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?

Wednesday, December 22, 2004

Self-Direction, Episode II

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

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

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

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

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

Monday, December 20, 2004

Self-Directed Services: Episode I

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

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

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

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

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

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

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

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

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

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

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

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

Stay tuned later this week for the next episode.