Welcome to Closing the Circle Cross Disability Collaboration Persistence Change brought to you by the Café Technical Assisted Center.

This is not an in-depth e-learning instead we consider it an e-discussion to talk about a topic and maybe spark some ideas in your mind about different ways of doing things to push the envelope a little bit further and think about how cross disability collaboration could benefit you, the population you represent as well as others.

We’d like to understand the history of the disability movement a little bit better and how it was split according to diagnosis, need and funding stream and to recognize the value of a unified cross disability collaboration to manifest systems change as well as understand what components of systems change are right for cross disability transformation and what components or pieces are better served through target population efforts. Finally, to have you think about some different strategies to work as a broader team that presents strength in numbers across representation of needs and an advocacy approach that ensures the needs of all persons that they are understood and very well vocalized.

First, let’s do a little bit of a historical overview. Let's look at how our country got to where it’s at today in terms of the disability movements.

The disability rights movement actually began forcefully in the 1960s, but it was tied to previous disability efforts. Cross disability focus emerged in the 1970s and it was modeled after African-American and women’s rights movements.

Disability rights movement photo courtesy of Tom Olin
ERA Activists picture from ERA Summit Equal Rights Amendment http://www.equalrightsamendment.org/

Some of the early efforts began in 1817 when the American’s School for Deaf was founded in Hartford, Connecticut and in 1848 the first residential institution for people with mental retardation was founded. In 1883, the eugenics movement led to the passage of laws that prevented people with disabilities from moving to the United States, marrying or even having children.

In 1946, the National Mental Health Foundation was founded by conscientious objectors who served as attendants at state mental institutions during World War II. In 1950, the social security amendments established a federal and state program to aid the permanently and totally disabled. Again, in 1950, the Association for Retarded Children of the United States, which was later renamed the Association for Retarded Citizens and then called the ARC, is founded.

In 1956, congress finally passed the social security amendments which created a social security disability insurance known as SSDI program for disabled workers aged 50 to 64. In 1965, Medicare and Medicaid were established through a passage of the social security amendments. In 1972, the Judge David L. Bazelon Center for Mental Health Law was founded in Washington, D.C. to provide legal representation and to advocate for the rights of people with mental illness.

1973 was a busy year. That was the year that the first handicapped parking stickers were introduced in Washington, D.C. It seems as though we've always had handicapped parking stickers but when you look back, it really wasn’t that long ago that they first surfaced in the United States. The first conference on human rights also occurred that year as well as the passage of the Rehabilitation Act of 1973 which confronted discrimination against people with disabilities and this included section 504 which prohibited programs from receiving federal funds and from discriminating against otherwise qualified handicapped individuals, which formed the framework for [inaudible 0:04:34] federal law that included the Americans with Disabilities Act of 1990 or ADA as most of us know it.

In 1975, the education for all handicapped children act or known as public law 94142 was passed. It established the right of children with disabilities to public school education in an integrated environment. This act is considered the cornerstone of the federal disability rights legislation. Again, in 1975, the US Supreme Court, in O’Connor versus Donaldson, ruled that people cannot be institutionalized against their will in a psychiatric hospital unless they are determined to be a threat to themselves or to others. In 1976, the Disability Rights Center was founded in Washington, D.C.

In 1979, the National Alliance for the Mentality Ill was founded by parents of persons with mental illness. In 1980, congress passed the social security amendments with section 1619 designed to address work disincentives within the social security disability insurance and supplemental security income. Other provisions mandated a review of social security recipients and this led to the termination of benefits of hundreds of thousands of people with disabilities. In 1980, congress passed the Civil Rights of Institutionalized Persons Act.

Between 1981 and 1984, the Reagan administration terminated the social security benefits of hundreds of thousands of disabled recipients. Several disabled people in despair over their loss of benefit committed suicides. In 1984, congress passed the social security disability reform act requiring that payment of benefits and health insurance coverage continue for terminated recipients until they exhausted their appeals and that decisions by social security administration to terminate benefits are made only on the basis of the weight of the evidence in particular recipient cases.

In 1986, the Protection and Advocacy for the Mentally Ill Individuals Act was passed and this setup protection and advocacy agencies all over the United States for people who in-patients or residents in mental health facilities. In 1990, the ADA, Americans with Disabilities Act was signed by President George Bush. The law is the most sweeping disability rights legislation in history, for the first time bringing full legal citizenship to Americans with disabilities.

In 1996, congress passed legislation eliminating more than 150,000 disabled children from social security roles as well as individuals who were alcohol or drug dependent. In 1999 in Olmsted versus L.C. and E.W., the Supreme Court decided that individuals with disabilities must be offered services in the most integrated setting. Again, in 1999, the Work Incentives Improvement Act, ticket to work as we know it, became a law allowing those who require healthcare benefits to go to work.

That brings us to our current history. You can see that in the past, many things occurred, many changes, everything offering hope to individuals with disabilities as they climbed the ladder and continued to promote for their rights for independence. The Commonwealth of Virginia House of Delegates approved a resolution expressing regret for its eugenic practices between 1924 and 1979. There were revisions, rewrite and reauthorization of hundreds of pieces of legislation in law related to the rights of individuals with disabilities and most recently, the healthcare reform push by President Obama resulted in the Patient Protection and Affordability Care Act.

Let’s look at a couple of terms that emerged during the history and the evolution of the disability rights movement. The definition of disability is actually set forth in the Americans with Disabilities Act of 1990, ADA, and it does not distinguish between type, severity or duration of the disability. It states that the term disability means, with respect to an individual, a physical or mental impairment that substantially limits one or more of the major life activities of such an individual, a record of such impairment or being regarded as having such an impairment.

Now remember, this did not emerge concurrently across all disability programs until 1990. Do you think that the definition followed history and funding? Do you believe that this captures a picture of how disability movements emerged throughout the history of the United States? Likely not because what we have seen is that many of the disability movements occurred within a diagnosis, within a disability itself and that the movements, although they move together, seem to be moving at different speeds throughout the history of the country.

Collaboration is working together to achieve a goal. It’s a recursive process meaning that it repeats itself, it’s never ending, where two or more people or organizations work together to realize shared goals. This is more than the intersection of common goals seen in cooperative adventures. It is a deep, collective determination to reach an identical objective. In creating a common movement, what we’d like to do is identify those things that we agree upon, those things that cross into and intersect with our own beliefs, with the things that we want to see happen across the country. It doesn’t matter whether you’re a developmental disabled population, whether you represent mental health or others, such as children, youth, families, children with special healthcare needs, individuals with traumatic brain injuries or veterans. It’s those common things that bring us together. Those things that we all believe in is independent rights of individuals no matter what their abilities are that pull us together to collaborate and make change as a group.

In creating a common movement, what we’d like to do is identify those things that we agree upon, those things that cross into and intersect with our own beliefs, with the things that we want to see happen across the country. It doesn’t matter whether you’re a developmental disabled population, whether you represent mental health or others, such as children, youth, families, children with special healthcare needs, individuals with traumatic brain injuries or veterans. It’s those common things that bring us together. Those things that we all believe in is independent rights of individuals no matter what their abilities are that pull us together to collaborate and make change as a group.

Cross advocacy means creating a common movement with the circle of collaboration and rebuild on those commonalities while minimizing competition. Now we’re not unrealistic here. We understand, recognize and acknowledge that organizations have to compete with one another for the meager dollars that are available in our current economy, but what we mean is we don’t purposely go out after one another’s dollars and that we minimize the competition and build upon one another. In addition, we cover for one another. When you’re in a meeting and someone says something derogatory about another disability, do you have the knowledge and the stamina to stand up for them if they’re not at the table? This is cross disability advocacy.

From the positive aspect, what would it mean to the movement and systems change if all disabilities identify their commonalities and work together? What would it mean to other special interest groups? Might they have to join us? Might they have to join the larger group in order to accomplish some of their goals? What might it do to current funding streams in silos? These are some of the questions that you should ask yourself when you’re considering cross disability collaboration.

Maybe you’re starting to think right now about how cross disability collaboration could change the landscape. Can you imagine what it would look like at autism day at the capital if all individuals, all organizations to represent persons with disability showed up in support to show their solidarity? What about if there was a demonstration out in front of a hotel regarding ECT? Certainly, you would like to see all disability organizations marching alongside those who had actually experienced ECT and its negative effects. These kinds of ideas, these kinds of visions certainly should encourage us to collaboratively work with our peers and our partners across all disability lines to make the movement look larger to make sure that individuals outside of disability groups understand our potential impact.

The Café AT Center decided that it would be a good idea to start gathering the voice, listening to individuals representing all disabilities about the aspects, the positives, the negatives, concerns and challenges in cross disability collaboration. We initially introduced this as a discussion group at the Annual Family Café Conference in June of 2012. This conference, located in Florida, represents all disabilities of all ages. There were approximately 6,000 to 8,000 individuals registered for the conference and many attended the discussion group to talk about the things that needed to be done in order to realize full cross disability collaboration. In turn, we use some of that information to develop a survey and we’d like to share with you the results of these 10-question survey. Initially, these are built upon 210 responses over a period of just two weeks so you can see that that was a hot topic for individuals representing disabilities. Everyone has seemed to be thinking about it, they seemed to be considering it and they were awful anxious to share their ideas.

The first question was what your diagnosis. Of the 210 individuals that responded, a little less than 40 of them represented persons with mental illness or a mental health disorder. A little over 100 represented developmental disabilities. Chronic illness was about 35 and a little less, about 28, for injury related disorders.

When we asked them if they considered themselves an advocate, a little more than 22 said I advocate for myself. A large majority of them, and this is certainly encouraging, a large majority, a little over 140 stated that they advocate for themselves as well as others, and then there was a small group, a little over 40, that did not consider themselves an advocate. When we asked this question, we did not give a definition of advocate. We let them self-identify whether or not they felt they were an advocate.

We also asked if they were involved with an organization that worked towards systems change and you can see by this pie chart that an overwhelming majority said yes, they were. A smaller group said no, they were not.

When we asked the question do you feel there are benefits across disability collaboration? Definitely. Most of the people, as you can see by the orange yellow on this pie chart, said definitely yes. There was a very small slice that said no. Another portion, which is interesting, said that they weren’t sure which means that maybe we have a little more education to do. Again, as with the other questions, we did not define cross disability. We did not define benefit and we did not define collaboration. We let them use their own ideas to determine whether or not they felt there were benefits across disabilities.

We then asked them how they felt this could benefit systems change. You can see that the largest group said that the sharing of resources between groups would definitely benefit systems change. You can see that the largest group said that the sharing of resources between groups would definitely benefit systems change. A smaller group said that they could build upon one another’s experiences and then the next group said that there could be a show of solidarity between groups. Finally, more voters and more numbers advocating they felt would benefit systems change.

So most folks seem to think it’s a good idea so next we asked them, “Why do you think they do not work together more often?” A lack of knowledge about the needs of other disability groups surfaced as the number one reason and of course this makes sense. If you don’t know anything about another population, how can you adequately and fairly advocate for their needs? Then funding, of course funding would rise to the top. There are few funds for organizations to do the work that they need to have done. Turf guarding follows very closely to that and I think that it’s very closely tied as well. You have to protect the mission and vision as well as the population that your organization serves. Sometimes that means guarding the turf, protecting the little funding that you have. Finally, a lack of opportunity. Folks said they’d never been asked.

We asked them what might eliminate some of these barriers. One of the biggest things that rose to the top was a collaboration between leaders of the organizations, the advocacy groups or the disability groups as well as joint funding. Finally, the bottom two, which were very close together, was cross disability training, helping individuals understand the needs of their peers and other disability groups as well as joint conferences, conferences that brought people together to the table to talk about that cross intersection, those areas where they both shared the passion as well as the need and where advocacy together as a collaborative unit could make the biggest difference.

We then asked for a free flow of ideas and as you can well imagine, we had 210 respondents and about 210 ideas and it was great. A few of them include activities for individuals and organizations that could break down the barriers of collaboration, times when they could work together or setting up pilots of collaboration that could be replicated across the country. Creating a willingness to work together, what are the incentives? Why work together if we just have to scrap and fight for every little crumb that falls of the table? Developing options that would strengthen a leadership capacity of persons with disabilities so that they would be prepared to collaborate, so that they would be prepared to represent one another, certainly different types of leadership training that brought disability leaders together from across the country so they could learn together, work together and plan together.

We then asked for a free flow of ideas and as you can well imagine, we had 210 respondents and about 210 ideas and it was great. A few of them include activities for individuals and organizations that could break down the barriers of collaboration, times when they could work together or setting up pilots of collaboration that could be replicated across the country. Creating a willingness to work together, what are the incentives? Why work together if we just have to scrap and fight for every little crumb that falls of the table? Developing options that would strengthen a leadership capacity of persons with disabilities so that they would be prepared to collaborate, so that they would be prepared to represent one another, certainly different types of leadership training that brought disability leaders together from across the country so they could learn together, work together and plan together.

As you can see, the next steps would include developing some new approaches, new approaches to some of the old problems and build upon cross advocacy is a way of addressing problems to the experiences of others. This also means developing a plan. A plan of collaboration that includes local efforts, state efforts, national efforts and as an individual, how you’re going to collaborate with other disability representatives, other organizational leaders across and throughout all disabilities in order to move forward in agenda that includes everyone’s needs.

What are our next steps? We could begin reaching out to one another and creating partnerships despite competition, turfs and funding silos. Certainly, we could setup cross training to educate one another on our populations needs, our programs and our services as well as develop and share partnerships that work, creating a pool of resources for others to utilize in developing their own programs and establishing a culture of acceptance and understanding of all individuals with disabilities regardless of their diagnosis, situation or financing infrastructure. Certainly, the most important piece is we each as individuals, as organizations, as advocates and as a country have to have a commitment to progress. We have to realize that we need one another, that we can use one another to meet our goals and that within that someplace, there are certain things that we all can agree upon as necessary for the populations that we represent.

Certainly, the most important piece is we each as individuals, as organizations, as advocates and as a country have to have a commitment to progress. We have to realize that we need one another, that we can use one another to meet our goals and that within that someplace, there are certain things that we all can agree upon as necessary for the populations that we represent.

We hope that this e-discussion has triggered some ideas in your mind about ways that you as an individual or how you could help other individuals, leaders, organizations or populations to work together across disability lines, to collaborate on those things that are critical to all people in the United States, for all people to have the rights that they have to have in order to live full and productive lives. The Café Technical Assistance Center is supported by FAMSA to operate one of its five national technical assistance centers providing technical assistance, training and resources that facilitate the restructuring of the mental health system through effective consumer directed approaches for adults with serious mental illness across the country. If you would like more information about becoming more involved in cross disability collaboration or learn more about the Café Technical Assistance Center, don’t hesitate to contact us. We look forward to hearing from you in the future and thank you so much for your time today.