Advocacy and Education
Presentations at the 1st World Conference IASO - Tampere, Finland, 4-8 July, 2000
Presented by: Hal Lippman - How AS Families can help Establish School Programs best Suited to their Children's Needs.
My talk today is on advocacy and education and, specifically, how AS families can help establish school programs best suited to their children's needs. But, it is also more than that, since in using the term "advocacy" I mean: 1) achieving something important for our Angels; and, 2) empowering ourselves so that we can gain some measure of control over our children's and our own lives.
My daughter Danna is now 17 and has been educated for the last eight years under a still rather new approach for children with disabilities called inclusion. Inclusion is defined as a program under which all students attend their neighborhood schools with their same-age peers in regular education classrooms. They do so according to an Individual Education Program (IEP) designed to meet their specific needs and with supports necessary to enable them to benefit from their educational experience.
This was not the case when Danna started pre-school when she was three and for the next several years when she was educated in schools for children with severe disabilities. So, how did Danna get from a school for children only like herself to her neighborhood school? The answer is, it happened as a result of a multi-stage process started by my wife and me and parents of eight other children with disabilities.
Stage 1 - We live in Falls Church, Virginia, a small city with about 10,000 people located just outside Washington, D.C. Therefore, we already knew at least some of the other parents of children with disabilities and had talked with some of them about their child's education. As we talked we realized we had similar concerns: our children were not getting as good an education as we believed they could; and, very importantly, since they all were going to schools outside our small city, we felt that we as families and they as children were being excluded from their community.
This latter point was brought home to us when one parent went to our local community center and asked about recreation and other programs for children with disabilities. The staff person responded that there were no such programs because there were no children with disabilities in our city! His ignorance was based on official lists of children who attended the city's schools, which did not include the names of our children because they went to schools outside the city.
Stage 2 - When we realized we had similar concerns, we decided to get together with other parents we had not talked with to share experiences and see what, if anything, might be suggested once we did. The meeting took place at one of our homes in February 1990. There were parents of nine children with moderate to severe disabilities at the meeting. We discovered that we all had concerns about our children's education programs, and accordingly organized ourselves into a Contract Parents Group. The name was based on the fact that our children were being educated outside our city under contract with nearby public or private schools.
Stage 3 - We agreed that our first task would be to gather information on alternative education approaches for children like ours. We quickly found there were a lot of resources, such as universities, non-profit organizations, and local and state government agencies.
Stage 4 - After several more meetings, where we consolidated and discussed the information we had gathered, we agreed that our children would get a better education than they were getting in an inclusive setting in their neighborhood schools. Several of us agreed to represent the Contract Parents Group in a meeting to be scheduled with our local school system's Superintendent (the highest ranking local school official).
Stage 5 - When we met with him several weeks later we explained our concerns and presented our ideas for bringing our children back to their neighborhood schools. What we did not know - and, this is something that cannot be stressed enough - is that he would be receptive. He explained that in the school system from which he had just come there were children with severe disabilities already being educated with their regular-education peers. With his support we arranged follow-on meetings with his top-level administrative staff.
As a result, in May 1990 a Task Force on Integration was established to look into what "the Falls Church City Public School system needed to do to successfully integrate moderate to severely disabled students into their local schools." The Task Force consisted of 26 members: two senior administrators from the school system's central office; three principals; one assistant principal; nine special education teachers and resource staff; nine Contract Parent Group parents; and two community representatives. The inclusive nature of the Task Force was critically important to its success.
Stage 6 - Under the leadership of the two senior central office administrators, the Task Force did its work in a highly professional and collaborative manner. Everyone contributed to the work through subcommittees that were formed to correspond to the system's primary, elementary, and middle/high schools. By November, a consensus report approved by all Task Force members was developed for presentation to the local School Board. The School Board's approval was required for anything further to happen.
The report recommended that the nine students with moderate to severe disabilities be integrated into the local public schools starting with the 1992-1993 school year. The report contained a discussion of the students to be integrated, the resources needed and projected costs, conclusions, other issues/concerns, relevant national and state laws and local School Board policies, and individual reports from the three Task Force Subcommittees.
Stage 7 - At a November 1991 School Board Meeting, the Task Force report was approved unanimously. Contract Parent Group members of the Task Force appeared at this meeting to help make the presentation and answer questions from the School Board members. Prior to the meeting, Contract Parent Group members lobbied individual School Board members and had extensive contacts with other important local groups, such as the school system's Special Education Advisory Committee, whose support would be important in the School Board's deliberations.
Stage 8 - During the entire process, but especially the weeks leading up to and following the School Board's approval, Contract Parent Group members worked with local media, such as the newspaper and cable television station, to inform and educate the public on the Task Force's findings and conclusions.
Stage 9 - From January 1992 to August 1992, the arrangements each school was developing to implement the Task Force's Integration Initiative were made. Contract Parent Group members were appointed by the School Board to serve on what came to be known as Site Implementation Teams. Contract Parent Group members also appeared at subsequent School Board and City Council budget hearings to support funding for the Integration Initiative. We also continued to lobby School Board and City Council members outside formal public meetings and provided articles for official school and city publications.
In September 1992, two-and-a-half years after the establishment of the Contract Parent Group, Danna and eight other children with moderate to severe disabilities began attending their local schools! While there have been difficulties - after all, inclusive education is still a new and evolving approach - her and their lives have been changed for the better in ways that would take a whole other presentation to describe.
This result came about only because a group of parents got involved and became advocates for their children. The experience of the Contract Parents Group demonstrates that parents can make a difference in their children's education and beyond. Indeed, organizing, tapping available resources, interacting with responsible officials and professionals, and gaining support of others are skills that serve not just our children's educational needs, but are applicable to almost any matter that can affect their future well-being.
Finally, for your further information, I have put together a one-page handout that briefly outlines some of the key steps one can take to get involved and become an advocate. While it is focused on education, it is also a model for similar action in virtually any area of activity to which it might be applied.
Strategies For Bringing About An Inclusive Education
Program For Students With Moderate To Severe Disabilities
- Organize into a Group
Meet regularly with an agenda and set goals.
Seek assistance of resource persons.
Name the group and get stationery with group letterhead.
- Know what you are Talking About
Obtain articles, handbooks and other relevant materials.
Get information on legal rights of students with disabilities.
- Keep Others Informed
provide readable, accurate information to other parents, school administrators, school board members, etc.
Write/distribute brief position papers on inclusion issues.
Provide correct information in response to inaccurate or incomplete information.
- Influence Policies
Organize presentations.
State your position at relevant hearings or meetings.
Offer to serve on committees to write or rewrite policies.
- Influence School Board Members and Others in the School Community
Attend school board meetings and state your position.
Provide board members with accurate written information.
Arrange meetings with administrators, such as superintendents and principals, to discuss your goals and ways to meet them.
Schedule meetings with parent/teacher groups, relevant advisory committees, etc.
- Work with the Media
Provide information to television, radio, newspaper, magazine, and other media in person and/or through written materials.
Offer a list of resource persons to be contacted/interviewed.
Through letters and phone contacts, praise good efforts to cover inclusion issues and correct inaccurate information.
Suggest possible follow-up stories.
- Work with Other Parents and Organizations
Contact others through letters or by telephone.
Host periodic social gatherings for new/interested parents.
- Seek Legal Advice
Meet as a group with a lawyer who can explain your rights.
Have a legal advisor make presentations to other groups.
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