Thursday, September 01, 2011

Policy, Choice and the Lanterman Act

A friend sent me this link. The concern (in the blog post linked) is that with a new state policy promoting integrated employment as a goal for every adult, that the individualization will be lost.  In response, I feel torn between two cynicisms.  On the one hand, state policy has little enough to do with actual practice that I would gladly accept a state policy stating the purpose of the regional center system as "for the enablement of the deaths-by-torture of vendor managers" for a small rate increase or the right to taze service coordinators who fail to convene ID teams.  If we are honest, there is no catastrophe here.  The most I expect the policy change to cause is a few bad meetings and series of sanctimonious speeches.  Who'll notice?

On the other hand, I can share the writer's annoyance this far:  Policy statements less substantial than a dentist's breath are a bad habit that promotes other bad habits.  That we can safely divorce such statements from outcomes has made it all too easy to also divorce outcomes from our thinking.  In turn, that makes ridiculous policy positions much more acceptable (c.f. the opening paragraph.)  Does anyone doubt that the widening divergence of policy and practice hinders system reform for cost's sake or for quality's?

So, pretending for a moment that I take this seriously, here are some concerns:
  • We have a very hard time at consistently distinguishing between aspirations, moral imperatives and greedy shenanigans.  It may not be clear, for example, whether it is better to be unemployed in the competitive labor market or productive at a site-based program.  Were the policy implemented at all, it would undoubtedly be implemented inconsistently and in many cases counter-productively.
  • If we really want to streamline the system, it is never, in my experience, less efficient than when we try to help people do what they don't want to, and nothing is easier to sabotage than employment.  How many hours of needed ILS, SLS, respite and vocational development would be cut or reallocated to support heroic efforts to find jobs for people who don't want them or aren't comfortable in an integrated setting, all in an environment where people who do want jobs can't find them?
All of this said, I agree with the state that every adult served by the system who is not employed in a competitive, integrated, profitable position ought to be a sign that something should be improved.

19 comments:

paul said...

“Does anyone doubt that the widening divergence of policy and practice hinders system reform for cost's sake or for quality's?”?

Assuming that everyone generally wishes policy and practice to be more harmonious ….YES. It stands to reason that the further we get from our target the harder it is to get back. I see the divergence of policy and practice as a symptom of a more endemic problem (cause). A symptom of an endemic problem will hinder reform as much as a fever prevents a person from getting the rest needed to kick a cold. The more interesting question is what has caused the divergence?

The divergence exists because “community” responses to violations of policy (law) [accountability] are overwhelmingly qualified. Objective accountability means that responses to policy violation are independent of the respondent’s status. Objective accountability will tend to resist divergence of policy and practice because it is consistent and applied in greater numbers and from more directions. Qualified accountability means that responses to policy violations are modified, limited, or restricted dependent upon the respondent’s status. It means that an “advocate” will first determine whether applying accountability hurts his or her bottom-line, whether or not applying accountability may harm a relationship, and whether the violation of policy may even help an “advocates” politics.

Qualified accountability is a human response from a political animal. The very existence of qualified accountability need not necessarily lead to divergence. Limited qualified accountability can even be argued to be a good thing. In any system, especially social services, there is a need to develop and maintain relationships. We have also all heard the term “pick your battles”. Additionally – because qualified accountability is a natural human response it is something that cannot be completely purged. Whether or not qualified accountability leads to divergence depends on its prevalence relative to objective accountability (whether or qualification is the driving force of accountability) and the existence of external checks and balances.

For decades Regional Centers have consistently ignored policy (Reg. Lanterman) because “Advocates” respond with qualified accountability. Advocates react purely upon whether or not applying accountability will assist in advancing the needs of the individual and NOT whether or not policy/law has been violated.

[At this point I would usually discuss particulars to support my assertions, but while in Rome…so I will just draw conclusions…]

The result of our purely qualified efforts is that that advocates (consumers, parents, family, vendors), as a collective, are a minimal force of accountability. This means that policy will not be the primary force driving practices because qualified accountability in practice is just about no accountability. Decisions will be made based upon factors other than policy (path of least resist..) The end result is a widening divergence of policy and practice

Doug said...

Paul, I wish I'd written that. Exactly.

Another thing in the midst of this: policy is cheap to produce and deliver while results take work and commitment. Policy doesn't even seem intended to drive practice anymore. If it were, they'd have to change a lot of policy including the one we're talking about.

stanley said...

[doug say] I wish I'd written that. Exactly.

oh shoot, i have to agree with paul too...tho not sure i always understand what paul say...to the extent i do understand...ditto exactly.

also not sure i understand relationships of policy, legislation and mission statements (perhaps essentially the same)...

[doug say] ...a sign that something should be improved.

a sign...there are many signs...if policy, mission statements, legislation were for real there would be improvement...and;

if laws passed to implement policy were implemented, "what a grand world this would be"...

when legs pass positive bills...backs are patted and all (advocates/legs) say "heck of a job brownie"

...then no action to implement...makes one wonder if legs had any intention to enforce the law they passed...or was it just to humor advocates...sadly advocates are humored...

[paul say] The result of our purely qualified efforts is that advocates, as a collective, are a minimal force of accountability [...] The end result is a widening divergence of policy and practice

The end result is a widening divergence of laws, mission statements and policy and practice.

stanley seigler

stanley said...

[doug say] A friend sent me this link. The concern (in the blog post linked) is that with a new state policy promoting integrated employment as a goal for every adult, that the individualization will be lost.

this link CLIPs (FYI):

[KTLP say] We certainly support the intent of creating better job opportunities for people with developmental disabilities, but we believe this statement should be modified to reflect the importance that the State has historically placed on individual choice.
http://keepingthelantermanpromise.net/inform/we-should-not-allow-california-to-adopt-a-policy-saying-that-every-adult-with-a-developmental-disability-should-work-in-integrated-competitive-employment/

[KTLP] The intent of the policy is good...However,... the policy statement does not honor the Individual Program Plan (IPP) that is guaranteed in California law.

[doug say]How many hours of needed ILS, SLS, respite and vocational development would be cut or reallocated to support heroic efforts to find jobs for people who don't want them

how do advocates get their priorities straight...a top priority: strengthen the ID Team and IPP process.

hours better spent on strengthening IDT/IPP process.

aside: does anyone know who is involved with KTLP...there are no names (board, director, etc) on their web pages.

stanley seigler

Doug said...

Great question, Stanley. I kind of assumed KTLP was that coalition of CDSA, DRC, ARCA, ARC etcetera that used to call themselves the Coalition to Preserve The Lanterman Act or some such, but that was rash of me.

To your other point, that's where I'd start too but a solid IPP still has budgetary constraints.

stanley said...

[doug say] I kind of assumed KTLP was that coalition of CDSA, DRC, ARCA, ARC etcetera...

hope not ARCA...not sure they are on the consumers side...

[doug say]... a solid IPP still has budgetary constraints.

there is lil chance our christian society would fund a solid IPP...

that does not preclude the need to have a solid IPP...it would be on record as to the true needs.

stanley seigler

stanley said...

this also posted on, "Did DDS cut something correctly?"

[ARC-CA say] The Arc of San Diego is sponsoring upcoming IPP training with the group, "Keeping the Lanterman Promise[KTLP]". The training is called, "Our Contract with California" which will be a presentation you won't soon forget on how to make the Individual Program Plan (IPP and IFSP) work for you, even if it hasn't until now.

COMMENT

still wondering who KTLP is...

a strong, enforced IPP (contract):) is the key to Lanterman and appropriate services for our children and friends...if IPP enforced most other regs could be eliminated...

another state's DDS reduced its regs from 130 to 30 pages by asking question of each reg: "does this help the consumer"...if answer: NO...reg was deleted...figs not guaranteed...but good enough for a ball park point...

stanley seigler

Andrew said...

I'm supposed to be getting notifying emails when the action flares up on this blog. Yet, I didn't get anything until today ... with Stanton's post, previous to this one. Damn!

Doug, this is an excellent post. I'd become a follower of yours, just because of this ... if I wasn't one already.

This is kinda like "Policy Meets the Real World" . It's supposed to have an effect ... but rarely does it make any significant difference in anyone's life that matters ... those lives most harmed by this system, 'our friends and meal tickets', the clients.

Policy can, (and often does) have an effect on families and providers ... and it can even cause regional centers to run around like so many Chicken Littles (with their heads cut off). But, on the rare occasions that it does anything to, or for, the clientele, it's usually something negative, oppressive or demeaning. Not always ... but mostly.

"Work Will Set You Free!" Who came up with this gem? Oh, I know who originally did ... But I mean who, of late, on the summit of the DD Olympus came up with this plan for those slacking gravy trainers, 'our friends and meal tickets.' (OFMT).

Once again, like the Lords of the Manor we are, we busy ourselves imposing standards on the serfs of the system we would never follow in our own lives. The lords believe that they (the serfs) must work in part-time, low-paying jobs to be "improved" and edified as human beings and somehow ennobled, in our view of the opinion and eyes of the Culture and Communities to which we aspire for them.

Typically, the part-time jobs held by developmentally disabled people do little or nothing to change, improve or enhance their lifestyles. Not a goddamn thing. Ask all working men and women in our culture the following question: If you could stop working tomorrow, and it had absolutely no effect on your life and lifestyle, would you ever work again?

You know, I've got a strong hunch that most people--in fact, I think it would be a significant majority--would answer "NO" to such a question and choose to pursue other interests. (American Slackers, all!)

OFMTs, when they reach the pinnacle of our service system, get to choose their socks and bedtimes ... but never, for a moment, believe that they will ever be allowed to choose the things that most people would, if the decision is in any way important or goes against the strict, moral, ignorant, Calvinist ethic we impose, so heavily, upon them.

I don't believe we should encourage lazy, idle lives ... but extending someone's isolation into a shit job cleaning grease traps 'ain't necessarily a way to get them the keys to the kingdom.

Nothing will change in this system until we learn how to respect people of whom we have so little knowlege and understanding. All we see is "disability"... which is no more significant than the clothes someone wears. When we start to see the humanity of our friends and meal tickets that is vastly greater and deeper than their disability, maybe we'll start seeing them and treating them less as a problem that only we, and our arrogant policies can fix.

Goddamnit, we suck!

Andy

stanley said...

[andy say] Goddamnit, we suck!

does yo momma know you talk like that...

well sadly we (providers, parents, professionals) are a sorry lot...even the best of us...eg, the providers who contribute here...

so much could be done if put egos, arrogance aside and stopped the bs...

a personal example...people say to me you did the best you could with what you knew...

no i didn't...Goddamnit, i suck.

stanley seigler

Anonymous said...

And to think I sent this to doug as a suggestion for his blog because I thought his regular readers would support an employment first statement. Wow. what an eye opener the discussion has been! Too often adults with developmental disabilities are 'assigned' to day programs that are site based and segregated and the 'program' is infantile and glorified baby sitting. I cannot tell you how many of these individuals would like to work, know what types of jobs they would be good at, and from whom our larger community would benefit from their presence. If you read further about the SCDD's Employment First report, you would find that volunteerism is included, as well as micro enterprises, and learning opportunities. Post secondary education, anyone? When a group of commentators such as Doug's regular readers dis such a policy I truly fear for our service delivery. Then I remember all the folks involved in self-advocacy and breath a sigh of relief. sorta.

Doug said...

Anonymous, what's surprising you might not be our commitment to employment but our perception of what happens to policy directives from the state by the time they hit the client. Remember, we don't follow outcomes in this system. If we did, I'd want and expect competitive employment to be an outcome we tracked and to make more progress.

I know there are more effective ways of preventing people from winding up in the segregated, site-based, barely informed-consent trap. I'm not sure there are any less effective ones.

stanley said...

[doug say] Remember, we don't follow outcomes in this system.

and this is the problem...NO follow up on outcomes...results of funding cuts/adds...we just keep making changes w/o any follow up...just commissions, etc...to create the illusion of progress...OTOH;

ever so slow/minute progress...

stanley seigler

stanley said...

[anon say] ...Too often adults with developmental disabilities are 'assigned' to day programs that are site based and segregated and the 'program' is infantile and glorified baby sitting...our larger community would benefit from their presence...Post secondary education, anyone?...When Doug's regular readers dis such a policy I truly fear for our service delivery.

COMMENTs
glorified baby sitting...all too often...it's SOP...and;

just as my daughter is my teacher, their presence would benefit society by orders of magnitude...

for one thing society would learn the meaning of unconditional love...

not sure what was meant by "post secondary ed"...but the note it struck with me is: we should spend time with DD folks to find their "avocation"...perhaps profitable...i hate work...and;

i dont believe doug's contributors dissed a true "avocation" first policy...but;

i do fear for our delivery system as the legs dismantle lanterman...trailer bill by trailer.

stanley seigler

paul said...

Anon,
I understand the concerns of many about “what happens to policy directives from the state by the time they hit the client.” The Regional Center has an uncanny ability to carve a beautiful carrot into a stick. I do not think that such a directive, outside of statute, has the sufficient force to move a consumer into an unwanted low-paying job that does nothing for the consumer. However – I have seen regional centers demand what they wish regardless of contrary directives, regulations, or statute. I think Doug may be correct in that most readers are probably communicating a concern for what will be the ultimate result of the directive – not the plain meaning of the black letters.


Andy,

Your example is a curious because the average person(excluding Paris Hilton and Stanley) does not have the luxury to ask his or herself your question. There is nothing to indicate (in statute, regulation, or practice) that Lanterman act meant to include Paris Hilton and Stanley in its attempts to "approximate the pattern of everyday living available to people without disabilities of the same age.”

“another state's DDS reduced its regs from 130 to 30 pages by asking question of each reg: "does this help the consumer"...

What State? the state of "reliable" ;>)

While this sounds good it is probably not very accurate because regulations are promulgated because of enabling statutes passed by the legislature that either (1) grants the authority to the executive branch, or (2) mandates the promulgation of regulations. When the authority granted by the legislature is broad the executive branch (DDS) has more authority to add, cut, or modify as it believe proper to effectuate legislative intent. Before the recent eligibility changes DDS had broader authority, “in association with the superintendent of public schools” to define the term developmental disability. The change in the definition was a result of a legislative mandate that narrowed DDS’ authority and defined developmental disability more narrowly and directly. DDS in California, and VERY likely all states, does not have the authority to cut regulations as the department sees fit. Title 3 does more than help farmers; Title 7 does more than help boaters; and Title 17, Division 2 does more than “help” consumers. DDS does not have the authority to add, cut, or amend title 17 as it sees fit. While the executive branch has the authority to make some additional and subtraction it is unlikely that a states executive branch has the plenary authority to alter regulations based on asking, “Does this help the consumer” You may have misunderstood or were told such by a politician.

stanley said...

[paul say]“another state's DDS reduced its regs from 130 to 30 pages by asking question of each reg: "does this help the consumer" [issjr]...[paul] What State? the state of "reliable" ;>)...While this sounds good it is probably not very accurate [end say]

there you go wrong again...from a very "reliable" source: paris hilton :)...weel actually an email from the DDS director of the state.

think i've quoted this before...wish CA DDS would take similar action.

stanley seigler

Andrew said...

Anon sez: I cannot tell you how many of these individuals would like to work, know what types of jobs they would be good at, and from whom our larger community would benefit from their presence.

No, you can't. And that's the problem. You, and we, do not view this group of people as diverse ... with diverse interests, needs, personalities, and, dare I say, identities. Maybe worker at a shit-job where you'll never make real friend, ain't one of them. Nor volunteer, because we think its good for you. We used to take Indian kids from their families and send them away to boarding schools to teach them how to be White and Christian.

Now we destroy any semblance of cultural and collective identity for intellectually disabled people to teach them how to be Normals. We do this because, we tell them, then they'll be embraced by their Society. And that's just a damn lie ... same lie told to the Indians. Policies that paint such wide swath solutions devalue groups of complex people ... just like sending Indian kids away.

The imposition of negative, stereotypical identities on minorities (ethnic, religious, racial, etc.) and other devalued social groups (women, the poor, etc.) within a society is a common and age-old practice. In the latter half of the 20th century, rejection and replacement of these "spoiled identities," as they're referred to by sociologists, became key, foundational aspects of a great many social and political movements. Groups, stigmatized and oppressed for centuries, began a process of "identity construction", establishing new, self-defined identities which reflected self-awareness and self-respect, group diversity, humanity and pride.

The primacy of identity construction intellectually disabled people requires new approaches to the teaching and training the service system provides to both its staff and clients. Entirely new subject matter must be explored, adapted, presented and, to whatever extent possible, understood as applicable to the lives of the developmentally disabled people in contemporary American culture. New roles and responsibilities must be established and accepted that can transform those we've made perpetual students (of ours) into teachers (of themselves); and those we've labeled consumers (of our services) into producers (of their own).

What we shouldn't do, if we wish to show a little of the same respect to them, as we do any other group of people, is to force them into any life or identity not self-defined ...

I think anyone who wants to work should have the opportunity. But, I also think there should be a lot more opportunities than merely that.

Sorry for the delayed response (if not the response itself), but Google's notification of action on this blog is very spotty, at best. Hope you're all well.

Andy

stanley said...

[andy say] Sorry for the delayed response (if not the response itself), but Google's notification of action on this blog is very spotty, at best. Hope you're all well.
damn dont blame google..just chk the site once a year...

stanley seigler

ps. thanks for yo annual insights.

paul said...

"In theory, most peopole accept the need to make do with less. In practice, we think it would be far fairer for someone else to surrender benefits and pay higher taxes."
-William Falk-

Andrew said...

paul said...
"In theory, most peopole accept the need to make do with less. In practice, we think it would be far fairer for someone else to surrender benefits and pay higher taxes."
-William Falk-


"... uhhhh, sorry, but there's one more thing ...."

--Peter Falk