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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 Memphis group was in DC the first week of the action with 250 other activists. Newt Gingrich, however, did not actually introduce the legislation until the second week of the action. The Medicaid Community Attendant Services Act (MiCASA), since it was introduced has built some good support.
The campaign for MiCASSA has just begun. It needs your support and the support of everyone in our community. Generally MiCASA will redirect Medicaid money from Institutions to the people that need it. The result is that people will be able to use the money to live in their own home and not be forced into an institution.
MCIL supports MiCASA because it works to empower people with disabilities. Rather than depending on an institution to make basic decisions, MiCASSA will focus authority on the individual.
First Tennessee is reviewing their policy that makes the state non-driver identification card a secondary form of identification. Anyone that is licensed to drive a car does not need any further ID, however, people with disabilities that use the state ID must provide some additional documentation under the current policy. First Tennessee should announce a solution that treats all Americans equally soon.
NationsBank (Boatmen's) has a similar practice. They do not accept the state ID at all, but branch managers are instructed to use their judgment. The result is that people with disabilities are not extended the same convenience as citizens who can drive a car. NationsBank feels that extending "special" treatment to people with disabilities is not discrimination.
The state ID requires the same identification, carries the state seal, and has exactly the same authority from the state government. NationsBank contends that people that do not drive a car are more likely to defraud the bank (Although they refuse to release any evidence of this), therefore; their process is directed at thieves and not people with disabilities.
The ADA and The Civil Rights Act of 1964 are clear that this is discrimination. MCIL would like to know how you are treated at your bank. Do they require extra ID? Are the tellers and staff accessible? Can you expect equal treatment?
Phone, write, or call Tim Wheat about your experience with local banks.
Mary Jane will be sincerely missed by MCIL. She will start a new job, based closer to her home in Mississippi, this week (Aug. 18).
Greyhound Lines Inc. does not want to do business with Americans because they are too
accustomed to special treatment and hand-outs from the government. The Office of
Technical Assistance found lifts to be a practical solution that add only 1% to the
operating cost for the life of a bus. Yet Greyhound is purchasing new buses without
lifts.
On Aug. 8, ADAPT activists in 40 cities around the U.S. confronted Greyhound about ignoring the civil rights of their customers. In many cities bus service was suspended while ADAPT members made their point that all Americans should be able to ride the bus.
Memphis ADAPT also demanded change. They insisted that bus company executives know that many Americans are appalled by their decision not to include all Americans. Seven years after the ADA has become law, Greyhound is still lobbing against compliance and delaying the time when people with disabilities can ride the bus.
Do not bet on this Greyhound.
We Will Ride!
On Sept. 17, 1997 because of media attention and a lawsuit, MATA officials announced that MATAplus would provide NEXT DAY SERVICE. This means that if you are certified, you may call MATAplus today between 8 a.m. and 4 p.m. to receive a ride tomorrow. You may call as many as three days in advance.
There are many areas where MATA is still not in compliance with the ADA. Early in
November some MATAplus riders got together and filed a class-action lawsuit aimed at
correcting problems with the paratransit system. Other riders have "taken to the streets,"
blocking buses and demanding that MATA officials respect American's civil rights.
MATAplus is not a charity ride. If you have trouble with MATAplus, stand up for your rights! Please get involved with others who are working to make MATA quality transportation.
The next meeting, Dec. 1, will feature William Hudson, president and general manager of MATA at 1 p.m., and city council member John Vergos at 3:30 Call 726-6404 for more details.
First Tennessee Bank recently changed their policy to make the state non-driver ID equal
to a drivers license. For Americans that are not licensed to drive, the state ID provides a
convenient accommodation.
First Tennessee Bank responded to the concerns of citizens with disabilities to provide an accessible identification policy that treats all Americans equally.
NationsBank does not accept a state issued non-drivers ID. Bank officials and branch
managers say if you have a disability you will get "special" treatment.
The Memphis Center for Independent Living will not accept "special" treatment. On July 26, 1997, MCIL filed an ADA Title III complaint with the Department of Justice against NationsBank.
Thank you to everyone that responded to Summer 1997 edition of The Declaration! In the last issue we asked "How does your bank treat you?" Please let us know of other areas of concern for ADA topics.
A: As amended in 1990, the Internal Revenue Code allows a deduction of up to $15,000 per year for expenses associated with the removal of qualified architectural and transportation barriers.
People blocked the inaccessible front entrance to the post office throughout the afternoon. Bill Bolen, manager of postal operations , drove from Jackson and conceded to all of the protesters reasonable demands. The Postmaster reaffirmed the commitment to make the Post Office accessible to Dresden this past Nov. 18.
Don't miss the annual MCIL OPEN HOUSE. Food fun and the best independent living in the south. Ask questions, meet the staff; WE ARE HAVING A PARTY!
As program director, Judy hopes to increase public awareness of disability issues through both communication and action. She feels strongly that the Center's programs must reflect the needs and demands of its consumers. "Everything we do should support consumer control and promote self-advocacy," she said. -jn
The real Judy Neal...
Judy Neal, former Director of the CIA, has infiltrated the Memphis Center for
Independent
Living. This subversive organization is plotting to overthrow the government and replace able-
bodied politicians with radicals with disabilities. MCIL is legendary for disrupting public
transportation and jeopardizing the lives of nursing home inmates. Through her incompetent
management, Judy hopes to shut down MCIL before the end of the year. "This place sucks,"
she
said.
ADAPT demonstrators filled the Rayburn building in Washington DC on Nov. 10. Rather than chants and posters, the peaceful power of their numbers on the 3rd floor convinced representative of Florida Michael Bilirakis to set a date for the hearings of the Medicaid Community Attendant Services Act (MiCASA), HR 2020.
A commitment for a hearing before March 31, 1998 means that Americans will get to hear Congressional testimony about the abuse and neglect in nursing homes. MiCASA offers a simple, less expensive alternative to institutional care by redirecting responsibility to consumers rather than uncaring establishments.
ADAPT activists were also able to get firm dates from the DOT to enforce regulations on Greyhound style buses, and from HUD to enforce housing accessibility. Dawn Russell and Pat Pugh, from Memphis, were among 64 demonstrators arrested struggling for respect and civil rights for people with disabilities during the action in Washington.
ADAPT meets at 6 p.m. at MCIL on the first Monday of the month. Find out how you can be part of this historic drive for respect and civil rights for people with disabilities. Call 726-6404.
The most common struggle for civil rights for people with disabilities is against the attitude of
pity
and charity. Nov. 3 riders of the Memphis paratransit system MATAplus marched into
Poplar
avenue and blocked three MATA buses because local transit officials continue to ignore basic
commitments. The people that marched into the street were determined to let the transit
officials
know that they will not sit at the back of the bus. "We don't want a charity ride," said Dawn
Russell
of Memphis ADAPT, "we want people to know this is our civil right."
Many of those standing their ground in front of the Memphis city buses earlier this month, were at the tribute to Evan Kemp. More Americans are recognizing the important effort that people with disabilities must make to bring about the change in culture and attitude that was begun with the change in the law, the ADA.
Ms. Russell, along with four others from Memphis, traveled to Washington DC last week to meet with more than 300 Americans that share her frustrations concerning civil rights. ADAPT, the grassroots political activist organization that Dawn Russell is a member of, is an action group that is highlighting the forced confinement of people with disabilities in nursing homes. ADAPT activists point out that incarceration in nursing homes is an example of the discrimination confronting all people with disabilities in our community. "There's no place like home," is a starting point that all Americans can agree on. For people with disabilities to make progress in employment, transportation and housing, they must overcome the attitudes that lock away more than 2 million people with disabilities in nursing homes.
On Nov. 9 from all across the nation ADAPT members gathered to pay tribute to
Evan
Kemp Jr.,
who died of a heart attack Aug. 12. Kemp chaired the Equal Economic Opportunity
Commission
from 1990 until 1993. A lifelong Republican, Kemp was an ADAPT activist and
outspoken
in his
opposition to physician-assisted suicide.
The tribute was also a rally for the Medicaid Community Attendant Services Act (MiCASA, HR 2020). Newt Gingrich introduced the legislation last June to redirect Medicaid money from nursing homes to give individuals a choice in long-term care. Speakers at the rally on the west steps to the U.S. Capitol noted Evan Kemp's hatred for nursing homes and his support for ADAPT. "Thank God for Evan Kemp," said Justin Dart, the grandfather of the ADA. "Nursing homes are as punitive as jails," said Janine Kemp who noted that successful movements were made by individuals like those of ADAPT.
Letters were read from President Bill Clinton and House Speaker Newt Gingrich expressing their sadness at the loss of Evan Kemp and support for the ideals he fought for. I King Jordan, the President of Gallaudet University, spoke about the need to reach out to people of all disabilities. Ann-Marie Hughey of the National Council on Independent Living (NCIL) echoed that call for unity and said "NCIL supports ADAPT and MiCASA 100%."
Mike Auberger, national organizer for ADAPT, spoke of the legacy of his friend Evan
Kemp.
"Americans are still forced into nursing homes to die," Auberger said, "do not be sad, be
outraged."
The crowd was treated to powerful lyrics when Diane Coleman, national organizer for Not
Dead
Yet, sang acappella, "Free Our People." Representative John Fox from Pennsylvania spoke of
his
support, as did Doug Stone of the Gray Panthers and Jean Serles of Speaking for Ourselves.
Recorded music by Johnny Crescendo started and ended the rally.
Following the rally, close to 300 people walked to the Rayburn Office building to give a letter to Michael Bilirakis. The unusually large 4 by 3 foot letter asked Bilirakis, the chairman of the Health and Environment sub-committee, to set a date for public hearings on HR 2020. The group punctuated their request by individually leaving a carnation, thus piling up hundreds of flowers to go with the letter.
The rally and tribute were a kick off for the Fall 1997 National Disability Rights Conference, also known as the Fall ADAPT Action. Before 11 am the day after the rally ADAPT was back at the Rayburn building looking for a response to the request for a public hearing for MiCASA.
Rather than chants and impassioned calls to end the control of institutions over the lives of
people,
ADAPT quietly and methodically occupied the Rayburn Building. Everyone had to
pass
through
the security check at the east entrance which slowed the invasion to a trickle up to the 3rd floor.
No chanting and no political placards were displayed. ADAPT protesters lined the passage but did not block traffic around the building or any doorways in the halls. The peaceful display was a very powerful image. Hundreds of people lined the halls and obviously spoke with a single voice.
About 50 ADAPT members packed Bilirakis' office and sealed a commitment from the Florida Representative to hold the hearings before March 31, 1998. This was a critical step for MiCASA. Now the nation will get a chance to hear congressional testimony about the grave conditions in nursing homes and the simple solution of home and community based alternatives.
After lunch outside the east entrance of the Rayburn building the demonstrators made their way, with the assistance of the Capitol Police, west down Independence Ave. Again the march was absent of the chants of inspiration. The Ford House Office Building on 3rd Street was the endpoint of the procession. ADAPT members quietly and slowly flowed past the security check at the accessible entrance filling the elevators up to the Fourth floor offices of the Director of the Congressional Budget Office (CBO).
The CBO has issued an early report on the cost of MiCASA. Although the legislation caps
spending at no more than the aggregate that would be spent on institutional care, the CBO
report
suggested the bill would result in a large demand for new funds. An aspect called
"woodwork", the
CBO contends, will cause large numbers of people to demand services under MiCASA.
At 3:30 in the afternoon the atmosphere around the fourth floor was tense. ADAPT members were lining the halls and more were coming up on the elevators all the time, however, the doorways and halls were not blocked. The office of June O'Neill, the Director, was packed with demonstrators. "Re-score the bill," chanted those packed in the offices with help from a growing mass of supporters outside.
ADAPT was asking that the CBO reevaluate their estimation of the cost of HR 2020. Astonished by the power of the people, the CBO promised to look at the concerns raised by ADAPT. Just before 4:30 a deal was struck to meet on Wednesday November 12, where CBO officials agreed to note the issues raised by ADAPT.
On the morning of November 11, Veterans Day, ADAPT members gather to discuss the three main areas of concern for civil rights for people with disabilities. They are the traditional areas of trouble for the civil rights movement: Housing and transportation. ADAPT is hoping to build on the success of last summers protest in 44 U.S. cities against Greyhound to assert people's civil rights in the area of transportation. ADAPT is also pressuring HUD all across the nation to enforce long ignored accessibility guidelines and stop guaranteeing loans to build nursing homes.
Veterans Day afternoon, ADAPT was on the march again. A single unbroken line of
more
than
300 people amplified the frustration of the central city traffic. Metro DC police responding to
the
pressure from a few irritated drivers would step in front of someone in an attempt to break the
line.
Those following, however, would just go around until the officer was standing in front of a
single
person and the line snaked on.
ADAPT members gathered closely in front of the White House to listen to a Washington Post story about Holly Caudill. Ms. Caudill had directly explained to President Clinton the necessity of personal attendant care last September. Clinton responded to Caudill, "get me the legislation and I'll sign it."
ADAPT protesters chained themselves to the gates on the north side of White House demanding that Clinton keep his commitment to Caudill and his campaign pledge that "I believe that every individual has a right to personal assistance services." Hundreds of allies were removed from the fence and sidewalk near the White House by the Park Police, but they continued a steady stream of chants in support from across the street.
The protesters were arrested and charged with demonstrating without a permit and released at
the
site. "Over two million Americans have been forced into nursing homes and other institutions
because federal policy currently doesn't offer them the choice to get assistance in their own
homes," said Mike Auberger. "HR 2020 will give them that choice."
The Associated Press piece that went out to the world press echoed the medical model stereotypes that ADAPT is struggling to overcome. The 100 word article said that the sixty-four people arrested were advocates for "programs that TREAT disabled people in their homes rather than hospitals and other institutions." ADAPT is fighting to cure the attitude that disability is a kind of sickness. People with disabilities are striving to be treated equally.
Just before noon on Nov. 12, the ADAPT demonstrators show they are highly motivated for more action. The crew breaks up into groups of between 4 and 25 to block all of the walking entrances to the Department of Transportation. All around the interior plaza of the DOT the groups chant "we will ride." Federal Police formed a buffer and listed the doors as "temporarily locked," however some people could enter and exit from the underground garage.
At 1 p.m. Joe Canny, Deputy Secretary of Policy, listens to a group of people that tell of the degrading experiences they have had attempting to ride an inaccessible Greyhound bus. The sickening stories of mistreatment punctuate the individuals plea for the DOT to publish the overdue regulations to prevent further abuse. Demonstrators still holding the doors sensed the futility of continuing to trust their civil liberties to bureaucrats. A chilling chorus goes around the DOT plaza: "The bus is on fire, if it ain't got a lift, let the damn thing burn."
Hours pass before the negotiations with DOT officials result in the unbelievable news that firm dates for publishing the regulations will be set by the Department of Transportation. March 15, with the final regulations in effect on Sept. 15, 1998. The south-west entrance is opened, but the other doors are held another 30 minutes. Negotiations continued in order to get stronger language that over-the-road carriers purchase lifts on new buses.
Forty minutes later, the ADAPT protesters that had released the DOT, were firmly in control of all the exits of the executive offices of the Department of Housing and Urban Development. Tension built quickly because of the number of employees attempting to get home only to find ADAPT members chanting at the exits, "we want Cuomo." Andrew Cuomo is the Secretary of HUD.
Thea Spires, from the Secretaries office, personally admonished police who were being overly aggressive at the basement garage exit. Soon after that situation cooled, Spires raced by the protesters again holding an agreement with ADAPT over her head for all to see. She backtracked and read the agreement to all the separate bunches of protesters causing them to release the doors. The short agreement stated that HUD would meet with ADAPT on the issues of enforcing 504 (accessible housing), and loans to nursing homes. The crowds cheered the agreement fervently, mostly because of the professional and respectful approach shown by the office of the Secretary of HUD.
The final event of the ADAPT action was a well deserved celebration including live music and dancing. Late into the night and the next day, as groups headed back to all parts of the United States, "see you in Memphis," was the parting phrase. As successful as ADAPT has made the time it has spent in Washington DC, members realized that the next step would be to showcase the dismay and dehumanizing conditions in America's nursing homes. ADAPT will take the message of MiCASA to the mid-south. Protesters will again gather from around the country in Memphis to display the institutional neglect of American's basic human rights and to make the declaration "There's no place like home," a realistic dream for all Americans.
Is Memphis planning for the future? Is our city designing improvements to attract major sporting events, milestone celebrations and premier conventions? The answer is NO. What does Memphis have planned for the future accessibility of the bluff city. The answer is sadly, nothing.
That's right NOTHING. Our city officials have no plans to make this city accessible, and therefore more attractive to business, industry and entertainment.
In looking closer at these issues MCIL found that the City of Memphis has negligently failed to produce a Transition Plan as required by the Americans with Disabilities Act [29 CFR 35.150(d)]. The purpose of a transition plan is to identify areas of need, coordinate efforts to comply with the federal law and set priorities for scheduled improvements.
The cities delinquency has already been expensive. Rather than spreading the cost of compliance over 15 years, Memphis now has only 7 years to make the city fully accessible. Further, without coordination the city is "piecemeal" spending ADA compliance funds without concern to the priorities of the Federal Law.
This is also very inefficient. For example, the North End Terminal, that opened last month, will be accessible. But do not cross the street. Although there are curb ramps surrounding the new facility, there are not cuts around the block.
Most critically, people do not see a commitment by the City of Memphis or a "good faith" effort to uphold the law which outlines civil rights and protects people with disabilities from discrimination. When will the promises of the ADA trickle down to the typical citizen?
Memphis
has no answer
Want a curb ramp? Call John Covey at: 576- 6907
A lot of money is being spent by MATA in extra driver
training, equipment, and software. The consultant to
MATA believes that we will see an improvement in
service by April.
Your input is very valuable to help improve MATAplus. When you have a complaint, call 722-7190 and request a response in writing. Bring issues to the Specialized Transportation Action Committee (STAC), which meets on the third Wednesday of each month. Call STAC Chairperson, Chris Colsey at 272-1969 to see how the committee can help people with disabilities with transportation. And take your ADA concerns to Willie Lewis, the MATAplus manager: 722-7196.
Curb Cut News: The ADA Title II requires that walkways and sidewalks be accessible by Jan. 26, 2005. Memphis still has about 6 years. What is troubling is that Memphis has no plan to actually respect this timetable. It is clear that city officials, likewise, have no intention to meet the deadline.
City engineers and planners can be insensitive to the civil
rights of Memphians because there is no strong public
outcry for "curb ramps." Without complaints from
citizens, the city feels that access is actually a low priority
for improvement. You don't have to complain, but do call
and tell the city officials where you need a curb cut.
If you would like a curb ramp near your home call John Covey at 576-6907.
This is a very frustrating aspect of the ADA. Because it is CIVIL RIGHTS legislation and not STATUARY law, we are responsible for enforcement through the courts and the Department of Justice. The DOJ has been so impotent in its responsibility, we have to boost our efforts.
The Memphis Center for Independent Living is
volunteering to be the ADA POLICE. When you see a
violation of the ADA, call MCIL. We have copies of the
Technical Assistance Manuals to show how to comply to
the law. We have previous examples from around the
country of how people are working for compliance. We
have letters you can write (or MCIL can write if
you don't want to expose your name) that have some teeth.
And finally, we have the ADA enforcement kits from
ADAPT, so you can get your day in court!
When you see a violation of the
ADA, call the cops....
MCIL 726-6404
There are two truly ironic things about this shower. The first is that Snowball is a kitten with a disability. Independent Living staff were tested in how they could help the kitten adjust to its new home. Because the new cat is deaf, "don't sneak up behind her," was said more than necessary.
Deborah Cunningham, the executive director of MCIL (new cats independence wing), is a cat owner herself and had many useful suggestions. Julene Chumbley, an intern at the Center, was charged with providing useful day to day care information. Julene is working on issues concerning dog guides and service animals and is very knowledgeable of animal care.
The other bit of irony is Frances herself. About a year ago, moving Frances' belongings out of St. Peter's Villa Nursing Home, people questioned if Frances could live on her own. It is clear that every segment of our social and healthcare system is completely slanted toward institutional life over the choice to live independently.
In Frances' case there was only one voice that called for independence. Unfortunately, that voice is not given much authority in our system. Frances' own desires and wishes were commonly ignored.
Now, Frances is working to combat that bias we have to nursing homes. Institutions are designed to ignore the needs and desires of individuals. They are not "non-profits" but a $53 billion industry preying on us. - You cannot have a cat in a nursing home.
The group assists someone starting a business by providing the key elements to success: planning, support and money. The business loans start out small and grow as the group members complete various aspects necessary to the growth and success of the business.
Barbara Atkinson has developed her business Barbara Atkinson OMO (for On My Own) through the GOALS group. "The group is helpful in a lot of ways," said Barbara, "it is good to have people concerned with the same things."
For more information on the GOALS group and peer lending call Kevin Lofton at 726- 6404.
Before her meeting with Cuomo, Dawn went to see Rep. Harold Ford Jr. Even though she did not have an appointment, Representative Ford made time to talk with her. Dawn showed Rep. Ford a picture of LaTonya, who lived in Kings Daughters and Sons nursing home. LaTonya now lives and works in Denver Colorado.
Background: HUD guarantees loans to nursing homes but does not give similar assistance to help people live and work in the community. This example of institutional bias helps the "good ol' boys" make megabucks off people with disabilities while limiting the free market and denying choice for Americans. HUD does not even enforce the 504 regulations that would mean 5% of projects that receive federal money would be accessible.
Because Tennessee does not have any attendant care services, people with disabilities must leave the state for job opportunities and to live in their own homes. "LaTonya would have been a vote for you." Dawn told Representative Ford. He then joined more than thirty other members of the House of Representatives to sign on in support of HR 2020. Dawn also convinced Rep. Wicker to attend the hearings on HR 2020 set for March 12.
Andrew Cuomo and the top executives of HUD all gathered to talk with ADAPT. Dawn
reported
that
Mr. Cuomo promised to respond to ADAPT's demands by April 15, and to have an "Action
Plan" to
implement the changes within six months. The demands were:
Over-the-road buses are an affordable transportation link between cities throughout the U.S. However, Greyhound Bus Lines continues to resist putting lifts on their buses. Lifts would make over-the-road buses a reasonable form of transportation for many Americans with disabilities living in rural areas.
Dawn Russell served the Terminal Manager here in
Memphis with a Summons for a Federal District
Court Complaint alleging that Greyhound violated
civil rights under the ADA. The manager then proudly
introduced a Scalamobil. He was sure that this
gizmo would solve all the problems for people with
disabilities. It was a handcart or dolly with a vinyl
seat and a powered set of stair climbing wheels.
Dawn transferred on board the Scalamobil and rode the thing, with the manager pulling, to the top of the steps. It is supposed to work much like an isle-chair used by the airlines. Four amazed Greyhound drivers (although according to Greyhound they are fully trained) looking on. One of the fully trained drivers commented: "Do you think it will work?"
At the top of the bus steps everyone learned that the answer to that question is NO. The Scalamobil will not fit down the isle of the bus. The Scalamobil could only make the driver's seat accessible to Dawn (and we know the enormous threat to public health and safety that would be).
The Scalamobil is a failure! It is obviously a poorly thought of scheme to further delay adding necessary lifts to Greyhound buses. The Office of Technical Assessment found that lifts would only add 1% to the operating cost of a bus. Syndy Sharp noticed that Greyhound is working harder to keep lifts off the buses than it would be to put the lifts on.
Hearings for MiCASA are scheduled for March 12 in Washington DC. Please let your congressional representative know how you feel about people with disabilities being ignored for the profit of the nursing home industry! Tell them:
Handicapped me
What can I do to make you see
I have everything you have - eyes, ears, nose, mouth
two arms in the north, two legs in the south
of by body.
I have feet just like you
I do everything you do.
Even walk with crutches and braces, of course
I have a voice that is just fine, even though I get
hoarse
when I'm trying to explain to people like you
that what I say is positively true.
I can do everything just like you, I say.
The only difference is I do it my own unique way.
[reprinted from the PALs newsletter: Wheelin' Dealin' vol. 1 no. 1 Jan. 1998]
A: Structural changes needed for program accessibility must be made as expeditiously as possible, but no later than January 26, 1995. This three-year time period is not a grace period; all alterations must be accomplished as expeditiously as possible. A public entity that employs 50 or more persons must have developed a transition plan by July 26, 1992, setting forth the steps necessary to complete such changes.
Q: How will the ADA make telecommunications accessible?
A: The ADA requires the establishment of telephone relay services for individuals who use telecommunications devices for deaf persons (TDD's) or similar devices.
The national disability rights grassroots "freedom fighters", ADAPT, stormed into Memphis to make an impact for MiCASA. You probably saw much of the efforts in the news May 10 through the 14th. Here are the behind the scenes stories from advocates on the front lines.
WHAT HAPPENED AT THE GOVERNOR'S OFFICE?
ADAPT advocates demanded that Governor Sundquist explain why his state was the worst at providing home and community based services. From his Memphis office, hundreds of protesters called to talk with Sundquist.
Dawn Russell was one of those demonstrators packed into Sundquist's office. "The Governor never talked with us," said Dawn. "He refused, through his aids, to talk on a speaker-phone."
"The Governor is an elitist, he only wanted to talk to leaders." said Judy Neal who was also at Sundquist's office. "He was afraid to face the people."
WHAT WAS THE POINT OF TAKING OVER THE GOVERNOR'S OFFICE?
Sundquist has to authority to redirect current Medicaid funding away from the nursing home industry and to more home and community based programs. The nursing home industry, however, has been an exorbitant spender for political favors. Although about 70% of nursing home profits in Tennessee come from the national Medicaid funding, Sundquist accepted $30,500 between 1994 and 1996 from the nursing home industry to keep the federal money flowing into institutions.
The work of the Governor of Tennessee just does not "trickle down" to all Tennesseans. Americans with disabilities that require Medicaid are not respected, they are disenfranchised because they do not control the money. The facilities and administrators that control the funding have access to Sundquist and they pay to continue that privilege.
ADAPT does not pay for political favors. The Memphis office of Sundquist belongs to the people of Tennessee, not the lobbyists and "good 'ol boys" that control the funding. ADAPT took that office for 24 hours, gaining the support of Mayors Herenton and Rout. ADAPT believes passionately that ultimately, the power of the people will prevail over the greed of the subsidized nursing home industry.
WAS THERE ANY DAMAGE DONE TO THE GOVERNOR'S OFFICE?
No. One news report said that less than $500 damage had been done, implying that there was some damage. Dawn Russell was at Sundquist's office all night and said that there was no damage.
WHY DID THE DEMONSTRATORS SURROUND THE FEDERAL BUILDING THE NEXT DAY?
"Because states like Tennessee can be so mired down it the interests of the nursing home industry," said Tim Wheat of the Memphis Center for Independent Living, "there is a need for Federal guidelines to reassert the importance of people." ADAPT does not just point out the poor care at nursing homes, they offer progressive and sensible solutions. MiCASA does not end the nursing home industry, it only offers choice and control back to people over facilities.
"We wanted to get Al Gore's attention," said Judy. The Vice President is part of the current administration and they have to take a stand on long- term care. Vice President Gore should be more sensitive to this issue because the state he represented for 20 years is the worst at providing necessary community choices.
Find out more about ADAPT,
call 726-6404.
Are you interested in meeting with others in a group setting? MCIL Program Director Judy Neal is looking into what topics and settings you would be interested in. Would you like to see MCIL start a men's support group, or a cross-disability social group? Phone your ideas to Judy 726-6404.
If you ever use MATAplus, the Memphis Area transportation service for ADA eligible people, you know the frustrations of poor service. This year the Barrier Free Memphis Society asked riders of MATAplus to take a trip and report how the paratransit system worked.
No one was completely missed by the bus, but only 41% said the bus was on time. Although service is undependable and generally not what it should be, 65% of those in the survey said MATAplus service had improved since last years study.
Why has improvement been so slow considering MATA has made a significant investment in vehicles and training? The survey may hold the answer. Only 12% thought that MATA was properly handling complaints.
The BFMS feels that without making a serious effort to resolve complaints, MATAplus will not ever be responsive to the needs of Memphians. Not just complaints, but riders do not feel they have access in making suggestions and recommendations to help improve the system.
In order to improve riders access in making recommendations, suggestions, and complaints we are asking people to call MCIL. We will forward a copy of your considerations to the proper authorities at MATA. The advantages of calling MCIL are:
Make plans now to attend the
July 6, Barrier Free meeting
at the Center for Independent Living.
Dr. Willie Herenton
will be our guest at 3 p.m.
The latest census data shows that 54 million Americans, or about one in five, has a disability covered by the Americans with Disabilities Act (ADA). Most are integrated into our community, however people with disabilities continue to be plagued by poverty, disenfranchised and segregated into nursing homes. People are often placed in a nursing home or isolated from community life because they do not receive adequate care to allow them to live in their home.
Three interrelated forces in our state that combine to keep federal Medicaid money flowing into the nursing home industry are: an institutional bias; the nursing home lobby itself; and the ingrained "medical model" of service delivery.
Every state that receives Medicaid funding is required to offer nursing home care. Home- and community-based programs that would provide the same care are optional. This obvious bias in the 30 year-old Medicaid program results in Medicaid money funding institutions rather than individuals.
In Tennessee, over 94% of long-term care funding is doled out to institutions. Administrators and their governing boards are the financial care-takers of the nursing home "beds." They determine what services are necessary, and how services are to be delivered to their charges.
The huge amount of Medicaid funding coming into this state, as in most states, has created a giant monolith opposing any change to the current system. Obviously, the nursing home industry, represented by the Tennessee Health Care Association lobby, has a huge vested interest in continuing to dominate the public funding for long-term care.
U.S. News and World Report lists the American Health Care Association Political Action Committee (AHCA-PAC), the national nursing home lobby, as one of the 50 most exorbitant spenders for political favors. Although 63% of nursing home funds nationwide come from Medicaid, the Federal Election Commission reports AHCA as one of the 50 PACs with the largest increase in funds from 1994 to 1996.
Society's inclination to view people with disabilities as sick, further establishes a medical model of service delivery and constrains individuals' control over their own care. The term "medical model" is used in a derogatory way by the disability community. This may be confusing since Medicaid, also known as Medical Assistance, is the main funding source. People with disabilities are not denying health related needs, but are questioning the locus of control of the long term care system. Today health professionals, doctors, nurses, physical therapists, occupational therapists, nursing home and home health providers are the focus of the long term care system. The desires of the individuals using these services are disregarded.
The independent living and social model, on the other hand, focuses on choice, consumer-control and the needs of the individual. Services are based on what will make people able to participate in community activities, to go to school or work, or to participate in religious and other community activities. Contrast this with the current medically oriented system that focuses on a medical diagnosis to determine what people can't do.
Although nursing home residents are commonly called "patients," administrators confine them to beds, and the nursing homes themselves are called "hospitals," nursing homes are not "medical" facilities. Nursing homes are not providing a cure. Former residents are living productively in the community not because of some "treatment," but simply because they have gotten out of the nursing home.
To the maximum extent possible recipients of the service should be in control. There are many tasks that people with disabilities need assistance with that are health maintenance activities. Unfortunately, many health professionals describe these tasks as medical, but they are everyday living tasks that are often routine in the lives of people with disabilities.
The institutional experience is not a medical necessity. It is a financial connivance. Tennessee isolates and segregates poor citizens into institutions, cycling the federal Medicaid dollars through the billion dollar for-profit nursing home industry.
WHY LONG-TERM CARE IN TENNESSEE NEEDS TO OFFER CHOICE
Attendant care is nothing complex. It is help doing the necessary tasks of daily life that are limited because of a disability. When someone is in a nursing home it is the job of the nursing home staff. It is a combination of the duties that one needs to accomplish to live independently. Consider these five advantages of attendant services.
First, is that you don't have to be locked in an nursing home to receive attendant services. This means the individual can live alone in their own home, or live with family or a loved one without relying on them for assistance with daily care and activities. There is no advantage to gathering people in one place, facility or institution to provide services.
Secondly, attendant services can give the individual a greater level of participation in their own care. More control not only streamlines the requirements for services by eliminating unneeded or unwanted aid, but can lead to empowerment and dignity.
Rather than being viewed as a commodity, people in charge of their own attendant services can become empowered to direct their care. Without this control over their care, people with disabilities are objectified and reduced to the role of "charity case." They are given no voice in appealing for appropriate care. "What difference does it make to put your shoes on the right feet," the health care worker or nursing home employee may say to you, "your feet don't work anyway."
Attendant services, thirdly, can create more social mobility for people with disabilities. Many people with disabilities that have avoided nursing home placement, are still not supported to the extent that they can work and fully participate in community life. Many rely on spouses, family, and loved ones to provide the needed services. This is not only a tremendous drain of our community resources, but it makes people with disabilities dependent on others and therefore constantly "at risk."
The fourth advantage is that in almost every instance, attendant services are less expensive than nursing home placement. Even for citizens who require care 24 hours a day, attendant services are more cost effective than institutional care. Most people in nursing homes in Shelby County receive less than 4 hours of attention a day.
The cost savings alone would be a compelling argument for choice, since it is mostly our taxes that provide the services currently. It is the human element, however, that makes attendant services an imperative. This country cannot continue to allow a select subsidized industry to profit at the expense of the taxpayer and the dignity of elderly and disabled citizens.
Finally, a competitive system allowing reasonable choice is the best way to improve nursing home care. Nursing homes being the only game in town has resulted in a stagnation in care and a decline in standards. Federal inspectors, ombudsmen, individualized plans and yearly expanding funds have not remedied the negligence inherent in the nursing home industry. Time reported in October of 1997 that a study of death certificates in California nursing homes found that over 7% died "in part to utter neglect -- lack of food or water, untreated bedsores, or other greatly preventable ailments." (p. 35) No one wants to live in a nursing home.
It is not necessary to argue the advantages of a market system to Americans. Creative and preferred methods of service will only grow out of a flexible system that can reward quality. This is very evident in Tennessee where the Federal Court has had to close large institutions like the Arlington Developmental Center, near Memphis, because of poor and negligent care.
HOW TO SOLVE THIS PROBLEM IN TENNESSEE
The first simple solution is to waive the institutional middleman and provide the funding to the individual, or agencies that serve them. This is called a Medicaid Waiver and surprisingly, this system is already in place. The requirements to get a waiver are so restrictive, however, that only about half of the 550 possible slots statewide are actually used. Other restrictions make it impossible for someone using the waiver to be employed.
Tennessee needs our Governor to eliminate the restrictions on the waiver, which was designed to move people out of nursing homes in the first place. The waiver should also be made available statewide rather than in just the four largest counties.
MiCASA, HR 2020, is a proposed national legislation that will begin a system of attendant services. Introduced last summer by Newt Gingrich and co-sponsored by Richard Gephardt, the bipartisan legislation is gaining support. Tennessee need not wait for the federal government to take the lead. Alternatives and options like MiCASA need to be adopted now to begin to confront the changing demographic of this country.
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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