Friday, July 27, 2007


Systems change – a term that is being tossed around by a great many government agencies and organizations that support people with disabilities. The term seemed to rise in popularity about 6-8 years ago. The first thing I noticed was that organizations which once provided a great deal of hands-on, individual support backed away from that support. They began talking the language of strategic planning, technical assistance, and outcomes. Families and people with disabilities were taken by surprise by this shift, primarily because they were given little or no explanations. An even more disappointing aspect of the shift is that in the 6-8 years it has been in vogue, I have seen no systems change.

In concept, the idea of systems change starting at the top of the service paradigm sounds good. In practice, it hasn’t been so good. However, trying to effect systems change from the bottom – a grass roots effort – is too slow and too draining for families and people with disabilities to sustain the effort for the length of time needed. I’ve found through my own efforts that sometimes litigation can effect systems change, but usually not on the scale that is needed. So what’s the answer?

I believe the answer is the development of an innovative, completely different model. I don’t know what that model is yet, but I had lunch today with someone who does. The ideas presented were intriguing. And even though these ideas will take some time and refinement, the difference to me is that they offer hope – hope for a meaningful life for my child, and many other children, with dual sensory impairments.

Until today, my week had been depressing and disappointing. I am facing the ever-present school and insurance battles. I am still struggling to raise my children well, and ensure that their needs are met. I am still worrying what the future holds for them and for other children with disabilities. But now, mixed in with the worry, the struggles and the battles is hope.

I will share more about this new model when the time is right. But that time is not now. Until then, I will be recruiting families who I believe are ready for a change, and ready to commit their time and energy to that change. If you are one of those families, and you have a child of any age with dual sensory impairments, please contact me. If your family is in need of hope for the future, and you want to work towards making that hope a reality, I need your help and am anxious to hear from you.

Thank you, Tim. I am excited about the future of the plans we discussed today, and I am ready to assist in any way I can.

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