Allanbergman2

Allan Bergman The citizenship role in the United States of America is a very important role and responsibility that, unfortunately, we take too often for granted and we get cynical about in terms of how we respond and how we communicate to our elected officials at the local level, state level and federal level. So it is very important not only to talk about our right to vote, but our responsibility to communicate to our elected officials what are our views, what are our feelings. They can’t read our mind. They don’t know what the issues are for us and they get deluged with issues every day of the week, from disability to insurance, to water regulation, to natural environment stuff, to printing, to banking, like, highways, whatever it is, and even if any of us got elected, we can’t be an expert on everything. So we have power. We have unbelievable personal power if we choose to use it in communicating to elected officials. And we have to do that and I’d like to spend a few minutes talking particularly about the federal government and how the federal government has responded to and occasionally gotten a little ahead of the field or at least played catch-up across the states because when a federal law is passed, it applies to all 50 states. A lot of the things that we call best practice today in the field of services and supports for people with disabilities were incubated in states and local communities, in universities, in model programs. But then we have to bring them to scale and bringing it to scale usually requires some piece of legislation, either at the state level or the federal. But let’s talk about the federal government because I believe its role has been unbelievably important to the advances we have made in our society for children and adults living with disabilities of all types. The federal government didn’t become a player until the early 1920’s. Prior to that it was all done by states and the primary delivery system was an institution. If you read state law you will see terms that you will not like about institutions for the feeble-minded, the insane on the mental health side and it’s pretty nasty and it’s pretty paternalistic and it’s pretty protective of society. That was the value of the time. My personal belief is that legislation reflects the shifting cultural values in our society and part of that has been because we’ve educated and we’ve demonstrated that people with all types of disabilities have a right to be members of and participating in their local community, in their home life, in the schools and in adult life—just like all the rest of us. But that didn’t just happen because it was a good idea. We slowly moved and we began with vocational rehabilitation for World War I victims and that was only in 1928. That’s not a long time ago historically. And then there wasn’t a lot of big stuff. There was cripple children services. In 1935, that was PT/OT speech language for children who were crippled. That’s a word we don’t use today. We would say children with physical disabilities. That was the term of art except it was discriminatory because the law said it was only for children who could benefit and if a child was seen as not being intellectually capable, and that would also include a lot of people with significant language or speech impairment say from cerebral palsy, which had nothing to do with their cognitive ability, they were excluded. We didn’t get that fixed until the late 1970’s when California got sued by some advocates to change that statute. You now know it as Children With Special Healthcare Needs. But it was discriminatory; did some good things PT/OT speech but only for kids who could benefit. Then we moved along and the next real breakthrough didn’t come until the 60’s and a fella named Kennedy got elected President. He had a sister, Eunice Shiver-Kennedy or Eunice Kennedy-Shriver, who most of you probably know for her work with Special Olympics or the Kennedy Foundation. She was the power behind the throne in terms of the Kennedy administration because of having a family member, a sister, Rosemary, who had, we believe, an intellectual disability. Eunice said to her brother, Jack, the President, you’ve got to do something for the retarded as President of the United States. We forgive her. She never bought people first language. It was always the retarded and she did so much that it’s okay. It was her push that got her brother, as soon as he was elected, to create a President’s Panel on mental retardation, the first ever. In the 1960’s he created the National Institute for Child Health and Human Development to deal with prevention and amelioration. Those are four front decisions that were done by the federal government because of the right person being in the right place at the right time and having a sister who was pretty pushy saying you can do something, you’re the President of the United States. From that, we got the beginning of a system that is now the Developmental Disabilities System, university-affiliated facilities which were to be research centers, assessment centers. The President’s Panel report was all about the future, all about community, nothing about institutions, but they’re still with us—that was 1962-63. We got landmark legislation and we have moved, in the last 49-48 years, light years ahead. Practice, piloting, legislation, legislation, driving practice, back and forth, creative tension and with some use of the courts when we needed to get into civil rights issues. So shortly after the Kennedy legislation, a group of parents in Pennsylvania, who were tired to begging, and the parents got started in 1948, the ARC as we know it today and United Cerebral Palsy were parent organizations and they said we’re not sending our kids to the institution. We’re keeping ‘em at home. They started the first preschools. They started the first kindergartens, literally in church basement on a borrowed nickel or a borrowed dime. They weren’t very sophisticated by today’s standards. Bottom line is we went to court in Pennsylvania and in federal court, sued for the right to education and we won. Twenty-six more cases, we got to the Right to Education; 94-142 in 1975, now known as the Individuals with Disabilities Education Act. After the special education mandate, which is a civil rights law—it’s not a program law or funding law. It was won in 26 court cases in the federal system on the constitution. Then we moved ahead in the 80’s and we added early intervention and we added supported employment and then we changed voc rehab in 1992 and we added presumptive eligibility and integrated employment and that came on the heels of the Americans With Disabilities Act; landmark civil rights legislation in 1990 saying that we will not have discrimination against people with disabilities in employment, in state and local government services, which must be in the most integrated setting, not the least restrictive environment—most integrated setting that starts with a presumption of community and support and as we move into the 21st Century, we are continuing to refine that message. That as we look at the changes in special education, we have transition amendments to IDEA in 2004 that talk about careers, that talk about employment, talk about post-secondary education. They talk about functionality and community living, not watered-down reading, writing and rithmetic. Talk about outcomes, that’s gonna come round, I think, this year in 2011 with the reauthorization of No Child Left Behind and raising the bar, saying all kids get to go to school to learn; to be contributing, productive members of adult society. And people can work and we have the techniques and the technology through supported and customized employment, the role of assistive technology, non-aversive behavioral interventions—everybody is valued and make a contribution and the Supreme Court affirmed that in 1999 in a case called Olmstead, L.C. and E.W. Lois and Elaine, two women who were residing in an institution with a dual diagnosis of a psychiatric disability and an intellectual disability and they wanted out. Everybody said they ought to be out and Georgia said we have no money. They sued in federal court, district appellate court and the U.S. Supreme Court and in 1999, on a 6 to 3 decision by Justice Ginsburg, the Court affirmed that institutions are places of confinement. That’s deprivation of liberty. It goes back to the original right to education case in ’69, 30 years later and that people have a right to be free with appropriate supports and that has been affirmed in a number of lower court decisions that we now have a right to services in the most integrated setting appropriate to the needs of the individual. And we know how to do that. We have 12 states that have nobody living in institutions; more on the horizon. Inclusion is becoming an increasing mandate in school and outcomes from the accountability of public schools that kids have a life by the time they graduate and they just need support as opposed to needing day program and group home. Twenty-first century is an exciting time but we have to know our past or it could recycle and come back because of tight budgets.