Friday, December 30, 2005

About Comments

In order to prevent disruption of the comments on this site by spammers and taggers, I am disallowing anonymous commentary. N.B. This does not require someone to expose their actual identity. If you wish to comment on this site without disclosing who you are, you can establish a free account by registering with blogger. These accounts do not require anymore information than an email account which can be blocked from view in the "Edit my profile" section of your new blogger account. I apologize for any inconvience.

OK, I got a bunch of spam on this very comment so now there is a verifier requirement. I think it may be difficult for people with certain disabilities to use, so if you wish to comment and have trouble, there is an email address connected to my profile and I will be happy to post comments even if I disagree with them. No profanity, though, please.

Monday, December 05, 2005

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.

Thursday, October 13, 2005

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.

Wednesday, October 12, 2005

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.

Thursday, September 29, 2005

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?

Friday, September 16, 2005

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.

Monday, August 01, 2005

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.

Friday, July 22, 2005

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.

Friday, July 15, 2005

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.

Wednesday, June 22, 2005

Bouncing baby blog


Happy first birthday, little Developmental Disability System Reform. You're number one on Google and number one in our hearts. Back to the mine!

Friday, June 17, 2005

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.

Thursday, May 19, 2005

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

May 18, 2005


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.

Monday, May 16, 2005

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.

Monday, May 09, 2005

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.

Friday, May 06, 2005

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.

Saturday, April 23, 2005

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.

Monday, April 11, 2005

Earned Value Analysis, Part II

OK, maybe I can make an early wrap-up of this wonkery. There are many important ways that Earned Value Analysis can be used to measure how work is going, providing, where necessary daily feedback to a client, a service provider, a regional center or the state.

One of these compares Earned Value (EV, the extent to which progress has been made against a goal) to something called Planned Value, the extent to which progress should have been made by the same point. Remember that Earned Value can be broken down into single steps, or even discrete portions of single steps. The ratio produced by dividing Earned Value by Planned Value allows an individual client to measure the success of their program, providing advice to the client or the service provider as to how successful their supports have been to any given point in time. For regional centers and the state, this ratio aggregated provides a comparable measure for external evaluation of a program or vendor. A high individual or aggregated ratio (in comparison) demonstrates that a program has been effective in assisting a client with their purpose.

Another important metric (EAC) compares EV with Actual Costs (AC, it means what it says.) This is a measure of efficiency which provides feedback to the agency as to whether it's service plan is being implemented effectively. This provides a useful metric for a service provider to identify supports which may have problems in effectiveness. Individual support plans which have an unusually low ratio of EV over AC are likely to have problems which have not been identified. For example an employee whose work typically has an unusually low EAC is a good candidate for additional training or discipline. Another example, an individual support which produces an especially low EAC vis-a-vis others in the same program with the same staff would be a good support for review as to whether there are unnoticed factors adversely affecting performance, such as the learning style of the client or environmental factors.

Sunday, March 20, 2005

Earned Value Analysis, Introduction

First, thanks to Dr. Strully for holding me accountable to something I don't get paid for. This post is dedicated to your carping.

In my previous post, lo those many weeks ago, I promised to write later about specific methods of better accounting for value created through our agencies. In this series of posts, I'll introduce an accountability discipline that I believe could be adapted successfully to improve our system. WARNING, this and the next few posts are for major wonks only.

Earned Value Analysis (EVA) is a discipline developed by project managers. In EVA, the value of a goal (deliverable) is agreed upon, a date set for completion, and, often, a standard for quality. When accomplishment of that goal requires that several objectives be met on the way, similar standards are set for each component process, with the sum of the parts equal to the whole budget.

Along the way, other related metrics (which I'll introduce in later posts) can be used to determine whether the methods employed to reach the goal are working so that there is feedback detailing how the plan is going and where the problems, if any, may lie. Between projects (Service Plans,) vigilant recording of how satisfactorily goals were reached leads to both the refinement of methods for predicting value, planning for unpredictability and identifying methods, policies and agencies which are notably (in)effective at helping individuals involved. Furthermore, because the values of projects are agreed to in advance, it offers a more flexible, client-centered alternative to accountability than a system predicated on tallying aggregated client outcomes. In short, EVA can be developed into a learning model of accountability that more effectively employs resources to help people with disabilities live according to their preferences, participate more fully in their communities and remain healthy.

More thorough and boring details will be provided in the next few posts.

And thanks again, Jeff. I needed a kick.

Monday, February 28, 2005

Risk and Marginal Benefit-a new service plan

Today is my jet-lag recovery day. On the Doug is Goofy scale from 9 to 10, I think I'm at 9.91 this morning. Here are some thoughts about system reform from my vacation (Yes, I am that sorry.)

One concern I keep coming back to is the way the system is constructed to encourage innovation, individualism and creativity except the system of "accountability," which strongly discourages, um, innovation, individualism, creativity.

My sense is that the system as a whole is inefficient and ineffective because the mission is so expansive but the process for reward and correction is so constricting.

So I would offer these suggestions"

1. Service planning and evaluation should be specifically related in the regulations.
2, Service planning should distinguish between goals which allow for a great deal of variation in results (risk-seeking or risk neutral,) goals which should be pursued with some specificity while allowing for some defined variation in acceptable results (risk vs. reward) and goals which should be strictly defined in terms of outcome (risk averse.)
3. Service planning should include a hierarchy of benefit so that success can be usefully evaluated not in terms of box-checking but in terms of how the client experiences life and how the community experiences the client. On my vacation I was thinking about adapting Earned Value Analysis, a tool used in project management for service evaluation. I'm sure I'll write something fascinating about that next time the Doug is Goofy Scale falls back to 9.5 or so.

Monday, February 14, 2005


To the multitudes:

First of all, let me wish all my friends of easy virtue a happy Valentine's Day.

I kind of have the feeling this page is hard to follow for the few Californians who don't check every day. At some point in the near future, I'll try to learn how to categorize the entries by topic but for now, I'd like to post the overall reform agenda that I've written about.

The overall theme is that cost-effectiveness can be client-centeredness and visa-versa. Oh, and good.

I have written about possible system reform. The general idea is that the system would perform better at lower cost if the system were better disciplined by market forces and higher quality, more widely available information. These are the regulatory changes I'm interested in and advocating for:

1. Higher quality quality management, through a broad and active focus on outcomes determined from improvements in clients' lives and a learning model of evaluation.
2. Available self-direction/self-determination, with appropriately intrusive protections to broaden the role of clients and families in determing what supports will be most contructive.
3. Regional Centers should be increasingly accountable to communities and the state for both results and money. Boards of agencies that implement state mandates should be accountable to the greater community.
4. Provider rates should be based more on value, less on cost.
5. Information about the costs, outcomes and values of every agency and individual funded in this system should be reported in an accessible format to expand the ability of clients and their families to determine the most appropriate support and provider. The ideal being that service coordination becomes less prescriptive.

I have also written about the dialogue evolving in our system:
1. Everyone involved in the system should be linked to each other and to other people with disabilities for the purpose of providing a true dialogue and a combined voice. The California Disability Community Action Network (see link on left,) continues to be the best vehicle for this conversation.
2. Clients and their families as a group should not be spoken for by Regional Centers, Vendors, Employees of either, or associations of these. No professional group should seek to own or control "grassroots" advocacy.
3. We're basically all on the same page. Asked In public, more individualized, better funded, more efficient, and effective support for people with disabilities would be the goal of nearly all clients I've ever heard from, their families, staff, vendors, regional centers, and pretty well everyone I know in this system. I genuinely believe most of us mean it. I don't believe that people of ill-will are important enough in numbers or authority to be worth considering. All the reform to come can be a healthy negotiation among friends. Lighten up everyone, you're doing God's work and I'm sure the devil will forgive you for it.

Wednesday, February 09, 2005

A New Day- Summary

So, here are some reflections on the ARCA conference, starting with an overview (The previous 8 posts are notes from specific sessions:)

The conference was timely, and the content excellent and diverse in terms of the perspectives of experts from around (mostly outside) our system. Asking Peggy Collins to present a legislative perspective while Kim Rucker presented a client perspective on the same panel was especially inspired and made for an interesting contrast comparison with presenters from outside our system. That panel really clarified both the relevance of nationwide thinking and the criticality of local experience and perception. Julie Jackson did a terrific job in what may have been her public debut as Chief Deputy Director and I overheard many comments from my fellow wee folk reflecting that they looked forward to openness and/or honesty as characteristics that Julie brings to her new position.

So for all of those reasons, Kudos to ARCA and its conference committee for focussing on an important and actionable topic, and for recognizing well voices that our community needs to hear from.

On the other hand, my impression is that some opportunity was let go for now. Disappointments include the fact that so little dialogue was allowed by a dense schedule of presentations. Also, people with disabilities, their families, direct-care staff and service providers were highly underrepresented. There's an unmistakeable irony that the whole point of the conference was that currently available supports are overly prescriptive, unnecessarily limiting and unfairly unaccountable while the conference itself seemed organized around the principle that our community ails from not listening to the grown-ups. Did anyone get a conference evaluation form?

If anyone missed the irony, as I mentioned before, the lunchtime speakers on Tuesday described a perspective that the system is lazy, greedy, uncreative and divisive and that the responsibility of the Regional Centers for this state of affairs is in being overly tolerant. Those speeches also communicated pretty effectively that at least the speakers are contentedly out-of-touch with the community.

To the extent that the two RC directors at that session were intended to represent their peers (and the context suggests that they were) a lot of people will have found support for the idea that the Regional Centers are essentially arrogant and aloof. Many people who have been working for years to better serve clients will conclude that the purpose of the conference was to usurp their effort. As unfair and generally untrue as those messages are, they sure were sent.

A message for those who need it. Just over a year ago, the California Disability Community Action Network began successfully to connect people from this community to speak for themselves. The community has demonstrated that it can speak. About a week ago, the Vendor Advisory Committee of East Los Angeles Regional Center unanimously passed a resolution communicating to the board its willingness for and interest in eliminating barriers to person-centered supports. Countless other events sponsored or led by vendors, people with disabilities, family members and worker organizations sought to innovate the system towards a more reflective, responsive and cost-effective system. Generally, one aspect of these conversations and this conference has been the sense of each group that it is leading while everyone else stands around vainly defending the status quo and their own empires.

This conference was important, valuable and in many ways reflects the intelligence and determination of its organizers. It was an important milestone but the start of nothing. The events which recognize the unity of the entire community around an evolving, improving system; and which elevates dialogue above presentation will be the true dawn.

Tuesday, February 08, 2005

A newish Day: Workshop:

Topic: Organizational change/Converting Structured Services to Individualized Supports
Pat Rogan,
Scott Shepard
Dan Heldoorn
Yo Bestgen

[I missed the first part of this session ranting]

Strategies to address barriers:
>Clear Mission, vision and values
>Strong Leadership from within
>Stakeholder Involvement
>Ongoing staff education and training
>Flatten the organizational structure
>Person-Centered planning
>Team work

Other lessons learned
-Import expertise
-Change the agency’s image
-Pursue creative, alternative funding
-Unload sunk costs
-Terminate facility admissions and backfilling
-Demonstrate and celebrate success

Outcomes of Changeover Process
-People with disabilities were happier (90.5%)
-Better quality services (83.3%)
-Better community and employer relations (69%)

Organizational Restructuring
>> Staff roles and staffing patterns
>> Job descriptions and classifications
>>Authority lines/hierarchies
>>Role of Management

Human resource practices must change too
-job descriptions
-recruitment and hiring
-staff development
-feedback system
-pay and compensation
Q & A
Q: [I missed it, sorry Y]
SS: It may be heresy but money isn’t everything

Q: Do provider's get paid more for having flatter organizations and more plugged-in workers
A: No.

Q: Implied in these presentations is the assumption that real jobs lead to real lives and regular jobs lead to regular lives.
SS: Where do you live, where are you at?
Q Cont'd: I've seen a lot of work put into community-building, but it may not lead to the promised land.
PR: Job does not mean regular life.
Q: How are you measuring "regular lives?"

general conversation.

Q: We know the barriers and the strategies? Many of us don't know where to find them.
PR: Share what others have learned.

SS & DH:
Dan's Journey: The story of DH, a student at college of the canyons and employee at Orchard Supply, a person with the label of autism.

Staffing patterns: Part-time to full-time, Mix clients and staff.

Do we have a shared vision?
Building partnerships supporting choices (DDS)
AAMR and ARC new mission statements
Choice, direction, take risks

Person-centered services doesn't mean 3 or more service options with different staffing ratios.

[I missed some]

Agencies should develop effective and better ways to listen to the people they support.
Smaller is better.
All agency staff provide direct services

Q: What roughly is your budget for serving 20 persons?
SS: Budgeting is one person at a time, generally matches a residential support cost. IHSS monies blended in.
Other Person: $1200-month to $9000-10000

Q: What would be a typical day for individuals with higher needs who aren't interested in employment?
SS: We look at community college, parks and recs, volunteer activities.

Q: How is the searching for homes for clients?
SS: We have some situations where a roommate pays a little extra to use the garage or etc.


[My battery is about to run out.] Sorry, Yo.

A newish Day: The tailspin

We just had the lunch session. On the positive side- the caesar salad, poppyseed rolls, chicken with shrimp and cheesecake were alright.

On the negative side, the speeches were sibgularly (or doubly.) The speeches were extroardinarily patronizing and, in my mind, prove how far some leaders are from listening. Our whole community is the choir, and they were preaching the fire that awaits.

They may be right about what's happening and they are right about why, they're also part of the problem with the rest of us. The people who don't want change and who want to portray regional centers as the barriers to change can quote liberally from those two speeches. They also might point out how limited the opportunities were for input. If we're going to put petty grievances with each other aside then listening to one another, allowing each other as partners and believing in each other are fine places to start. Patronizing, dismissing and talking over are not.

If either speaker had been paying attention, they couldn't have spoken from the perspective on display today.

My review: Safe harbor was granted at lunch to those who oppose change and those who seek change were marginalized. I give it an F. 

P.S. I haven't seen any conference evaluation forms. For all the good content, it's pretty clear that input and dialogue were not planned outcomes of this conference. At least not at the conference.

The next new day: Second Plenary

Topic: Preparing People with Disabilities to Perform Meaningful Work in Integrated Environments
Speaker: Lou Brown, Professor Emeritus, University of Wisconsin

Talking about two populations. People with severe handicaps and people

President Bush's Commission.
If you have the label of developmentally disabled or cerebral palsy in Florida you ar 85% likely to be unemployed.

Referrrals to:

Skill training program?
Community College? "A stay of execution"
Segregated Workshop or
Sit at home

What happens to people with disabilities when their parents pass or become unable to care for individual.

Entitlements, discretionary program, therapy, paraprofessional, door-to-door service, and then at 21, individuals want the same things.

Academics? Algebra, Canterbury Tales, customs in foreign lands.

As adults: Sex, money, privacy

Replace clients in workshops with a wax replica.

Integrated work environment:
General environment, use natural proportuin
No more than two with disabilities in the immediate work environment.
Must work within sight sound and touch of coworks without disabilities.

[This is too funny]

Chamber of commerce definition of work: "If she doesn't do it I have to pay someone else to do it."

"Sorry. Intelligence is not distributed equally across people. If you knew my mother-in-law you'd understand why I think that."

Work, community and citizenship diploma. This is the goal.

If the goal is to keep unemployment high? What could we do?
Regular education with a 1:1 paraprofessional. Make sure they're exposed to abstract academics. Eliminate social promotion. Lower age at which you can quit school. 2000 kids quit school because they couldn't pass the high school entrance exam. Put more people in special education. Segregate schools and classes. Hire teachers with emergency credentials. Confine a structure to school grounds. Hide disability, don't talk about it.

What does job ready mean?

If the goal is to increase employment we can:
Use a portfolio of the skills the child we need. Teach to do those things in the real world. Teach to be nice, work hard, be reliable, on-time. Don't do for someone what they should be doing themselves. Testimony to their competence, talent and hard work. If you are employed 20 hours per week with benefits the last year of school, chances are you will be employed all your life.

Get employers to open the doors by:
-Generate work training and employment options
-job analyses
-match worker with vocational setting
-Provide authentic assessment (in the real world
-Shift to natural supervision-
-Arrange support needed indefinitely

Tools for finding the jobs:
> Parent dream lists- when do you think your child will leave school, where would you like your child to work?
> Environment, activity, social needs
> Personal preference
> Corporate commitments
> Personal relationships
> Job development circle
> Vendor list
> Canvassing
> Quid pro Quo

Easy part is finding the jobs. Hard part is getting school personnel off-campus to introduce students to real world experience.

Job Analysis:
-What work is being done?
-Who is doing it?
-Can we do a part?

Horizontal enhancement and vertical enhancement
Vertical: Greater complexity. Horizontal: New things, similar complexity.

"The more people we give chances to, the more amazed we are by what people can do."

Lesson: Rather than giving many people disabilities access to a single work environment, give each person with disabilities access to many.

The next new day: First Plenary

Topic: California update: Health and Human Services
Speaker: Julie Jackson, Chief Deputy Director, Department of Developmental Services

"It's hard to be representing Yoda" (Cliff Allenby)

"We need to do this more often."

1. The environment in Sacramento:
2. Major Initiatives and Issues

1. Fourth year of a budget "crisis." The economic environment affects everything in

Cost Savings
Cost Avoidance
Cost Containment

Cost avoidance: Closure of Agnew's Developmental Center.
Cost Containment: 4-7% DDS population growth. Expenditure growth 10-15% per year. We're no longer considered a little fish. It took 20 years to reach a billion dollars, five more years to reach 2 B. Three years after that we're at 3.3B

'05-'06 4.7% increase in dollars. Metaphor used in department "Three-legged stool" - Eligibility, Utilization, Rates.

25 years of cost-management through rates.
In 2001, eligibility was altered
2001-2003, utilization through POS standards.

Frozen rates and resource development-Temporary measures.

Success in Federal Financial Participation. FFP has doubled over three years. Recently succeeded in additional $20Million for targeted case management.

Growth in autism, 60% of intakes are full-blown autism. Majority of caseload is under age 18. People with autism tend to be more costly to serve.

Medi-Cal redesign. "You need to keep on top of Medi-cal Redesign." Expanding medical managed care, which will deeply affect people with developmental disabilities. Cap on dental services.

Long-term care integration initiative: "Three counties to begin with, San Diego, Orange, Contra Costa." A regional center system for medical.

Medicaid Modernization Act Part D, for people who are dual-eligible will have to switch to Medicare. Will impact, not sure how. It will happen this fall. We're going to do everything we can to get information to people to prepare for the change.

Cost Containment is about flattening the rate of growth, not cutting.

CA will be submitting a self-directed services program for both Medicaid Waiver and state-only. There are still things that we're working hard on. How to balance the little red wagon of federal requirements with the desire for choice.

Significant policy: Closure of Agnews. Significance cannot be understated. In the past, closing facilities has primarily been a matter of consolidating institutions. In the case of Agnews 80-85% of Agnews clients will be placed in the community.

AB2100: Approval from administration on affordable housing for clients. Liked the concept of "Buy it once, own it forever."
Family Teaching Home model. Up to 3 individuals in a home, Designed for Bay Area proposal but available statewide.

For people with stable but enduring medical needs, proposing a new model to be licensed by Department of Social Services with montoring and credentialing by DDS/Regional Centers. Will be waiver-billable. It's a pilot with limits (120 people and homes.) Independent evaluation.

Another major policy: Use of state Developmental center staff in transition period to allow up to 200 state employees to transition to either provide training and technical assistance or as a last resort until a new provider could be set up. "Very gutsy policy."

Will be legislative proposals on the previous two policy initiatives. Hearing on February 16.

Quality Management (QM:) New CMS initiative (quality framework,) developed a conceptual framework for QM. "I like the quality framework that CMS did." Will begin work on establishing outcomes and expectations based on the values of the system. For vendors, DCs, regional centers and the system as a whole. Apply indicators and develop IT systems to report. Still a conceptual design.

Two comments: I have really enjoyed being here. We really need to pull together as a family. We have to have you. We are a system. As a family, there are sibling rivalries. Look for leadership for a new era. We have to find a next generation of management and leaders. I want to sit down with a delegation of our system to talk about what we're going to about leadership.

Q: The usual about we need better rates.

Q: What are the criteria for the 900o or so people who will be eligible for self-directed services waiver?
A: I don't have the specific criteria which will be available in a couple of months. It will be voluntary.

Q: You mentioned the rise of autism. Has DDS considered asking for more money for Doctors for people with autism.
A: The numbers are real, we don't know why. There has been some significant monies coming into UC Davis from the CDC for studies of why autism is rising.

Q: The medical and IHSS, how that will be affected for people who live on their own.
A: I'm not working on IHSS, but administration proposes state portion of IHSS to be lowered in the hope that Counties will pick up the slack. Hah hah. (Or, MWAAAAAAAAHAHAHAHA)

Q: Will people have to choose between regular MediCal and privatization. Is that correct?
A: In specific counties, the plan will be to enroll everyone in managed care. You will have the right to be seen by a Doctor. Federal MMA, part D. For people who are MediCal and Medicaid eligible. Those people will have to get drugs through Medicare plan.

Q: For people like me who have no medical insurance, what will you do for us?
A: I would have to know your individual case.

Q: Q? Q? What is the action plan for unfreezing rates and unfreezing resource development.
A: The department as part of the administration works within the administration to seek funding. Once the budget is released we are the administration.

Q: Can you tell us anything about the administration's plan to tap special needs trusts?
A: No, thank God.

Monday, February 07, 2005

To Anonymous (February 7)

The comment posted anonymously to the post "A Newish Day: Lunch" is fascinating. To the person who commented there, thank you and I'd love to have that point explored more fully. So- an invitation- if you would write a short essay about your concerns and email it to me, I'll post it on this site. If you wish, I can invite someone from DDS who's working on the new waiver to respond, and the community can comment as you have. As I mentioned in an earlier, I'm excited both as a provider and a family member about Self-directed services, but I'm also concerned that not enough viewpoints were taken into account in the development of the waiver. To the small extent this site can help, I'd love to support some of the dialogue that should have happened already to take place.

A newish Day: Workshop:

Workshop Title: State Policy Initiatives to Facilitate Individualized Supports:

Kim Rucker, Valerie Bradley, Bob Gettings, Norm Davis, Peggy Collins, Judy Wallace-Patton

VB: Self-direction grew from family support movement, personal care assistance and moving people with disabilities moving into the comminite, self-determination movement.

Basic Goal of SD: Affords people opportunity to direct funds

1. Individual budget
2. Person-centered plan
3. Supports are directed by individual
4. Responsive and appropriat quality monitoring

Community services have historically been provided through private mostly non-profit agencies.

There is a delicate balance between risk control and choice

Increase flexibility, more control
Possibility of real reciprocal relationship with staff

Isolation of provider and individual
Maintaining energy, competitiveness, competencies
Oversight of provider quality

Basic qualifications, skills and competencies
-Some level of education/age requirements
-Threshold competencies

Person Centered Plan
-Identify needs for support, risks
-Determine Individual and family competencies
-Review person-specific competencies
-Determine degree of monitoring and the planning process

QA safeguard strategies
Case manager (broker) is crucial as link to traditional/professional system
Ongoing monitoring
Educated group of families and individuals with disabilities

Arizona has done a lot of work around safeguards including certification, background checks, licensing, core training

To do SD-
>Monitor outcomes
>Look at QA processes to determine which have the potential to be:
used consistently
reliable and valid

2:21 Bob Gettings: State Innovations

Quality Oversight and Improvement:
Massachusetts Quality Management System: recently released a system-wide QA report that summarizes data gathered from a variety of sources and supports. The report summarizes the results of two years data. 64 measures in 12 Outcome areas: health, protection from harm, safe environments, human and civil rights, protection of rights, choice and decision-making, connections, achievement of goals, work and qualified service providers.

Other state reports/resources:
Annual Report of the Vermont Division of Developmental Services
Pennsylvania's Incident Management System
New England Quality Collaborative

Promoting Inclusinve Practices
Resource: The Community Living Eschange Collaborative (CLEC), a CMS-funded activity is hosting an interactive discussion among states around inclusion of people with disability. Changing communities rather than changing individuals to promote inclusion.

Minnesota has just gone through a process of rethinking individual budgets. New individual budgeting methodology based on characteristics of individuals to try to predict needs.

Support Brokerage and Case Management Services: Minnesota has reconsidered case-management in light of SD. Flexible case management to foster more independent choice.

2:41 Norm Davis
"The Price of Self-Determination"
Three conditions:
Fairness & Equity, Redesign
Predictable and stable funding

Predictable and Stable Funding:
Who is "Self"
>>Circles of Support, Redefinition of family & guardian

What is "Directed"
>>Cooperative purchasing, micro-boards, cottage industry, small business development
>> Transition Savings Plans

>>:Life Coaches
>> Community Guides
>> Inclusion fees [?!?!?!?!]

Florida, Delaware and Montana
-Market Analysis
-Collect cost data and service and utilization data
-cost drivers
-individual needs assessment tool
-Standarizd reimbursement rates
-Integrate self-directed services tools

Look at cashflow for providers, net wealth, sustainability

What do people buy?
Not group homes or day programs
Staff time,
-personal support
-training and guidance
-therapies and nursing

People use similar amounts of services in very different ways

Personal cost factors (in decreaseing statistical significance)
Age and Family Situation
Community inclusion
behavior supports
health and wellness
current abilities

Dynamic pricing necessary

3:01 Judy Wallace-Patton and Kim:Rucker- San Diego's SD advisory committee
JW-P Brief history of the pilot projects, where they started
Each pilot used different standards for eligibility and implementation.
San Diego excluded children under age 3, random sample with subsample by age.
Substantial diversity by living situation and diagnosis
[I'm missing the next, oh, five minutes]
Challenge to make payment work.
Lesson: When we talk about quality indicators- keep them as close as possible to people and families.

KR: Experience of self-determination client
15000 consumers but 30 self-determination
Good quote:"You can have self-determination within the traditional system."
Recognizing that self-determination is primarily an internal condition with an outlook.
"You have to have a way of thinking that is within your budget and outside the box:

[Lightbulb moment- Norman Kunc and Kim are both saying that the adaptive, problem-solving skills that people with diasbilities have are the reason self-determination can be more efficient than the traditional system which is directed by non-disabled people.]

"Ask us what we think is best for us. We can let you in or keep you out."

3:20 Peggy Collins:
What's happening in Sacramento vis-a-vis non-traditional services
California finally has an Olmsted advisory process.- Chesbro agreed to stay in the process as long as its moving forward.
Olmsted presents an opportunity to focus across systems, across people.
Olmsted can move faster than state departments, evolve faster.
Lynn Daucher has a bill to require meaningful transition planning
Chesbro will introduce a bill.
DDS is where the big ticket items are
Agnews closure is huge, 10 years after the previous Camarillo
Building community infrastructure, new models are being developed to move people from DCs into homes, not ICF's.
Slef-directed services- worry about the fast growth. Initially legislature was careful that the initial Regional Centers believed in it. Now it will be involving RCs that don't embrace the concept and will alarm stakeholders who are more comfortable with the old way.
Rate standardization. We (the legislature) don't know what that means. Match expectations with what we are paying people.
Quality Management is important, to measure programs against outcomes. Hopefully not creating a QM system that is overly bureaucratic and punitive.
POS standards are now "common-sense cost containment strategies" Prospects dim in legislature.
Legislature is interested in feedback on how FCAP is going.

In other departments-
DHS Medi-Cal reform, very important for DD system although we are not always at the table. Expanding mandatory managed care. May be good for the general Medi-Cal population but concerning for people who need specialists.
IHSS reduction could be devastating for DD clients.
Deparment of Mental Health: What would happen if there was money in system to do real planning, intervention and development of improved system. $800 million averaged over five years. Statewide commission. Many DDS clients are also MH-involved. Chance to see how well this can work, shifting control out of Sacramento and into local hands. Very exciting (Prop 63). Look at changes in MH for good systems.

There are more innovative options on the table than there have been in a long time. It can all go South, so its scary. track legislation, agendas, etc. Public Hearings will begin soon. Lots of'em.

"Change is inevitable. We can control what it looks like if we use our voices."

3:43 Q & A

Q: Is there any information or studies around how to create quality incentives?
VB: Expansion of concern about competency of direct support professionals. Competency-based certificates in Ohio and Kansas. Use of "portfolio" rather than education. UMinn- college of direct support, on-line curriculum for direct-care staff.
Quality Mall- a resource for person-centered support.

A newish Day: Lunch

Lunch was chicken salad and chocolate cake. It was OK.

They Screened "Normal People Scare Me," a short film by Taylor Cross, a teenager with the labels of "autistic" and "high functioning." Way better than the food.

A newish Day: Second Plenary

Speakers: Bob Gettings and Valerie Bradley
Topic: Restructuring Long-Term Supports for Individuals with Developmental Disabilities: A National Policy Perspective

11:06 Bob Gettings (BG,) a discussion of factors motivating the reassessment of Medicaid policy, assess the prospects of alternative proporals and place them in CA-DD context.

BG urging DD stakeholders to craft their messages within the context of broader reform strategies.

"Medicaid reform could not and, in my mind should not, be the be-all and end-all of [system] reform."

"Simply being oppositional, in the current context, may not be enough."

Five Alternative Medicaid Reform Strategies
1. Capped Entitlement (Block Grant)
2. Federalize Services to Dual Eligibles
3. Strengthen State Cost Containment Powers
4. Emphasize Cost-Efficient Service Delivery
5. Continued Gridlock over Medicaid Policy

Block Grant:
>>Shift burden to States
>>Most States would be unable to maintain current eligibility and benefits (cost-cutting by proxy)
>> Impact on DD services uncertain [And, in all likelihood, protection of DDS services might suggest losses in other programs serving people with disabilities]

>>In theory, states would achieve substantial savings; many savings likely returned to fed. treasury.
>>Exacerbate Federal Deficit
>> Two-tiered system of DD benefits, more complication

Strengthening State Cost Containment Powers
>> Differences among state Medicaid programs further accentuated

Implications of Emphasizing cost-effective service delivery methods
>> More tightly managed set of benefits [?] and stronger emphasis on outcomes [!]
>> Properly structured, this approach could make it easier to promote individualization and consumer direction [slef-determination]
>> Challenge many traditional operating assumptions and, thus, be opposed by a variety of existing stakeholders
>> A variety of tough system design choices would be required

Implications of continued legislative gridlock
>> DD systens are likely to be buffeted by intrastate initiatives to contain the growth in Medicaid Outlays.
>>> Potential threat of centralization and less DD system management autonomy
>>> Possibility of reallocating dollars among programs, purportedly to achieve greater equity.

11:35 Valerie Bradley

There will be a national conference in DC in September co-hosted by several national agencies. Urges advocates to attend. No data yet on how to enroll.

1. Historical Overview of CMS changes
2. Antecedents for changes in CMS expectations
3. Changes in management and oversight of the waiver
4. Implications for States.

Standards are changing:
"Better than the institution" no longer adequate
Are we supporting positive outcomes
Is there Quality Improvement
Changing state role
Changes in experiences and expectations of families and people with developmental disabilities.
Moving away from prescriptive standards to individualized risk management
Consumer and family participation in oversight [I wish this were a better description of CA's system evolution]

GAO found problems in HCBS (medicaid waiver, see previous posts) services around QA systems

Quality Focus Area
>Access to Services
>Providers are available and capable
>Safeguards protect people
>Support for people exercising rights
>Personal outcomes and satisfaction
>system monitors itself, uses data to improve outcomes

New Approach to HCBS waiver-writing- New requirements as of this year
>>>States must build quality and self-direction into the design of their waiver application
>>>States monitor individuals/solves problems
>>>States collect and analyze data for trends and patterns
>>>States change policies, practices and resources based on analysis
>>>States report Quality Management (QM) activity and results to CMS and the public
>>>CMS maintains an ongoing dialogue with states and looks for evidence of state oversight

> Individuals and families can obtain information
> Intake and eligibility determination processes are understandable, user-friendly and assistance is available
> Referrals for people who need services but aren't HCBS-eligible
> Individuals given infornatuin to exercise choice, services initiated promptly

Person-Centered practices:
>> Services planned and implemented in an individualized manner
>> Plans address the needs for HCBS, healthcare and other services
>> Information and support is available to help participants make selections among service options and providers
>> Participants have the authority and are supported to direct and manage their own services to the extent they wish.
>> Participants have acces to and assitance with obtaining and coordinating services
>> Services are furnished in accordance with plan
>> Regular, systematic and objective methods are used to monitor the individuals well being, health status and the effectiveness of services
>> Significant changes in the person's needs promptly trigger modifications to the plan

Enough qualified providers
>>> Sufficient providers that demonstrate capacity to serve

>> Health risks and safety assessed and interventions identified
>> The safety of the paricipant's living arrangement is assessed, risk-factors are identified and modifications are offered to promote independence and safety
>> Safeguards are in place to protect participants from critical incidents and life-endangering situations
>> Behavioral interventions are subject to rigorous oversight
>> Medications managed effectively and appropriately
>> Safeguards in place in the event of natural disasters/ public emergencies

Respecting and supporting rights
Participants are informed, supported and receive training to
-exercise their rights
-exercise their decision-making authority
-exercise their medicaid due process rights
-register grievances and complaints

Self-direction supports
-Conduct criminal background
-Assist participant to identify/recruit staff, verify qualifications
-Provide training to participant in staff supervision, doocumentation
-Receive and verify staff time record
-Verify that services are within approved limits
-Operate a payroll system for staff compensation
-Submit medicaid claims for services furnished by participant-employed staff
-Arrange for emergency back-up services as necessary
-Notify appropriate entity concerning service provision problems or issues that require attention
-Assist participant in addressing staff issues or problems that require attention
Assist participant in addressing staff issues or problams including termination

Good Outcomes and Satisfaction
>> Participants and family members are asked about their satisfaction with services and supports
>> Services and supports lead to positive outcomes for each participant

Quality Management System:
>>> Systen engages in systemic data collection and analysis of program performance and impact
>>> The system supports participants of diverse cultural and ethnic backgrounds
>>> Participants have an active role in program design, performance appraisal and quality improvement activities Financial accountability is assured; payments are made promptly in accordance with requirements

Quality is your friend:

12:00 Questions
(skipping some)

Q. Does CMS consider generalizing outcome measurements from community-based services under the HCBS waiver to more institutional settings?
VA: I don't think so
BG: There are limitations in federal law from doing that [for now]

Q. One of the things we're seeing a lot of is turnover rate among front-line staff at providers [Yo! you didn't find turnover at ¡Arriba!. Worker's comp seems to be part of the problem- what can be done?
VB: States, not Feds responsible for Worker's Comp. Frontline staff are critical to quality.

A Newish Day: Welcome and opening Plenary session

8:45 Steve Perez, President of the Association of Regional Center Agencies (ARCA) gave a touching welcome as the grandfather of a girl my niece's age with the same diagnosis. A good start.

8:55 My friend, YB just walked in 10 minutes late. Just so y'all know.

9:00 Norman Kunc is giving the opening plenary.
"There is a categorical difference between the way non-disabled people see disability and the way most disabled people experience it."

"The main struggle isn't the struggle with the disability. The main struggle is with being identified as a person who is different."

Analogy: Imagine that you've saved up some money and you finally buy that piece of land where you're going to build your dream house to retire in. You build a beautiful house with four bedrooms and chandeliers and an ergonomic kitchen and the walk-in closets. Then the surveyor comes to examine the house and says it's beautiful and perfectly to code, but the bad news is, it's on your neighbor's land. And you say "No problem, we'll change the wallpaper.

Four ways to percieve disability:
Perspective Response
1. Deviance, Marginalize, A threat, segregate!
2. Deficiency Reform, fix the broken person. "I represent a normal part of human diversity"
3. Tragedy Benevolence Good quote- "Inclusion wasn't included in the social justice movement"
4. Diversity Support,innovation, value. Great quote: "Relationship delivers what rehabilitation promises."

"When you have a disability, innovation is a way of life."

>>>Being realistic isn't realistic

What we think is reasonable is often an unnecessary limitation.

Summary: Because the world is set up for non-disabled people, people without disabilities don't look for better ways to do things-"You do it the dumb way because you can." People with disabilities develop problem-solving skills and emphasize efficiency due to the higher cost of doing normal things. As a consequence, people with disabilities develop natural skills for innovation and creative task analysis. Society should take advantage of this.

This is a great start for the conversation we may or may not be about to have.

A Newish Day- Live from San Diego

My wireless connection seems to work here at the conference, so I'll take my notes on this site. Substantial impressions, embarassing quotations, anything that gets said that I think deserves repeating from the conference will be posted here as it happens, God, t-mobile and my battery willing.

Thursday, February 03, 2005

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.

Monday, January 31, 2005

A New Day- The Prequel

Next week, the Association of Regional Center Agencies (ARCA- for definition of a Regional Center see the archive, July-ish) will hold a two-day conference on non-traditional supports for people with developmental disabilities. It's pretty hard to tell whether or not the conference has changed since it was about more inclusive day programs or whether the language was broadened. It's good to see Regional Centers engaging new ways of doing things as a group, and I applaud at least the purpose. I'm hopeful that this will be a useful, constructive, maybe transformational event. Not suprisingly, I'm a little cynical as well.

The first red-flag is the density of the programming. I think there will be dignitaries giving plenary speeches and sitting on panels for about 15 of the 16 hours. The content seems built around the idea that most people don't know what to do, but once told, might obey. That is the paradigm for dialogue in our system and it's more pervasive than good well or, even, disability. My hope that this event has value apart from the Super Bowl party on Sunday is pretty much pinned on the idea that the panelists in the workshops have been given a 4-minute time limit.

The unrecognized reality is that nearly our entire system (based on my five-year sample of people I talk to) agree about how the system should serve its clients. Every State bureaucrat, Regional Center bureaucrat, Vendor Bureaucrat, parent, client and demagogue involved agrees that the system should be more client-centered, customized and responsive. Pretty much all of us are trying. Most of us are somehow a great deal smarter and more innovative than the conversations we have together. Most of us have more insight than the experts we bring in to explain things to each other.

So the hope is that we can mark a change in tone from next week. More of the soul-crushing same is too painful to imagine but exactly what the conference agenda suggests.

Here's what I hope, though- The Monday morning dignitaries point out that the system's been talking and writing its brochures along these lines for a long time. If the system hasn't delivered everytime, or most of the time, or often enough to mention- it's probably because there are systemic barriers to the transormation. Not a lack of will or a lack of intelligence, just stuff in the way. I bet if we started to talk about where each of us (the not experts) encounter the barriers, we could really start to change things.

Friday, January 14, 2005

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.

Wednesday, January 12, 2005

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.

Monday, January 03, 2005

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?