Friday, February 01, 2008

The Great Debate: Congregate?

An issue that comes up often in backrooms and private conversations but rarely in open policy discussions is whether the State should establish a preference for non-congregate supports as matter of law.  The discussion we just had was so much fun, and thanks to all who participated, that I would like to see if we can't continue discussion.  I'll play a similar role to the one I played on the 22nd, where I'll introduce my understanding of the two sides in the discussion and ask skeptical questions of the people who leave comments.  As before, you are welcome to be as anonymous as you like, but please choose some form of address so that if people want to take up your points and support or challenge you, they can make clear to whom they are referring.

101:  There are, as there should be, many ways that people with developmental disabilities are served.  A distinction can be and is drawn between "congregate" support and "community-based" support.  "Congregate" support is often delivered in a licensed facility ordained to the purpose of assisting people with disabilities, most often with paid staff who, at any given time, are responsible for more than one supported person.  "Community-based" support is generally delivered in places not otherwise dedicated to people with disabilities in particular and there is typically one or more paid staff-person assigned to concern themselves with each supported person.  Exceptions to the preceding are probably rife, but I think that will do for the needs of a blog.  Common examples of congregate services are residential facilities where people with disabilities live under supervision and day activities designed to occupy the supported person's  time away from home constructively.  Common examples of community-based services are wrap-around individualized services intended to secure individuals in homes and lives with maximal sovereignty and liberty.  There are few, if any, voices arguing that more congregate care is our best future and it is almost as rare to hear anyone argue that tomorrow all the congregate care in the State should be shuttered.  So the argument is generally whether incremental and intentional shifts toward community-based care should be centrally directed or whether the state should remain neutral on the mix of services employed.

The Proposition:  The State of California should change statute and promulgate policies in order to prefer community-based services for supported individuals to congregate services.

Introduction and an observation:  In all likelihood, there would be no debate, the hopelessly contrary excepted, that people with disabilities should be safe and well, pursuing goals of their choosing and fully integrated into the community.  Taken together, those three aspirations: Safety, choice and integration are always supported.  In the practice of people living lives, those three virtues are often in conflict with each other and different people resolve those conflicts differently.  In his first letter to the church in Corinth,  Paul wrote of three virtues: faith, hope and charity, stating that of the three charity was the greatest.  I would contend that this debate is really a dispute over whether safety, choice or integration is the equivalent of Paul's charity in the scriptures of California Welfare and Institutions Code, Title XVII. 

OK, so here are my top five pros and cons to the proposition above:

1. While congregate services may be of great value to the individuals served, they do not fundamentally change society's view of people with disabilities.  Only the presence of people with disabilities in full view of and participation in society will change how those unaffected by disability see their neighbors.
2. Efficiency is a subtler thing than people like to claim.  If community-based services cost twice what congregate services do "per unit" but deliver thrice the satisfaction, freedom and social value, then community-based services are more efficient, not less.
3. As the costs of legal liabilities and risks grow, models of support in which the State and its agents have less direct responsibility for the safety of the individuals served grow less costly compared to site-based care.  As quickly as the cost of staffing, the main component of individualized support, has grown, the price of insuring facilities may grow much faster.
4. None of us are free as long as one of us has their toothpaste chosen for them.
5. People with "developmental disabilities" have adapted and grown with support much more quickly and easily than the support itself.  For the state to remain neutral on the evolution of the system is actually to be biased toward older models.

1.  Policy makers can not dictate the values of the individuals served.
2. Whatever models of support may compete in the marketplace, choice is always more efficient than policy-making.  Those who provide wrap-around individualized support know how much money, time and effort gets wasted replacing jobs for people who intentionally and cheerfully engineer their own firings.
3. There is a subset of people served by this system whose medical and emotional needs are unmanageable without support and who would be spectacularly expensive to help if their needs weren't served together with others.  If we're honest about the resources available to us, such as specialized nurses, there is probably a subset of people it would be impossible to serve except in a congregate setting.
4. As an 18-year-old girl I was trying to help find integrated activities once told me.  "I don't like normal people.  Don't you have a group with people like me I can join?"  As a 55-year-old woman I was trying to help find a generic job told me, "Stop treating me like I'm normal.  I'm not normal."  What no policy maker, program director or advocate can do is go back in time and undo the message some people with disabilities have taken to heart they belong to a separate group.  To ask frightened individuals with disabilities to bear a special cost for our joined past is unfair.
5. The Lanterman Act itself does not divide history. The institutional mode of "support" was an expensive failure. The fact that residential facilities and day programs were created under the Lanterman Act as community-based alternatives does not mean they don't replicate the model. The trend of history is the fading of institutions and the rise of the individual.  200,000 people increasingly unaccustomed to segregation can decrease the prevalence of congregated care on their own while the State maintains it's integrity by not choosing between choice and integration.

OK, friends:  Whatcha got?


Anonymous said...

Thank you for doing this: Here are my initial thoughts
1) Somethings transcend empiricism. i think freedom is one of them
2) valued social roles will only be created when people with disabilities are not only in, but part of the community
3) there is nothing that can't be taught in the regular community, but there are things that never can be taught in segregated situations.
4) People with developmental disabilities do not generalize- hence teaching people in the environment that you want the behavior to be performed must happen
5) The state already does not allow segregated programs in other areas such as race- why is it allowable in disability
6) the outcomes are pathetic in traditional services- when do we say enough is enough- isn't this the definition of insanity to do the same thing over and over again and expecting different results
7) the only way to change the world is for people with disabilities to be interacting with typical people daily
8) even if punishment works, we do not or should not allow it- why is segregation allowed? i believe the supreme court ruled that equal but segregated is inherently unequal- same is true here

Ann said...

Community based, individual choice, treated like real people, not units of service is the only option that is acceptable to me and my cohorts. Ann

Doug said...

Jeff, you're welcome. Thank you for participating.

Regarding your first point, I might be missing the point but I'm kind of tickled. Do you mean freedom can not be quantified as choice?

Regarding the 8th point, it seems to me that other identity groups have been given the right to live, go to school, work and shop wherever they want to even if they will be minorities there. But nothing has been done to say that individuals cannot choose to stay where others share an identity. No one has made a successful case, though, that people shouldn't be able to choose to live, etc. with people they see as sharing an identity.

Ann, what's your response if someone says "This group home is community-based, individualized and we always treat people as real people?"

Anonymous said...

While I really appreciate you raising this subject- this is a war disquised as a debate. Proving that people should live in the community as equal members does not require professional scientific analysis. secondly, people with disabilities can not say they don't want to live in the community if they have never experienced living in the community. it is like my mother said- you can't hate shrimp if you never tasted it.

Anonymous said...

Doug - in response to your question I would first ask- were they given a choice, shown other alternatives or simply told where they were going to live.

stanley said...

[doug say] The Proposition: The State of California should change statute and promulgate policies in order to prefer community-based services for supported individuals to congregate services...[also say] whether safety, choice or integration is the equivalent of Paul's charity.

The State should enforce (w/ charity) the Lanterman Act (THE LAW)...all else is as sounding brass or a tinkling symbol (AKA BS), KISS;

1) A compassionate, knowledgeable, representative, interdisciplinary team determines the needs...documented by the IPP.

2) RC whoever finds QUALIFIED, cost effective, programs to meet needs

3) the state adequately funds programs.


legislators tell those with special needs cheap license plates for Hummer owners are a higher priority than their needs...and returns all to snake pits...AKA DCs, Broken Homes, the status quo.

If Lanterman is enforced...the community-based services dream, through choice, will become reality.

California dreaming...weel maybe...but no more a dream than believing the State will legislate community-based services in God’s lifetime.

stanley seigler

Doug said...

Thanks anonymous but there are very few casualties on blogs and precious little conquest so in this space it's probably a debate disguised as a war. I am delighted for ideas to come up, though. Who is the enemy? People who have lived in their own apartments and been active in the community have chosen to live in residential facilities. Also, people who have lived both on their own and in facilities have been left in facilities for years after clearly expressing a preference to live on their own. The latter case is obviously wrong. But the former?

Ann, it happens both ways. I think we all agree that those people who were not given choices have been abused. When I first became involved in advocacy, you were there, I noticed how many really angry people with CP there were at hearings and other events. Then I noticed the angriest advocates were all of a certain age. Then I saw my first site-based vocational program and realized that a lot of people with perfectly healthy cognitive skills and powerful small-motor control deficits had been put to work screwing down wingnuts. That would tick most anyone off for life, and I'm not terribly interested in debating if people should be pushed into congregate care, but whether the State should be actively trying to take away the choice of congregate care.

Nice, Stanley, with the Corinthians comeback. In this case, enforcing the Lanterman Act currently means supporting congregate care for those who freely choose it.

stanley said...

[doug say] In this case, enforcing the Lanterman Act currently means supporting congregate care for those who freely choose it...and [anon say] you can't hate shrimp if you never tasted it...and [Ann say] simply told where they were going to live.

as asked: how many freely many free choosers have never tasted shrimp, simply many free choices are made by parent or IDTs with congregate bias (know in part, prophesy in part) it a matter of getting people to taste

of course there are those who would volunteer for the army (the ultimate congregate care)...should they be forced to live in the community...drafted, denied choice.

Educate and enforce suffereth long.

stanley seigler

Andy said...

Doug sent me an email, baiting me to respond to his "Great Debate." I glanced at his entry and a few responding comments and groaned . . . knowing that I would soon be giving up a chunk of my life to add my two cents to the debate. Later I went back and read all the postings and I was relieved to see that several of Doug’s points, responses and questions, accurately reflect my opinions on the topic (though his are better expressed, of deeper thought, pithier—more pithy?---less rambling, confused, contradictory, digressive, tangential and (obviously) less parenthetical). Since I wish not to add “repetitive” and "regurgitated” to this list,
I’ll only add a few points in support of his.

After that, I will write a blogging equivalent of “War and Peace” (in terms of length, not artistry). Most of you can click away or doze off whenever you wish, but Doug, compelled by his strong sense of responsibility as blog host, will have to read it in its entirety . . . and maybe think twice before baiting me again!

First, a simple question: Why is it perfectly fine for deaf people---people with deafness?---to establish and attend separate and segregated schools and colleges, or separate dorms, fraternities and sororities at non-deaf colleges, to worship at deaf churches, and, for many, choose to socialize only with other deaf people?

My knowledge of this is limited, but from what I understand, for many deaf people, their deafness is a defining cultural characteristic, leading to a view of themselves as members of a completely different culture, which needs to guard its status as separate social group. I think a significant percentage of adults with developmental disabilities also feel they are a part of an identifiable social group and they find ready acceptance and great comfort within this group. (Doug uses the word “identity” . . . a word better expressed, of deeper thought, pithier, etc.)

I’ve known many people with developmental disabilities who do not feel this way and who expressly wish to be part of the broader culture. To limit their options and access to the greater community is clearly wrong and something we clearly continue to do. But to disregard, dismiss or disrespect the interests and wishes of those who feel a connection and kinship to others with disabilities, and who strongly want to maintain that connection, is to me, also clearly wrong.

Anonymous wrote that people with disabilities cannot say that they don’t want to live in the community if they never have experienced it. Why not?

Informed choice is a good thing. However, if an informed choice is the only choice allowed or respected, it becomes not such a good thing . . it becomes a severe restriction, applied only to people with disabilities and another instrument of our oppression. A while back I wrote (yes, I am about to draw from the Archives of Idiocy, as some on this blog know as my previous postings elsewhere) that people with disabilities, like most everyone else, are the beneficiaries of the inalienable American right to make poorly or partially informed decisions. If our society required its citizens to make informed choices, hardly anyone would be allowed to lease a car, acquire a credit card, enlist in the armed forces, sign a cell phone contract, get married, have kids, or vote. And people like us would not be able to tell people like them, what is best for them. Do I really have to go to Bakersfield before I can choose not to go there?

Jeff wrote that the outcomes of traditional services are pathetic. These services usually state their purpose as providing vital training aimed at increasing independence. That their outcomes are, and have always been, pathetic, there can be no argument. When integrated programs and services promise that those they serve will become active, involved, valued, connected members of their communities, aren’t these outcomes also almost always unmet? I think the outcome promised by supported employment services should be simply to help you get a decent job, and the outcome stated by supported living services should be to help you get a decent home and control over your life. Not that we shouldn’t be working on the grander stuff of community involvement . . .

I think it was 1986 when I attended the first Supported Life Conference at a church in Sacramento. The day’s final session was the best, a presentation by Jeff Strully. (The same “jeff” posting here, I think! Sorry if I just outed you) Jeff presented strong, energetic, passionate, funny, provocative lessons and opinions. As I recall, he talked about the efforts made, the battles fought, and the advocacy of he and his family to free his young daughter from the wasteland of Special Education . . . its classes and curriculum, labels and expectations, biases and segregation. Finally, following her admittance into regular classes, a new world opened to her. His daughter (I’m sorry, Jeff, I don’t remember her name) made friends with some remarkable kids. She was invited to their homes, their birthday parties and sleep-overs, and included in all of the countless activities of suburban American kids. She was living normally, just a kid’s common life . . . though a quite uncommon life, for a disabled kid of that time.

I agreed with and supported almost every thing Jeff said that day. The one point, or implication, I questioned though, was that his daughter’s experience would be the norm for other kids, if and when they were freed from the swamps of Special Ed.

My use of the word “remarkable” to describe the friends Jeff’s daughter made reflects on my thinking as he spoke. I was thinking of my brother who is two years older than I. During his birth he was, for a time, deprived of oxygen. My parents weren’t aware of this, at first, but within a year it became apparent that he would live with a life-long disability. My parents weren’t the type to rush to learn all they could about how to raise a kid with a disability. I can see now that they had no need to acquire this knowledge . . . they understood innately what to do. They were raising two other kids, why should this be much different?

My folks treated my brother no differently than the rest of us. We had chores and so did he. Their expectations of our manners and behavior were the same for him. We all went to the same Catholic school. Fifty kids to a class, one teacher (almost always a nun from the Sisters of Notre Dame) no aides. There was no Special Education in this school and my brother was the only disabled kid in his class . . . one of only two or three in a school of 400. The nuns would tweak, or modify, their lessons and assignments for him. Up the street from us, lived a nice lady who was a retired speech pathologist. My parents paid her to work with my brother a couple of times a week. He and I shared a bedroom until we were teens because we were the two youngest. He got braces to straighten his teeth, like my sister. My parents signed him up for the Boy Scouts, like my other brother, and Little League, like me.

He went to the same public high school, as the rest of us, and took a few special classes. My parents insisted that he mainly take regular classes because if he wasn’t challenged and pushed a bit, he would readily give in to his laziness---a characteristic attributed to him by my mother because he always did a half-assed job washing the dishes and cleaning his half of our room. He graduated with the other 300 kids in his class and then went to work at some kind of special factory for people like him (I wasn’t paying much attention. It was during a period of a few years that I was ignoring my family . . . something I had to assiduously work on since I was still living with them).

Shortly before he started at the sheltered workshop, my mother rode busses with him to show him how to get there and back. After working for what seemed like just a few weeks—or a month or two at the most--- he was selected for a mailroom job at something called a Regional Center. I don’t know why he was chosen over others in the workshop who had been there much longer. Because of his education he could read and write. Because of my parents efforts and expectations he could get to work on his own and he would not intrude or interrupt, and he would show up to work early, every day. He was well-suited and well-prepared to work in an office setting.

In a few years, my brother moved to an apartment closer to his work. My mother showed him what he needed to know to live on his own and a few years later he moved back in with my folks, to save some money to buy his own place. In the mid-eighties he bought a condo in Santa Clara and hasn’t moved since. He has worked at the regional center for 35 years and, if he ever missed a day of work, I’m not aware of it. He talks occasionally about retirement, which, of course, we worry about . . . as he may then give in to his laziness.

For 55 years, my brother has lived an entirely integrated life . . . yet he has never made a friend. Not one. Not at school, or in the Boy Scouts, not at work, not in his neighborhood. Granted, he’s a bit of an odd dude . . .reserved, very self-sufficient, seemingly always too busy to chitchat. That he hasn’t a friend, I don’t think concerns him in the least. I don’t think he’s ever given much, if any, thought to it . . . and I’m too much of a coward to ask.

For me, there are few gifts in life as precious and rewarding as a true and lasting friendship. And I can’t help but wonder, if this most significant missing piece of my brother’s otherwise remarkably ordinary life is due to his nature or his circumstances. He, I know, would change nothing of his upbringing, his schooling, his housing or his work. But I wonder . . . if he had spent a few years, rather than weeks, at the sheltered workshop, or spent more time with other kids with disabilities in high school, would he have begun to feel a part of a social group? Would his sense of identity have changed? Would he have started to develop relationships with those around him, or learned to do so? I have no idea.

My brother has done well, and I too would change nothing about the path he took in life. Has he attained a valued social role in his community? His family is proud of him, and his independence, but I don’t think anyone else notices . . . he’s just a guy on his way to work in an office, bringing his groceries home, who’s kind of quirky. As more and more people with disabilities live lives of greater and fuller integration, the great gap in my brother’s experience may be a common characteristic. Can we come to grips with it?

It seems the Holy Grail of integrated services has become the forming of friendships, with non-disabled people. Clearly I wish this could have happened for my brother, though without the slightest concern over whether his friend had a disability or not. I am afraid the “friendship thing” has, or will, become our only measure of success . . . our only view of true community involvement. I think our hope for this has become so ardent that we sometimes really stretch the common conception of friendship so that we can say, and so that we can believe, that so-and-so is making friends in the community.

The produce manager at Safeway who invites the disabled bagger to join the company softball team, or the neighbor who often stops to chat at the mailbox, have not, by those actions, become one’s friends. Their actions---as simple human decency and courtesy---are very, very important and should not be slighted or undervalued. Until those interactions grow into something substantially more significant---a relationship with qualities of equitability, kinship, of time and thought invested, of sharing, of emotional intimacy and connection, of loyalty and understanding and love . . . of what we get and hopefully give to our good and true friends----we can’t call it friendship.

I have often seen friendships with the qualities I’ve described in congregate programs. People in those settings may fear the risk of leaving friends behind, or losing those they love, when we ask them to change their home or job. And if, for these reasons, they choose to stay and to hold on to what they have, how can we say they haven’t made an informed choice? They made a decision informed by what they know and feel to be one of life’s great gifts. Many of us might do the same.

So Doug, my answer to your question is “no.”

Anonymous said...

Doug - you have gathered a very thoughtful group of people together excluding myself, of course, to discuss these issues. I do have several thoughts
1) It is not fair for people with disabilities to be asked do you like the group home, sheltered workshop, etc. if you have not experienced a real alternative. That is not informed choice;
2) there was a doctoral thesis turned into a book - it was something like "everyone here signs" it is the story of when cape cod, i think, had a large number of deaf people and everyone on the island signed; the argument is- if everyone signs, is deafness a disability?
3) friendship is not easy or simple - but people need to actively work on it to make it happen-- and even then it doesn't come easily- no quick fixes, no quick answers- but something that is so very important in people's lives - without friends- there is something missing
4) if i was king, and so far, nobody has asked me to apply for that position - i would make integrated services the only option with public dollars ---
5) there remains a difference between people who are deaf and those with intellectual disabilities - we need to take the most conservative approach to people with intellectual disabilities - it is the old deviancy = competency hypothesis --
ok- i have rattled on for way too long

Doug said...

Stan, well done out-Pauling me. To you and Jeff I'd ask the same question: Granted that people who are given no chance to experience integrated living are not being supported according to the Lanterman Act, what would you say to those who have and have chosen segregated care because of trials that arose living on their own?

Andy, that is a great story and one I didn't know. Just a note before I respond- it's important to me that the people who visit here can express themselves freely so I try not to out anyone. Without commenting on whether you did or not, please help me by responding to people with whatever level of anonymity they choose. In privacy and by email, I'll be happy to try and arrange playdates with other commenters, though.

A second request, you are here to bury me, verbally, not praise me. The only reason my comments aren't more parenthetical is my open parens key is broken.

Regarding your brother, though, assuming the reason he didn't make friends is not because he's a natural misanthrope, it sounds like the support that might have helped him could have easily been community-based rather than congregate. So, how does his story make the case for supporting congregate care? Next question: The point about informed choice is not that people shouldn't be allowed to choose stupidly, but is it really fair, if we have congregate options and integrated ones to only tell the client about the congregate ones? I think that's what the other commenters are trying to say about informed choice.

Jeff, I would be okay with your becoming King. I have no more respect for authority than I do for revolution. I appreciate your point about "Everyone Here Signs" and, of course, when we answer that question we will also answer the one abut the tree falling in the forest which would be a great relief to me, personally.

Your fifth point is interesting. If we say we have to treat people with cognitive disabilities from the hearing impaired, doesn't that imply a level of labelling and segregation?

Doug said...

Oh, and Andy, ramble on, brother. Pithiosity is unmandatory.

paul said...

Integrated, choice “informed choice”, and “approximate the pattern of everyday living” – these are words we use, so effortlessly, so seamlessly that we have failed to even realize that diversity of meaning, of value, placed upon these words is a expansive as the diversity of people served.

I do not know the answer to Doug’s question – maybe? But I do know this.

The “pattern of everyday living” is wide, diverse, and wonderful. If we begin to contemplate removing a pattern of living from a person with a developmental disability that is available to people without disabilities we should do so very cautiously. In order to protect people with disabilities from the overzealous aegis of the state the bar that needs to hurdled should be high.

People Congregate – the deaf, active older adults (pc for seniors), people of like mind, experience, culture, colour. Aside from the folks that have boldly gone where no man has gone before I have never seen a black women, a gay Chinese many, a Russian, Southerner, Scotsman, Midwesterner, and an Alien walking down the street hand in hand.

We have fraternities that extend beyond the four corners of a college campus, guilds, and unions that are included within the pattern of everyday living. Of course, as jeff has mentioned ‘choice’ does not have carte blanche, and the values of a society can begin to carve into the “pattern of everyday living” but when it does it does so cautiously.

I have met consumers that have 7 figure trust accounts. Their pattern of everyday living can be higher than the average bear. Should we ensure that most consumers be able to attain the same, Maybe. However, cost constraints makes this all but an impossibility.

Should we disallow a consumer to live in a “congregated setting”? Possibly – it depends. Do the benefits to the person outweigh the loss of freedom, choice, control, and the losses that Andy has nicely outlined? Maybe. Has anyone articulated a good argument to that effect that would justify a general public policy to that end? I do not think so.

These are question of the first magnitude to people with disabilities, but they are not novel questions. Sometimes, in the name of ‘progressive’ for people with disabilities people put on hats that are 100 years out of fashion. It is ironic.

What amazes me is that developmental services seems to live on an island that is 100 years in the past

To throw a fly in the ointment:

What is congregated? I ask because I have heard it said that some have called a person with a disability in supported living with a housemate with a disability - “congregated”

Is a group of guys living in a 4 bed-room supported living arrangement any LESS congregated than the group home across the street with 4 people living in a 4 bed-room?

Are we talking about congregated here or delivery models?

"The state already does not allow segregated programs in other areas such as race"

Jeff - could you expound?

Anonymous said...

People with disabilities are devalued in our society; the devaluation process applies to many groups, of course, but people with intellectual disabilities are more profoundly wounded then others. Therefore, people like Christopher Reeve was impacted by disability, but his status is definitely different because of perceived competency, money, status, reputation, and alike.
people with profound and severe disabilities who do not communicate are not in the same league as the folks you have mentioned -- older people (who can be devalued of course) but may be active, intelligent, high social status, seen as wise, perceived as competent; etc.
there is a difference between public and private dollars- my argument is simply that with public dollars - public policy can take a stand that says that going to the mall, zoo or park is life wasting and working is valued- hence, people with disabilities between 21-65 or whatever the ages should be working in a valued job. if i want my child to waste away their life in a day room, sheltered workshop, work activity program, habilitation program with private money so be it - but not with public dollars.
ok, i have done my work annoying people

stanley said...

[doug say] what would you say to those who have and have chosen segregated care because of trials that arose living on their own?

[dougs Proposition] The State of California should change statute and promulgate policies in order to prefer community-based services for supported individuals to congregate services.

Lanterman rules...person's choice honored...guess for the time being have to accept it may be a wrong choice...and

I would have difficulty accepting my daughter choosing a group home...unless it were run by Andy...andand;

I could not accept a SLS arrangement run by Valley Village...which bring up another point...

the morals and personal goals of an organization's leadership are critical (trumps process) to a quality life for those w/ special needs...andand;

Life quality and choice should also trump process...

time/energy, state policies should focus on ensuring life quality is provided in either community or congregate (not sure just whats community and whats congregate)services...

believe if time, energy is focused on commitment to quality, there will, be fewer negative trials arising in the community...this opine based on...

A little hind site which lead me to believe if quality had been the focus...vice pot/kettle horror storrs by community/DC advocates...DCs would have ceased to exist before now.

instead community advocates denied deplorable conditions in 1998 reports existed...sad similar conditions, 2006 Broken Homes, are also denied...

they should be basis for improved funding...ensuring community was/is ready for the transition...

that special funding and programs required for the Agnews move indicates those in the community for decades were at risk...and still are

[doug say] Oh, and Andy, ramble on, brother. Pithiosity is unmandatory

enjoyed the Oh Brother ramble...Andy's comment: “That he [Andy's brother] hasn’t a friend, I don’t think concerns him in the least. I don’t think he’s ever given much, if any, thought to it” ... reminds of a Zen quote from an autistic friend:

“Do not walk behind me, for I may not lead. Do not walk ahead of me, for I may not follow. Do not walk beside me either. Just pretty much leave me the hell alone”.

stanley seigler

Andy said...

I am very sorry for any breach of anonymity. I was thoughtless and inconsiderate. I didn’t present my brother’s story to defend or support congregate care. It’s nearly impossible for me to even conjure an image of him living in a group home, or riding a van to go to a program without end to sharpen his “prevocational skills,” or even to join a few others in a heterogeneous conga line for some integrated wandering through parks and malls.

It’s quite possible I overshot the parameters of the debate . . .or maybe I just always think of the parameters of our system’s issues as much vaster then they are . . .thus explaining why I get all tangential and flighty. For me, your simple question of should the state use the power of its purse and policies to drive from the system, congregate care, is anything but simple. It spawns a host of other questions and issues, which themselves bring up yet more.

For me, the first, and most obvious question to pop up from your question was why? Why would the state consider damning congregate services to the ashbin of history? (okay, ‘damning to the ashbin of history’ didn’t actually immediately pop into my mind) Is it the basic black and white morality of segregation bad, integration good? Is it frustration with providers, especially the big ones, who have long had the tools and resources to empty their workshops into the real labor market but who have dragged their feet because the money is better and easier in the shops? Is there some guilt involved from policies past which produced decades of institutionalization, big and small (i.e. DCs and group homes)? Is it social engineering meant to ensure that people with disabilities assume their rightful place in society as fully involved, participating members?

These questions, based on the “why”----of which I think there are still more---lead naturally (for me, anyway) to the stickier stuff. Questions about the impact of such a policy . . .About the role of the state and it’s mandate. I believe it does have a mandate to promote integrated services . . . or is it stronger than that, to demand them? Does it not also have a mandate to promote choice? And if so, shouldn’t it respect the choices made? Do some values trump others? Should they be imposed from above? Is this what disabled people want, or what’s best for them? Shouldn’t we, for once, try to find out? And what really does this policy hope to accomplish . . . to what distance does it dream? Are we willing to consider, and ultimately accept, the possibilities of some unintended consequences . . . that potentially, in five or ten or twenty years hence, thousands of people with disabilities may, in some sense, feel a greater isolation than they do today? That was the point of my brother’s story, not to defend congregate services. I neither can nor wish to do so, but only want to defend the wishes and decisions of some of its recipients.

Doug, I don’t agree with your comment that the informed choice discussion is about whether people should be told about integrated options before being placed in congregate settings. There should be no discussion about that at all. Of course people should be told, and far more than that! Folks should be taken to see what supported living looks like (that means more than just one place) and taken to see a variety of community jobs. It’s about whether an informed choice can be made without experiencing the alternative. It’s about whether we will respect, or even try to understand, the choices we feel are uninformed. And sometimes, it’s even about whether we will respect the choices of those who have experienced alternatives, yet still choose what we wish they wouldn’t. (Or am I just blowing by the parameters again?)

Again, I am sorry for thoughtlessness found in my previous post.


Andy said...

I think Paul, throughout his post (four rungs up the ladder), has provided us with the three correct responses to most of our service ssystem's questions: 1) Possibly 2) Maybe 3) It depends

On very rare occasions, when things are done right, an individual gets an individualized plan for services that fits their desires and needs. Are the services they receive right for others? Possibly, maybe, it depends.

On most occasions, people are planned into whatever is easily available and doesn't cost much and then largely forgotten.

Combine this common bureaucratic apathy with the common, severe shortage of both decent and varied service options and it’s a shock when anyone gets what they want and need. This is why SDS offers a ray of hope.

(ha, ha, Doug . . . didn’t think I could post something so short, did you?)


Doug said...

Paul, welcome back and great questions. I sometimes wonder if the difference between a traditional congregate model of group home, bus travel and site-based day program is the inconvenience. It's fair to ask about the difference between roommates receiving SLS and a CCF. The sharp point of that is whether we are so stuck in a service provider-centered world view that the difference between service models substitutes for the quality of life of the client.

Jeff, I'm not sure you've annoyed anyone yet who isn't daily irritable. Keep trying. I can absolutely accept that public dollars should be spent fulfilling public policy for public purpose. There's still the question of whether the public purpose guiding the rest should be the public perception of integration or the public subsidy of the person with disability's choice.

Stanley, your post reminds me to bring up again the matter of quality and accountability. When you say you would have trouble with your daughter going into a group home, except one run by Andy and that you wouldn't accept Valley Village SLS, it seems you are saying that quality is crucial to how people live. That sounds right. So, a new question for you, and maybe our next discussion topic: If you could choose between a reasonable sustained effort to keep track of outcomes and quality or a world without congregate services, which would you prefer?

No, no, Andy. Your story about your brother is fine. I meant asking Jeff if he were Jeff Strully. If you want to leave your full name, social security and credit card number that's great. I just meant let the others identify themselves to the extent they're comfortable. There really are no strict guidelines except I don't want this space to be a place for running down individuals by name and I do want people to be comfortable posting. No need for apology.

I think you make a great point that it is the result of policy that matters and not the policy. If I take you right, I'd agree that any policy has costs that should be counted against the virtuous results. We debate intentions and live with results.

Now, who was chasing you while you wrote that last post?

Andy said...

It's not who was chasing me . . .

I'd run out of beer and needed go out to get more. I was chasing a buzz (as the kids say . . . well, they used to say that, twenty years ago). And before any of you start thinking, "Well, that explains a few things," I categorically reject the notion that a single twelve-pack of beer (and lite beer, at that!), over the course of composing a very long post, has any effect on the rambling, long-winded, tedious nature of my prose.

It’s called style . . . like Joyce’s steam of consciousness, or the magic realism of Gabriel Garcia Marquez. My literary style hasn’t yet been formalized by name, but think of it as “twaddle from a bottle” or the backwash/hogwash” style.

I hate to cut this fascinating post off so abruptly, but. . . I’m getting mighty thirsty!

p.s.--- Jeff, at some point I’d like argue with your belief that everyone should be working, but I’ve been neglecting other important time-killing duties . . . I haven’t read a sports page in a week! (Bobby Knight retired? So when’s the Super Bowl?) Some other time, I hope. The funny thing is, I think all of us Doug-Bloggers (aka Blug-doggers at the end of a twelve-pack) probably agree on almost everything regarding DD services . . . but what fun would that be?

Amazing how just a few disagreements can take up a life time. . . .


Anonymous said...

I think a new topic maybe needed. I would encourage you to write a blog on low expectations. I think the field - both parents, consumers and providers - have very low expectations of people with disabilities and it is low expectations that you killing people's lives.
Re: Andy's thoughts -- i would eliminate all segregated programs including state hospitals, group homes, day wasting centers, sheltered workshops, anything that congregates, isolates and stigmatizes people with disabilities.
I am sorry- we do not live in a society where you really get to make all of the choices -- i do not think riding a bus with only white people is right; i do not think drinking out of a water fountain for blacks only is right; i do not think that sending deaf students to Galladaet is a good idea - but to overcome this craziness requires all of us tochange - and we do not want to learn sign; we do not want all housing to be accessible; we do not want people with disabilities to work -- that would hurt our economy which is filled with professionals and professional organizations making tons of money - similar to a CEO of Arribba-- to keep them in clientdom.
there are less people working for the us government today with intellectual disabilities then in 1993-1994 which was the highest percentage; new institutions are popping up throughout north america; there are more people in day wasting programs as a percentage then there are people in supported employment; there are more people in congregate housing then in their own home; there are more people with disabilities that are poor, lonely, isolated, impoverished, etc. then ever before - i would not declare victory yet--

Doug said...

Andy, gravitational realism?

Jeff, how would it ruin our economy? It's good for the economy for people to work. We'll get you a new topic but maybe next week.

Anonymous said...

if we got rid of people with disabilities think about all of the people who would be hurt-- professionals, associations, provider organization, real estate folks, suppliers, etc.
people with disabilities are big business - without them so many folks would actually have to get a real job.

Doug said...

Jeff, there's no question that a lot of people with disabilities are held captive to their advocate's aspirations. The question is how we find out who and make change, and there's no clarity in my mind that being hostage to a funded support system is worse or more prevalent that being subject to idealists.

In my personal life, I try to avoid the best wishes of fervent utopians.

stanley said...

[doug say] Stanley, your post reminds me to bring up again the matter of quality and accountability. When you say you would have trouble with your daughter going into a group home, except one run by Andy and that you wouldn't accept a Valley Village SLS, it seems you are saying that quality is crucial to how people live. That sounds right. So, a new question for you, and maybe our next discussion topic: If you could choose between a reasonable sustained effort to keep track of outcomes and quality or a world without congregate services, which would you prefer

conditional acceptance of my daughter (kath) choosing a group home does say quality is crucial...not that I believe group homes are acceptable...but if kath were (she never would) choose a group home I could accept it if run by andy.

the other part of what I was trying to say is: given a true/educated choice and quality SLS, congregate living will cease to exist w/o state mandating uncongregated living...thus my comment time/energy should focus on quality vice regs. And from a practical side the state will not legislate uncongregated services.

At least it would take longer than the transition from DCs to community and there would not be the economic argument favoring uncongregated as there was favoring community over DC.

(aside and BTW: the community, if quality support provided, is not more bean counting economical than, rationalizing 1:2 or 3, when 1:1 is needed)

For true choice, all stakeholders (parents, friends, providers, etal) must be educated...attitudes adjusted...many parents and providers believe congregate living is appropriate…soo choices are made based on their bias vice wishes of the one being supported.

The following personal experience illustrates opposition to regs mandating the uncongregated... the almost unbeatable foe...and unacceptable conditions which have become inherent to the congregate

The following (apologizes to those who have heard it before)

I should rot in hell: My daughter (Kath), was allowed to vegetate in a group home (Valley Village, VV) for all too many years. The majority of VV parents (90%) felt it was great...besides great meaningless paperwork to justify was/is at best baby sitting with ride around in van therapy.

VV director was/is great at gaming paperwork for 1:3 support; 1:4,5,6 provided; 1:1 needed.

one set VV house parents, a couple with two kids under 2 years old justified 1:3 for 6 residents for some periods of other times only 1 untrained aid on board for the 6 residents...directors son ran want ad that read: No experience necessary. Clean DMV. Sense of humor helps.

an aid didnt know difference between autistic and artistic...didnt know Kath was AKA Jean a life quality surveyor interviewed another resident named Jean thinking my daughter was being interviewed. Surveyors report referred to things Jean said...kath is non verbal.

Director, in newsletter said SLS would be a financial disaster. Two residents who went to a SLS seminar came back stating they wanted to live in an apartment. Director and parents patted them on head and basically said, thats nice but we know whats best.

My daughter was kicked out of VV because I was an irrational, pain-in-ass, parent...I should kiss their saccharin thing that ever happened. But it was all because of me...they proclaimed at IPP meeting (not 3 months early) they provided excellent, appropriate, support.

if I had not been an irrational parent they would have let her vegetate for a lifetime. She was well funded and not a behavior problem. They refused to purse or provide 1:1 support, even when she had a broken ankle...referred to her as retarded even tho a psychiatrist said otherwise...had almost non existent speech therapy, one hr per week. a VV PhD paid consultant referred to residents as retards.

VV parents gather the wagons (similar to a DC parent gathering) to defend the VV congregate facilities. However, tho my last first hand knowledge was prior 2001, I still have some 2500 pages of records to verify VVs vegetation programs.

this is anecdotal, however based on discussions over the years and 1998 SF Chron and 2006 Broken Home articles...would bet it is more representative than we want to believe.

Blog comments also show anecdotal is representative of many congregates (sadly incongregates have miles to go too), [andy say ] Jeff wrote that the outcomes of traditional services are pathetic [...] their outcomes are, and have always been, pathetic, there can be no argument.

This not to imply VV is guilty of physical abuse or is another Broken Home...

sadly worst: an example of benign neglect...Chinese water torture version of abuse which doesnt make headlines.

stanley seigler

paul said...

"I am sorry- we do not live in a society where you really get to make all of the choices -- i do not think riding a bus with only white people is right; “i do not think riding a bus with only white people is right….”
- jeff -

It is true, we do not get to make uncontrainded choices, but I am uncertain how nicely that leads into a white people only bus. What is more important: the fact that the bus has ONLY white people, or WHY (the reason) the bus has only white people?

As a solution can we, should we, FORCE a non-white person on that bus, against his or her will (constraining his or her choice), to solve our problem? Would that be OK? Is that an example of "public policy [..] tak[ing] a stand .."?

I admire the vim of idealism. It can provide energy and set the bar high. That is good. Unfortunately, it can often interfere with the guidance mechanism. Life is complex and diverse and therefore life's problems and questions usually do not lend themselves to easy answers. This is a round about way of saying that idealism, when completely unbriddled, can be a round peg, and life a square hole.

Public policy in regards to discrimination and segregation makes a nice banner for many idealistic points of view, but because that policy is so often misunderstood it can become quite an ironic banner

Discrimination and segregation stymies expression, choice and the possibilities of a society. The objective of anti-discrimination policies is to prevent the non-economic suppression of freedom as to where a person would like to live, work, and play - nothing more. The objective is NOT to convert every workplace, community, or public transportation into the bridge of the Enterprise.

Today, it is perfectly acceptable for a workplace or community to be all white, all black, all male, or all female as long as it was not “engineered” to be that way. “Engineering” a workplace to be heterogeneous is no different than “engineering” an environment to be homogenous.

Sure – in some cases policies due engineer. This is done when the ENDS (all white management in a company where 80% of the factory floor is non-white) provides objective and ample evidence of an improper MEANS (discrimination).

Therefore, when public policies do interfere with choice is as a tool to discourage environments that discriminate not to create heterogeneous idealistic communities. When policies do engineer it is NOT to produce a rainbow but to ensure things are done fairly and to protect free choices which when freely express may, or may not create a rainbow. AND – in some cases engineering that creates a homogeneous environment is completely acceptable!

But, engineer as a tool has it limits as well. While a person cannot use food stamps for liquor and cigarettes a person can buy heart clogging diabetic causing food with those stamps. Why?

People tend to want to live and socialize with like-minded people, and people with similar experience. Even the equivalent of the Adult Residential Facility is available to people without disabilities. If we are to determine that these venues, these choices, should be removefd from people with disabilities do we not have to also argue that a public policy should remove these choices generally, from everyone, disability or not?

If the public policy does not apply equally, could a person with disabilities claim, ironically, discrimination from a policy that is trying to prevent segregation?

The most popular bastion against the above questions is the bastion of Public dollars v. Private dollars, but I think it is a false bastion, and a straw man.

we take the Pub v. Priv dollars argument to its end a person can believe that regulators, executors, or the democratic public can put to the chopping block ONLY that “congregated” living that is available to people with disabilities for no other reason than because the PUBLIC holds the purse strings

Regulator, executors, or the democratic public can put to the chopping block or regulate ANY (including SLS) service that they should be against public policy, or simply because they hold the purse strings.

There is a name for this. It is called Purchase of Service Standards (POS). Yet, I have yet to hear anyone that fervently believes in banning congregated living also believe that POS are within the realm of justifiable public policy. Why?

Do not misunderstand. I am NOT saying that anyone that disagrees with congregated living MUST agree with POS. I am saying that anyone that disagrees with congregated living because of the “public dollars” argument MUST also agree that POS are than within the same ballpark and realms of possibilities for the same reason. Simply - the “public dollars” justification that feeds the goose must feed the gander, even if you prefer the goose, and have distaste for the gander.

However, this is not what we hear. We hear that POS “flies in the face” of Lanterman, but somehow, NOT allowing people with disabilities to “congregate” as people without disabilities congregate is kosher and somehow, without a word of explanation, meshes with Lanterman.

Outside of the Utopia a more sober look would indicate the “public dollars” justification is NOT the only value, and arguable not the primary value that guides public policy. Otherwise, the list of Food Stamp taboos would be much larger than alcohol and cigarettes. It would include ice cream, red meat, high-fructose corn syrup, saccharin, nutri-sweet, and maybe even have a calorie limitation and mandate an aspirin a day and vitamins.

27 years ago Judge Staniforth in the Court of Appeals found against a Regional Centers ‘choice’ and said,

“Even for developmentally disabled persons, there may come a time when they are entitled to be treated as adults with respect for their decisions, with some measure of personal control over their lives. There may come a point where they are to be no longer regarded as children to be made to do what is good for them regardless of their feelings.”

Can we disregard feelings simply because the dollars are PUBLIC? Can we disregard EVERYTHING, simply because the dollars are public?

I have yet to see a good argument outside of the public v. private dollars for removing congregated choices. In fact – this board has provided some good counter arguments.

In regard to our past – where large institutions bad per se, or were they bad because NOTHING else existed for the MAJORITY that could exist very safely in less restrictive settings?

Today, is it the existence of congregated* settings that is the problem, or the non-existence of services to a person that is in a congregated setting where they do not want to be and do not belong?

What is the more powerful value/public policy:

1) Preventing segregation/congregation, or
2) Preventing the suppression of choice and expression that can lead to segregation/congregation?

I hope that by page three it is obvious that I believe this to be a rhetorical question. But – I am not beyond convincing otherwise.

I do not think that the best wishes of the “fervent utopian” will become a matter of general public policy anytime soon. I hope not, because the “fervent utopian” is the person that put people with disabilities in large congregated insitutions because it was in their "best interest." This was done with little, or no, doubt, hesitation, dicussion, or question.

If anything the fervant utopian might provide a good, contemporary example of the virtue of sobriety, asking questions, and recognizing that we have foibles and fallibilities that can sometimes be imposed, improperly, upon people with disabilities.

Perhaps the modern example of yesterdays posterchild.

Yesterday’s posterchildren have removed the font parts of peoples brains, sterilzed people, and placed people in large congregated settings. Rarely was this done maliciously, but rather to make lives "better", and it was justified because they were under "our care" and it was "our dollars", father knew best.

Our past tells us that our fervant, affirmative efforts to make lives "better" can do more harm then doing nothing. This does not mean that we should disconinue our attempts to improves the lives of disabiltiies. It jus means that we should provide opprtunity, not jam it down their throats, or drill holes in their heads. It means that we should continue catuiously and soberly, and be suspect of arguments that only ‘hold forth’ without answering the difficult questions.

Thanks Doug.

Jeff, could you give an example that applies to your comment

"The state already does not allow segregated programs in other areas such as race"

* however that is defined.

To be candid - until explained to me otherwise, I continue to think that usually discussions re congrgated v. NOT is a disguise for a service delivery funding streams."

present company not inlcuded - honestly

paul said...

Sorry for all of the typos. I place a time limit on this stuff these days.

Anonymous said...

Dear Colleagues
People with developmental disabilities are a devalued class of people in our society. Parents, family members and others such as conservators, guardians, case managers and others speak for many if not most people with disabilities. This is my way of saying that we can not hide behind the belief that people with disabilities have the same fundamental rights, choices, opportunities as the rest of us---they don't!!!!

People with disabilities have had long histories of not receiving support and education in choice making. In fact, most people with disabilities get to make very low end choices- what shirt do you want to wear or do you want to go to pizza hut or mcdonalds for dinner? As a result people end up in congregate care because of low expectations, pressure from stakeholders, it is good for them, they want to be with their own kind, and other excuses. You want to stay in the workshop otherwise you will not see your girlfriend if you work out in the real world. of course, people with disabilities may choose the shop over the real world if they feel that social relationships are being impacted.

We know for a fact that you need to teach skills in the environment that you want to see it take place- hence, the only way to truly teach household skills for people is in their own home. why would we have people grouped together when we know that all of our teaching will not be generalized. So why are we not using our knowledge and science --because congregate care is better or ok or the best we can do or they are here for a short time until they learn certain skills to be able to go into the community - what non-sense-- old way of thinking --

From a public policy stand point, i want outcomes - people do not leave the workshop for real jobs --- if you stay more then a year or so--
the idea of congregate care made sense at one time - willowbrook was bad- community is good- now we know that community is some ways is just as bad as the old bad institutions - but smaller- it is like people need to practice that they can be in the community or show that they deserve to be -- what non-sense--

we know how to support everyone in a job- why don't we? we know how to support everyone in their own homes- why don't we --- we use choice when it makes us feel good then we turn around and use choice as an excuse for our responsibility

finally, thank god you all are saying -- public policy says that somethings must be more important then individual decision making - that is what the supreme court said in brown -- that is why we interven with medical care for those families who do not believe in transfusions-- the same should be true in disability - we should be saying - all people can work; all people can earn income -- all people can live in their own homes with people they choose to live with and receive the support they want -- you do not have to earn the american dream - you have to be an american

paul said...

Since we have seen at least two references to Brown we should be clear what Brown v. Board said

Brown announced that de jure racial segregation was NOT ok.

"de jure" segregation is not the same as de facto segregation. It is an important distinction. So much so that many people that use Brown in defense of a position would be surprised to discover that Brown might work more against his or her point rather than in support.

If anyone is interested I will let he or she do his or her own research find the distinction. I do not want to present anytihng more boring than that which I have already presented.

Wikipedia has a nice definition of "de jure", but more is probably needed.

Anonymous said...

Paul is absolutel right. but that doesn't matter --- if it looks like a duck, walks like a duck and talks like a duck --- it is a duck.
segregation is segregation -- racial, by gender, disability, etc. it is morally wrong; it is illegal -- for the most part; and a decent society would not want it

paul said...

“segregation is segregation -- racial, by gender, disability, etc. it is morally wrong; it is illegal -- for the most part; and a decent society would not want it”

Well said – I do not think that I, or many others, would disagree.

However, I was under the impression that this thread was about one “solution”, removing Adult Residential models from the spectrum of service models, not “the problem”, the fact that people, including people with disabilities, congregate either naturally or as a result of public policy.

Who was it that said, “a bad solution is worse than no solution”, or that, “the solution can become a larger problem than the problem it is was meant to solve”

The solutions to segregation have never been, as far as I am aware, the removal of opportunity but the creation of opportunity and hopefully, equal opportunity.


NO school in Topeka Kansas was closed as a result of Brown, no opportunities were reduced, and no choices removed from the table.

The students simply wanted to enroll in the school closes to their home, which,I suppose, was the most "appropriate" school. As a result of Brown Choices were ADDED, opportunities created (no right away of course! But you get my point)

You propose, as a solution SUBTRACTION without explaining how the benefits will outweigh the losses. This flies in the face of the past, present, and any reasonable expectation of the future.

All attempts to affirmatively, as public policy, to close developmental centers has closed have failed. Why? If you say it is simply because of funding I would have to say that you are doing a disservice to people with disabilities.

Today, segregation still exists in fact and practice. Minority students are disproportionately assigned to special education programs, and white students are disproportionately assigned to gifted and talented programs.

Is the solution to close special education?
Is the solution to close GATE programs?

No, that would be absurd, although it would prevent minorities from being ‘segregated’ by an educational model. The solution is ADDITION.

What if a GATE student refuses to attend because all of his friends, and other rewards only exists in regular education. should we close reg. ed to prevent this gifted student from making a poor choice? Or - force the student into a GATE program?

This a good analogy since public education comes from public dollars. It is a poor analogy because public education, for the most part involves minors.

Today, the goal of desegregation is not in the supereminent position. The desire and benefits of ddesegregation is only one constant in a complicated formula. Today, the desire, the right of a consumer to have some semblance of control over his or her life, for better or reasonable worse is more important than what you assert as being a value above all other values.

Maybe tomorrow, when the broad brushed are put away, and we create more opportunities we can have our cake and eat it too.

stanley said...

For the record, regardless of differences of opinions: the discussions on this blog and insights are orders of magnitude above what I could have had with the VV director...or on the list that kicked me off...hope springs...

BTW wondering how program director's opines/facts expressed here (eg, current system is a pathetic failure) effects their funding negotiations w/ RCs and relations w/ less open program directors...perhaps another theme discussion.

stanley seigler

Andy said...


Jeff makes a point, which I think is quite true from a number of perspectives, that people with intellectual impairments, as a minority group, cannot be so easily analogized with other minority groups----as we’ve been doing when we bring up the deaf, seniors, and now (thanks to you!) gifted students. He argues that in present day society the folks we serve are uniquely devalued, relative to other groups. I agree with this, though with the possible, and meaningless, exception of career criminals and maybe the chronically homeless ( . . . and, before too long, cigarette smokers).

The effect of such harsh devaluation impacts not only their place in the world, but the view and expectations they have of themselves. It impacts the expectations of their families and their service providers. It impacts the development, design and delivery of their services, and the expectations, purpose and outcomes of those services. I hope we can all agree on this.

I think Jeff feels that the crushing oppression caused by our low views and estimations will not change without a drastic shift in services. A change that can only be triggered by policies that recognize the disempowering and devaluing effects of our marginal, interminable, imprisoning services and the negligible, absent or absurdly incremental, outcomes they produce.

I can certainly see and understand this line of argument. Our acceptance of services that never begin to approach their stated purpose would be unacceptable in almost any other industry. From the start, sheltered workshops have purported in the bold text of their brochures, in the banners displaying their mission statements, and in the service descriptions of their United Way applications, that they provide essential vocational training needed by a historically unemployed population, to join the ranks of the gainfully employed.

Where on earth would funding continue for job training programs so ineffective that a number of people who enrolled in the 1970’s and 80’s, apparently, still haven’t completed the course? Just a few more decades to get those accuracy percentages around 98%, and to reduce falling asleep at their work stations to 0%, and they’ll be ready for their first real job.

I met a lot of notable people during the first week of my first job in this field, as a CETA aide at the local workshop in 1980. My job turned into a career, with a steady, corresponding rise in responsibility, status and income. Some of the folks I met that first week remain in the workshop, without any of the changes, or benefits, my career has given me . . . which makes me question, who has served whom?

Jeff proposes a drastic transformation, no doubt, in part, because of the extent of our ineffectiveness and the glacial pace of change. (One of the things I so enjoyed when I started doing supported living was how quickly---by the standards our industry---and dramatically lives changed . . .changes measured in months, not generations)

I have no trouble agreeing with Jeff’s assessment of our outcomes and expectations and the effects of each on the other. However, it is at the river of “What’s to Be Done” that I, as his Sancho Panza, must dismount from the donkey of agreement (el burro de acuerdo, as Cervantes would have put it . . .sorry, I’ve been fighting spasms of silliness from the start . . . I finally had to give in to one). I start riding with Paul at this point. More options and opportunities that are more compelling and fun, more flexibility in everything, more education on options for the victims of service and their families with more outreach into the belly of congregate services, more responsive, attentive and informed case management, and, above all else, far more authority and control over all services by the recipients.

If we agree that people with disabilities are significantly devalued, how do we not devalue them further when we dismiss their interests and choices in the type and nature of their services? That others declare they know what’s best for you, and use that power to make, for you, major life decisions, cannot be an empowering experience.

I understand the impulses to simply end the absurdities of the system, and the temptation of an end to justify the means . .but I have overwhelming doubts that those ends will come anywhere close to what we hope. What I’ve seen of the lives of numerous people with disabilities who have, for years now, lived in their own home and worked at real job, is, sadly, very little change in their societal status or standing . . . very little change in their involvement and connections in their communities, and usually no change as far as developing significant relationships with people without disabilities. Those precious, balanced, enduring friendships aren’t happening. Has anyone else noticed this?

I would love to be wrong . . . to be blinded by my cynicism . . . a hostage to my preconceptions and my low expectations . . . which, I must admit to having for our culture and communities. Maybe I am not giving it enough time. Maybe the cultural openness, understanding, and familiarity that I believe we lack, and need for true integration, will take decades and generations to evolve. Whether or not we see it in our lifetime doesn’t diminish what we can do today to advance the cause. The abolitionists of the early nineteenth century were viewed, as I’m sure some see Jeff, as dangerous extremists. The work they did then is directly linked to the successes of a black presidential candidate today.


Doug said...

Stanley, that would be a good topic to discuss. Just so you know, I'll be on vacation next week and, no doubt, swamped when I get back but in early March we can start a new topic. By the way, the chinese water torture version of "support" is what we all think we fear. It seems like we tolerate it a lot, though.

Paul, the public v. private argument also leads to a forked road. There are certainly distinctions between the freedom to choose using private resources and those using public resources. If someone wants to deal drugs without public support, they are free to until captured or killed. If someone wants to deal drugs with public support, they need lobbyists. I know there are people who are passionate on both sides of this debate but as a policy wonk, my tendency is to see a practical consideration- we spend a heck of a lot of money placing people where they don't want to be, cleaning up after those people when they behave rationally, and then finding a new environment similar to the one that worked badly the last time. Service providers, at least, seem behavior modification resistant. Oh, and I won't sweat your typos if you'll forgive mine. I'm appalled by what I read when I bother looking at my own writing these days.

Jeff, I find your post compelling but ironic. You seem to be saying people with developmental disabilities only get to make low level choices, at the same time you're arguing against making the choice of what environment to live in and who to associate with. And, yes, public policy gets to guide public dollars. Often by accident.

Paul, isn't officially sanctioned segregation, such as a publicly funded congregate care De Jure segregation?

Anonymous, granted society shouldn't want it, but the people who make up society have preferences that bring some people together apart from others. Is it wrong that people who join MENSA want to spend time with other brainiacs, excluding me because I'm dumb as a stump? I guess I could serve tea or something. Does anyone have a recipe?

Paul, good points all but what do we do about the fact that service providers as their referrals taper come into regional centers and complain and if they do so compellingly suddenly get referrals. Do you think we can change the provider-centered system without a clear policy direction?

Stanley, that could well be another discussion, but my instinct is to avoid shining any more light on the negotiations between vendors and regional centers or other funding streams. That may be an equally unhealthy system, but I'd like to think the clients are the point and often peripheral to the discussions that happen in public. I bet you agree, too.

Andy, I'm not sure that we'll get to someone being wrong or right here, but I know from experience if we label you as wrong we won't be wrong for long.

Thanks, everyone. Just a notice again that I'm taking a vacation next week and am actually finding the need to work here lately so please continue unmoderated for the next couple weeks and I'll bring you all back next month.

paul said...

“Paul, isn't officially sanctioned segregation, such as a publicly funded congregate care De Jure segregation?”

Excellent question.

Would a YES answer imply that ANY public funding that either facilitates, or at its end results in, segregation is "officially sanctioned segregation?"

Would rebuilding New Orleans, which is 70% black, with public funds be officially sactioned segregation?

If we rebuild New Orleans but engineer it to be more “integrated” does that lead to officially sanctioned discriminating against blacks because more blacks are turned away in order to build our rainbow?

“I have no trouble agreeing with Jeff’s assessment of our outcomes and expectations and the effects of each on the other.”
- Andy -

Nor do I.

“what do we do about the fact that service providers as their referrals taper come into regional centers and complain and if they do so compellingly suddenly get referrals. Do you think we can change the provider-centered system without a clear policy direction?”
- Doug -

This sounds like a Regional Center problem. Maybe the solution is to get ride of Regional Centers de jure

I still do not get the defintion:

According to the definition of “community-based” as provided, an Adult Residential Facility (aka group home) in a residential neighborhood, with no other group homes within miles, with 4 consumers is congregated, and the 4 unit apartment complex across town that has a total of 8 people in “supported-living” is Community-based.

Sounds a bit too esoteric, if not down right silly

Doug said...

Paul, I agree 100% with your last paragraph. Anyone who thinks you can get information from a vendor code needs a remedial lesson in how this system actually functions. I know people with decades invested who still think there's a reliable distinction between SLS and a group home. It's hilarious.

Vendor codes are a lie people agree to believe. Incidentally, in any discussion of reforming the system, the sentence "we need a new vendor code for..." is always the last thing I hear. After that, I go back to doodling.

paul said...


I am glad you replied, for I forgot to wish you well on your vacation.

Now i can slip it in under the wire.


Andy said...

Pssssst . . . is he gone?

You know who . . . Doug!

Did he leave for vacation? Are we unmoderated? Has that sour old school marm left the building?

When Doug’s away the mice will play. Let’s take over this blog! . . . Upend the furnishings! Write on the walls! Eat Doug’s porridge and, above all, lower the level of discourse!

I’ll go first. Jeff, you pointed out that there are fewer people with disabilities today working for the government than there were 15 years ago . . . like it’s a bad thing. Good lord, don’t they have enough stigmas? You wanna add “government worker” to the list?

And Paul, any more foreign words and phrases from you, and you'll face a sentence of five years to life to the weekly wine and cheese socials of the Esperanto Society of Carpinteria.

Threats, sarcasm, name-calling . . . and that’s just the start. With a little help, dutiful Doug will have to look for a blog-sitter before he dares to consider another vacation!


Anonymous said...

I assume doug is gone- who goes to iceland at this time of year- assuming he doesn't read the blog even when he returns- does anyone really understand at times what he is saying - maybe i am the only one with an intellectual challenge- but the man can use words and phrases and say nothing of importance

Andy said...

Jeff, you are absolutely right! Doug obviously needs more training before he should be allowed to moderate a blog. But it’s not just him. Outside of you and me, nobody posting here makes any sense at all. Like Doug, they need more training. I think the time has clearly come for a COUP DE BLOG! We need to turn this site into a sheltered blog shop. I’ll be the program director and you can be the floor supervisor.

We’ll need to develop some goals for the “writers” who post here, and if we can boost attendance we should be able to make a pretty penny out of it . . . of course, that’s not why we’re doing this work . . .we’re really doing it to help people less fortunate than we.

Doug was far too generous with his compliments of the other posters----or should we say, “unable to manage his accolades” (another reason why he’s not ready to moderate a real blog). We’ll employ scientific methods (I think we just need a clipboard and a stop watch) to evaluate the relative skill levels of the others so that we can pay sub-minimum praise. Let’s come up with some baselines and write up some in IBPs (Individual Blogger Plans).

We can start with Doug. His productivity is quite good, however, as you point out, he’s very difficult to understand. I’m sure there’s some medication for him. I’ve heard of something called “Claritin” which probably helps improve people’s clarity. (I know where to go. I take all of my guys to a G. P. who will prescribe anything I think they need to make them easier to deal with or go to bed earlier) If that doesn’t work, we can look at getting Doug a communication device . . . a cheap, basic one that can’t say “Iceland” . . . the simpler it is, the better for Doug (and the rest of us!).

Paul’s productivity is also surprising but he needs to improve his accuracy. We can give him writing samples to work on to track his typos. . . or better yet, he can start by sorting words . . . into piles of nouns, verbs, pronouns, etc. Also, he seems to obsess on laws and court cases which leads him to the excessive use of Latin phrases. Maybe it’s just attention-seeking, but if it’s not addressed it can, god forbid, develop into intermittent lawyering. We need a goal that will stop this behavior ASAP!

Stanley came to the blog with a file this thick. It describes a history of non-compliance and perseverating on “happy campers”. Of course, this has led to him being demitted from other blogs and forums. I’m afraid if he blows it again here, we’ll have no choice but to recommend he go to a “developmental blog.” He might actually be happier with that kind of structure.

Are we heroes, Jeff? That’s for others to decide. Sure, it’s not easy working with people like this, but when you care as much as we do, it’s worth it.


paul said...
Word of the Day for Monday, February 18, 2008

sine qua non \sin-ih-kwah-NON; -NOHN; sy-nih-kway-\, noun:

An essential condition or element; an indispensable thing.

Women's enfranchisement was crucial to them -- indeed, a sine qua non, since all other progress for which they worked, such as higher education and entrance into the professions, would be meaningless if women continued to be second-class citizens.
-- Lillian Faderman, To Believe in Women
Of the various attributes we fiction-writers require, he said, "one of the most important is detachment. Of course tenacity of purpose is the sine qua non, otherwise we'd never keep on with it for the year or two years or longer that it takes to finish the work."
-- Barry Unsworth, Sugar and Rum
However we choose to define a classic, a sine qua non is that the material lend itself to reinterpretation in the light of changing circumstances.
-- Matthew Gurewitsch, "A Country of Lesser Giants", New York Times, April 4, 1999
Sine qua non is from the Late Latin, literally "without which not."

paul said...

First, I must stoutly protest about the complete lack of confidentiality in regards to us people with inCAPABILITIES.

As for Doug – while he may now, “use words and phrases and say nothing of importance” he is part of a Procrustean “no hold barred” plan to elevate him to the title of “advocate” where he should find himself able to “shout words and phrases of little meaning but with the appearance of saying something important”

Afterwards – he might be able to join with Andy and Jeff form an Institute, coalition, or Junta and Stanley, Pogo, and myself can live in peace.

Andy said...

Listen Paul, if you must self-advocate, you should do so in the privacy of your shared bedroom at the group home.

Also, your continued outbursts of Latin words and dictums (i.e.--or, id est--obiter dicta) requires our immediate attention. While you were gone, we met with your IDT (Indiscriminate Discipline Tyrants) and have developed a new individual service plan for you.

LONG TERM GOAL: Paul will display the skills and behavior needed for placement with a regular blog.

SEMI-ANNUAL OBJECTIVE: Paul will refrain from of ILSD* behaviors while blogging 90% of the time with 80% accuracy, seven out of ten days.

*ILSD = Intermittent Latin Speaking Disorder

BASELINE: Currently Paul seems to have confused his job at Starbucks as a barista with that of a barrister (undoubtedly assuming that “barista” is the Latin word---or, at least, the Italian word---for “barrister”). Consequently, he seeks any opportunity to infuse his writing with the Latin words and phrases common to the practice of law, hoping to add jurisprudent weightiness and opacity to his prose.

stanley said...

jeez, Ill be glad when doug gets back so the comedians can get back to their day jobs...

ironic comments made when dougs not in would be very sad if not so very humorous...and much said when dougs is here would also be very humorous if it werent so sad…seems we fell down the bureaucratic rabbit hole along the way to the fair.

stanley seigler

paul said...


I will accept my new Individual Service Plan. However, I must protest about my Tolerance Training Program implemented by Pogo.

The answer to EVERY one of my problems sounds the same!

“That’s ok – it is not my staffs' fault that their cars gets dirty and need to be washed. It is the the bureaucratic rabbit hole and there is nothing I can do”

“That’s ok – Staff need to watch football games on Sunday, I can shop for groceries ANY day - the compassionate conservatives are to blame for NOT allowing my groceries to be delivered right to my door”

Take three deep breaths and say,
“That’s ok, it is not my group home's fault it is the policitican in Sacramento. I should write them a letter or join an Action Network to form a single-voice.”

Andy said...


Apparently you are not the only one who cannot enjoy a blogging life without Doug. Though I had hoped to see a more democratic blog in his absence, with me as King, you and others insist upon your little man behind the curtain . . .

Doug! The pyrotechnic wunderkind . . . with his big bag of bombast and sparklers and huge, explosive, system changing questions, issues and insights.

Doug! Master of the three rings! His towering intellect, ensconced beneath a top hat, his sardonic sneer chilling the wax of his handlebar mustache, and his will imposed upon all ye who enter here with a whip and a chair . . . his legion of blogging disciples responsive to only him . . . and the cool caress of his lash.

Freedom is feeling easy in the harness, Stanley . . . but only when Doug drives and dazzles the team.

Fear not, his return, I’m sure, is imminent. I checked a weather site for the latest reports on Reykjavik, Iceland. It listed today as, “Mostly cloudy, chilly, dreary.”

Obviously, Doug is still there.


Damastes said...

All seriousness aside…

I got an email from Doug today and he is doing well. For those of you that are unaware Doug is in Iceland for the EU convention.

The annual Esoteric Union Convention has a Mythology/Philosphy/Ubran Legends theme this year and Doug is representing team Cynic.

Unfortunately Doug was injured early during the Sisyphean relay. During his leg Doug, tripped, fell, and yelled, “please abate the mass of this inertial object upon my appendage”, In other words, “Help – the stone is on my ankle”.

Unfortunately, before Doug’s teammates could decode his tocsin he sustained a severe chaffing injury to his Achilles tendon

After this initial setback the team did well and placed second in the “Gordian’s Knott” event. Third in “Hobson’s Choice”, and the team got a record time birthing Minerva from Doug’s head. That’s the California Spirit.

I heard that they beat out the Skeptics by a hair and destroyed the Sophists to win Damocles Sword as First Prize. He also said they ate the White rabbit to celebrate! (Sorry Stanley)

I also heard that Doug met a girl named Echo at the traditional Toga party – do I hear wedding bells

Andy said...

Damastes said... “I also heard that Doug met a girl named Echo at the traditional Toga party – do I hear wedding bells?”

A girl named Echo? Wedding bells? It can be no other way! A matrimony of divine design!

Doug speaks and hears himself a moment later . . . His grand thoughts and big-ass words returning to their maker verbatim (settle down, Paul) . . .. escaping the perils of the brutish listener’s intellectual limitations---like spawning salmon in a primordial dash to the cold, deep, dark sanctuary of their birth.

Did he ever dare dream of such a perfect match? An audience unlike any other . . . captive, lifelong and never responding to his grandiloquence with, “huh?"


Can Doug be his own best man?

Doug said...

OK, that was some great comedy. Andy, you win the prize for the line about the dreary weather in Reykjavik. I'm back and working on a new post.

Damstes, that was clever, but if you'll excuse me I have to get back to my reflection.

Andy said...


So good to have you back . . . and just in time!

Some of the other posters were really starting to get out of control and really getting carried away with themselves. They tried to use “DD System Reform” as a forum for their sad little vanities . . . trying to impress everyone with their clever repartee (as if they could ever compete with you, Doug!).

In your absence, I tried to maintain the thoughtful, deliberate, elevated discussion you’ve established for us to address the serious and compelling issues currently facing our profession . . . but it was like herding cats. I don’t know how you do it.

Anyway, as I said, great to have you back and not a moment too soon! I’m sure you look great after the time off . . . have you been working out? I swear you look taller! . . . and that cologne you’re wearing is fantastic. It suits you quite well.


p.s. I can’t wait for the new post you’re working on . . .

Quentin said...

This is great!