Friday, May 30, 2008

Families and Reform

The Apostle Stanley is stirring it up in the comments in the post below this one, comforting the afflicted and afflicting the rational.  His comments have inspired some thought on my part, no mean accomplishment.  

If you look through this blog over the years, those reforms I argue for most consistently: transparent and public outcome evaluations of programs and policies, self-determination and its pale cousin self-directed services and value-stream management share a common assumption: That end users of the system, given the means and opportunity to do so, will choose quality supports providing the maximum likelihood of achieving the client or families goals.  It is on this basis as well, that I tend to kick against top-down, regimentary solutions such as those Stanley suggests.

I make this assumption in direct contradiction to some experiences I've had.  I am often at meetings with groups of clients and/or family-members gathered for the purpose of advocacy.  Often at those meetings, complaints are rife towards service providers and regional centers.  The commonest answer to "have you discussed this with your agency/regional center?" seems to be "I am afraid they will retaliate."  The commonest response to "Have you considered changing agencies/service coordinators?" seems to be "It's a lot of work and, anyway, the next one might be worse than the last." 

I recently told a good friend after one such meeting of my suspicion that if mediocrity in a service provider cost money, excellence would abound.  Likewise, I suspect that if listless service coordination made extra work, service coordinators would struggle to be responsive.  

I am sure fears of retaliation aren't entirely unjustified and I certainly grant (and assert) that discovering quality supports is impractically hard.  But, if end users won't seek alternatives to poor service, then Stanley is probably right, the only way this system will get any better is a top-down process that will also make it less creative, innovative and diverse.

10 comments:

stanley said...

[doug] I tend to kick against top-down, regimentary solutions

Don’t think...eg, 2001 SDR recommendations (pick recommendations from any study) were top-down, regimentary solutions...so the question: who is responsible for implementing them...specifically the ones incorporated in DDS strategic plan and not requiring legislation...ie, The Department supports the values and principles developed through consensus of the committee. These have been incorporated into the Department's Strategic Plan.

[doug] But, if end users won't seek alternatives to poor service, then Stanley is probably right, the only way this system will get any better is a top-down process that will also make it less creative, innovative and diverse.

Don’t think holding DDS resp for implementing the bottom-up creative, innovative and diverse solutions is a top-down process.

users are resp for finding alternatives to poor service...this does relieve DDS of implementing the law and SDR solutions...it's not either/or.

the Lanterman Act could be substituted for SDR recommendations.

stanley seigler

Doug said...

I disagree, Stanley. I think it is either/or and if DDS is principally responsible for the system then this must be a top-down process.

The SDR solutions (as opposed to findings,) are pretty regimentary, but might not be bad in all cases. Still, if you want DDS responsible than it has to be in charge. If end users are responsible, then they should be in charge.

stanley said...

[doug] I disagree, I think it is either/or and if DDS is principally responsible for the system then this must be a top-down process.

to make sure what it is we agree/disagree about. My view:

1 DDS is resp for implementing, monitoring the Lanterman Act...the system charter.

2. System users, providers, etal (stakeholders) are resp for calling DDS/RCs on the lack of implementation.

3. Stakeholders are resp for finding best providers.

4.DDS, Stakeholders, are jointly or separately resp for system reform (eg, SDR and Blue Ribbon Commission)

Item 1 is a top-down process. Items 2-4 are combinations of bottom up/top down processes...so my opine: it is NOT...cannot be...an either/or process system...it really doesn't make much difference, except for our discussion...our agreements/disagreements, what the process is called.

Moving on to user responsibility.

[doug] The commonest response to "Have you considered changing agencies/service coordinators?" seems to be "It's a lot of work and, anyway, the next one might be worse than the last."

User must do due diligence to insure "the next one" is not worse...

sad due diligence is so hard in a system where laws protect the abuser NOT the abused...eg, murder and abuse (actual and benign) are covered up...providers do not rat (code of the provider) on the bad apples...DDS/RCs cover up with excuse the law sez I cant tell on the abuser...eg;

[doug] I fire someone for negligent supervision, neither you [paul] nor Stanley are likely to know about it due to a bunch of rights various people have, so I'm not sure no one was held responsible. [see previous blog]

we should know if someone was held resp and if that someone is now working for “the next one”...who is resp for ensuring abusers are eliminated...

[doug] If someone died from violence in a supervised, congregated setting that can't not be a colossal failure of leadership. [see previous blog]

Perhaps one incident not a colossal failure of leadership but a pattern of abuse and cover up over decades in DCs or the community; excused by confidentiality law that protect the abuser NOT the abused...is a failure of leadership...leadership that has a sacred duty to protect those with special needs.

Marky’s murder [previous blog] epitomizes this pattern of accepted cover up...eg, a doctor says Marky died of a heart attack...and there are similar community horror stories...recently;

video shows a man slapping the 30-year-old man with the mental capabilities of a 2-year-old while the man shrieks and cowers in fear...executive director of the Regional Center, talked to service providers about the cellphone advisory [don’t carry sell phones] in the context of his agency s response to the video scandal. He also offered the services of a public relations firm to coach caregivers how to talk to the news media.

[doug] The commonest answer to "have you discussed this with your agency/regional center?" seems to be "I am afraid they will retaliate."

happens all the time...my daughter kicked out of valley village because of irrational dad...VV would have let her vegetate the rest of her life...if i was not a pain in the butt...RC and licensing were no help...Lanterman was not enforced...personally know of all too many instances where child/adult was kicked out because of parents.

best thing that ever happened to my daughter...but for all the wrong reasons...VV should have admitted they could not/would not provide proper programs...instead they insisted they were providing excellant programs...had mountains of paperwork to show same...but no actual positive outcomes.

aside

[doug] let's check the thesaurus. "Retards" isn't in mine. [see previous blog]

shouldnt be in anyones thesaurus...and hate myself when i use it...use it to show the unjust, despicable, patronizing, way people with special needs are looked on by many in this "best of all worlds"...in Marky case by the judicial system (not enough evidence to prosecute)...consider it worse than the N word.

stanley seigler

Doug said...

Stanley, I will take my own advice here. Where I quote you, I'll use italics and answer in bold.

I agree with you, as written on your four points. Where I think I disagree is what it means to implement and monitor the Lanterman Act. I consider it axiomatic in the Lanterman Act that the end user defines both quality and the value added. So, if regional centers won't buy what they should (i.e. a reasonable cost effective support to the client's IPP) or buy what they shouldn't (i.e. buy paintings for the blind, behavior modification services for someone who neither needs them nor wants them, etc.) I think DDS should eventually notice and take action to the extent the law grants them the means and authority. I think of all the parties to this system, measuring, monitoring and enforcing "quality" is one DDS has the least responsibilty for.

Given that DDS is the most distant party to the end user, DDS is functionally the party in the very worst position to judge quality, improve quality or enforce quality. I won't say I give them a bye on quality entirely, but they are the last people I want taking the lead here so I don't judge them too harshly when the system sucks. For the record, I mean this architecturally, not personally- a lot of the people I know working there would be the first people I'd want on my improving quality team if they had jobs more appropriate to the task.

If I got to write policy, the standardized portion of outcomes measurement would be a DDS responsibility, and that would give them a role in the quality game, but right now I'd say it's your daughter and her dad's job first, mine second, the Regional Center's third, DDS' barely if at all.

"so my opine: it is NOT...cannot be...an either/or process system."

My opinion is that we have to be very careful who gets what responsibility. Let DDS write the regional center contracts, draft regulations as needed (and be yelled at for doing so,) conduct audits, gather information about the statewide state of the system and create opportunities for convention, innovation, creativity and transparency. That's their statutory role and I think the intelligence of the system suffers when DDS is called on to do more than that.

"sad due diligence is so hard in a system where laws protect the abuser NOT the abused"

It is also, in my opinion, tragic, that there is such very, very scanty and entirely unreliable data on quality, proficiency, specialty and availability alternatives. I am with you here. I think system clients need to take more responsibility for demanding quality, but I also think the cards are way too stacked against them. You should know that before her retirement, Julie Jackson wanted very much to fix this and I can be counted on to support change in this direction. I do think DDS has a critical role to play here, for which they'll need new statutory authority and funding, but I'll join you in asking that they be granted that and, once granted, grouse right alongside you if they fail.

"we should know if someone was held resp and if that someone is now working for “the next one”...who is resp for ensuring abusers are eliminated...

For people who commit actual crimes against clients, no one should protect them from law enforcement whose job it is to see they are punished. Once convicted no one should hire them again. There are vagueries, however, that come up in abuse cases, I have fired staff I believed were wrongly accused but wasn't sure enough to keep them on. It compounds the crime when someone fired under a weak suspicion has his or her reputation permanently damaged and can cost good people from a system that has too few.

"Perhaps one incident not a colossal failure of leadership

Pay attention to the double negative. I was trying to say, without claiming enough information to render anyone's verdict, that from what little I know of how DCs work that a violent death of a client must be a failure of leadership at some level.

stanley said...

[doug] If I got to write policy, the standardized portion of outcomes measurement would be a DDS responsibility, and that would give them a role in the quality game, but right now I'd say it's your daughter and her dad's job first, mine second, the Regional Center's third, DDS' barely if at all.

Well guess we need to revise the Lanterman Act

Currently
The Lanterman Act tells DDS to contract with regional centers to provide services to you and other persons with developmental disabilities. DDS remains responsible for monitoring the regional centers and ensuring implementation of the Lanterman Act. http://groups.yahoo.com/group/DDRIGHTS/message/3653

Revised
The Lanterman Act tells DDS to contract with regional centers to provide services to you [the consumer] and other persons with developmental disabilities. The CONSUMER and his/her family is responsible for monitoring the regional centers and ensuring implementation of the Lanterman Act.

Now how do you suggest my daughter and I monitor RC and ensure implementation for the 200,000 (whatever) in the system...how does my daughter prevent the murder of a Marky.

(Would you also make the privates responsible for the failure in Iraq...)

Somewhere in this discussion there may an answer to why the system fails so many...maybe because many feel the DDS is barely, if at all responsible for monitoring the RCs and implementation of the Lanterman Act.

On a less facetious note...

[doug] the standardized portion of outcomes measurement would be a DDS responsibility, and that would give them a role in the quality game.

DDS should, at least, be doing this now.

OTOH

The consumer (family) has a responsibility to know their rights and demand they be upheld...fair hearings (whatever)...I get it...I am responsible for insuring my daughter has the best programs available...howeverbut;

DDS is resp for insuring the law is enforced...eg, that RCs do not deny needs exist to meet budgets, providers do not abuse...ieie, they obey the law...further;

if all 200,000 were to demand their rights under the law...say file for fair hearings...they would be implementing Lanterman...which the law says is DDS' job...wouldnt it be easier for DDS to just do its job.

[doug] For the record, a lot of the people I know working there [DDS] would be the first people I'd want on my improving quality team if they had jobs more appropriate to the task.

for the record DDS did implement the Lanterman Act for my daughter...so have no doubt there are many compassionate professionals in the department...the director being one of them.

DDS and families have miles to go...but DDS has the paid (maybe not enough) sacred duty under the law to implement Lanterman...to protect and support our children and adults with special needs.

looking for the golden mean where DDS has more than barely any responsibility and 100,000 consumers file fair hearings.

stanley seigler

Doug said...

OK, Stanley. We agree on a lot but have different perspectives.

stanley said...

OK...thanks for your perspective

Doug said...

No charge, brother.

paul said...

“…a common assumption: That end users of the system, given the means and opportunity to do so, will choose quality supports providing the maximum likelihood of achieving the client or families goals."
-doug-

Doug,

As you have stated, “I make this assumption in direct contradiction to …”, in many ways this is a BIG assumption. Before I try to express, inadaquately, how Big I think that assumption is I will revert back to an old question rephrased.

Is our current public policy (Lanterman Act) adaquate to bring about the reforms this blog has advocated most consistently: “transparent and public outcome evaluations of programs and policies, self-determination and its pale cousin self-directed services and value-stream management”?

Since I have found wide and interesting interpretations of the Lanterman Act I want to start where I hope we can agree. Client or families goals are not implicit entitlements under the Lanterman Act.

If you disagree, then lets start there.

1) If mediocrity in a service provider cost money, excellence would abound.
-doug-

2) Likewise, I suspect that if listless service coordination made extra work, service coordinators would struggle to be responsive.
-doug-


I believe that these two realities, alone and if properly recognized, may be able to improve the system well beyond our current expecations. However, I am not sure how the recognition of these realities would serve our advocates and advodivas and thus I am uncertain how much motivation there woud be for proper “recognition”.

I have taken off my mask – I think the air is breathable now….

Doug said...

Paul, the air is breathable because you aren't sitting in my office. I pretty much agree with your agreeing with me. Some incentive to provide actual value to people with disabilities would help a lot. I agree with you, also, that the goals of end users are not the entitlement, but support to mediate the effect of disabilities on the achievement of those goals. That's a key point and just when I was about to end June without a post. Thank you.