U.S. Senator Ted Kennedy passes

27 Aug

Senator Ted Kennedy has passed away.

The Kennedy family is well known worldwide. He was well known in his own right as a powerful senator for over 40 years (third longest tenure in the U.S. senate in history). His family has included many prominent politicians and citizens.

The Kennedy family has a history of supporting disability rights issues. Ted Kennedy is responsible for much of that.

Here is the family’s statement. They have my condolences.

“Edward M. Kennedy—the husband, father, grandfather, brother and uncle we loved so deeply—died late Tuesday night at home in Hyannis Port. We’ve lost the irreplaceable center of our family and joyous light in our lives, but the inspiration of his faith, optimism, and perseverance will live on in our hearts forever. We thank everyone who gave him care and support over this last year, and everyone who stood with him for so many years in his tireless march for progress toward justice, fairness and opportunity for all. He loved this country and devoted his life to serving it. He always believed that our best days were still ahead, but it’s hard to imagine any of them without him.”

Here is the section on disability from Senator Kennedy’s website. It is quite extensive.

Disability Rights

In 1978, Senator Kennedy cosponsored the Civil Rights Commission Act Amendments of 1978, which expanded the jurisdiction of the Civil Rights Commission to protect people from discrimination on the basis of disability. Two years later, Kennedy cosponsored the Civil Rights for Institutionalized Persons Act, which enforced the rights of people in government institutions such as the elderly, the disabled, the mental ill, and the incarcerated under the Constitution. This law grew out of increased awareness of the unhealthy and inhumane living conditions and treatment of many people within government institutions, such as the case of the Willowbrook State School for the Mentally Retarded, which came to the forefront in 1972. Beyond assuring humane living conditions and basic rights to such individuals, the law details its protection of the religious practice of the institutionalized.

Senator Kennedy cosponsored legislation in 1984 requiring polling stations to provide physical accessibility for disabled and elderly people on federal election days. If this is not possible, polling places are required to provide alternative voting methods so that individuals in such a situation are able to cast a ballot. The law also holds that polling places must make registration and voting aids available for the elderly and people with disabilities. In 1986, Kennedy was an original cosponsor of the Air Carrier Access Act. This law required that facilities and services be provided to people with disabilities traveling by air. Accessibility requirements applied not only to the aircrafts but also to airports and terminals.

In 1988, Kennedy introduced the Fair Housing Act Amendments to extend the Fair Housing Act of 1968 to include people with disabilities and families with children. By expanding the law, the FHAA prohibited discrimination towards people with disabilities in the sale or rental of housing and in the terms, facilities and services provided. It also sets certain guidelines for remodeling and necessary modifications to a residence for both the landlord and the tenant.

On July 26, 1990, the Americans with Disabilities Act was enacted into law. Introduced by Senators Kennedy and Harkin, the ADA prohibited discrimination by a covered entity (employer, employment agency, labor organization, etc) against any qualified individual with a disability in job application procedures, hiring or discharge, compensation, advancement, training, etc. The law declared that no qualified individual with a disability shall be excluded from the participation in, denied the benefits of, or subjected to discrimination by a public entity, and also required accessible rail transportation and telephone services for persons with speech or hearing impairments.

In response the alarming level and increase in the victimization and violence against people with disabilities, Congress passed the Crime Victims and Disabilities Awareness Act of 1998. Kennedy cosponsored the bill, which directed the Attorney General to conduct a study on the issue and to include specific details regarding the crimes against people with disabilities and to include them in the National Crime Victimization Survey, an annual publication. In 2004, Kennedy was an original cosponsor of the Assistive Technology Act, which supported states in an effort to sustain and strengthen the capacity to meet the assistive technology needs of individuals. In addition, it would focus funding on investments in technology that could benefit those living with disabilities. Millions of Americans experience severe disabilities that affect their ability to see, hear, communicate, walk, or perform other basic life functions. This should not preclude any individual from enjoying full integration in the economic, political, social, and educational activities embedded in American life.

Vocational Rehabilitation and Employment

Senator Kennedy was a strong supporter of the Rehabilitation, Comprehensive Services and Developmental Disabilities Amendments of 1978. These amendments included a number of very important steps in disabilities legislation. It established a functional definition of developmental disability, created the National Council on the Handicapped and the National Institute of Handicapped Research, set a funding minimum for protection and advocacy services and authorized a grant for independent living services and opportunities for people with disabilities.

In 1982, Kennedy was one of the main cosponsors of the Job Training Partnership Act, which was designed to break down some of the barriers facing “economically disadvantaged” individuals and among them people with disabilities. Kennedy made sure to include provisions stating that people could not be excluded from the training program and the advantages it provides based on a disability or other classification. Four years later, Kennedy and Senator Quayle introduced amendments to the Act that afforded people with disabilities special consideration in the awarding of discretionary grants within this training program through the provisions of these amendments.

In 1986, Kennedy cosponsored the Employment Opportunities for Disabled Americans Act, which made work incentives for disabled individuals a permanent fixture of the Social Security Act. People working despite severe disabilities became eligible for special status to receive SSI benefits and Medicaid coverage. This special status was valid unless the impairment went away or their earnings exceeded an amount that zeroed out their cash benefits.

In 1999, Kennedy was the primary sponsor with Senator Jeffords of the Ticket to Work and Work Incentives Improvement Act. The law and its “ticket to work and self-sufficiency” program expanded employment opportunities for people with disabilities through providing disabled Social Security beneficiaries greater support and more options. It also allowed for working people with disabilities to receive benefits from Medicaid and/or Medicare.

Assistive Technology

Senator Kennedy was an original cosponsor of legislation that provided funding to all 50 states in order to raise awareness about the potential of assistive technology to significantly improve the lives of people of all ages with disabilities. It also aimed to facilitate a coordinated effort amongst state agencies to provide and encourage the use of assistive technology for individuals with disabilities. Senator Kennedy cosponsored reauthorizations of the Act in 1994, 1998, and 2004.

Education

Senator Kennedy was an original cosponsor of the Education for All Handicapped Children Act of 1975, which later became the Individuals with Disabilities Education Act (IDEA). The law served to amend the Education of the Handicapped Act and to guarantee a free and appropriate public education to children with disabilities, regardless of their severity, in all states.

Kennedy was an original cosponsor of the Handicapped Children’s Protection Act of 1986, which overturned a Supreme Court decision and allowed courts to award sensible attorneys fees to parents of children with disabilities winning in due process proceedings and other court actions under part B of the Education Act. That same year, Kennedy cosponsored amendments to the Education of the Handicapped Act, establishing a new grant program aimed at developing an early intervention system benefiting infants and toddlers with disabilities and their families. It also sought to provide and promote preschool programs for children ages 3 to 5 with disabilities.

In 1990, Kennedy was an original cosponsor of a bill that changed the name of the Education of the Handicapped Act to IDEA, changed the term from handicapped to disability, and added two categories to the amendment: autism and traumatic brain injury. It also reauthorized the programs under the previous act to provide improved support to students with disabilities particularly in the terms of computer access and assistive technology. In 1997, Kennedy was an original cosponsor of amendments that consolidated the original 9 subchapters of IDEA into 4 subchapters. Among the other changes were the inclusion of special education in state and district-wide assessments, the promotion of mediation as an option to disputes between teachers and parents of children with disabilities, a provision that special education students be disciplined in the same way as other students, the continuation of services to adult inmates with disabilities who were eligible for IDEA prior to their incarceration, and the requirement of charter schools to meet the needs of children with disabilities and to receive IDEA funds from district schools.

In 2004, Kennedy was the sponsor and lead negotiator of the reauthorization of the IDEA, with a new focus on promoting better alignment of special education with general education and having school districts be accountable for the educational outcome of all students, including students with all ranges of disabilities.

Health Care

In 1982, Kennedy was an original cosponsor of legislation that allowed for states to cover home health care services for particular children with disabilities under their Medicaid plans. This was intended to allow parents “respite” or rest periods with a trained professional helping to care for their child’s needs.

In 1990, Kennedy, along with Senator Hatch, introduced the groundbreaking Ryan White CARE Act, which provided emergency relief to thirteen cities hardest hit by the AIDS epidemic, and also provided substantial assistance to all states to develop effective and cost-efficient AIDS care programs, aimed particularly at early diagnosis and home care. Other services included in the bill were drug treatment, dental care, substance abuse treatment, and outpatient mental health care.

In 1991, Kennedy sponsored legislation to reorganize the Alcohol, Drug Abuse, and Mental Health Administration. Specifically, it separated the previously combined treatment and research branches of the department, which improved the capacity to effectively address both the prevention and treatment of substance abuse and mental health.

The Ryan White CARE Act reauthorization of 2000 reaffirmed Senator Kennedy’s commitment to providing access for persons with HIV disease to life-sustaining medications, medical care and other essential services. The Act authorized nearly $9 billion in HIV/AIDS services over the next five years.

In 2006, Kennedy won a 5-year-long battle to pass the bipartisan Family Opportunity Act. The law provides states the option of allowing families of disabled children to purchase health coverage through Medicaid. The bill passed as an amendment to the budget reconciliation bill.

In 2007, Senator Kennedy reauthorized the Ryan White Care Act of 1990. The reauthorization focused on quality of life issues, new and emerging therapies, and ensuring that funding for programs followed the people affected by the disease. Having over 15 years worth of information and recognizing that the disease had changed significantly, the focus was placed on prevention and issues of chronic care. It also acknowledged that the demographics had changed and the disease was now evident beyond the cities and in rural areas as well. Drug treatments had also advanced and people living with HIV were staying alive 20 to 30 years beyond their day of diagnosis.

In 2008, after more than 10 years of effort, Senator Kennedy championed historic legislation to reform the inequities in the way mental health and substance use disorders are treated by the insurance industry. This legislation, co-sponsored by Senator Domenici, assured individuals living with mental health and substance abuse issues that there mental health benefit would be treated equally with the medical-surgical benefit regarding treatment limitations and financial requirements. This means that co-pays, out of pocket expenses, and deductibles cannot be treated differently than they way medical-surgical is treated. This legislation assured equity for 113 million Americans.

In July of 2009, Senator Kennedy succeeded in having the CLASS Act be included in the text of the Affordable Health Choices Act that was passed out of the HELP Committee. This bill aims to provide the elderly and disabled with a daily cash benefit that allows them to purchase the services and supports they need to remain in and be productive member of one’s community.

Developmental Disabilities

In 1975, Senator Kennedy cosponsored legislation to create a “bill of rights” for people with developmental disabilities. The bill also provided funding for services for people with this type of disability, supplemented funding for affiliated university facilities and created state-based systems of protection and advocacy groups in all 50 states. Kennedy was an original cosponsor of the reauthorization in 1987, which updated the language of the 1975 law. It also gave greater independence to the State Planning Councils, fortified the authority of the state-based protection and advocacy systems in investigations into abuse and neglect, and established separate line items for funding and training in university affiliated programs.

8 Responses to “U.S. Senator Ted Kennedy passes”

  1. Dan Hollenbeck August 27, 2009 at 03:36 #

    In 1990, Kennedy was an original cosponsor of a bill that changed the name of the Education of the Handicapped Act to IDEA, changed the term from handicapped to disability, and added two categories to the amendment: autism and traumatic brain injury.

    Why do you think Senator Kennedy felt the need to add autism as a IDEA category in 1990?

    Knowing the circumstances and details around this decision might be very interesting. Obviously, there was a reason to add the autism category.

    Can we assume that children with autism where being served under Education of the Handicapped Act pre 1990? In yes, in what category?

    • Sullivan August 27, 2009 at 18:05 #

      Dan Hollenbeck,

      I won’t speculate as to Mr. Kennedy’s intentions. My guess is that you want to imply that an increase in autism rates (as opposed to autism awareness alone) was at play.

      A third option (in addition to awareness alone, increased awareness due to an increased rate) is that it was becoming clear that autistics needed a different approach to education than existing categories.

      The idea that increased rates drove the change in the law would be a tough argument here–by analogy one would assume that there was an increase in traumatic brain injury rates as well.

      As to what category autistics may have been served pre 1990–why assume only one category?

      A common theme in David Kirby’s posts is if autistic children were mislabeled, they received no services until they were given accurate diagnoses. It makes zero sense.

  2. ebohlman August 27, 2009 at 10:26 #

    My understanding is that pre-1990, autistic kids (and this would be kids with Autistic Disorder or severe PDD-NOS; kids with Asperger’s or mild PDD-NOS were unlikely to be eligible) would be shoehorned into either Mental Retardation, Specific Learning Disabilities, or Serious Emotional Disturbance. The problem is that a lot of autistic kids wouldn’t fit those categories well (consider a kid with an IQ over 70, good reading skills, and no destructive behavior, but still having serious difficulty with the school environment) and so either they wouldn’t receive services or they’d receive inappropriate services (there was, and still is, the catchall category of Other Health Impairment, but that’s difficult to qualify for and isn’t associated with specific services).

  3. Dan Hollenbeck August 27, 2009 at 19:28 #

    Hi Sullivan,

    My guess is that you want to imply that an increase in autism rates was at play

    That was not my intention. I have been interested in why the autism category was added to IDEA in 1990 for some time. Your blog was the first time I read of the Kennedy connection which I found interesting. I have been interested in finding any background documentation from 1990 on this topic.

    The only info I have found on this topic is a Congressional report from the Library of Congress:

    http://tinyurl.com/mp6ylw

    “(page 8) The amendments expand the definition of “”children with disabilities” in section 602(a) of IDEA to include specifically children with autism and traumatic brain injury (TBI). Formerly, autism was included by regulations as a type of condition covered by the more general category of “other health impaired.”

    I am not making an argument here, but one can see what happened to the OHI category post 1990 after the introduction of the autism category here:

    http://tinyurl.com/l7oouy

    Also, please notice the graphs title says “administrative” prevalence per your previous suggestion. I have also replaced the “crude incidence” graphs with “change in administrative prevalence” graphs per your previous criticism.

    Thanks, Dan
    Dan Hollenbeck

    • Sullivan August 27, 2009 at 22:08 #

      Dan,

      sorry to read the wrong thing into what you wrote.

      I enjoy your comments, I hope you stick around.

  4. moonlite August 29, 2009 at 05:01 #

    Dan,

    Yes, autism was being served pre-1990.

    During the ’70’s, there was the Handicap Act in use and the 504 Plan.

    I’m trying to recall my studies in early ed and don’t have my materials with me. However, the psychiatric community was very interested, then, in proper, diliberate diagnosis of autism. It was felt, that kids were being thrown into the autism pool, as it were, just to have a diagnosis.

    This is one reason why autism appears now to have been, in the past, seemingly underrepresented. One of my instructors had a special interest in autism, and did a lot of work in that area of disability. So dramatic were the feelings of proper diagnosis and accomodation at the time. Even how to categorize autism was being critically reviewed.

    We are fortunate, in that autism can be and is being diagnosed at a young age today. It is because of the caution and consideration used during the writing of legislation pertaining to the child having a disability. Having left autism out as a category then, has helped the category become what it is today. It is much better defined, appreciated and accepted, morally and institutionally.

  5. De Small August 31, 2009 at 09:06 #

    (I apologize if this has been posted twice, my laptop froze right in the middle of pressing send.)

    I am a mother that deals with autism everyday. Our daughter is 4 years old and was diagnosed at the age of 2 and started receiving special education preschool services at the age of 3. We also have another daughter whom is 3 and so far seems “typical”.

    “Kennedy cosponsored amendments to the Education of the Handicapped Act, establishing a new grant program aimed at developing an early intervention system benefiting infants and toddlers with disabilities and their families. It also sought to provide and promote preschool programs for children ages 3 to 5 with disabilities.”

    With our insurance company (my husband is employed as a teacher and we have excellent insurance but they are not willing to cover the autism therapies such as occupational, speech, etc. They say it is the school districts responsibility to provide these, but no matter how much is ear marked, here in CA there is not enough money. This is what needs to change) not willing to cover the cost of the therapies that she needs, thanks to her receiving some therapy sessions via the special education program and me learning how to perform certain therapies (I have my Master’s degree in Forensic Sciences so I can no longer work to help our child) we have seen much improvement in her development. With that being said, as she grows special education services will not be needed due to her IQ being “borderline brilliant” as the specialists call her. There really is no place for her since her IQ is high and some developmental areas are slow, basically she is too smart for special education but since she is not able to transition well mainstream classes may not suite her either.

    This is where the IDEA and FAPE act is great, she will get the help she needs until it is determined where she will fit in for Kindergarten. If Autism was not included she would not be able to get any help and her behavior may not disrupt others etc, so she would just get pushed to the side as a problem that they just “push” along.

    There really was not a lot of research done about autism, it seems that the more public, famous faces that come out saying “my child has autism” then more attention is on it. While these people spend up to 4000 a week, a month regular families that mine cannot go all out for every experimental treatment there is so we rely on our school and public officials to help. Yes we own our home, provide the special diets, toys etc, but more needs to be done. It is one thing to have something written down but if you look in on an IEP meeting, you will find that the school districts are misguiding parents to do the wrong things. Something needs to be done to ensure children with autism and other developmental delays and disorders are given the proper care.

    It is sad when my husband and I have our education, own our home, have zero debt but there is nothing for our child, yet if I had my child with no home, income or education her services would be “taken” care of. I really hope and pray that the IDEA act is a little more revised and that insurance companies are held more accountable.

    I apologize for the ramble, I just wanted to add more information about why Autism may have been added post 1990. Plus it is 1:00 am pacific time and sometimes the “stimmy” nights leave no time for the brain to properly type let alone type. I ran across this blog which I have enjoyed reading and I am very happy that the topic of autism is being talked about.

    Thanks for your time.

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