Dr. Michael Ward played a key leadership role in promoting self-determination for persons with disabilities as a federal policy initiative of the U. S. Department of Education, Office of Special Education and Rehabilitative Services beginning in the late 1980’s and early 90’s. Many of us think of Mike as the guy who started it all when we think about self-determination for students with disabilities. We interviewed Mike to find out what he thinks about where we have been, where we are and where we need to go to foster self-determination.
2BSD: What do you think are the biggest gains we made in Special Education as a result of the federal emphasis on encouraging self-determination for students as they transition from school to work and community?
MW: The concept of self-determination has certainly taken many twists and turns, most of which have made positive contributions.
2BSD: What are some of those twists and turns? What are the most significant accomplishments? Are there any roads we went down that shouldn’t be repeated?
MW: I had no idea that supporting a change in the Part B regulations to require that students be invited to the IEP meeting would lead to student-led IEPs. Many states support youth leadership initiatives. Self-determination resources such as this website (2BSD) and I’m Determined, are still being developed. Twenty-five years after the initial model projects were funded, self-determination is a very integral part of the transition process.
I still have difficulty with the ‘Self-Determination’ projects funded by the Robert Woods Johnson Foundation to develop systems that allow families of persons with developmental disabilities more control of their service dollars. While I strongly support this initiative, there is an inconsistency in using the term ‘self’ where decisions are made by persons other than the person with the disability. To reflect the true purpose of these systems, they should be called ‘Family-Directed Support’ programs.
2BSD: Can you identify some of the areas where we haven’t made as much progress as we had hoped for, where we still have significant work to do?
MW: I continue to feel something is missing, maybe in terms of leadership. I know many states support youth leadership initiatives and perhaps more young people can advocate for themselves, but I don’t see much collective leadership in terms of changing public policy. For example, July marked the 25th anniversary of ADA and I don’t think it fulfilled its promise given that the employment rate among people with disabilities is about 20% as compared to 69% for the general population. A dream I have is that during the next 25 years all the people who run disability programs will train and mentor people with disabilities to take them over. This is the only way we will get real change and increase these programs’ responsiveness.
2BSD: It’s interesting that you’re talking about the importance of self-determination as a vehicle to change policy through collective leadership rather than talking about it as a vehicle individuals use to improve the quality of their own lives through their individual actions. I think you’re saying that when individuals advocate for themselves collaboratively with others, they have the potential to increase their self-determination by affecting public policy and creating more opportunities for themselves. Is that right?
MW: Maybe. There are certainly people who have more self-determination skills than others and are able to navigate the system and get what they need. However, they need to realize that many of these systems are so broken that many of their peers don’t get what they need and we all need to collectively fix them.
Recently, I’ve been made aware that a good friend of mine is about to be placed in a nursing home and although a group of us who have been involved in the disability rights and independent living movements have worked with the family to find other options, we can’t! We are being told that perhaps he needs to go into the nursing home for a period of time before he is eligible for the services he needs to move back into the community. (In my mind, this ain’t gonna happen.) The system is definitely broken.
For years the advocacy organization ADAPT has attempted to pass a law requiring states to support community-based residential placements over more restrictive settings such as nursing homes. There just hasn’t been enough collective advocacy to support this effort.
2BSD: Do you see self-determination as a movement primarily targeted toward persons with disabilities or do you think it has broader implications?
MW: Everyone needs opportunities and practice to be more self-determined. When you did your model project, you offered the curriculum to students with and without disabilities. I recently read about a school that gave students a choice on how they learned and were assessed on different subjects.
2BSD: Where do you think the greatest opportunities are to help us move forward in supporting self-determination?
MW: This is a somewhat difficult question because although self-determination is supported by some policy, programs, and procedures, there are other factors that are acting as barriers. For example, whereas self-determination is a key element of transition and is evident in those school districts where transition best practices are in place, I’m aware that the emphasis on transition is beginning to wane. Universities and states are reducing resources targeted for transition programs and personnel. Hopefully, self-determination will continue to be part of the ‘next best thing’ but with the focus on everyone meeting the same set of standards, there is little room for individuality, which is so critical for self-determination.