Tuesday, January 25, 2011

Why I Resigned from The Alliance for Full Participation

We often compromise in the interest of a final goal – in life and politics you must – but in this instance, well, it was just way over the line for me. For many years now, I have been a strong advocate for ending the segregation of people with disabilities in education, community living, and employment. Despite numerous advances in technology and support strategies, the disability system remains largely segregated and resistant to change.
Last year, I was invited to participate on an Advisory Board for the Alliance for Full Participation (AFP). The AFP is composed of fifteen organizations. The goal of the Alliance states: “adult service providers must work to remove barriers and support individuals in real jobs for real pay” – something I believe in. In my first meeting with the AFP Advisory Board, we recommended that a clear national goal be set, rather than vague wording of “increasing” employment opportunities. This resulted in a revised AFP goal of doubling the employment rate for people with developmental disabilities by 2015.
However, very shortly, an issue arose that tested the AFP’s commitment to its goals. In a December 9, 2010 memo to the Obama Administration from several national agencies (those in bold are AFP members: ACCSES, Easter Seals, Goodwill Industries® International, NISH, The Arc of the United States, and United Cerebral Palsy), several positions were put forth regarding pre-vocational services. The memo lists 13 guiding value statements. 11 of these statements were very supportive of integrated employment. However two of them were very inconsistent:
Value 10: While a priority should exist for competitive, integrated employment, it should be recognized that other valid service outcomes may occur, including paid work in center-based program settings, in accordance with the Fair Labor Standards Act, self-employment, and volunteer (unpaid) work.
Value 12: …Prevocational services provided to individuals may assist them in reaching their optimal level of functioning…
A state should never subject an individual to arbitrary time limits regarding the provision of prevocational services, such as time limits based on the site or location of the prevocational services or by substituting part-time services for full-time services when full-time services are considered necessary and appropriate by the IDT.
There are several problems here. First, if you are committed to changing your services to integrated employment, then sheltered work should NOT be a valid service outcome. Tolerating a two sided service model (center-based training and integrated supports, which are contradictory at their core) is the main issue why segregated services are not declining. In addition, the value noted above in the memo that states that using pre-vocational services to prepare for some “optimal level of functioning” has not a shred of evidence to support it, and in effect the long history and the counter experience of supported employment shows it is a complete waste of time and money. The memo instead states that:
…prevocational services may be “provided in a center-based or other community based program setting to persons who are not expected to join the general work force or participate in a transitional sheltered workshop within one year of service initiation… If compensated, individuals are paid at less than 50 percent of the minimum wage… Services include activities that are not primarily directed at teaching job-specific skills but at underlying habilitative goals (e.g., attention span, motor skills).”
Wrong. To achieve full participation, disability services needs to get rid of segregated, pre-vocational readiness training, period. We also need to end subminimum wages, which are exploiting the work of people with disabilities. Finally, the recommendation to continue to provide pre-vocational training without a time limit has brought us to a national disgrace in which far too many individuals with disabilities have life-long segregation and never experience community employment.
So, we have a situation where some members of an Alliance dedicated to integrated work are advocating goals contrary to mission of the Alliance. After a long discussion by the Advisory group, we recommended that that the Alliance Board request that the three agencies clarify why they have advocated for center-based and pre-vocational employment, given their commitment to the Alliance for Full Participation. A public discourse of this issue is sorely needed. However, the response sent back to the Advisory Board is excerpted below:
Individual AFP organizations, organizational representatives, and advisory committee members should communicate any concerns about positions and actions of individual member organizations to the organizations themselves… AFP’s Board recognizes that each organization, while supporting AFP’s vision and mission, must also support its individual agenda and constituencies, which may lead to inconsistencies… AFP wants to avoid being drawn into a conflict that would put a focus on negative action, rather than the positive focus of its goal.
My resignation immediately followed. Being drawn into a rational discourse of where we disagree is exactly where we need to be. Nearly all agencies have inconsistencies in their current services and goals for the future, and of course these are not limited to AFP members. But the position taken here by some AFP members aren’t minor inconsistencies. Nor are they just inconsistent services during a process of agency change, which would be understandable. They are positions strongly advocated to federal policymakers and diametrically opposed to the stated values and reason of the Alliance. It’s one thing to tolerate inconsistencies as an agency moves toward a goal as part of a change process; quite another for an Alliance member to directly advocate a contradictory goal in a major policy memo to the Obama administration. I don’t believe you can just ignore it.
Focusing just on what you want cannot mean ignoring what you don’t want, especially when 30 years have taught us that our system change in disability services has not occurred by just trying to focus on integrated employment. Indeed, civil rights was not just about promoting integration; it was about calling attention to the unjustness of segregation. There is no difference in the disability movement. There is value in “keeping people at the table,” but not if they remain intransigent over evolving their services. Remember, we are talking about real people left in centers doing meaningless things with no time limits. Real people.
Despite my seemingly intractable position here, I am not advocating a strident message, nor a disrespectful one – just the truth told calmly. You cannot promote segregated, pre-vocational, non-time-limited training facilities and at the same time stand for full participation. While recognizing an alliance of organizations is a precarious and potentially useful thing, it is of little value and limited credibility if it ignores its members advocating opposing concepts. When the AFP decided to turn away an opportunity for such discussion, it might as well have become an Alliance of Sometimes Participation.
The AFP has an opportunity to frame a discussion, but the goal cannot just be to articulate a vision of integration. After almost 30 years of articulating integration, does anyone really believe what the field just needs is more education about it? There is a real urgency here. The longer hypocrisy is shielded, the longer the goal of Full Participation will take. If this is the leading edge for change, it is no wonder we get nowhere - there is just no energy in it. There are plenty of reasonable steps that can occur - highlighting the debate on the web, at the upcoming AFP summit, etc. Instead, the issue has been ditched. On the plus side, this has crystallized the problem quite clearly.
I write this on Martin Luther King Day, who said:
“In the end, we will remember not the words of our enemies, but the silence of our friends.” Friends, I hope we will not again just stand silent.

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11 Comments:

At January 26, 2011 at 4:37 AM , Blogger Janet Elizabeth Hunt said...

"Applause"

 
At January 26, 2011 at 11:15 AM , Anonymous Charles Houston said...

"You cannot promote segregated, pre-vocational, non-time-limited training facilities and at the same time stand for full participation." Yes you can, if you truly believe in, and practice, the development and delivery of individualized services, and allow for informed choice. There is no employment outcome that is right for everyone. The elimination of facility-based services will leave many people without any services.

 
At January 26, 2011 at 1:27 PM , Blogger rubymoore said...

Hey, Dale. We were having this conversation in Keene, NH in 1982. Did you think we'd still be having the conversation in 2011?? Ruby

 
At January 26, 2011 at 2:36 PM , Blogger Martin said...

G'Day Dial (writing in accent?) Inspirational and spot on mate - fired me up for another day. I see you have caused minor controversy already. The problem is that when you are working in sheltered employment and see some good stuff you can allow that to blind you to the fact that the folk that go in, rarely come out and the work that they do is routinely 'make-work' or grossly underpaid. A good bloke I know got it right when he used the analogy of a haemorrhoid - you can shrink 'em and it's hard to be rid of them.

 
At January 26, 2011 at 4:50 PM , Anonymous Rebecca Shuman said...

Spot on, Dale. It is certainly confusing to everyone from the President of the United States, all the way down to the individual person receiving services and the staff who support them when an organizations signs on to a powerful vision of real work and to a statement that essentially says, "yes, we support the overall vision, but need to be able to do other things." Informed Choice - code for manipulation.

 
At January 26, 2011 at 9:05 PM , Anonymous Anonymous said...

Very powerful commentary. Thank you for taking a stand and demontrating true advocacy. My first internship in graduate school was at a sheltered workshop and I remember asking myself
( unfortunately like the "silent friend" referenced by MLK), "what are these people doing here?". That said, can anyone share ideas about how we would look to include people with more profound disablities,such as those who are fully non-communicative, within the competitive market. I am assuming customized employment is the answer, but it's important that agencies are not incentified to drop them from services all together in order to demonstrate "success".

 
At January 27, 2011 at 1:56 PM , Blogger Hugh said...

Bravo from Vermont!! Paternalism comes in many disguises. There is a place for everyone in every community. Sometimes it involves a bit more time and effort ($$), but in the long run is worth it.

Kudos to you for sticking with your principles!!

 
At January 27, 2011 at 2:41 PM , Anonymous steve said...

Dale,

Thanks for your thoughts and clarity of purpose. We can't go back and undo what we have done, but can move on to what we believe to be better. It will be an impossibly long road to integration for too many people if we keep supporting segregation.

 
At January 27, 2011 at 3:58 PM , Anonymous Anonymous said...

But what about those individuals who choose not to go pursue community employment? Those who refuse every opportunity you present for full integration and say "I just want to stay here!" That is where the balance needs to be. Respecting choice. We should not increase our sheltered workshops with new clientele but we should allow those who have been there for years to choose to stay if they so wish.

 
At January 27, 2011 at 9:06 PM , Anonymous Anonymous said...

"Real people." Says it all to me. Why is it that a person will developmental disability is not seen as a real person?

Problem here is that the people who run these large segregated systems are afraid of the changes that will disrupt their comfortability and their perceived job security. Thus they continue the these segregated, life meaningless systems that hold people prisoners day after day, year after year. Are they any different than the authorities on that day eventful day in Little Rock, Arkansas!

 
At February 3, 2011 at 9:26 PM , Blogger Nebraska DSP's said...

Standing Ovation - We have talked out of the "box" for so long, it is time to move our feet and make it happen for all poeple.
If sheltered work and sub-minimum wage is okay, then lets us all spend the next 30 years of our lives there - Anyone want to sign up??? If sheltered work is okay-then can we promote slavery? - who are we kidding, sheltered work is slavery - you cannot make a life when you are working and livin for the man!

 

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Why I Resigned from The Alliance for Full Participation

We often compromise in the interest of a final goal – in life and politics you must – but in this instance, well, it was just way over the line for me. For many years now, I have been a strong advocate for ending the segregation of people with disabilities in education, community living, and employment. Despite numerous advances in technology and support strategies, the disability system remains largely segregated and resistant to change.
Last year, I was invited to participate on an Advisory Board for the Alliance for Full Participation (AFP). The AFP is composed of fifteen organizations. The goal of the Alliance states: “adult service providers must work to remove barriers and support individuals in real jobs for real pay” – something I believe in. In my first meeting with the AFP Advisory Board, we recommended that a clear national goal be set, rather than vague wording of “increasing” employment opportunities. This resulted in a revised AFP goal of doubling the employment rate for people with developmental disabilities by 2015.
However, very shortly, an issue arose that tested the AFP’s commitment to its goals. In a December 9, 2010 memo to the Obama Administration from several national agencies (those in bold are AFP members: ACCSES, Easter Seals, Goodwill Industries® International, NISH, The Arc of the United States, and United Cerebral Palsy), several positions were put forth regarding pre-vocational services. The memo lists 13 guiding value statements. 11 of these statements were very supportive of integrated employment. However two of them were very inconsistent:
Value 10: While a priority should exist for competitive, integrated employment, it should be recognized that other valid service outcomes may occur, including paid work in center-based program settings, in accordance with the Fair Labor Standards Act, self-employment, and volunteer (unpaid) work.
Value 12: …Prevocational services provided to individuals may assist them in reaching their optimal level of functioning…
A state should never subject an individual to arbitrary time limits regarding the provision of prevocational services, such as time limits based on the site or location of the prevocational services or by substituting part-time services for full-time services when full-time services are considered necessary and appropriate by the IDT.
There are several problems here. First, if you are committed to changing your services to integrated employment, then sheltered work should NOT be a valid service outcome. Tolerating a two sided service model (center-based training and integrated supports, which are contradictory at their core) is the main issue why segregated services are not declining. In addition, the value noted above in the memo that states that using pre-vocational services to prepare for some “optimal level of functioning” has not a shred of evidence to support it, and in effect the long history and the counter experience of supported employment shows it is a complete waste of time and money. The memo instead states that:
…prevocational services may be “provided in a center-based or other community based program setting to persons who are not expected to join the general work force or participate in a transitional sheltered workshop within one year of service initiation… If compensated, individuals are paid at less than 50 percent of the minimum wage… Services include activities that are not primarily directed at teaching job-specific skills but at underlying habilitative goals (e.g., attention span, motor skills).”
Wrong. To achieve full participation, disability services needs to get rid of segregated, pre-vocational readiness training, period. We also need to end subminimum wages, which are exploiting the work of people with disabilities. Finally, the recommendation to continue to provide pre-vocational training without a time limit has brought us to a national disgrace in which far too many individuals with disabilities have life-long segregation and never experience community employment.
So, we have a situation where some members of an Alliance dedicated to integrated work are advocating goals contrary to mission of the Alliance. After a long discussion by the Advisory group, we recommended that that the Alliance Board request that the three agencies clarify why they have advocated for center-based and pre-vocational employment, given their commitment to the Alliance for Full Participation. A public discourse of this issue is sorely needed. However, the response sent back to the Advisory Board is excerpted below:
Individual AFP organizations, organizational representatives, and advisory committee members should communicate any concerns about positions and actions of individual member organizations to the organizations themselves… AFP’s Board recognizes that each organization, while supporting AFP’s vision and mission, must also support its individual agenda and constituencies, which may lead to inconsistencies… AFP wants to avoid being drawn into a conflict that would put a focus on negative action, rather than the positive focus of its goal.
My resignation immediately followed. Being drawn into a rational discourse of where we disagree is exactly where we need to be. Nearly all agencies have inconsistencies in their current services and goals for the future, and of course these are not limited to AFP members. But the position taken here by some AFP members aren’t minor inconsistencies. Nor are they just inconsistent services during a process of agency change, which would be understandable. They are positions strongly advocated to federal policymakers and diametrically opposed to the stated values and reason of the Alliance. It’s one thing to tolerate inconsistencies as an agency moves toward a goal as part of a change process; quite another for an Alliance member to directly advocate a contradictory goal in a major policy memo to the Obama administration. I don’t believe you can just ignore it.
Focusing just on what you want cannot mean ignoring what you don’t want, especially when 30 years have taught us that our system change in disability services has not occurred by just trying to focus on integrated employment. Indeed, civil rights was not just about promoting integration; it was about calling attention to the unjustness of segregation. There is no difference in the disability movement. There is value in “keeping people at the table,” but not if they remain intransigent over evolving their services. Remember, we are talking about real people left in centers doing meaningless things with no time limits. Real people.
Despite my seemingly intractable position here, I am not advocating a strident message, nor a disrespectful one – just the truth told calmly. You cannot promote segregated, pre-vocational, non-time-limited training facilities and at the same time stand for full participation. While recognizing an alliance of organizations is a precarious and potentially useful thing, it is of little value and limited credibility if it ignores its members advocating opposing concepts. When the AFP decided to turn away an opportunity for such discussion, it might as well have become an Alliance of Sometimes Participation.
The AFP has an opportunity to frame a discussion, but the goal cannot just be to articulate a vision of integration. After almost 30 years of articulating integration, does anyone really believe what the field just needs is more education about it? There is a real urgency here. The longer hypocrisy is shielded, the longer the goal of Full Participation will take. If this is the leading edge for change, it is no wonder we get nowhere - there is just no energy in it. There are plenty of reasonable steps that can occur - highlighting the debate on the web, at the upcoming AFP summit, etc. Instead, the issue has been ditched. On the plus side, this has crystallized the problem quite clearly.
I write this on Martin Luther King Day, who said:
“In the end, we will remember not the words of our enemies, but the silence of our friends.” Friends, I hope we will not again just stand silent.

Labels: ,