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.


Anonymous said...

As a consumer's parent I hear the state qualifying "voluntary" as a great offer for those who are unhappy at their existing Regional Center supports(rather than address the internal failings)....and in the SDS service delievery allow clients/families to make their own decisions.
What seems to consternate is the fact that the state is offering this equivalent, and then wondering why there aren't more "volunteers"(and presuming that is because the existing supports are OK/fine/adequate)....
The offer as many see it
if the current IPP provides "a cake a month" to the client SDS will now allow the client to make
his/her own cake(minus the undefined 10% reduction or undefined Caps)---which ingredients can be done without?Eggs, sugar, milk, oven, mixing bowl?
Is this a "have your cake and be unable to eat it too?" cost saving measure?
There are some absolutes folks.
Just overheard a service provider and vendor at a clinic trying to decide what a famly's child needed more ....foot orthotics(with existing too small) or a prone stander(for weight bearing and orthopedic issues)...with the issue being, for them, who would be willing to pay(not who is able/required)....CCS(DHS); RC(DDS); LES(CDE)....what is a client supposed to give up when the answer is neither, but one must "volunteer" to do so? Left shoe this fiscal year and right shoe the next?
Self Directed in the latesr design/plan should never be built but unfortunately may be anyway.
If the teleconferences are not getting that point across then nothing else can at this point in time.
Maintain and make better the existing system with its 99.99% of total system's expenditures, while designing a better, more elegant and functional alternative that expects "better", not just a placebo for the presumably "unhappy client".
We need a better design/build team then current DDS and SB proposals.
Each of the 5:150 RCs should convene their families so we who might want to consider/enroll have access to the experts with 6 years' experience.
If this is good for goose/gander, why am I not hearing that DDS and RC staff will be 'given" a 10% reduction in their salary(before their checks are calculated) and then with the remaining self directed paychecks, they will have submit distributions to state/fed/local tax, SS, FICA and need to find resources to independently find "vendors" to allow staff things like benefits(sick leave, vacation, retirement)
...all within the "average"(do I hear $24,000)formula calculated not on individual, but collective salaries of all involved?
Oh yes, we will have to have a system to audit expenditures by those staff of the monies the state "gave" them.
I, for one would like a more elegant iteration of DD client needs predicated upon the tenets, intent and safeguards of the Lanterman Act.....more closely intending to be Da Vinci like than a Rube Goldberg program.
I hope SDS California is a "2007 or Bust" proposal as the journey to make this happen in 2006 as currently scouted will leave too many beyond or bereft.

Doug said...

Anonymous, before I respond specifically, let me say I truly appreciate your posting your point of view to this weblog. It's a much richer, more interesting site thanks to you.

I'm eager for SDS, but agree with you that an elegant version rolled out in 2007 is better than a bad one in 2006, voluntary or not. That said, I think its important to realize that right now you're shopping at a company store using the merchant's shopping list. I suspect the 10% reduction will, after a year or two be achievable while the clients get more than they do now. As a vendor, I expect to provide services more sustainably at lower cost and pay my employees better under SDS.

If SDS works like I expect it to, I think your son will be surprised at how much support he can have. Of course, people who primarily use POS for durable medical equipment would be examples of those who I expect to fare better in the traditional system.

Anonymous said...

Anonymous but visible her again.....

In the last three years of this ten year journey with my son,
I expected the system to improve and get better......
This year I only hope it will get better.
And if supports to developmentally disabled continues this trend I have seen in which OUR RC sees clients as a challenge for targeted "reduction", or institutionalization in the case of my son..........
Next year
next year
I may be disppointed and find totally unacceptable implementation by reluctant or recalcitrant nonprofits known as Regional Centers, thru counterproductive IPPs, purchase or service policies, notices of proposed actions, and local plans that serve better the agency or the state and not clients or providers of service.
I however expect better.
And refuse not to care, not only about my son, but others assigned to this Lewis Carroll service delivery model.....that point was brought to bear last week from someone involved in this system as a "provider" who asked/suggested that IF we could get my son all that he needed, then would I be OK/satisfied????
In isolation, all by itself(services), all by himself(in segregated classrooms or a group home)....those services, the law, the basic human and civil rights should be, must be provided to my son, for his family, to raise him in our community.
We are not there yet in the San Gabriel Valley by a long stretch.
God help the parents whose child has been born into California's arcane form of support to special needs children.
As my son and I were downtown today, an acquaintance who knows us was asking for support by us to a disabilities issue we can bring some attention to.....and in knowing how we are challenged at every twist and turn to "prove this and prove that"......I would be almost a dream if XXXX(my son) were only disabled.

Trust me.
Both sides of the aisle. Each side of the issues.
Read the Lanterman Act(THE Design)
and then apply it to the needs of our 180,000 developmentally disabled Californians (THE Build)($3 billion allocated every year)
How about we make May 2005 one in which the answer to "how was your day?" started with the words
for clients("The Regional Center helped us get.......)
and Regional Centers began sentences with "We helped our client(s) get).
That is why $3,000,000,000 is a great opportunity to help those with special needs.
Therapy and meds to be given....
And a son to hold and hug.....
continued later

Doug said...

I'll look forward to hearing from you later. I think I just realized who you are. If I'm right, you and your son helped deepen my interest in self-determination. It's a big part of why I want this all to happen. I'm absolutely certain of the quality of care your son would receive if your family were given a sufficient budget, and I know frustrating things have been for you under the current system.

Sunil Natraj said...

You are one knowledgeable man!

Doug said...

Sunil, thanks. Opinionated is closer, but you're kind.