusiveness by public authorities in a self-determined service model?
My answer would be fraud, abuse and illegality should be actively watched for and trigger intervention when identified. Other than that, self-determination should mean what it says. By public authorities, I would include government entities, government entities that assemble boards and start carrying airs of private agencies, and any mandatory reporters in proximity to the self-determined use of state funds. Self-determination is a massive re-balancing of individual sovereignty against professionalism and shouldn't be sought or entered into by any party that doesn't accept that.

I expect self-directed services to be less gratifying to it's sponsors and the professional class of social servants, messier and less predictable. Professionalism has brought a level of order and advanced philosophy to this system which has value and cost attached. Scandals and catastrophes will be more frequent, but less pervasive than in the current system where many feel there is only one scandal and one catastrophe which are inclusive.

Self-Directed Services: And another thing!

It was raised today, again, about the barrier to using SD in a congregant setting (one in which more than one client is served the same way.) I have the deepest admiration for the minds and hearts of people who put together California's SD waiver and even why they chose to proscribe traditional services. Ultimately, though, the point of self-determination is the assumption that the client can decide what supports fit best. That makes it pretty hard to reconcile with regulations (proposed) that tell the client what not to decide fits best.

The strongest advocates for SD also tend to be the most passionate opponents of the traditional service system. As such, I'm on their side and trust them to be on mine. Nonetheless, it seemed like a pretty insular development process and the community hasn't been given a lot of time to digest and respond and argue for changes. I wish that were different. I think a good product could have been better and more honest had it been written more in the sunshine.

*** Correction -2/10/2005 ***
I have been told by a good friend, whom I trust, that significant effort was made to have the development process be open and transparent. Apparently, there was steering committee and anyone who inquired was meant to receive drafts and invitations. I certainly accept that pretty good outreach doesn't always mean everyone finds out about everything and that the process may only have seemed insular to those of us who were interested but didn't find our way into the mix. Apologies to anyone who felt the comment above was inaccurate or unfair.

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 IV

I'm smart for a fish. I'll skip the bait of the Governor's budget and continue with writing about self-direction.

In terms of savings, I am convinced that a Self-directed system can provide equal or better care at lower cost. My concern at the outset is that the new marketplace needs time to develop and if the cost-savings required by the State at the outset are greater than those immediately generated by the new model, the deprivation of funding will starve the political interest in the model.

The requirements that the State plans to implement include a 5% aggregated savings, and an additional 5% (basically an insurance policy) which will be aggregated and reallocated in case of emergency. So the goal is that clients will have a budget that averages out to 90% of what their regional-center funded services would have cost. In addition, each client will be required to hire a fund manager from the budget remaining. What this means is that there is a number, somewhere over 10% that clients will have to immediately realize in order to be as well off as they were under the previous model. By year two or three, I'd be suprised if that level of savings were difficult to realize. In year one, it's pretty dicey.

The political question becomes important. Clients and their families have driven the development of the SD service model. If the model has early success, I suspect a significant portion of clients and their families will want to replace the old model with this one. If the initial roll-out is seen as a failure by the enrolled clients, we do know how to oppose things. In the minds of clients and their families, success or failure will not be measured by the State's savings but by improvements in their ability to acquire the support they need.

As I mentioned earlier, I can estimate a 12% ballpark level of savings with a random sample of our clients. If this is close to the right number, the current requirements are too high in the short run for SD to maintain its popularity. In the long run, the savings generated will probably exceed the current requirements. Here's why I think so:

To comply with both our internal sense of quality and state law, there are costs related to training, administration, supervision and staff development which are universal to all of our counselors and applies to every hour the help clients. Some of their activities are of extremely high value, other demand less of them than their preparation. For example, shopping. Some of our clients, due to their disability, need some slight assistance in order to buy groceries. For the reason given above, that work can't be done by us for less than our standard rate. For many clients, that support could be provided by someone else at lower cost. Probably 60% lower cost. The problem for the present is that many clients will not have someone on hand, with a vehicle, ready to take them shopping. The market for satisfactory, lower-cost alternatives to traditional services will take some time to develop and until it does, the largest savings won't materialize.

My concern with the 10% and a fiscal manager rule is that in the first year (or two,) clients will not have access to the same quality and quantity of support that they have had under the traditional system, and, as a result, self-directed services will lose the interest of many of those who would eventually benefit from it.

So, here are some possible remedies:
The Medicaid Waiver only requires cost-neutrality so the State may wish to eliminate the initial 5% of savings until, say the third year.
Because the fiscal manager will be performing functions currently provided through regional centers, use some of the operations appropriation to pay for the FSM.
Use a phased system, including a 2.5% savings requirement and a 2.5% "insurance premium" in the first year, with a planned increase in the third year.
A final possibility, as long as a client is free to move back and forth between the traditional system and self-direction, is to eliminate the "insurance premium" initially, first to allow time for the State to calculate the appropriate level and second to improve the success rate in the first year. The traditional system can be the resource of last resort.

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?

Self-Direction, Episode II

In which Regional Centers and vendors are predicted to decline in importance as a result of SD.

First of all, I expect to remain in business and well-fed. The decline in importance probably won't be drastic and in most cases is likely to focus much of the system more on core mission. Overall, it's hard to predict whether shrinking budgets and costs will balance out in favor of, or to the detriment of the agency.

I think it's safe to assume that vendors will shrink as a proportion of the whole. Regional Centers will have to as well to make the whole reform work. The benefit from this change is, many clients receive professional assistance from vendors because there are no natural resources in the community able to provide needed help for free. Clients are able to employ unvendored, unlicensed alternatives for support that requires little training, oversight or infrastructure. This can remove lower-value activities from the responsibilities of vendors to provide and regional centers to monitor.

Please note that some of the savings will come from a reduction in the need for source documentation and process-focused quality assurance. I'm trusting that the reduced need for these types of scrutiny will result in a reduction in them. If not, it will be an unnecessary missed opportunity to improve the system both in terms of quality of benefit and cost. Plus, the people who think I'm preposterously gullible will have been right again.

A final note on shrinking service providers- and I think I am hopelessly naive here, in order to sustain the best of what the system has to offer, I think it would be a good idea to reduce pressures on rates and the POS and Operations budgets of Regional Centers by reducing agency funding by more than half but less than all of the realized savings. The high-value activities that agencies will continue to manifest have been underfunded for a long time and can have greater impact through more robust funding.

Self-Directed Services: Episode I

In which Doug rants about what real reform is and explains why Self-Direction qualifies.

OK, so the first thing is to distinguish real reform and "reform." The analog for me is to construction. Smarter architecture and better carpentry technique can allow structures to accomplish new things, find new uses or maintain the old function with fewer materials. We kind of already read in the papers about what happens when builders try to do things the same way with lesser materials.

The parental co-pay starting in January is not real reform, it's the opposite, because it adds costs not related to the function of the system in order to change who pays. More cost, no added benefit to the client.

The Statewide Purchase of Service Standards (POSS) that I expect to be proposed in January are likewise, not real reform. I expect them to raise the cost to the State and reduce benefit to society. My prediction is reasonable but unsupported by facts as is the opposite prediction. In a clear and concrete way, the POSS proposal is an arbitrary attempt to use less lumber in building an identical structure. The real savings or added cost depends on how soon it collapses and which attorneys the injured employ.

Self-direction, on the other hand, is better architecture. One of the chief inefficiencies in our system is what economists call the "Principal-Agent problem." That means that the people making decisions have different goals and incentives than the supposed beneficiaries. The inefficiencies that economists connect with this problem are, yup, waste, fraud and abuse. Basically, resources are diverted from their purpose to serve the goals of the agent (i.e., service coordinators, life quality assessors, direct-care staff, portly executive directors, etc.) Please note, this isn't always (or often) the intention of bad people, but often natural result of committed people who are worried about the alligator biting their bootheel and climbing their leg.

Under self-direction, the Principal (the client) is significantly more the agent than is currently the case. Service Providers are free to set rates and clients are free to pay them or to substitute a cheaper and sufficient alternative. The only reasonable outcome to expect is that the principal will seek a cost-effective array of services and reduce the incidence (and cost) of bad service selection by service-coordinators, inflated service provision by vendors, unrealistic expectations by life-quality assessors and clients' rights officers, etc.

The principal-agent problem persists, with the positions reversed, when you consider the goal to be stewardship of taxpayer dollars (a stated goal of the Lanterman Act.) Because clients and their families bear little or none of the cost of services under the current delivery model, they have no incentive to accept insignificant reductions in benefit in exchange for substantial cost savings. (In theory, the family share of cost assessment due to begin in January was meant to reduce this problem and maybe in another post I'll write about it's flaws as a solution.) In this case the State or the taxpayer or the system is the principal and the client/family member is the agent making decisions.

Consider: One cost that my agency bears (and therefore the State) is client absenteeism. If I send someone to work with a client who is not there, no service is delivered and I don't bill but I do pay staff for time and mileage and therefore I am restricted in my ability to lower my rate. Another cost related to providing services (this may be limited to specialized services like ours) is the cost of serving different individuals in different places. When staff see three different clients in an 8-hour day, there is often one hour of travel time during which there is no benefit to the client.

After last year's Self-Determination Conference I grabbed 10 files at random and calculated that a 100% reduction in client absenteeism and a 50% reduction in travel-time would amount to a 12% reduction in our costs for those 10 clients. Under the current delivery model, it would be illegal (I assume) and unethical (I'm certain) to offer to pay clients for perfect attendence and to work with staff less often for longer sessions. Granted, some clients may have sound and irremovable cause to miss sessions or to see us more often for less time. For the others, however, under a self-directed services model, I could absolutely offer a discount in exchange for consideration.

There's another available source of systemwide savings that would improve the benefits to clients. Because this system does not evaluate outcomes, nor supervise services, the focus of system's quality assurance process amounts to primarily a review of proxy documentation. The assumption is that if a thorough review of your documentation supports the the presumption of a quality program, then you may be alright.

This leads to two inefficiencies vis-a-vis either principle stakeholder groups- the clients and the taxpayers. Because our paperwork is the messenger of quality, vendors and regional centers dedicate probably more effort to turning out (or reviewing) good-lookin' sheets than actually improves our services. My reckoning has always been "they don't know how we're doing so they have to know what." In theory, when the person controlling the funds is the person who benefits (or not) from what they buy, the quality assurance currently being done can focus on measures of success rather than measures of effort. That means a shift in incentive to providers from describing services well to providing good service. As a consequence, resources will be redirected in the same direction. A client willing to continue paying for services means almost the same thing as a thorough documentation of effort and should be cheaper to maintain.

More client benefit, less cost, more sustainable agencies. Real reform.

Stay tuned later this week for the next episode.

Self-Directed Services: The mini-series

On a recent CDCAN teleconference (See post dated 6/22) Julia Mullen, one my favorite people, presented the long-awaited as-yet unfinished waiver proposal for self-determination. My phone started ringing pretty quickly with brutally and predictably successful attempts to have my opinion on the topic. Self-direction is a tidal reform, as potentially important as the Lanterman Act was in it's time. So, the fact that it could arrive over the next few years as a viable alternative for many people with disabilities is: exciting, scary, encouraging, troublesome, hopeful, sinister, etc. Like all big change, really.

Also, there are a lot of issues- some conceptual and more that occur in the space between theory and practice. After the teleconference I decided that my next few posts on this site would be a series on some of the issues that I think are important related to self-determination, with maybe a one-off post next week on a Christmas-y theme.

First- the primer: Self-determination (self-direction ((SD)) refers to a system in which individuals or families served are given a budget to control. In the traditional system, Regional Center staff determine what the client needs and procure something similar regardless of cost under a host of regulations that define and limit and motivate and control available resources. The services are controlled, but the cost is not. Under an SD system, the cost is prescribed but the services are regulated primarily by the client. The person served has a great deal more real control over services including a larger share of the oversight, accountability and right to define what (or who) is a useful support.

Now, the introduction to the upcoming series:

The postings on self-direction will try to approach a lot of the issues around SD in general and the current contents of the waiver to be proposed. The goal will be partly to demystify what is being proposed, to clarify which parts of the future regulations I feel really need to be written right, and, in the name of full-disclosure, to advocate that our community seek to refine SD but not to block it. In the end, my biggest fear about the future of SD is that we will allow the perfect to be the enemy of the good.

First-thing to know: As Dr. Mullen described the upcoming regulations, California's SD program will be voluntary and accessible in both directions. The promise, and its an important one, is that everyone who fears SD, or is served badly by it, will be free to remain in or return to services under the current model. I do fear that the blackhearted gnomes who run many Regional Centers will use the SD option to tighten control over client's served under the traditional model, but generally as long as the system is truly optional in both directions, there is no erosion of clients' rights.

So: Here are the big issues around SD that I see as deserving the inquiry of our community. Subject to any feedback I may receive later- these will be the topics I'll cover in this series:

1. SD is reform, not "reform." Here are the differences between reform and "reform:" The former actually creates efficiency and lowers costs in parallel with lower funding in order to maintain or improve services. The latter is 99% more likely to occur and is bull-sign.
2. SD, if done correctly and honestly, will erode the importance and budgets of both regional centers and vendors (in the aggregate) in California's DD system. If it doesn't, it won't work.
3. SD will increase the opportunity for fiscal abuse of people with developmental disabilities. Expect to subtract from both the new freedoms and the new savings generated, costs and controls related to preventing. identifying and prosecuting abuse. The mandatory fiscal agent is a positive example of the costs and control above.
4. The savings threshold planned may be unrealistic for a while. The current plan calls for individuals in the SD program to have budgets which average out to 90% of the current cost of the program and to hire a fiscal manager (paid for from the 90% remaining) to share the oversight role. When I ran numbers looking for savings under the SD model, I came up with an initial 12% cost-reduction for services to be shared between the state's budget, the client's level of support and my own operations. One way the SD program might fail is if the benefits to the client and provider don't materialize. I would strongly encourage a phased-approach to savings.
5. Remember that the success of SD as a concept depends on a marketplace for services and supports that needs to develop and mature. I expect SD to succeed in the medium term but it may well seem a catastrophe six-months in.