23. Information To Parents – Given By Parents

I have had many opportunities to meet with others and participate on state and national levels as an advocate, but there are two opportunities that I hold as real honors. Two of those were invitations to participate in summits held by the National Council on Disabilities. My first was Achieving Independence in the 21st Century.  Achieving Independence: The Challenge for the 21st Century


I participated on the education committee.  We were charged to address ways to increase student participation in regular education classes prior to the passage of the ‘97 amendments to IDEA.  The two recommendations that came from our work were neutral funding and adding the word informed to consent.

Prior to this change the more restrictive of a class setting a child was placed into, the greater the amount of funding the district received.  If the student was placed in a regular education classroom the funding was reduced. This type of funding formula encouraged districts to place children in segregated classes, and leave them there where they received the greatest amount of funding.  We suggested instead that the funding be determined at the initial IEP based on the child’s needs and after that the funding would follow the child.  It became part of the ‘97 amendments and now all states have a neutral funding formula.

The second recommendation our committee made was to insert the word informed in front of consent. The reasoning here was that before parents gave consent to anything they would be informed as to what they were giving consent to. We hoped this would make parents aware of their rights and lead to more children being placed in the least restrictive environment.

My second opportunity was another summit – Back to School on Civil Rights.  (Back to School on Civil Rights)  This time we were charged with thinking outside of the box as to how we could better see education laws followed in school settings. Recommendations were submitted for consideration by each individual participant.

I believed then, and still do today, that only parents of children with disabilities possess the empathy, and have the vested interest, to provide the level of involvement it requires to reach other parents.  My reasoning was that parents would only receive partial information if that information were provided by parent liaisons who were school system employees.  My recommendation was that all parent services be provided to parents by parents and through a neutral parent organization such as a Parent Training and Information Center (PTI).  To ensure compliance with IDEA in school settings would require that parents receive all the information they would need to make informed decisions and to become equal partners in the special education planning process.   The materials provided to parents would be written by parents for parents, and therefore would be supportive and easier to understand.

It wasn’t long after the second summit and this proposal that I was again approached by the school system and given the opportunity to put this idea into practice.  For the second time, I was approached and offered the position of parent liaison.  There had been a major turnover in administration and the new administration was thinking there had to be a better way to work with parents. I had spent a really long time mired in conflict trying to get them to work with parents.  The previous offers of collaboration had proved to be short lived and meaningless but now things appeared to be different.

It was explained to me that our District had written for and obtained a grant that used IDEA discretionary dollars for parent services on a district level.  I expressed a willingness to accept the position if it was a contracted position with a parent center. (Parent Technical Assistance Center)   This would allow me to remain a neutral party and still serve parents.  The district agreed, and a contract was drawn up between the Parent Center and the District through which my services were to be provided.  It was now official I was responsible for the provision of all parent services to parents of children with disabilities, the parent liaison and co-chair of the Advisory Committee.

ESE-Logo-pngI now had an opportunity to implement the parent model I had submitted to the National Council on Disability in my own community.  A model that promoted being collaborative and proactive rather than adversarial and reactive.  This atmosphere of hostile negativity and adversarial climate must change.  Both sides seemed so willing to perpetuate this toxic harmful relationship with children in the middle.  We wanted change and were willing to build a model of collaboration to get there.  We called this collaborative model “Sharing the Commitment“.   It combined the provisions of an advisory council, a neutral parent liaison and site based parent resources, with a budget that supported my services and three additional part time parent services positions. Contract, budget, and staff in place – it was time to start implementing a model for parents – Sharing the Commitment to Excellence

I inherited the previous efforts to initially implement the model that began by training parent teacher teams nominated by building principals.  This group of parent teacher teams became the core from which our advisory was birthed.  The provision of all parent services for parents of children with disabilities had become my sole responsibility and now I had to make it work.

We collaboratively drafted the advisory by-laws An Advisory Committee to the Exceptional Student Education Department.   Based on those bylaws we filled the advisory seats (Sharing the Commitment Membership) and began to do business.  After all those years of conflict I now had an opportunity to create an advisory committee from which all could benefit.  I knew what it was I wanted to see in place. The goal had been the same from the beginning, site based, sustainable, parent information, resource, training and support.  Although I knew exactly what I wanted to see happen the process required group consensus to move forward. I did have the history of my predecessor’s attempts to implement an advisory to learn from.

Fourteen years later I am finally seeing the plan come to fruition and will be sharing with you the path we took to get there.

This entry was posted in Disability, Emotion, IEPs, Least Restrictive Environment, Parent Involvement, Procedural Safeguards, Special Education and tagged , , , , , , . Bookmark the permalink.

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