The following are my comments to the U.S. Department of Education request for comments on "Enforcing the Regulatory Reform Agenda E.O. 13777"
by Jill Barker, Ann Arbor, Michigan
With all the emphasis on children with disabilities being served in regular classrooms, usually referred to as “Inclusion”, there needs to be clarification that IDEA and its regulations assure all children with disabilities appropriate educational services and placements.
I have two adult sons, 32 and 41 years old, who have profound intellectual and developmental disabilities. They both attended High Point School in Ann Arbor, a school that specialized in students with the most severe and complex disabilities in Washtenaw County, Michigan. Regular classrooms were in no way appropriate for them, even with special supports and accommodations. At High Point, they experienced the best care and educational opportunities available in a loving and supportive community.
I have no regrets, but I know the pressure has been on school systems for many years to eliminate schools like High Point in the name of an erroneous and misplaced desire for all students to be “included”.
The following is an article I wrote for The DD News Blog in celebration of my son Danny’s 40th birthday. It is just as relevant today as it was a year ago.
The following is an article I wrote for The DD News Blog in celebration of my son Danny’s 40th birthday. It is just as relevant today as it was a year ago.
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Excerpts from...
Surviving the Inclusion Delusion: Danny at 40
By Jill Barker
By Jill Barker
The DD News Blog
Monday, October 3, 2016
My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant. We do not love him less because he lives and survives with profound developmental disabilities.
I’ll spare you the details of his birth and the aftermath. It’s enough to say that while the other mothers whose babies were being discharged from the hospital were learning how to give their babies a bath, I was receiving instructions on how to administer Cardiopulmonary Resuscitation to an infant.
I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, anda supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.
Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers. Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day. See "Choosing Sides On School Inclusion" from the Huffington Post, 8/22/16.
My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant. We do not love him less because he lives and survives with profound developmental disabilities.
I’ll spare you the details of his birth and the aftermath. It’s enough to say that while the other mothers whose babies were being discharged from the hospital were learning how to give their babies a bath, I was receiving instructions on how to administer Cardiopulmonary Resuscitation to an infant.
I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, anda supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.
Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers. Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day. See "Choosing Sides On School Inclusion" from the Huffington Post, 8/22/16.
... the uncritical acceptance of the Inclusion Delusion disregarded a number of moral and ethical questions: Is it right to make judgments about “ all children with disabilities” without considering their individuality and acknowledging the full range of their diverse needs? Do advocacy organizations or government agencies have a right to impose on children and their parents an all-encompassing doctrine when the parents and others who know the child best have good reason to disagree? Is Inclusion the ultimate goal of educating children with disabilities or are the needs of the individual child paramount in determining educational services and placement? Is Inclusion a cause that must be served, whether or not it is appropriate for a specific child?
… In the mad dash to close institutions and many other specialized programs for people with disabilities, the people directly affected by these closures were rarely asked their opinion early enough in the process to make a difference. Instead, advocacy groups, especially those that receive federal funding to promote their causes, claimed to represent people with disabilities and swooped in with all the answers: No one would choose to live in an institution or group home, work at a sheltered workshop, attend a day program with other people with disabilities, or live anywhere but in their own home or at home with their family. All people with disabilities can and should live independently, make all their own decisions, and work in integrated, competitive work settings.
The truth is that there are people with disabilities who can do only some of these things, some who can do none of them, and some who choose to do things differently than other people with similar disabilities. They have been marginalized. The closure of programs and services that meet their needs has been justified with the promise that closing programs that no one wants, according to the advocates, will pay for more services to more people, “in the community”. This is unlikely to ever be realized as states see “savings” as opportunities to fund more popular government- supported programs (such as fixing potholes), to reduce taxes, and to continue to ignore many of the needs of people with disabilities. Attempts to develop innovative family-initiated projects to serve and house people with disabilities that may actually save money in the long run are also being thwarted by advocates who fear any incursions into the territory they have claimed for themselves as the representatives of all people with disabilities....
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