Friday, May 08, 2009

Impertinent data

At the Senate subcommittee meeting yesterday, I was reading through the agenda which mentioned DDS's annual report which was described as "pertinent data" about the people served by the system.  Let's use that as an excuse to talk about what data DDS doesn't provide (or gather.)  Service outcomes would sure be useful, particularly in a shrinking budget.  Which Independent- and Supported Living agencies are most or least likely to help someone move out from a residential facility, and which are most likely to see their clients return to licensed lives? Which employment models and agencies are most likely to see their clients move upward in income and downward in support need?  Which residential facilities serve happy clients and which are essentially traps?  Which transportation agencies have the best record of picking up on-time and dropping off uninjured?  Do some agencies see more abuse than others?

Other pertinent data would be pertinent data.  Do some regional centers provide more information on options and alternatives without being asked?  Do some regional centers see their clients live more fully or require less support over time?  Are there regional center policies that might correlate with outcomes?  Which regional center will be the first to notify a client of their appeal rights as required? 

This would all be pertinent data.  This information would help our system learn, evolve and do better work with less waste.  We would be better off if we had no idea how many Californian 15-year-olds have diagnoses of autism and some notion of what works for those that do.

9 comments:

paul said...

A poignant message NEVER goes outta style…well…unless…

Thanks Doug

In my “opininion” [beginning my therapy Doug] one of the most fascinating questions is why this pertinent data is NOT included, which is just ONE of many "why not"s that are part of the game of hid the ball…

I believe I could, IMO, articulate an answer supported not by opinion, but by evidence, but such an approach has ever been fashionable in this world – so I will show my growth and maturity as an “advocate” and keep to my opinion, a fine canard, or red herring.

So – I will, for the sake of therapy, say, “In my opinion – the lack of this pertinent data likely benefits (sometimes directly, but most often indirectly) the same small group that is setting the agenda of what constitutes ‘advocacy’. That agenda puts this pertinent data on the back shelf in the least and under a rock in the worst.

If anything is going to change, if this pertinent data is to be analyzed, sterilized, logorithmicyzed, someone or something must pierce the veil of “advocacy”. I do not think that someone or something exists, or stands a snowballs chance of being created.

Currently advocacy provides a voice for those with a voice. This is of course the nature of the beast. The nature of the beast gives our miasma an explanation, but this explanation does not render California "advocacy" sufficient nor fair.

What has NO explanation is the affirmative efforts of those with a voice to silence those without a voice. This is not fair, not ethical, and perhaps a bit disgusting because it is often cloaked in the banner of helping “all”

The only hope for a victory for people with disabilities in California is likely a Pyrrhic victory. That victory will come when the environment no longer provides terra firma for our “advocates” and, like California’s budget, the ocean rises above the heads of most people with disabilities. The Son’s and daughters of the blue bloods will not doubt have leg room in a lifeboat. These lifeboats provide a good argument for the win/win strategy followed by the blue bloods of avoiding equability and accountability

After a Pyrrhic victory the Carpathia, ‘outsiders’ called government, will swoop in and make this a tad better than horrible.

Fret not – the hope of ANY victory, even a Pyrrhic victory, is only a glimmer, and more likely than not the ship will continue to sail, albeit with steerage underwater. We have seen senseless death (isolated incidents!), beatings on YouTube (Whodathunk! cell phones should be forbidden!!), and a “fight club” in Texas (hey – what about all the success stories of those that are NOT in fight clubs!!!) that have failed to stir little, if any elan from our ‘advocates’.

Short of Armageddon I think people with disabilities are on their own. Just hold the sign you are told to hold, chant like a loyal sycophant, and have an opinion like a loyal minion, and remember...

Worst case scenario you can always feed on your own...

California Advocacy – in Theaters now

Doug said...

Hey, Paul. Good to hear from you. The pertinent information isn't included within the "pertinent information" because they don't have it. And I agree, they would have had it if that had been a priority for the advocacy community. So we do everything we do based on undisciplined opinion.

Advocacy is a funny thing, though. To a great extent, the roots of the word hold. People need to actually say this stuff.

paul said...

“The pertinent information isn't included within the "pertinent information" because they don't have it.”Well...We cannot say this with absolute certainty...can we? In any case…

Not all information is equal. Some is like a firefly on a warm Virginia night that passes right through the trailer window and is easily caught and placed in a jar. Not catching it because “the Regs. Say we don’t have to” is an excuse good enough for RC work I guess.

Other information requires a bit more “affirmative” effort, a phrase not in the average RC dictionary.

I HAVE found that much of this information is collected by some RC personnel, and unofficially stored in hopes of performing his or her job with more efficiency and with the consumer in mind. Kudos to those folks.BUT..but..IMO

It is time to move away from discussions about the need for accountability/pertinent information and towards a discussion of WHY we do not have accountability and pertinent information. After the WHY we can then consider if we can circumvent the WHY, climb over the WHY, or maybe plow it under.

It would behoove me to stop whimpering about the fact that Boo Stanley does not send me flowers anymore, and complaining that BS does not write me love songs anymore. It would be better to ask WHY. Of course…I kid the BS because it is not about him and therefore I ask not “this” question.

But you see my point?

For your reading pleasure:

A leading "advocate" Justin Voke V, inventor of the proverbial mousetrap, brings us the Top Five responses of California Advocates to Texas 'Fight Club' story.

Runner up -"Texas...no wonder"

5. Cell phones should not be permitted!

4. See what happens in STATE run facilities!

3. Isolated incident/Can't prevent all abuse.

2. If we paid the loving hardworking staff doing God’s work MORE this would not happen!

And the number one most popular response...

1. This story lacks balance!! Where are all the stories of people that are NOT in fight clubs!

Doug said...

Well, leave room for "Texas fight club? What Texas Fight Club"

As to the body of your comment, data that is selectively gathered and hid is not data DDS has. At worst, DDS would mistake it for information and at best never see it.

paul said...

“DDS would mistake it for information and at best never see it.”IMO

The biggest mistake that we can make, and the one we make almost every time, is to presume that DDS, the Regional Centers, and the alphabet soup of advocacy organization are obtuse or ignorant when it comes to discussing the obvious, pertinent, or the crucially necessary 'stuff"

We have no difficulty drumming out our slogans when it comes to consumers. On is that “all behavior conveys a message”. But – “advocates” obviously believe they are above such things, but they are not.

Do people that claim that money ALONE will fix our problems REALLY believe that money alone will fix our problems? Perhaps. Are they that obtuse, insensitive, naive, ignorant? Maybe. What we do know is that believing that the folks are stupid is the easy conclusion and the short retort that satisfy’s the respondent more than the beginning of the pursuit towards the alternate reality that might exist.

We have a sever lack of many things; accountability, as used here, being one of those things. In many cases no amount of money will provide solutions. In many cases No amount of money will end our deficiencies. In many cases the statutes, regs, and rules are not violated and yet we still have our deficiencies.

So when an insider states that the:

“..problem isn't the lack of good alternatives or solutions”, and that, ..”what is lacking is not a better proverbial mousetrap - but the political will to keep promises.”

…what message does this behavior convey?

Unless we begin to take seriously the messages that are conveyed we will will not even begin to understand the playing field.

Without such an understanding we would have our time better spent playing pocket pool.

This blog, CDCAN messages, monday morning memos, DDRIGHTS, CAL-DD, position paper, AB123, SB456, statement by RC XOs, and talking heads...collectively..are the behaviors that form our REAL pertinent data.

paul said...

PS
"In my opinino"

Doug,

I like this opinion stuff. Thanks.

I can never reallly be held accountable for anything I say because. After all - it is My opinion.

Genius!!

Doug said...

Paul, I blog under my own name. I'm accountable for what I say here, including if I were to state as fact something which I only strongly suspect.

paul said...

Doug,

My apologies.

While I completely understand why you thought that this comment was directed at you – it is not.

It is my basic flippant opinion about “opinions” in the field of California “advocacy”. While I agree that opinions have their place, that place seems to be everyplace, in lieu of much else, and at the expense of the consumer. This is our "tragic flaw".

The end result is that our understanding of the playing field, the cogs within the machine, and the public policy that controls entitlements and services has become a figment of our collective opinions.

Opinions are easy and they are creative and therfore attractive when compared to learning, thinking, pondering, and feeling stupid as a result, which are all dressed in overalls and called work. This may be the nature of the human beast but it does not placate the sad result – an advocacy movement has little in its quiver aside opinions.

The result is misinformed consumers armed with the lead boots given to them by the abundant opinionators to help them stay above water.

Fret not – my vacation ends soon and with it my opinions.

Doug said...

Right, Paul. That gets back to the point of this post. We don't measure, record or otherwise try to know what we're talking about. It limits how informed an informed choice can be and how wise a policy can be. Plus, as you say, the lack of verification allows opnion and fact to substitute for one another freely and without accountability. I share your frustration. And irritability, it seems.