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The Declaration! is the newsletter of the Memphis Center for Independent Living. We have listed on our website all the newsletters since the summer of 1996. The popular section, "On the Network," which lists things to buy or sell that are of interest to people with disabilities, is kept up to date on the internet. The Declaration! is printed quarterly and is available in alternate format, either tape or disk, with all the news of MCIL events and issues of the various grass-roots organizations in contact with the center.
The rule requires fleets to be completely accessible by 2012. In two years, however, one should be able to request an accessible bus with advanced notice.
"The intention is that every bus in every major fleet be fully accessible every day at every stop," said Secretary Slater.
ADAPT advocates are cheering the ruling as a big success. A nation-wide protest by ADAPT last year in Memphis and 39 other U.S. cities shut down bus service around the country. Greyhound was renewing its fleet with inaccessible buses, but now must only purchase vehicles that are lift-equipped.
The ruling is a big success, likewise, for millions of lower income people with disabilities that live in rural areas. Transportation is "absolutely essential for mobility and quality of life," stated Slater. Dawn Russell of Memphis ADAPT alleged violations of the Americans with Disabilities Act (ADA) by Greyhound. Dawn settled her Federal pro se complaint for a conference with the Greyhound ADA Coordinator and a $5000 donation to ADAPT.
WE WILL RIDE!
Ramps, accessible parking, Braille signs and a variety of accommodations are seen at other businesses around Memphis since the civil rights initiative of the ADA took effect. Because the cost of compliance may vary, and to encourage compliance of small businesses, the ADA merely requires that public accommodations make alterations "when readily achievable." The Public Eye, however, has used this attribute of the ADA to avoid providing access and denying equal access to all Americans.
ADAPT organizer Deborah Cunningham is also the Executive Director of the Memphis Center for Independent Living. She knows of 2 other successful pro se complaints dealing with violations of the ADA filed in Memphis this year. Pro se litigation is often associated with prisoners, yet it is a method of direct access to the Federal Court System for all citizens.
"This is what we do," explains Ms. Cunningham who is not an attorney,
"we are all about self- advocacy." Deborah has demanded a jury trial and
hopes to have the opportunity to present her case to fellow Memphians.
It is time to list all the obstacles, and make a timetable to remove them. Your input is essential in directing local government to find barriers and to schedule modifications. A PUBLIC HEARING, is planned for Thursday, Oct. 8, at 6 p.m. MATA will be providing extra transportation so that no one is left out.
October 8, 1998
6 p.m.
City Council Chambers
125 N. Main
Memphis, TN 38103
Some areas of access that will be examined:
Dawn Russell, the ADAPT representative, stated that the Medicaid money that flows into this state is for the long-term care of Tennesseans, it is not exclusively for the nursing home industry. Dawn spoke out because many members of the Council were treating the public funds as if the money belonged to the nursing homes.
Dawn made a simple motion that public funds are not a privilege of the nursing home industry, and obviously should be considered in a "comprehensive plan." The Council, according to the Commercial Appeal, "whose numbers are stacked in favor of the nursing home industry," gave the motion a cold shoulder
Likewise, the chances of the Planning Council developing a real comprehensive proposal is very slim. With $750 million given to the nursing home industry, their lobbyist's are hard at work to keep the huge subsidy away from individuals who would like choice in long-term care. Paula Wade, a reporter for the Commercial Appeal, was at the Council meeting and relates:
The Motion:
That this council (Long-Term
Care Advisory Council) make a clear statement that TennCare/Medicaid funds
for the long-term care of Tennesseans are not a privileged entitlement
for nursing facilities reimbursement, and must be used in formulating a
"comprehensive plan for long-term care."
So when Memphian Dawn Russell, and advocate for the disabled, proposed adoption of a position statement declaring that the state's Medicaid funds for long-term care "is not an entitlement for nursing home(s) ... and must be used to formulate a comprehensive plan for long term care..," the meeting came to a screeching halt. [The Commercial Appeal, Sept. 22, 1998]
Clearly the nursing home industry does not want to compete with home and community based services. If people could choose between a nursing home and their home, the nursing home industry would lose a lot of business.
Many people feel that nursing homes are needed as a last resort. However, the issue in Tennessee is choice. Institutions should not be the only option for people with disabilities, and principally our long-term care money should "follow the individual."
Originally designed to build a Great Society, Medicaid is now used to subsidize facilities rather than provide for the long term care needs of people in Tennessee. Subsidizing the nursing home industry, however, will not improve the care for Tennesseans. Only by offering real choice can conditions improve.
It is overwhelming. You are identified by a number, a nursing home number. You have a band like an animal with that number on it. They have no respect for you in a nursing home, they will yell at you 'Hey you, come here.' People die without notice. The person signed off to bathe you has never come near you with water. The assistants have a circle of power over you that they pass on to each shift. You must submit. There is constant theft and if you report it your nightmare has just begun. Family members bring you clothes and money and it is stolen before they leave. Reporting theft just gets thrown out. They say they do not have time to investigate the complaints of patients.
It is like a penitentiary. If I die someone will have my bed tomorrow. I want nursing home administrators and Governor Don Sundquist to live in a nursing home for a day. They would change their minds about home options if they had face the neglect, smell the human waste, eat the food they give you and sleep on sheets that have not been changed for weeks. Will anyone open their eyes and see the people jailed by the nursing home industry? Go and see for yourself."
Sincerely,Melvin's letter was published last November in the Commercial Appeal. MCIL encourages everyone to write the paper about the issues that you feel are important. For assistance with a letter to the editor, or to see past examples of letters please call or come by MCIL.
Melvin Douglas
Oct. 27, 1998
Just as a street here in Memphis will connect with the other cities in Tennessee, Uttilla v. Memphis reaches out to Nashville, Knoxville, and Chattanooga. The entire State Highway Department also must demonstrate a way to provide access.
A plan should have been produced eight years ago according to Federal law. Unfortunately, because the City of Memphis is so delinquent in making a plan, we estimate the cost to the city is more than double.
Issues of governmental compliance with the ADA are generally considered Title II issues. Title II of the ADA includes Non-discrimination on the Basis of Disability in State and Local Government Services.
MCIL can answer any paratransit questions you have. We also have a limited number of "Rider's Guide" drafts we will give to people interested in improving transportation in Memphis.
The Memphis Center for Independent Living has developed a do-it-yourself lawsuit for citizens to file in Federal Court to demand their civil rights. MCIL also has a form to defer any court fees so there is no charge at all. Ask Tim about the "pro se package," free from MCIL.
The suite alleges that the state's policies violate the 1990 Americans With Disabilities Act, which requires that publicly funded services for the disabled be given in the "least restrictive setting possible." The suit also alleges the state violates federal Medicaid requirements to provide necessary home health services.
"The big question here is how you pay for long-term care services if the MCOs have to deliver them,"
Bonnyman said. "The state's going to have to tell the nursing home industry they have to share'' the $700 million in TennCare funds that go to nursing homes.
If you are losing home health benefits, contact the Tennessee Justice Center at (615) 255-0331.
For more information on ADA Title II problems contact MCIL at (901) 726-6404.
Dawn Russell of Memphis ADAPT did it the hard way. She rode 20 hours on a Greyhound bus to the American Bus Association (ABA) conference in Washington D.C. Dawn met with the ABA executives on Dec. 15, 1998, and immedately got on a bus and rode 18 hours home.
Greyhound buses will be accessible by 2012, and everyone should have the option to ride a bus with a lift next year by calling 48 hours in advance.
Dawn - a wheelchair user - rode on buses that did not have lifts. Greyhound and the ABA say that removing a person from his or her mobility device and carrying him or her on the bus is the best they can do to accommodate all passengers. Dawn kept a journal of her trip that shows the bus company executives are wrong.
Greyhound provides transportation to many rural communities and low-income Americans. Unfortunately, until buses have lifts, many people that use wheelchairs will never feel welcome to use buses as transportation.
Dawn is a regular Greyhound customer, yet has never had the chance to ride on a bus with a lift. She is dedicated to ending this discrimination. Please call to learn more about over-the-road bus accessibility and how the ADA applies to your transportation needs.
FTA toll free numbers for concerns regarding public transit accessibility and related issues. (888) 446-4511 voice. (800) 877-8339 TDD/FIRS
Dawn will work and play at Atlantis, in Denver Colorado, the national headquarters of ADAPT. Atlantis is internationally respected for its progressive stance promoting independence and pride for people with disabilities.
I will miss you Dawn.
Barbara Bounds
Deborah Cunningham
Melvin Douglas
Judy Neal
Suzi Osborn
Pat Pugh
Sher Stewart
Dawn Russell
Tim Wheat
Long-term care for people with disabilities is the only state program in which people are expected to leave their homes and given no choice but to live in a nursing home. Tennessee lags behind every other U.S. state and spends over 96% of public funds for long-term care on institutions. Long-term care funds should be for people not facilities.
ADAPT and other local community groups are working to change things in Tennessee. The nursing home industry, however spends millions of dollars to keep the tax money flowing into their pockets. The major tool for change is community involvement and support. Call MCIL to find out how you can help.
MCIL pointed out the difference between ADA accessible parking and the "privileged" parking at the V.A. "We support people with disabilities in their self-advocacy to receive appropriate accommodations," stated MCIL's response.
MCIL asked Andy Wise and Channel 3 not to lose sight of the big picture. "Only three in ten working- age adults with disabilities are employed full or part- time compared to eight in ten adults without disabilities. . . even though almost three out of four who are not working say that they would prefer to be working." [1998 NOD/Harris]
There are three sections of trail throughout Shelby Farms that are accessible. One is south of the traffic signal at Walnut Grove and Farm Roads and winds near the Farmer's Market on Germantown Road. Another begins north of Patriot Lake and ends south of Mullins Station. The final segment is the path around Patriot Lake that has been widened to twelve feet.
Superintendent Martin will soon offer a map that will show the accessible trails.
Shelby Farms also offers many other features for visitors with disabilities. Exercise trails throughout the park offer workout opportunities and instructions for people that use wheelchairs. The park is also working on renovating the trail designed for people with visual impairments. A newly renovated accessible visitors center can be of more assistance of what the park has to offer.
Call Shelby Farms for more information and events: 382-2249.
GOALS, a micro-enterprise, peer lending group, held their election of officers for 1999 on Dec. 15, 1998. Janice Anderson was selected President; Barbara Atkinson, Vice President; Deborah Sanders, Secretary, and Cecil McDaniels was elected Treasurer. Deloris West was appointed to do public relations, and Judy Neal agreed to be the MCIL GOALS sponsor.
Do you know any small business owners who could inspire GOALS members to reach for their dreams? Dreams become realities when people use self- discipline and every resource available to them. Why not join GOALS and Make your dream come true?
GOALS is interested in attracting new members and getting reacquainted with old ones Call Deborah Sanders at 527-0495.
A no-show policy is enforced to improve service to everyone by limiting the number of miles buses travel but do not make a scheduled pick-up. MATAplus believes they can improve the efficiency of the paratransit system by holding riders accountable for canceling the bus when they do not want service. Three "no-shows" in a month could mean a loss of service for 30 days.
The Barrier Free Memphis Society has raised some significant
questions concerning the service of MATAplus. Although the enforcement
of no-shows is not a 1990 Americans with Disabilities Act (ADA)
issue, MATA must respond to these serious problems before they further
restrict access to transportation for people with disabilities.
Highlights include:
Not Dead Yet held a constant vigil outside the courtroom to remind the public that while everyone retains the choice to end their life, Kevorkian has targeted people with disabilities. Extending this "special choice" exclusively to people with disabilities is harmful to the fight for basic human and civil rights.
"It is the ultimate form of discrimination to offer people with disabilities help to die without having offered real options to live." -Diane Coleman
Who is my city council representative?
576-6500
E.C. Jones
District 1
125 N. Main 38103
576-6786
Brent Taylor
District 2
5599 Poplar 38119
725-0100
Jerome E. Rubin
District 3
4132 Elvis Presley 38116
346-2333
Janet Hooks
District 4
993 S. Cooper 38104
278-1122
John C. Vergos
District 5
52 S. Second 38103
523-2746
Joe Ford
District 6
12 S. Parkway W 38019
948-7755
Barbara Swearengen Holt
District 7
125 N. Main 38103
458-9406
Joe Brown
District 8-1
1384 Jackson 38107
274-4724
Rickey W. Peete
District 8-2
333 Beale 38103
529-0999
Myron Lowery
District 8-3
125 N. Main 38103
576-6786
Patricia Vander Schaaf
District 9-1
125 N. Main 38103
576-6786
Tom Marshall
District 9-2
2189 Spicer Cove, Suite 4 38134
386-0092
John Bobango
District 9-3
530 Oak Court Drive,
Suite 345 38117
762-0530
The crowd was rallied by speakers Janine Kemp, Governor Dick Thornburg and Justin Dart. Senator Tom Harkin started the crowd chanting: "Our homes not nursing homes!" Stephanie Thomas stressed a passionate point in her speech. She looked out at the crowd and said that "we are a beautiful and powerful force. We are defending great and high ideals, as well as the basic human issues."
Wade Henderson from the National Civil Rights Committee said "Civil rights must be measured by a single yardstick, ...if there is no Justice there will be no peace." The leading disability rights advocate Steve Gold told us that "We will win Olmstead," but like Brown v. Board, the states are not going to voluntarily integrate. "You are going to win it on the streets," he warned.
An ADAPT Member, finished the rally up and pointed everyone toward the Supreme Court. ADAPT endorses national legislation, called MiCASSA, to give people a choice rather than drive them into institutions. He said that "MiCASSA will end the forced exodus of people with disabilities from their families. Choice will shift the bias away from institutions."
Health related tasks that can be delegated to an unlicensed person by a health professional such as dispensing medications, catheterization and tube feeding are also considered attendant services. Personal assistants, or personal care attendants (PCAs), are individuals who are hired to perform services that enable persons with disabilities to participate more fully in community settings and activities, including employment.
Personal assistance services can be financed by private funds, Medicaid, Medicaid Home and Community-Based Waivers and state programs. While most states offer these and other options, Tennessee does not extend Medicaid to assist citizens to live at home.
ADAPT is working on a state and national level to make personal assistance services a consumer option. The national legislation MiCASSA will amend Medicaid to provide long-term supports like personal assistance services, to be consumer controlled rather than dictated by an institution or facility. Medical supplies, equipment and appliances suitable for use in the home are also covered, along with necessary supports services to ensure Americans can live where they choose.
Hiring a PCA puts you in the position of employer. Avoid letting your PCA make decisions for you. You are the one in charge, even though you are physically dependent on your PCA. You will be expected to train your own PCA. This can be time consuming if there are frequent turnovers. Patience and respect for others are essential qualities of a good PCA employer. People will not work well unless they are treated with respect.
Help ADAPT in the campaign for personal assistance services. Call 726-6404.
Two Georgia citizens, Lois Curtis and Elaine Wilson, sued under Title II of the 1990 Americans with Disabilities Act (ADA) which requires that services offered by a public entity be delivered in "the most integrated setting." Georgia argues that forcing citizens to live in institutions does not constitute discrimination because non-disabled people do not receive such services. The ADA gives no protection to individuals with disabilities, Georgia contends, who receive services designed only for people with disabilities.
The Congressional findings in the ADA itself counter the rhetoric of the Olmstead petitioners. The federal civil rights law explicitly states: "Segregation of disabled people continues to be a serious and pervasive problem." Congress further made it clear in enacting the ADA that discrimination against individuals with disabilities persists in a wide variety of areas of social life, including "institutionalization." Since non-disabled people are not institutionalized, obviously the ADA is intended to end the isolation and separation from society of people with disabilities.
Those supporting Olmstead have adopted the erroneous reasoning of the Supreme Court in Plessy v. Ferguson. Justice Brown wrote in the majority opinion of Plessy, over a hundred years ago, that legislation cannot eradicate "physical differences," and therefore separate railroad cars were justified for different races. Similarly, petitioners hold that the ADA cannot eliminate physical differences that warrant people with disabilities being separated from typical social and community activities. Georgia asserts that separating people with disabilities is a states prerogative, consistent with the ADA, and not discrimination.
Separate is not equal. Sen. Lowell Weicker, an original sponsor of the ADA in 1989, explained the aim of the civil rights legislation to Congress:
"We have created monoliths of isolated care in institutions. It is that isolation and segregation that has become the basis of discrimination faced by many disabled people today. Separate is not equal. It was not for blacks; it is not for the disabled."Resistance to non-institutional alternatives comes from the entrenchment of the nursing home industry and lobby. Before the summer of 1965, when the Social Securit Act was amended to authorize Medicaid, there was no nursing home industry. Now, nationally the nursing homes special interest lobby is one of the 50 most exorbitant spenders for political favors. In Tennessee only three other interest groups spend more to influence our governor and legislature than the nursing home lobby.
More home and community based services are not any more expensive to Tennessee, but they can represent a huge loss to the subsidized nursing home industry. Currently nursing homes face almost no competition for the $750 million, mostly Medicaid, that flow into this state intended for the long-term care of Tennesseans. Ninety-five percent of the public funds for the long- term care of Tennesseans, are paid to facilities.
Tennessee is dead last among U.S. states in provision of alternatives to institutional care. The 1997 Tennessee comptroller's report mentioned the success of Wisconsin, Oregon and Washington. Between 1979 and 1995, Oregon cut long-term care costs by $400 million. Between 1982 and 1992, the report declared, the total number of nursing home beds in those three states dwindled and home and community services increased. Yet Tennessee still prefers to offer, almost exclusively, the most expensive and least desired form of long-term care.
Provision of institutional services alone are both unnecessary and more costly. Governor Sundquist has resisted expanding home and community based services to lower Tennessee's long-term care bill because he says he fears creating a "new entitlement," that would bankrupt the state.
The "new entitlement" that Sundquist fears are eligible individuals that are spending their own resources to stay out of a nursing home and might request home and community based services if they were available. Many people that are eligible in Tennessee do not seek any services at all because those services are only obtainable in a nursing home. Throughout the nation, most community-based long-term care is provided by family members and friends. Therefore, Tennessee controls its long-term care costs, in part, by providing citizens with only the worst choice possible.
While most people see the impact of the ADA in accessible parking, buses and buildings, the essential goal of integrating society is less visible. The occupants of institutions are often the most disenfranchised members of our community. The effect of institutionalization is disempowering along with the loss of contact with family, friends and traditional community roles. President George Bush stated the 1990 Americans with Disabilities Act would break down the "shameful wall of exclusion," separating people with disabilities from other Americans.
By Tim Wheat
Index
of Volume 5 No. 4
Summer 1999
Fourth try for Memphis to have a public hearing on the ADA
BellSouth Information Service Fees
Women with Disabilities Resource Center
(MEMPHIS, Sept. 13) The Barrier Free Memphis Society has invited all 43 candidates in the municipal Memphis City Council Election to participate in a "Soapbox and Mixer," Sept. 13, 1999 at 3 p.m. An accessible "soapbox" will be set up outside in good whether, and inside if necessary at the Memphis Center for Independent Living, 1633 Madison Avenue.
Candidates are encouraged to address issues that concern people with disabilities in the Memphis area, but they may use the soapbox as they wish. Because the soapbox is not a debate, the candidates will be discouraged from comparing themselves to other candidates.
The "Soapbox" will last about 45 minutes. Soft drinks and refreshments will be available following at a "Mixer" to allow socializing, mingling, and other vote-getting techniques.
Back to the Index of Vol. 5 No. 4
Fourth try for Memphis to have
a public hearing on the ADA
Memphis has failed three previous times to hold a public hearing on
the "transition plan"
required by the 1990 Americans with Disabilities Act (ADA). Robert
Spence, the City Attorney, has scheduled a fourth try at 6 p.m. October
21, 1999 in the City Council Chambers, 125 North Main Street.
Citizens of Memphis expecting the city to become more accessible since the civil-rights law was passed in 1990, have watched critical deadlines pass without action. A self- evaluation and transition plan were to be prepared by the city in 1992, but Memphis still has not complied with the ADA. In fact, the City Attorney's office canceled the meeting that was to be held in City Hall last year, and the city has failed to give proper notice of the other public hearings.
Although Memphis has been building some curb ramps, there has never been an effort to include the public or coordinate a definite schedule of compliance. In January of 1995 then City Council member Barbara Sonnenburg warned that "...the city would be sued if it didn't accelerate the timetable." [The Commercial Appeal, Roland Klose; 1/26/95 p. B1]
Memphis is putting a lot of money into the convention center, ballpark,
and many new
developments to improve the city. Those improvements will not
have a reasonable return in more tourists and commerce, however, if the
city continues to cultivate its unwelcoming reputation, record of inaccessibility
and non-compliance with federal standards.
People with disabilities are being left out of this process. Don't let Memphis get further behind other U.S. cities. Call your city council representative (listed in the previous Declaration!) and the Mayor 576-6500, to let them know access is important to you.
Back to the Index of Vol. 5 No. 4
"People with disabilities are less likely than nondisabled people to vote and less likely to be registered to vote," says a study by the Disability Research Consortium.
MCIL wants to change that.
Congratulations to Melvin Douglas and Josh Teague, the first paratransit riders to cross the Mississippi River.
MATAplus, the Memphis paratransit system, will go anywhere the fixed-route bus will go within a three-quarter of a mile corridor. MATA began service to West Memphis Arkansas last June, so MATAplus will go there also.
If you would like to use the public transit system, call 722-7197 to get a MATAplus application or to renew your certification. Please notify MCIL if you have any problems with MATA.
Back to the Index of Vol. 5 No. 4
BellSouth Information Service Fees
The 29¢ fee for telephone directory information can be waived for people with disabilities that cannot use the print directory. Persons with cognitive, learning, sensory or physical disabilities can get an EXEMPTION FORM by calling (901) 557-6253.
The exemption does not cover the 45¢ connection fee which is offered during the recorded announcement. There is no charge, however, if a person with a disability has trouble with dialing a number. The operator will dial if the person with a disability explains their need. If charges do appear on the bill, the customer services department will remove them.
BellSouth Customers with Disabilities phone number (901) 557-6253.
Women with Disabilities Resource
Center
The Department of Health and Human Services announced the first-ever federal resource center for women with disabilities. The new resource center will offer summaries about critical health issues for a variety of disabilities, including physical, neurological, hearing, speech and visual impairment. There will be information on federal and state laws and regulations that protect disabled citizens, news about medical research, statistical information, and ways to improve health.
Information specialists are available on its toll-free telephone service from 9 a.m. to 6 p.m. eastern time.
1 (800) 994-9662 [voice]
1 (888) 220-5446 [tty]
www.4woman.gov
Back to the Index of Vol. 5 No. 4
Visit the Memphis Center for Independent
Living
MCIL has a new look with new carpet. The staff would like you to come see the Center and get to know us. You can ask about Independent Living, the 1990 Americans with Disabilities Act, or just get acquainted with MCIL.
The PALs program, Independent Living for youth and young adults, has produced their most recent newsletter filled with personal experiences of disability related issues.
The newsletter is called Wheeling and Dealing, and the
feature is titled "Me and My Disability." Pat Jessup is the head
of PALs.
Back to the Index of Vol. 5 No. 4
The Memphis Center for Independent Living
1633 Madison Avenue,
Memphis, TN 38104
(901) 726-6404 v/tty (901) 726-6521 fax
mcil@mcil.org
MCIL is a United Way of the Mid-South member Agency
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