Designing a Community

I was so glad to read the most recent posting in The Autism Blog entitled “Designing a Community for Families Living with Autism.”  This article which describes a community which families would like for their children describes inclusive, supported communities.  Many of the so-called “institutions” are actually on campus communities which are set up very similarly to the designed community in these parents dreams.

This is a major problem since our vocal Developmental Disability Advocates who steer policy making and laws (Developmental Disabilities Council, The Arc Chapters, National Council on Disabilities, Administration on Intellectual and Developmental Disabilities) do not support these parents dream for their children.  We hear form the above mentioned organizations that people should not live in campus type settings, they need to be dispersed so that they are “included” in community.

 

In reality, when people with intense support needs are dispersed into free-standing houses far from their friends and supports, they are not included at all – they are more likely imprisoned in that home.  There is no freedom to walk outside safely, there are restrictions and locks which prevent freedom and choice.  This is not person centered at all but policy driven without input from families – the real experts in what makes community for them.

The so-called DD Advocates will say that families do not want campus communities but have they asked and listened to what families have said.  I know they haven’t but we need to get them to listen to our expertise in what is best for our children.

 We are the experts and they need to listen to us too!

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