In the 18 years since passage of the ADA (Americans with Disabilities Act), a succession of Supreme Court decisions has so narrowed the definition of disability that only a small percentage of employment discrimination cases ever go to trial, and of those 97 percent are decided against the plaintiff. People with conditions such as epilepsy, HIV and hearing loss who manage their conditions with medication or hearing aids, are defined as “too functional” to have a disability and not qualified for protection from employment discrimination under the ADA.
The ADA Amendments Act of 2008, redefines disability in such a way as to restore Congress’s original intent, to extend civil rights protections to all Americans with disabilities. The Act passed the House this spring and the Senate is expected to take it up in September 2008.
The 21st Century Communications and Video Accessibility Act of 2008, introduced in the House in June, would ensure that new Internet-based television and telephone products and services are accessible to people with disabilities.
Passage of the Mental Health Parity bill in both houses of Congress this spring requires most group health plans to provide coverage for treatment of mental illnesses comparable to their coverage for the treatment of physical illnesses.
The Money Follows Person Act died in committee in the fall of 2007. However, individual states are being encouraged to join those that have already implemented provisions of the Act, including critical support for individuals who want to move from institutions into the community.
September 4, 2004: In April, the Senate finance committee held a hearing at which the bill was discussed at length. In mid-June, the act was attached to another piece of legislation called the Family Opportunity Act, in the House of Representatives. It started to seem as if the bill might go through Congress. But the House decided they needed a monetary offset for the amount they were going to spend on the Money Follows the Person Act and the Family Opportunity Act. For this they wanted to cut Medicaid (targeted Case Management). What they chose to cut led to opposition from groups that had previously supported the Family Opportunity Act, and Democratic offices began to raise concerns. By late June, the bills were pulled from the agenda of the House.
Since no consensus has been found, the bills are now dead in the water.
A letter will be sent to all state Medicaid directors, explaining that under current Medicaid Law, even without new legislation, states can implement the Money Follows the Person Act. the letter also will provide guidance as to how this can be done. It says that a few states are already doing so and encourages others to try it.
To find out more about the Money Follows the Person Act, visit the National Council on Independent Living website.
People from the Film
August 2008: Bonita Dearmond writes in with an update:
During the past 4 years my children have grown into teenagers. It seems funny to see how young they were during the filming of "Freedom Machines."
I am attending college part time and volunteering at a private Christian school. Jesus Cares is still being aired Saturday mornings on WXRQ radio and can be heard via the internet at 1460wxrq.com.
I am still involved with the "Extend Your Eyes" Support group and as the opportunity arises speak to motivational or Church groups.
One of my other passions is writing poetry, short stories and essays.
We still live in a small community in Tennessee. The house we were planning was completed and we moved into it 3 years ago.September 2004: Bonita Dearmond continues as a computer training consultant for the Technology Access Center in Nashville, when students are available in her part of the state. She also continues to explore opportunities for full-time employment.
In the meantime, Bonita keeps busy on a variety of activities. When occasions arise, she speaks to groups about disability issues, self-motivation, and self-advocacy. She is a member of the Community Accessibility Council, which is working to make the Career Center in Lawrence County Tennessee accessible for persons with disabilities. She is serving as President of Extend Your Eyes (EYE), a support group for people with vision impairments, their family, and friends. Bonita began a radio ministry, Jesus Cares, which is now in its eleventh year of broadcast on WXRQ in Mt. Pleasant, TN. She is looking forward to doing more ministry-related speaking engagements during the next year.
Plans are underway for Bonita and her children, Rebekah and Michael, to move into a new home, possibly before the end of this year. They are looking forward to meeting new people and having new opportunities through the Freedom Machines outreach programs.
August 2008: Since the film aired in 2004, Susanna Martini has completed her bachelor’s degree in Communication with a minor in Disability Studies at the University of Washington in Seattle, Wa. Susanna was fortunate enough to be able to work on the faculty committee which created the Disability Study course. She is now planning on graduating from Gonzaga University in Spokane, Washington with her Masters Degree in Communication and Leadership this December. She has married her long time love, Matthew Wiemken and has a ten month old daughter Lily. Susanna hopes to work for a university in their Disability Student Services Office. "Freedom Machines" remains a wonderful memory for Susanna. The film convinced her that she wanted to be involved with the Disabled Community and work toward helping others with disabilities reach their goals.
September 2004: Susanna Sweeney-Martini has finished her sophomore year at the University of Washington. Due in a great part to her interaction with Jamie Stobie and Janet Cole during the production of "Freedom Machines," her interest in marine biology has taken a sideline to her growing interest in disability studies and communication. She is on the Disability Advisory Committee at the University of Washington helping to create a Disability Studies major. (There is only a minor at present.) She was offered an internship in Washington D.C. at the Internal Revenue Service's Equal Opportunity office for this past summer and next summer as well. Although able to fund her own accommodations this year, she was unable to fund a caregiver's accommodations. She is saving toward this for next summer. Susanna has recently received a promise ring from her boyfriend, Matthew Wiemken, another student, and they plan on marrying after graduation.
August 2008: Floyd Stewart writes:
I celebrated my 16th year at the Center for Independent Living of Middle Tennessee. I am the only original staff member left. I am continuing to develop community education programs; providing information covering the Americans with Disabilities Act, Help America Vote Act, and Fair Housing Act. Despite what some may think this great nation is filled with individuals who believe, as our forefathers believed, "we are by the people for the people." Dr. King wrote (in his book Stride Toward Freedom, 1957) that, "The shape of the world today does not permit us the luxury of a faltering democracy. ...if America is to remain a first class nation, it cannot have a second-class citizenship..."
I attempt to empower consumers, via my peer counseling program, to reach their vision of independence. Through the use of assistive technology, personal assistance through home and community based programs, home ownership initiatives, rehabilitation services, and legislation geared to break down barriers that inhibit our constituents from participating fully in main stream society, I have seen many success stories. Working with the community at large, I have sought to educate lay persons about disability sensitivity, appropriate language, and issues individuals with disabilities face with activities of daily living.
I frequently work with elected officials to develop legislation and policies to facilitate greater independence and access to services. I have approximately 40 active consumers and average about 175 information and referral calls per month. This activity coupled with speaking engagements and work on board and advisory committees keep my weekly schedule fairly hectic.
Lastly, the above-mentioned activities do not include my family life (4 children and 4 grandchildren), managing attendant care, my research, working on my autobiography and hobbies (drinking, partying and chasing loose women "smile") but that said, life is great. Helen Keller once said, "life is either a daring adventure or it's nothing." I concur!
September 2004: With the help of her technology, Shoshana Brand lives a busy and productive life. Because of her physical and visual disabilities, technology plays an enormous role in giving her maximum access to the world. Shana uses a wide range of technologies — such as her remote-controlled door opener, her phone system operated through a computer, her touch-sensitive adapted computer keyboard and talking screen, or the push button-controlled bidet attached to her toilet — all of which allow her to be her best and to function as independently as possible.
Shoshana has continued to develop her small business, Blue Rose Videos. It is a video rental service that rents commercial films that have audio narration added so that people with vision impairments can enjoy the movies. Because her business is handled via mail, her customers come from all over the country. They express great pleasure in having access to movies, sometimes for the first time. Shana is working to grow her business, and to share her love of film with others. Her website is: bluerosevideos.com.
In addition to running her business, Shana participates in regular swimming, adapted yoga classes, local drama groups, and creative writing classes, filling out an already busy week.