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.


Anonymous said...

SDS proposals so far are too nebulous and with requirements of accountability that even Regional Centers and case managers are not required to accomplish in the existing 21 nonprofits.
I especially "like" the requirement that parents NOT be compensated to be service brokers/coordinators while they can pay for same/like services.
The first year savings per client is only expected to be $375 per person if you run the numbers. Is the State/DDS/Fed cost for this >$1000 per client or more? Most likely. Poorly designed so far from a consumer family standpoint.

Doug said...

Anonymous, I agree with your first point absolutely. If Service Coordinators don't have a specifically defined role in SDS, a lot of the savings and a lot of benefits are in jeopardy. My suggestion has been that RC staff be responsible for a more elaborate IPP and then fade into some proactive monitoring to prevent fraud and abuse. If that means a bigger budget so be it, if it's smaller so be it. My suspicion is that DDS was ready to fight provider groups but not ARCA.

To your second point, my response is ok, but as a provider I run into a lot of families that never stop sacrificing for their family member who has a disability and a much smaller number who are simply brilliant at exploiting the benefits that come with a disability. I share with DDS the concern that if SDS were delegated entirely to the family without restriction, it would be nice for the majority of SDS clients but dangerous to the small number whose families are exploitive. My proposal had been to allow paid family service brokers but not allow family members to be the Financial Service Manager. If oversight by the Regional Center were defined clearly, I think I'd be ok with family-member FSMs. I might even be one.

Doug said...

Regarding my comment about DDS taking on provider groups but not ARCA, it may just as easily be that with limited experience as to the real role of SCs in client lives, DDS doesn't experience the limitations on choice imposed by well-meaning, caring professionals as well as the occassional megalomaniac.

And regarding that comment (I'm not backpedaling, I'm moonwalking) the trouble is that regional centers and their staffs are held responsible for so much. I think most RCs and SCs would meddle less if they weren't responsible for things clients should be responsible for. This is why a clear role is necessary to change behavior.

Regional Centers should not be expected to determine the quality, creativity or appropriateness of services purchased under SDS except to document that they are legal, waiver compliant and actually being delivered.

Anonymous said...

Reading into all of this....if DDS and RCs and Administration don't TRUST clients and their "Circle of Support"....
(loosely translated, the Regional Centers must be doing a poor job of IPP and person centered planning for existing clients, since the parental authority(DDS) indicates existing base of service delivery has indirect overhead cost to the state of upwards on 40% overhead.......)
the leap to conclusion is if WE(RCs) cannot do our job(for whatever reason), why would we let our client base be responsible for their own lives/monies.
Our children/our families are NOT crooks, or liable to be a greater risk to be because they are given some fiduciary responsibility and flexibility.
Ethics and honesty are not wiped away by allowing budgets to be used or examined more closely.

If few/all parent/clients were to misuse taxpayers monies they should be fined and/or prosecuted to full extent of the law, as should any Regional Center(and staff under nonprofit guidelines), and service providers.
Latest ARCA transmittal asks for, amongst other things, more budget/money if the have to oversee SDS....lets cut to the quick here and solve that problem and allow those who want to participate to work with SDS establish a new 22nd Regional Center(if we could go from 2 to 21 RCs another one added is not going to take away from, but add to the betterment of the system in existence that lacks an agenda-and we do have Resources in the presence of Lanterman State Developmental Center for accomodating that at no greater cost than current) that focuses on Self Determination and cost effective practices that benefit the individual needs of developmentally disabled.
We Californians now are 6-10 years behind in self determination benefits, and asking the Feds to kick in $$$ so we can "prove" cost savings to the State administration so they in turn can prove to taxpayers that we are saving money.....Knowing politics, bureaucracy and community all too well, this dance looks like contracting for new programs(furniture) and just moving it around in the room, calling it New(and innovative) and then being billed for that new, improved product and the redeployment charge.
I know departments, I know agencies, I know staff, I know clients, and I know families that can do better. If allowed. And betrusted to do so.
Let's do better.
Let's build back the trusts and common sense that we all need to work together, or else continue to erode infrastructure.
We have not learned from the history that required us to write the Lanterman Act.
We are becoming what we were before that legislation was written.

As staff in the TeleConferences indicated....DDS has a budget that is $3,000,000,000 and staff indicated that it is a lot of money. I agree with DDS.

Now what is the next thing we can agree upon for our developmentally disabled Californians?

Today. Tomorrow and next week.
Five years from now we know that more than $15 billion will have been spent. But I, as a dad, for my son want the system to have something to show for it.

Doug said...

Anonymous, I understand what you're saying and agree for the most part. The system has a towering budget but doesn't tower. I want for my niece what you want for your son, the help she needs to live a full and rich life and nothing else.

What I'd really like to get across if anyone will hear it, though is that saying "our clients/our families are NOT crooks" is rhetoric. Most clients/most families are not crooks. Maybe, probably the overwhelming majority. That said, it is tragic to let clients not be served because of the intervention of crooked family members who do exist. For those clients who don't have fathers like you, I would like to see some real monitoring of everyone.

This isn't about whether people are doing a good job, it's about what that job is. I think the job description of everyone working with an SDS participant should be different than it is in the current system.