And a note on trust and reform

Here is something in the way of reform: Who do we trust?

If a reform requires regional center discretion, such as the frequent proposal to require maximum cost efficiency from a vendor or allowing negotiated payments, most of the community won't trust the reform because we don't as a rule trust regional centers.  We don't trust regional centers because as a rule, they aren't trustworthy.  They aren't trustworthy because, as a rule, when someone at a regional center does something unwise, whimsical or badly, nothing unpleasant will happen to them.  This tends to be true for individual service coordinators, executives, boards and middle managers.  The community but for ARCA won't support reforms that empower the regional center to do anything because we all know well that regional centers are too empowered already.

If a reform empowers vendored agencies, we won't support it either.  Take for instance, the example of proposals to have vendors rather than regional centers perform the service coordination function.  The community won't support that reform to empower private vendors because the community doesn't trust us and the community doesn't trust us because we have not been reliably trustworthy.  We are not reliably trustworthy because, in general, nothing bad ever happens to agencies for poor performance.  Nothing bad happens to agencies for poor performance because nothing bad happens to regional centers for poor performance.

There are a lot of reasons that self-determined services (SDS) make sense, but I suspect one reason SDS offers the only recent example of reform (stalled as it is) must be that it doesn't empower anyone who has any experience with power to be proven untrustworthy.  Not long hence, support brokers and financial management services must take their places as proxies for the politically untouchable clients as stereotypical reprobates.  Soon, we will not trust them because they will not have been trustworthy because nothing will happen to the bad ones because nothing bad will happen to the people meant to oversee them.

Reliable accountability remains the reform needed before any other can be expected to go forward. 

What's not in the DDS Report, Controlling Regional Center Costs, Part II

Another cost-saving, service improving fantasy of mine is the idea of outcome- rather than cost-based payments.  The idea is similar to Self-Directed Services but would be more appropriate for those clients less able to manage their own programs.  The idea is that specific outcomes can be priced based on the difficulty of reaching them and a general idea of the individual's special challenges.  This method can improve services and reduce costs to the extent that:

1) The objective is clearly defined and observable.  "Adolph will maintain optimum health" or "Joanna will be happy in his home" are not the quality of IPP goals that work best for this.

2) There is sufficient information, honestly (!) brokered on behaviors and other non-obvious challenges to be overcome.

3) Clients do not reach their own objectives currently because the system's incentives are geared toward maintaining the status quo or, worse, letting crises develop.

4) The cost-based approach is absurd and inefficient, except as compared to the rate structure it generates.

Granted this is so different from what we do now, that lots of input would probably improve the suggestion, but the basic idea is that the objectives would be priced and agencies willing to undertake the job could be interviewed by the client.  An agency that delivered success for clients in a timely fashion would be overpaid according to current standards, while an agency that was unable to accomplish the client's goals would not be paid at all.  

There is a danger that clients who are hard to work with, have more audacious goals, or present greater risk will be hard to find support for at any price, so the method might never safely replace the current model for everyone.

What do y'all think?

**UPDATE** The scary smart friend I referred to in the earlier post emailed me to look up 4648(a)7 in the Lanterman Act in reference to this post.  It reads:

(7) No service or support provided by any agency or individual
shall be continued unless the consumer or, where appropriate, his or
her parents, legal guardian, or conservator, or authorized
representative, including those appointed pursuant to subdivision (d)
of Section 4548 or subdivision (e) of Section 4705, is satisfied and
the regional center and the consumer or, when appropriate, the
person's parents or legal guardian or conservator agree that planned
services and supports have been provided, and reasonable progress
toward objectives have been made.

I think a lot of things about this line of code are interesting, both in light of this post and also in light of the requirements that no service can be discontinued without the agreement of the client or the opportunity to appeal. A tension between two statutory requirements, resolved through universal noncompliance.  But to the point at hand, I'd say that discontinuing services that produce no results is a good way of involving some little bit of natural selection into the process (in other words, a well-conceived ignored statute,) but you can improve on that by allowing agencies that achieve results more efficiently to capture some of the benefit of success.  This is likely the only way that excellent workers will ever be paid significantly better than indifferent personnel.

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.

Organic farming and row crops.

In some ways, the DDS system is the future of effective government, depending on entitled rights and an engaged private sector to serve the needs of a challenged population. The mission of the whole edifice is to sprawl, broad and variable enough that each person served can find their own access point to the help they need for their challenges and aspirations. An organic approach like this parallels innovations in the business world where individualization has proven more efficient in many scenarios than the standardization that the industrial revolution brought and maintained.

The culture of government, however, has trouble with risk and risk is synonymous with variation. So, having envisioned an ecology of support, the organs of government soon fall back to establish control and order. Instead of encouraging relatively unfettered innovation, the regulations develop over time to specify the types of service available and to constrain the freedom of the service providers, rather than specifying outcomes and allowing competing and co-existing models for delivering such. For example, if you compare the older regulations governing Independent Living Services with those governing Supported Living Services, their are significantly more barriers established in the latter. Consequently, individuals who would be classic supported living clients may receive Independent Living Services instead as a result of, perhaps, economic or health risks which result in sometimes leaving apartments to stay long-term with family.

Over time, the instinct at regional centers has often been to harden and sharpen the distinctions. For example, to deny any individualized living support or training to individuals who live with their families or in group homes, which often has the effect of limiting people to their current setting. The consequence has tended to be to regiment the people served rather than to liberate them.

Why transparency matters

Transparency may be the most underappreciated feature of a strong system. Every day system stakeholders experience the ability of bureaucrats throughout the system to stretch the letter and spirit of existing statute and regulation. Often, those innovations are flexible solutions to situations not foreseen in the development of existing law. Often the experience is of a misrepresented regulation for the purpose of saying no to a flexible or compulsory solution.

The more that DDS, Regional Center and Vendor actions are exposed to sunshine, the more likely flexible solutions will be applauded and inappropriate denials of rights will cost the decision-maker. At every level of the system from the legislature to the quality of breakfast in a group-home, people with disabilities benefit from the various agencies understanding that the quality of their work being widely known and understood.

I offer an additional point, my own theory. I do believe that control must be balanced with the organic process of policy-making. Because most decisions are made in the dark by people alone, each of whom most often prefer to be in control, I expect that the system of support for people with disabilities is massively out of balance on the side of rigidity. An open dialogue can massage that stiffness and restore some of the flexibility the developmental disability system in particular was wisely designed for.

The CDCAN initiative to enable journalism by system stakeholders is so important. The fact that anyone's actions may be the subject of a webcast marks a major change to the milieu in which professionals act regarding disability rights and opportunities. Along with the teleconferences which highlight the micro-effects of macro-policy, CDCAN is the largest part of a systemwide push for greater transparency and through that, greater accountability and better decision-making.

CDCAN is not intended to be, nor should it be the only agency expanding transparency. At the local level support groups, boards of directors, blogs (God help us,) and other networks have the opportunity to make transparent local and even individual policy-making and action.

A note about client and worker confidentiality. The right of the individuals involved in this system impedes transparency but also represents a crucial element of the dignity of the individual. Efforts to increase informal information-sharing and public awareness of what actually happens in the system need to consider the importance of privacy and privacy-protecting law. That said, two principles should be remembered: The freedom of the press is enumerated in the constitution and, therefore, no law or regulation can impede the right of people to seek information regarding public decision-making and to publicize the information obtained is superior to every confidentiality provision on the books. Second, confidentiality is the property of the person the decision regards, not the professionals participating. There is unlikely to be a legal offense where a person wants their story told.

Update: Chris Thompson has left a link to a site he writes with a partner on transparency as a communication tool. Click here to read about why transparency matters.

Money and Reform

Lately I've been getting crosswise of friends, colleagues and conspirators over my baffling opposition to better funding for our system. I thought I'd clarify to you, dear reader since I feel kindly towards you unlike those rascals. But, I do believe this as well: The gap between how the system functions and how it should is greater than the gap between current funding and optimum funding. Add to that the great truth of life and government: that money is the enemy of reform.

It's not so much that I believe rates are high enough, but that I suspect a lot of funding isn't helping people with disabilities. I don't know how much, but I further suspect that much of the wasted many is not otherwise neutral but harmful. Redundant people signing off on client's choices. Quality evaluations that serve no particular purpose but around which client lives and agency practices are disrupted. Fiscal controls which repeat other ones and serve as a break on the system's ability to respond to change, challenge and opportunity. Systems of accountability which can be safely ignored by participants but which, again, disrupt beneficial processes.

It's a funny thing to me: All the best advocates I've known, when near home complain about dismal behavior by regional centers, scurrilous crimes by vendors, the lack of challenge for success. The lack of punishment for failure. And yet, we arrive in Sacramento and face the legislature and administration and say "we need more money," not mentioning any of the problems that bothered us in our homes and businesses.

I do believe the following:
*Self-perpetuating boards implementing public entitlements was a bad idea and has produced predictable consequences.
*The fact that all information regarding the quality of support options is universally not just subjective but idiosyncratic and anecdotal produces inefficiency and limits rational choice well beyond what any end user or tax payer should have to bear.
*Some massive amount of creativity is squelched by fear-driven decision-making by people marginal to the life of the end-user.

If all this is true, then to focus on funding over reform betrays everything we claim to believe and everyone we say we love in this system.

Value Stream Management, Summary and Conclusion

The Lean model proposed through Value Stream Management offers moral excellence to the agencies serving people with disabilities. The Lanterman Act promises choice, integration, health and safety as outcomes of three billion dollars in funding to Californians with developmental disabilities. The statutes passed within the Lanterman Act, the regulations produced under the Lanterman Act and the policies and procedures of our agencies, however promise next to nothing.

The assurances that do exist fall into two categories. Caseload ratios, provider qualifications, records responsibilities and board membership standards are all process requirements which partly define costs but have no measured bearing on client outcomes. The outcomes promised and measured, mainly on Individual Program Plans (IPPs) and Individual Service Plans (ISPs) rarely get followed up on. In other words, quality is neither designed into nor inspected into this system.

Every professional working in the system and every client and family benefitting from it does so toward the purpose that people with disabilities live better, more meaningful lives of greater consequence to their communities. The accomplishment of that goal is a moral good. Any waste absorbing resources which would otherwise serve the goal of the system is an ethical taint on those who tolerate it.

Advocates frequently point to poor funding by the state and lack of responsiveness of regional centers and their vendors as the great evils suffered by people with disabilities, but I submit that the most plentiful errors depriving our clients has been the systemwide failure to account for and eliminate waste. Furthermore, as long as this is the case advocating for resources is hampered by our inability to assure lawmakers of what the benefit will be from greater investment, if any.

W. Edwards Deming, the statistician Total Quality Management guru famously argued that quality cannot be inspected into a system, it has to be designed in. At the end of the day, the most compelling moral challenge to the constituents of this system is to build in process which eliminates waste and improves quality. Until that happens, the contrast of client-centered values and labyrinthine process will remain an unfunny irony.

Value Stream Management, Perfection

The fifth and final step in developing a lean system or agency is the pursuit of perfection. Most of the inefficiencies in our system are the cumulative effect of years of making habits out of responses. In a system or agency that has followed the four preceding steps, it is likely that over time, persistent new forms of waste will inevitably develop. The result would likely be a magnificent, transformative improvement eroded over time.

The alternative to this is to continuously address waste through a permanent team. Value Stream Management was pioneered in Japan and two Japanese words are used to describe change in this context. Kairetsu refers to radical change and the expected result of a VSM transformation. Kaizen refers to incremental change. Kaizen teams are a continuous presence bringing representatives from all along the value stream seeking waste, either waste that was not recognized during Kairetsu or new waste that finds its way into the system later. The lean agency commits itself to a permanent war with waste.

The result, in industry, has been a massive reduction in cost at the outset, but also small, incremental reductions in cost forever after. When we talk about cost reductions within this system, the assumption is a reduction in quality. Remember that part of this process is to have the client define quality. Eliminating waste improves quality while reducing costs.

Value Stream Management, Pull Value

Traditional models of enterprise are based on production. The producer is at the center of process which also includes vendors and buyers. From the producer to the buyer, we can think of this as a process of pushing goods and services. The firm designs, generates, markets and sells its wares to an end user. The communication between producers and end users consists primarily of the producer convincing the customer that what is offered is valuable and the feedback from a potential customer who chooses to believe and buy or go elsewhere.

I'll argue that most of California's system operates on the push model. The seminal event in the availability of a service or support comes when an agency creates a service design and presents that to the Regional Center for vendorization. The Regional Center may then offer that service, as designed, to a client. Although some agencies (such as ¡Arriba!) submit minimal service designs with the intent that the actual service provided will be designed by the client, the system model is clearly designed according to the old industrial pattern.

In a lean system, this model reverses. The analysis, process and activity are all designed around the idea of pull. In other words, the end user defines the value. Instead of a series of suppliers beginning with miners and farmers and ending with a consumer, we look to a series of customers leading from the consumer back through the value stream. The macro process would look like this, there is a meeting at which the client describes his or her situation and what they want. The professionals attending that meeting would then be responsible for providing the support indicated to the client which they would seek from either their superior or an outside agency. They are now the customer pulling value from up stream. It's like The Lanterman Act only for real.

Value Stream Management, Make Value Flow

The next important concept in a lean agency is making value flow to the client. Basically, this means the identification and elimination of barriers, delays, redundancies and any other waste. Beginning from the customer's perspective, the parties closest to the client examine all that they do and need in order to create value for the consumer. Are any steps taken unhelpful or counterproductive. If so those steps should be eliminated, unless they are required by compliance. In that case effort should be allocated towards changing the requirement.

The next step repeats the previous one with a new customer. Now, instead of the consumer, the direct care worker (DSP) is the customer and those who provide resources to the DSP evaluate their activities, eliminating any waste of time, treasure, effort or energy along the way to providing the DSP what he or she needs to provide value to the client. As above, some waste will be immediately correctible and some will be in service of robust statute, policy or regulation. Either way, that waste (called Type II waste) is as bad as the correctible (Type I) waste.

To make an agency lean, these step should be followed not only for the entire heirarchy at the agency, but as far back in the Value Stream as can be observed. At each step, the purpose is to eliminate wasted functions. As the process goes on, it will be mapped in terms of tasks, not jobs. At each step, the influences causing Type II waste should be recorded for the purpose of advocacy.

When this process is complete, all the Type I waste should be eliminated and value will flow more quickly and efficiently from the finding source to the client. It should be noted that in this system, real leanness will have to change regional centers and DDS as well as vendored agencies.

Here's an opinion. I suspect this system has an absurd amount of waste and that a ridiculous amount of it is of Type II.

*****Second section

I received Spam as soon as I initially posted this. I don't like spam but haven't taken precautions against it because one option eliminates anonymous posting (although it allows a person to take a name not their own) and the other includes a verifier which could be hard for people with disabilities. How would you, dear readers feel about a requirement that you identify yourselves (as anyone or anything) in order to make a comment?

Value Stream Management, Identify the Value Stream

Apologies for my neglect of this site, now, where were we?

Once value is specified in terms of what the client wants, the next step in developing a lean system or organization is to identify the value stream. This refers to the sequence of actions that bring resources forward toward the end client. It includes everything the agency does, but also everything their suppliers do. In California's system, for example, the process of becoming lean would start with what the client needs and look at how the direct support staff provide for that. The next step would be to look at the both the program design and the supervisor and how each provide the needed resources for the direct support person to serve the customer.

Value Streams when looked at honestly are extraordinarily complex and long, and rarely confined within a single agency in manufacturing. Certainly not in this system. This does not mean by itself that they are wasteful or inefficient. The economist, Milton Friedman once used a cover photo on one of his books depicting himself holding a pencil. The point of the photo was the pencil which contained rubber from Indonesia, metal mined in Central America, wood from canada and graphite from somewhere else (it's been awhile since I read Friedman) and were assembled and sold in the United States for a dime apiece.

A rough example of a value stream might be as follows: A male Supported Living client is hungry so a staffperson cooks for him using food purchased by another staffperson with money delivered by a Supervisor. Those funds may have been given to the Supervisor by an agency comptroller who cashed a check with funds for several clients received from the regional center as the fiduciary for Social Security. On another branch of the Value Stream, the employee cooking was following a person-centered Individualized Service Plan (ISP) which authorized cooking and described any parameters to the meal. That ISP may have been reviewed by a supervisor and must have been also reviewed by a regional center employee, signed off on by a Program Manager and funded. Both the funds and the terms of approving the ISP were delivered to the regional center from DDS based on allocations and controlling statutes set forth by the California legislature. If the client was eligible for the Medicaid waiver, a second branch of the allocation and regulation process travels through the federal government.

There are three things that I believe can safely be said about the process above:
1) That it is an oversimplification of the value stream leading to a single client eating a single meal,
2) That it probably repeats tens of thousands of times per day in California, maybe a half-million times per year.
3) That it probably doesn't go smoothly every time at every step. Even 99% success reflects a lot of defects in a tiny portion of the overall community-based system.

Taken together, if the assertions above are true, there exists extraordinary potential for both improving the satisfaction of clients and reducing the cost of the system. Just in the preparation of meals. Just in Supported Living clients.

Note: Because demons have prevented me from updating this site regularly, I am adding a feed to the links. People interested in this site who have browsers with RSS capability can bookmark the link marked "Pay attention!" to be notified of updates.

Value Stream Management, Specify Value

The first step in Lean Thinking is to specify value: What will our whole process from the legislative appropriation through the client create, and what that should cost. At this step, original and comprehensive thinking are crucial. For example, in our system, we often treat the service provided as the outcome. I suspect that we think this way, because in our system, the service is, in fact, the last compensated part of the process. Sometimes assigning a value to the service doesn't seem like such a good idea in case someone compares the cost, but this is why we try to fix stuff.

I would suggest that in the system design, value is creatively and well described. We say that the system exists so that people with developmental disabilities can choose and experience lives similar to their non-disabled peers as fully integrated members of their community. To this we add health, safety and dignity at least in interactions with the participants in the system. This isn't very specific, but it is humane, measurable, creative and comprehensive. The current specification in statute of what that should cost is "whatever it takes" which may be unsettling to many taxpayers and politicians but it won't be me pushing for a hard number. It may be useful, however, that if Lean Thinking settles in that some rationale for costs may actually be useful in providing better lives to clients.

So we have three pieces of our value specification:
1. The outcome of the system is that people with developmental disabilities will live in a manner of their own choosing a life equivalent to that of a non-disabled peer as an integrated member of their community.
2. The client's experience of the system will be dignified, attentive and safe.
3. It will cost whatever necessary to meet the first two value propositions and no more.

That looks pretty specific to me, although we can debate how often those propositions are really carried out. I would contend that everywhere in this system that we are not conscientiously specifying value the implied value specification is this:
1. The outcome of the system is that people receive services of their choosing.
2. The client's experience with the system will comply with Regional Center policies and state regulations.
3. Costs will be in line with those incurred by other clients deemed similar.

So, I would say the system is relatively successful in specifying value but wholly unsuccessful in remembering or communicating the specification.

Value Stream Management, Introduction

This series of posts will propose a new concept of leanness from the one used currently in our system and outline a roadmap for getting there. This introduction will contrast the proposed definition to the one typically used and lay out the parts of the lean roadmap, which will make up the next five posts in this series.

The idea of leanness in a chronically underfunded system usually refers to underperformance. When we talk about how lean our agencies have become, we usually refer to things we feel we should be doing or be doing more of. My friends who run agencies might point out regulations they no longer comply with, a reduction in Quality Assurance activities, services that our clients need or want that they no longer offer, etc. The failure to perform key tasks is a predictable outcome of frozen rates and growing mandates, but it's better described with the word erosion than leanness.

I remember an old joke about the guy who lost 20 pounds of ugly fat when he was decapitated. That's a good metaphor for our concept of leanness. The usage in Lean Thinking refers to the elimination of waste. Waste can be found at three levels,
1. Activities and costs that do not actually generate value for our clients,
2. Activities and costs that could generate the same amount of value with less investment if done differently, and
3. Activities and costs for which there are substitutes that generate equal or greater value for clients with less investment.

I think most agencies serving California's people with developmental disabilities are about as eroded as they can be. I would argue that none, including the one I run, are as lean as they should be. Growing leaner is a process of increasingly and consistently directing dollars and energy into creating value for the people we serve.

So, the roadmap outlined by Womack and Jones follows the following process.

Part I: Specify Value, defining what needs are served;
Part II: Identify the Value Stream, recognize the contributors to the generation of the value specified;
Part III: Make the Value Stream flow, this step represents a radical reimagining of how work is best done with a focus on seeking and eliminating waste;
Part IV: Pull, which is a corporate analogy of person-centered support; and
Part V: Perfection, which institutionalizes a permanent and continuous process of improving steps I-IV.

So the next five posts in this planned nine-part series will look at each of the parts of Lean Thinking in the context of California's system of service and support for people with developmental disabilities.

New series of posts-Value Stream Management

Thanks to everyone who wished this site a happy birthday or blogiversary or whatever it was. The next series of posts, probably nine in all will discuss the benefits of Value Stream Management as a paradigm for reform of this system. The series will roughly follow James P. Womack and Daniel T. Jones' book Lean Thinking.

There are a few reasons that Value Stream Management (VSM) is an attractive model. The first is that the concept of "Let the customer pull value" is essentially a business-world equivalent of person-centered thinking. The second is that the paradigm defines efficiency in a way that I find much more engaging than the normal way that we discuss the idea in this field. Those of you who have known me for awhile know how pessimistic I am that our system will ever be fully funded to operate under the current structure. The real hope for a better system falls to redesign and reimagination. A third reason is that VSM promotes honesty and transparency regarding the possibility of doing things better.

A Disclosure: I am currently working with partners to develop an instrument for applying the concepts of Value Stream Management to our system. While I certainly honor objectivity, I should admit that I both have already made up my mind as to VSM's value and hope to profit from its application.

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 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.

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: 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.