Transparency may be the most underappreciated feature of a strong system. Every day system stakeholders experience the ability of bureaucrats throughout the system to stretch the letter and spirit of existing statute and regulation. Often, those innovations are flexible solutions to situations not foreseen in the development of existing law. Often the experience is of a misrepresented regulation for the purpose of saying no to a flexible or compulsory solution.
The more that DDS, Regional Center and Vendor actions are exposed to sunshine, the more likely flexible solutions will be applauded and inappropriate denials of rights will cost the decision-maker. At every level of the system from the legislature to the quality of breakfast in a group-home, people with disabilities benefit from the various agencies understanding that the quality of their work being widely known and understood.
I offer an additional point, my own theory. I do believe that control must be balanced with the organic process of policy-making. Because most decisions are made in the dark by people alone, each of whom most often prefer to be in control, I expect that the system of support for people with disabilities is massively out of balance on the side of rigidity. An open dialogue can massage that stiffness and restore some of the flexibility the developmental disability system in particular was wisely designed for.
The CDCAN initiative to enable journalism by system stakeholders is so important. The fact that anyone's actions may be the subject of a webcast marks a major change to the milieu in which professionals act regarding disability rights and opportunities. Along with the teleconferences which highlight the micro-effects of macro-policy, CDCAN is the largest part of a systemwide push for greater transparency and through that, greater accountability and better decision-making.
CDCAN is not intended to be, nor should it be the only agency expanding transparency. At the local level support groups, boards of directors, blogs (God help us,) and other networks have the opportunity to make transparent local and even individual policy-making and action.
A note about client and worker confidentiality. The right of the individuals involved in this system impedes transparency but also represents a crucial element of the dignity of the individual. Efforts to increase informal information-sharing and public awareness of what actually happens in the system need to consider the importance of privacy and privacy-protecting law. That said, two principles should be remembered: The freedom of the press is enumerated in the constitution and, therefore, no law or regulation can impede the right of people to seek information regarding public decision-making and to publicize the information obtained is superior to every confidentiality provision on the books. Second, confidentiality is the property of the person the decision regards, not the professionals participating. There is unlikely to be a legal offense where a person wants their story told.
Update: Chris Thompson has left a link to a site he writes with a partner on transparency as a communication tool. Click here to read about why transparency matters.
Monday, May 08, 2006
Thursday, April 20, 2006
Money and Reform
Lately I've been getting crosswise of friends, colleagues and conspirators over my baffling opposition to better funding for our system. I thought I'd clarify to you, dear reader since I feel kindly towards you unlike those rascals. But, I do believe this as well: The gap between how the system functions and how it should is greater than the gap between current funding and optimum funding. Add to that the great truth of life and government: that money is the enemy of reform.
It's not so much that I believe rates are high enough, but that I suspect a lot of funding isn't helping people with disabilities. I don't know how much, but I further suspect that much of the wasted many is not otherwise neutral but harmful. Redundant people signing off on client's choices. Quality evaluations that serve no particular purpose but around which client lives and agency practices are disrupted. Fiscal controls which repeat other ones and serve as a break on the system's ability to respond to change, challenge and opportunity. Systems of accountability which can be safely ignored by participants but which, again, disrupt beneficial processes.
It's a funny thing to me: All the best advocates I've known, when near home complain about dismal behavior by regional centers, scurrilous crimes by vendors, the lack of challenge for success. The lack of punishment for failure. And yet, we arrive in Sacramento and face the legislature and administration and say "we need more money," not mentioning any of the problems that bothered us in our homes and businesses.
I do believe the following:
*Self-perpetuating boards implementing public entitlements was a bad idea and has produced predictable consequences.
*The fact that all information regarding the quality of support options is universally not just subjective but idiosyncratic and anecdotal produces inefficiency and limits rational choice well beyond what any end user or tax payer should have to bear.
*Some massive amount of creativity is squelched by fear-driven decision-making by people marginal to the life of the end-user.
If all this is true, then to focus on funding over reform betrays everything we claim to believe and everyone we say we love in this system.
It's not so much that I believe rates are high enough, but that I suspect a lot of funding isn't helping people with disabilities. I don't know how much, but I further suspect that much of the wasted many is not otherwise neutral but harmful. Redundant people signing off on client's choices. Quality evaluations that serve no particular purpose but around which client lives and agency practices are disrupted. Fiscal controls which repeat other ones and serve as a break on the system's ability to respond to change, challenge and opportunity. Systems of accountability which can be safely ignored by participants but which, again, disrupt beneficial processes.
It's a funny thing to me: All the best advocates I've known, when near home complain about dismal behavior by regional centers, scurrilous crimes by vendors, the lack of challenge for success. The lack of punishment for failure. And yet, we arrive in Sacramento and face the legislature and administration and say "we need more money," not mentioning any of the problems that bothered us in our homes and businesses.
I do believe the following:
*Self-perpetuating boards implementing public entitlements was a bad idea and has produced predictable consequences.
*The fact that all information regarding the quality of support options is universally not just subjective but idiosyncratic and anecdotal produces inefficiency and limits rational choice well beyond what any end user or tax payer should have to bear.
*Some massive amount of creativity is squelched by fear-driven decision-making by people marginal to the life of the end-user.
If all this is true, then to focus on funding over reform betrays everything we claim to believe and everyone we say we love in this system.
Wednesday, March 22, 2006
This year's cost containments
Demonstrating either my clairvoyance or my willingness to talk about matters I know nothing of, a few comments on the cost containments to be proposed by DDS this Spring. It's my workup for the California Disability Community Action Network teleconference so those of you with good fortune to read this before the teleconference will know what I'll say, and those of you listen to the teleconference first can quit reading now.
The cost containment mentioned in the Governor's Budget may include new contract language for regional centers requiring certain Purchase of Service decisions to be made in a certain way. For example, the low-cost provider able to meet the needs of the consumer shall be used and, where appropriate group services should be used rather than one-on-one services. On a common sense basis in which the words appropriate and need have their usual meanings and include a respect for important preferences, this should already be the case and isn't. In that regard, I'm tempted to agree with this proposal.
On the other hand, the first requirement of citizenship is to disagree with the administration and I do. Confidently. Two perspectives seem very difficult for the Department, which make disagreement not only possible but easy.
On the one hand, regulations and statutes and contract language have very little to do with service coordination except in cases where they amount to no and that seems like the better answer to the regional center decision-maker. Many of us here the once-proposed requirement to prefer group settings where appropriate and imagine that it will be quoted and followed faithfully always and only where inappropriate. The low-cost provider who meets the client's needs will be the provider at whatever cost who meets the service coordinator's needs or no-one's. I'll wager that no end-user of this system or vendor will find my claims here controversial or exaggerated.
The second, and more essential perspective missing from this proposal is the understanding that regulations are most often sources of inefficiency and poor outcome. When our system works best it provides a continuum of support to clients that reduces the need for supervision, future assistance and expensive support by assisting the individual to make choices. This is the most cost-effective behavior in our system where the client lives fully and the taxpayers save money. Any regulation, including contract language, of that process inhibits creativity, innovation and motion along this path. Proposals like the one I expect are as likely to freeze a client in an unchosen environment at needless cost as they are to save money.
The cost containment mentioned in the Governor's Budget may include new contract language for regional centers requiring certain Purchase of Service decisions to be made in a certain way. For example, the low-cost provider able to meet the needs of the consumer shall be used and, where appropriate group services should be used rather than one-on-one services. On a common sense basis in which the words appropriate and need have their usual meanings and include a respect for important preferences, this should already be the case and isn't. In that regard, I'm tempted to agree with this proposal.
On the other hand, the first requirement of citizenship is to disagree with the administration and I do. Confidently. Two perspectives seem very difficult for the Department, which make disagreement not only possible but easy.
On the one hand, regulations and statutes and contract language have very little to do with service coordination except in cases where they amount to no and that seems like the better answer to the regional center decision-maker. Many of us here the once-proposed requirement to prefer group settings where appropriate and imagine that it will be quoted and followed faithfully always and only where inappropriate. The low-cost provider who meets the client's needs will be the provider at whatever cost who meets the service coordinator's needs or no-one's. I'll wager that no end-user of this system or vendor will find my claims here controversial or exaggerated.
The second, and more essential perspective missing from this proposal is the understanding that regulations are most often sources of inefficiency and poor outcome. When our system works best it provides a continuum of support to clients that reduces the need for supervision, future assistance and expensive support by assisting the individual to make choices. This is the most cost-effective behavior in our system where the client lives fully and the taxpayers save money. Any regulation, including contract language, of that process inhibits creativity, innovation and motion along this path. Proposals like the one I expect are as likely to freeze a client in an unchosen environment at needless cost as they are to save money.
Thursday, March 09, 2006
Back to Self-Directed Services
Many of us are looking forward to the implementation of Self-Directed Services (SDS) in 2007 or 8 or 11 or so. Of course, all of us looking forward to that roll-out are assuming that when SDS rolls out, it will include self-direction as one element of the program. Just to honor the name and all. Here are three questions:
1. Will the roles of Service Brokers and Regional Center Staff be clear and separate? Service Coordinators (SCs) have for a long time expressed strong preferences towards what services and agencies clients receive support from. This makes a Service Coordinator a valuable resource to clients who are uninformed, indecisive or dependent. For self-directed services to live up to its name, an almost complete divorce from the service coordination function would have been optimal. In the case, it is at least necessary to redefine the role of the SC in a way that will not occur naturally, to make room for the new autonomy given to the client and to allow the service broker to be valuable. I would recommend a prohibition on SCs discussing matters appropriate to the role of the Service Broker.
2. Will the oversight of the SDS program support or inhibit the control of the consumer? Assuming that there will be accountability in this system (a boy can dream) it will be important what measures are tracked. Such indicators as level of integration, generic social network, and level of employment are great social goals but can't be assumed. Some people with disabilities prefer the company of other people who identify the same way. Some people find paid work less rewarding than volunteer work. Granted, SDS is an integration program in self-determination drag, but some accountability for the misnomer should require that clients be allowed to choose their own objectives and that no-one be incented to deflect or undermine those choices.
3. Will this system manage risk better in SDS than it does in the Regional Center system? Autonomy means nothing without the availability to take risk, and no plan is person-centered without an understanding of what chances may be taken and which won't be. Under the current system the assumption is that risk is good unless something goes wrong and then it was bad. Will the SDS include a new view that lets the individuals served choose which chances to take, and enjoy the results. Those of us who are eager to help people through SDS program plans will depend on the idea that if our jobs are done well and the client experiences an adverse result from an informed choice, that we won't be buried with the emperor.
I'm pessimistic that I know how these questions will be answered. Doesn't hurt to ask 'em, though.
1. Will the roles of Service Brokers and Regional Center Staff be clear and separate? Service Coordinators (SCs) have for a long time expressed strong preferences towards what services and agencies clients receive support from. This makes a Service Coordinator a valuable resource to clients who are uninformed, indecisive or dependent. For self-directed services to live up to its name, an almost complete divorce from the service coordination function would have been optimal. In the case, it is at least necessary to redefine the role of the SC in a way that will not occur naturally, to make room for the new autonomy given to the client and to allow the service broker to be valuable. I would recommend a prohibition on SCs discussing matters appropriate to the role of the Service Broker.
2. Will the oversight of the SDS program support or inhibit the control of the consumer? Assuming that there will be accountability in this system (a boy can dream) it will be important what measures are tracked. Such indicators as level of integration, generic social network, and level of employment are great social goals but can't be assumed. Some people with disabilities prefer the company of other people who identify the same way. Some people find paid work less rewarding than volunteer work. Granted, SDS is an integration program in self-determination drag, but some accountability for the misnomer should require that clients be allowed to choose their own objectives and that no-one be incented to deflect or undermine those choices.
3. Will this system manage risk better in SDS than it does in the Regional Center system? Autonomy means nothing without the availability to take risk, and no plan is person-centered without an understanding of what chances may be taken and which won't be. Under the current system the assumption is that risk is good unless something goes wrong and then it was bad. Will the SDS include a new view that lets the individuals served choose which chances to take, and enjoy the results. Those of us who are eager to help people through SDS program plans will depend on the idea that if our jobs are done well and the client experiences an adverse result from an informed choice, that we won't be buried with the emperor.
I'm pessimistic that I know how these questions will be answered. Doesn't hurt to ask 'em, though.
Tuesday, February 21, 2006
Oh, I said I'd write weekly didn't I?
My new friend, PARCA writes a blog advocating Regional Center Reform. He and I agree on a lot, and I was reading his site today, where he reminded me that I haven't ground my accountability axe recently. Shame on me.
Accountability is a massive deficit in this system. How much money is spent on needlessly restricting clients, providing useless services through feckless providers, choosing costlier options to superior ones, adding layers of bureaucratic duty or regulation unaccompanied by better outcomes? I don't know and neither does anyone else. So a lot, no doubt. Lest someone accuse me of regional-center bashing, I do hereby confess the lack of accountability is systemwide and applies to vendors, regional centers, pretty much anyone taking a penny under the DDS line item. My own belief is that the lack of accountability probably does more harm than the lack of funding to consumers.
The big picture need for accountability requires a systemic, thoughtful approach and drastic reform. But here's something we can do today:
A low-cost, drip-dry way to improve the oversight in our system would be to improve transparency. This can be accomplished with a little care for confidentiality by the magic of carbon-copying. As a matter of policy, any communication sent to a provider agency can be cc-ed to their vendoring regional center. Any communication sent to a regional center, if clients' names are redacted, can be cc-ed to the Department of Developmental Services (DDS) or the Centers for Medicare and Medicaid Services (CMS.) Any communication sent to the department can be sent to CMS as well.
It's a poor substitute for a system of outcome measurements that defers to choice, but I'll wager it would help in the interim.
"Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God." -Phillipians 4:6 (KJV)
Accountability is a massive deficit in this system. How much money is spent on needlessly restricting clients, providing useless services through feckless providers, choosing costlier options to superior ones, adding layers of bureaucratic duty or regulation unaccompanied by better outcomes? I don't know and neither does anyone else. So a lot, no doubt. Lest someone accuse me of regional-center bashing, I do hereby confess the lack of accountability is systemwide and applies to vendors, regional centers, pretty much anyone taking a penny under the DDS line item. My own belief is that the lack of accountability probably does more harm than the lack of funding to consumers.
The big picture need for accountability requires a systemic, thoughtful approach and drastic reform. But here's something we can do today:
A low-cost, drip-dry way to improve the oversight in our system would be to improve transparency. This can be accomplished with a little care for confidentiality by the magic of carbon-copying. As a matter of policy, any communication sent to a provider agency can be cc-ed to their vendoring regional center. Any communication sent to a regional center, if clients' names are redacted, can be cc-ed to the Department of Developmental Services (DDS) or the Centers for Medicare and Medicaid Services (CMS.) Any communication sent to the department can be sent to CMS as well.
It's a poor substitute for a system of outcome measurements that defers to choice, but I'll wager it would help in the interim.
"Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God." -Phillipians 4:6 (KJV)
Thursday, February 09, 2006
A New Blog
The Vendor Leadership Forum (VLF), a subcomittee of the Eastern Los Angeles County Regional Center Vendor Advisory Committee (VAC,) has established a weblog as part of its effort to form a learning community and to be transparent to the community.
This new blog (linked permanently at left and in this post above) will open up the progress, challenges, milestones and planning of the VLF for information and feedback. The members of the VLF will all have the opportunity to describe the journey, the scenery and the adorable natives we meet along the way. We invite all of you to read and comment there.
This new blog (linked permanently at left and in this post above) will open up the progress, challenges, milestones and planning of the VLF for information and feedback. The members of the VLF will all have the opportunity to describe the journey, the scenery and the adorable natives we meet along the way. We invite all of you to read and comment there.
Wednesday, February 08, 2006
Administration
I think our system has a funny relationship with administration. On the one hand, it's almost a tenet of faith that administrative costs deprive the clients. On the other, the State and Regional Centers sure seem to come up with a lot of ideas for vendors to do more of it. There are a few things that stand out to me about the role of administration in our system.
The first is this: Our system derives its efficiency and effectiveness from the individualism in the service planning. In theory always and in reality sometimes, services provided are so well matched with the client and his or her situation that there is no waste and yet every disability-related need is met. OK, right, but the point is, the matching of service to need and the flexibility to treat each client individually clearly requires more management that one-size-fits-all solutions. Add to that our emphasis on integration and services being located in the home and in the community and it becomes clear that the quality-assurance and communications functions of administration are more demanding and more productive than in standardized, facility-based models of care.
The second thing that stands out is this: Administration and management interfere with the process by which individuals and their staff find their own way. Quality Assurance, service planning and coordination are all interventions in the organic process of person-centered support. Administration may be necessary or beneficial but it can easily be stultifying, invasive and counter-productive. Like this entire system, cost-benefit analysis should be applied to both administration and the regulations and policies that promote administration to make sure we do the optimum amount of administration the best way possible. I should clarify that by analysis I mean analysis and nothing that begins with "I think" like this post did.
The first is this: Our system derives its efficiency and effectiveness from the individualism in the service planning. In theory always and in reality sometimes, services provided are so well matched with the client and his or her situation that there is no waste and yet every disability-related need is met. OK, right, but the point is, the matching of service to need and the flexibility to treat each client individually clearly requires more management that one-size-fits-all solutions. Add to that our emphasis on integration and services being located in the home and in the community and it becomes clear that the quality-assurance and communications functions of administration are more demanding and more productive than in standardized, facility-based models of care.
The second thing that stands out is this: Administration and management interfere with the process by which individuals and their staff find their own way. Quality Assurance, service planning and coordination are all interventions in the organic process of person-centered support. Administration may be necessary or beneficial but it can easily be stultifying, invasive and counter-productive. Like this entire system, cost-benefit analysis should be applied to both administration and the regulations and policies that promote administration to make sure we do the optimum amount of administration the best way possible. I should clarify that by analysis I mean analysis and nothing that begins with "I think" like this post did.
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