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• Vol. 6 No. 1 WINTER 2000
• Vol. 6 No. 2 SPRING 2000
• Vol. 6 No. 3 SUMMER 2000
• Vol. 6 No. 4 FALL 2000

Inside this issue:
 
 

MiCASSA
Ride the Bus
PALs Talent Show
Advocate of the year
MCIL Staff e-mail addresses
Curb-ramps

Our legislators need to know how important choice is to Americans with disabilities. The vast nursing home lobby is working to take away your choice and keep public funding flowing into facilities. Without your voice, the money of these large institutions will influence our representatives.

MiCASSA needs your voice

Across America millions of people with disabilities are trapped in institutions, and millions more are struggling to stay out of nursing homes. We need choice! Add your voice to those calling for change in long-term care. Read the highlights of Sen. Harkin's speech entitled HIGHLIGHTS OF MiCASSA.

Mr. President. Today, along with Senator Arlen Specter, I am introducing the Medicaid Community Attendant Services and Supports Act. Our bill allows people to have a real choice about where they receive certain types of Medicaid long-term services and supports.

We all know that given a real choice, most Americans who need long term services and supports would rather remain in their own homes and communities than go to a nursing home. Older people want to stay in their homes; parents want to keep their children with disabilities close by; and adults with disabilities want to live in the community.

And yet, even though many people prefer home and community services and supports, our current long-term care program favors institutional programs. Under our current Medicaid system, a person has a right to the most expensive form of care, a nursing home bed, because nursing home care is an entitlement. But if that same person wants to live in the community, he or she is likely to encounter a lack of available services, because community services are optional under Medicaid. The deck is stacked against community living, and the purpose of our bill is to level the playing field and give people a real choice.

Our bill would allow any person entitled to medical assistance in a nursing facility or an intermediate care facility to use the money for community attendant services and supports. Those services and supports include help with eating, bathing, grooming, toileting, transferring in and out of a wheelchair, meal planning and preparation, shopping, household chores, using the telephone, participating in the community, and health-related functions like taking pills, bowel and bladder care, and tube feeding. In short, personal assistance services and supports help people do tasks that they would do themselves, if they did not have a disability.

Personal assistance services and supports are the lowest-cost and most consumer friendly services in the long-term care spectrum. They can be provided by a variety of people, including friends and neighbors of the recipient. In many instances, with supervision, the consumer can direct his or her own care and manage his or her own attendants. This cuts down on expensive administrative overhead and the current practice of relying on medical personnel such as nurses to coordinate a person's care. States can save money and redirect medically-oriented care to those who need it most.

Not only is home and community-based care what people want, it can also be far less expensive. There is a wide variation in the cost of supporting people with disabilities in the community because individuals have different levels of need. But, for the average person, the annual cost of home and community based services is less than one-half the average cost of institutional care. In 1997, Medicaid spent $56 billion on long term care. Out of that $56 billion, $42.5 billion was spent on nursing home and institutional care. This paid for a little over 1 million people. In comparison, only $13.5 billion was spent on home and community-based care -but this money paid for almost 2 million people. Community services make sound, economic sense.

The States have realized that community based care is both popular and cost effective, and personal assistance services and supports are a key component of a successful program.
…

 In a common sense decision last June, the Supreme Court found that, to the extent Medicaid dollars are used to pay for a person's long term care, that person has a right to receive those services in the most integrated setting. States must take practical steps to avoid unjustified institutionalization by offering individuals with disabilities the supports they need to live in the community. We in Congress have a responsibility to help States meet the financial costs associated with serving people with disabilities that want to leave institutions and live in the community, and the bill I am introducing will provide that help.
…

 But they all have one thing in common with every American. We all deserve to live in our own homes, and be an integral part of our families, our neighborhoods, our communities.

Six advocates from Memphis ADAPT made the trip to Ohio to bring awareness to the crisis of long-term care in America. ADAPT stands out in Tennessee among the groups demanding long-term care reform because ADAPT has a positive proven plan for effective modernization of Medicaid. It is time Americans had REAL CHOICE in long-term care.

Call ADAPT of Memphis to find out how you can help advance REAL CHOICE for Americans in long-term care. 726-6404

This is your official Invitation
to the 1999 MCIL Holiday Open House Friday, December 17th Drop by any time, from 4 to 7 p.m. 1633 Madison Avenue. R.S.V.P. 726-6404 or e-mail to judy@mcil.org

Pat Jessup is the PALs Coordinator.

BFMS is determined to make sure Transportation works for all Americans. If you have concerns with transportation, join the BFMS monthly meetings at the center at 3:00 p.m. on the first Monday of each month. The next meeting is January 3, 2000.

The Advocacy Award is important to Independent Living because of the significant role Ed Roberts, founder of the Independent Living Movement, gave to advocacy. When he was asked what the role of a Center for Independent Living should be: "Advocacy, advocacy and advocacy," replied Roberts. "But not necessarily in that order."

Board member Betty Anderson accepted the award for MCIL. Ms. Eileen Loh-Harrist, author of the article Bound in Red Tape about long-term care in Tennessee, won the Media Award. Dr. Carol Greenwald was credited for her dedication to improving our community with the Elizabeth Boggs Award.

Would you like The Declaration! In an alternate format? Call the Editor: (901) 726-6404

Deborah Cunningham, the Executive Director of The Memphis Center for Independent Living, was suspended from using MATAplus because she refused to exit the bus facing backward.  Actually, Federal Law requires that the bus be safe to exit both forward and backward, and it is much safer for some individuals to face forward getting off the bus.

When questioned about this so-called "safety policy," MATA executive management admitted that no safety investigation was made.  In fact, the only examples of accidents MATA executives could recall were from riders exiting backward.  MATA furthermore confessed that no professional was consulted and they had made no attempt to find out what effect the "backwards policy" would have.

Ms. Cunningham's MATAplus service was quickly restored.  But MCIL got a chance to take a closer look at the situation and found that "safety" was of no concern to MATA.

• Many of the MATAplus bus ramps are too short.  When a short ramp is deployed, it makes it dangerously steep for a wheelchair user.
• Most of the MATAplus vehicles do not have required RAMP BARRIERS.  A Ramp Barrier is the 2-inch obstacle that prevents the wheels of a wheelchair from falling off the side of the ramp.
• Made aware of the safety problems MATA EXECUTIVE STAFF HAS DONE NOTHING!

MATA executives are further ducking responsibility by having no one in charge of MATAplus.  MATA claims that MATAplus is a separate and independent division at MATA, yet there is no "director."  The MATA executive staff lists two General Managers, eight Directors, and a Deputy Director; no one listed is responsible for MATAplus.  Oddly, the title of Director of MATAplus vanished around the same time MATA learned that the Federal Transit Administration was investigating the system.

The Cook Convention Center
April 14, 2000
Don't miss HOUSING ISSUES FOR PEOPLE WITH DISABILITIES AND THEIR FAMLIES at 2:00 With Deborah Cunningham and Dr. Greenwald.

Register to VOTE now for the November 7, 2000 General Election

Are you currently registered to vote?
Call 545-2600 to find out:
· if you are registered
· your polling location
· what precinct and district you are in

A study by the Disability Research Consortium, and Rutgers University found that people with disabilities were less likely to vote.  "If people with disabilities voted at the same rate as those without disabilities, there would have been 4,600,000 additional voters in 1998," said the report.

Have you heard about MiCASSA?

MiCASSA, S. 1935, is the most significant national legislation for people with disabilities since the 1990 Americans with Disabilities Act.  MiCASSA, the Medicaid Community Attendants Services and Supports Act, is important to citizens of Tennessee because our state ranks dead last in providing alternatives to institutions.

People with disabilities want choices in long-term care, are concerned that 95% of the Federal Medicaid money for our long-term care in Tennessee funds the most inefficient and least desirable alternative.  MiCASSA, S. 1935, can change that by giving Americans choice. MiCASSA was introduced in the U.S. Congress by Senator Harkin and has a bill number of S. 1935.

You can help.  Call Tennessee Senators Frist and Thompson and tell them we need MiCASSA.

• Bill Frist 683-1910

• Fred Thompson 544-4224

Ask your senator to co-sponsor MiCASSA, S. 1935.

Right now the state legislature is considering the
Tennessee Americans with Disabilities Act of 2000 SB3060 / HB3093

This bill would enact the "Tennessee Americans with Disabilities Act of 2000," and create the office of Tennessee Americans with Disabilities Act Compliance within the Tennessee human rights commission.

Under this bill, the compliance office would:
(1) Account for the Tennessee Americans with Disabilities Act;
(2) Serve as an informational clearinghouse on compliance of this bill;
(3) Operate a toll-free telephone line for Tennessee Americans with Disabilities Act-related assistance; and
(4) Provide an ombudsman program.

This bill would require the Tennessee human rights commission to:
(1) Adopt rules to govern the administration of the compliance office;
(2) Promote voluntary compliance with, and resolution of compliance issues under the American with Disabilities Act of 1990 (ADA) under federal law; and
(3) Designate at least one person, having extensive knowledge of the ADA to serve as the statewide Tennessee Americans with Disabilities Act clearinghouse coordinator.

The clearinghouse coordinator would be responsible for providing information on all aspects of Tennessee Americans with Disabilities Act compliance including, but not limited to:
(1) Providing information to persons with disabilities concerning the availability of programs and services within the state and the appropriate federal, state, or local departments or offices to contact for additional information;
(2) Providing information to businesses and state and local officials concerning what may or may not constitute a reasonable accommodation as required by the Tennessee Americans with Disabilities Act, as well as building accessibility and program accessibility compliance; and
(3) Developing promotional activities to further inform public officials, the business community and the general public concerning Tennessee Americans with Disabilities Act compliance including, but not limited to, press releases, posters, speeches, and public service announcements on radio and television.

Under this bill, the ombudsman program would consist of at least one person, having extensive knowledge of the Americans with Disabilities Act, who would be responsible for coordinating, training, and supervising paid staff and volunteers who assist in resolution of problems between persons with disabilities and entities subject to the ADA.

This bill would require the ombudsman to certify trained representatives of the office as long as the volunteers are not considered to be state employees. The compliance office would maintain a current listing of certified representatives. Certified representatives would be immune from liability for acts or omissions committed within the scope of their assigned duties, except for willful, malicious, or criminal acts or omissions or for acts or omissions done for personal gain.

This bill would require each state governmental entity, subject to the requirements and regulations of the ADA, to:
(1) Develop an ADA implementation plan with participation by protected beneficiaries as required by the law or regulations;
(2) Submit annual ADA compliance reports and implementation plan updates to the department of audit by June 30, 2001, and each June thereafter;
(3) Conduct an amended self-assessment, which would be completed and distributed with the annual report due on June 30, 2001; and
(4) Conspicuously post a notice regarding the Tennessee Americans with Disabilities Act compliance office, together with its location and the toll-free numbers maintained by the compliance office.

This bill would require, to the extent practicable, that county and municipal plans include ADA implementation plans for any subrecipients of federal funds through the state entity.

This bill would require the department of audit to publish a cumulative report at least once a year. The report would demonstrate the department's findings and recommendations concerning compliance with the requirements of this bill. The report would be distributed to the compliance office, the governor, each member of the general assembly, and each library designated as a depository of state reports and documents.

Under this bill, a copy of municipal and county personnel policies that contain compliance procedures under the ADA would be sent to the compliance office. NOTE: Section 4 of this bill refers to "the commissioner"; this bill should refer instead to "the commission" or "the commissioners."

Demand appropriate services

Recently the Supreme Court of the United States interpreted Title II of the 1990 Americans with Disabilities Act in the Olmstead decision, which obligate States to administer their services, programs, and activities "in the most integrated setting appropriate to the needs of qualified individuals with disabilities."

Many Tennesseans are eligible for services, but Tennessee is not providing them in the most "integrated setting" appropriate.  If you need services at home, call the Tennessee Department of Health (901) 423-6454.

If the Tennessee Department of Health does not take immediate action, call us here at MCIL 726-6404 and we will help you complain directly to the U.S. Department of Health and Human Services.

MCIL's New Staff

Please come meet the new staff at MCIL:

Erika Williams,
Independent Living Specialist - Special Projects - part time

Sandi Klink,
Personal and Administrative Assistant - part time

Berenese B. Canady,
Personal and Administrative Assistant - part time

Joy White,
Receptionist - part time

PALs Theater

The PALs are currently producing a new play, and rehearsals have started at MCIL.  Information on the performance place and time will be coming soon. Pat Jessup is the coordinator of PALs.

Inside this issue:
 
 

• Ten Years of the ADA
  
• Senator Bill Frist Meets with ADAPT at MCIL
  
• The Kidnapping of Shannon Brown
  
• ADAPT Action Report

Inside this issue:
 
 

• Visitability, Smart accessibility for new family homes

• ADAPT focuses on Civil Rights

• HotBraille

• The Rolling Freedom Express makes a stop in Tennessee

• The Barrier Free Memphis Society - Making a difference in our community

.

Visitability, Smart accessibility for new family homes Visitability is the idea that people with mobility impairments should at least be able to get in to houses, even if they are not built to be fully accessible. New homes can be designed at little or no cost to be "visitable" so that a friend or family member can visit without depending on assistance with steps and the fear of an inaccessible bathroom. The essential focus of Visitability is to provide a "no step" entrance into a home and wide enough doorways and halls for someone in a wheelchair to get around. Although the most common building technique for new homes is "slab" foundations, witch are level with the ground, homes will often include steps. Universal design techniques can make homes more accessible at no cost or minimal expense and the homes will be accessible to a wider number of buyers. Eleanor Smith started an international effort called Concrete Change to advance the idea of including everyone and make all homes visitable. The Memphis Center for Independent Living brought Ms. Smith to Memphis on September 29th to speak about Visitability to our consumers and officials working on the Memphis Fair Housing Ordinance. The Memphis City Council will consider a Fair Housing Ordinance this winter. Atlanta Georgia, where Eleanor Smith is from, has had a Visibility Ordinance for 10 years. All the homes in Atlanta built with public funds, or that receive a tax break from the city must be Visitable. They have found that in most cases Visitability adds less than $200 to the cost of a new home. Call and ask your City Council representative to support Visitability. The number for the Memphis City Council is 576-6786. ADAPT focuses on Civil Rights "We are facing an attack on the 1990 Americans with Disabilities Act (ADA)," said ADAPT Activist Kyle Glozier, "and I am angry about it." Mr. Glozier was referring to Alabama v. Garrett, testing the power of Congress to pass the ADA. The U.S. Supreme Court will make a ruling in Garrett next spring. ADAPT is also concerned about the nursing home industry begging for more government handouts and U.S. states compliance with the Supreme Court ruling in Olmstead. States like Tennessee must have a "comprehensive effectively working plan" that not only gets people out of nursing homes, but also stops people from going in to start with. "States check out a person's financial eligibility and their medical need when they go into a nursing home," said Steve Gold of ADAPT, "what they need to ask is 'what do you need to get out?'" ADAPT was in Washington DC October 2 - 5 to stop the one billion dollars the Clinton Administration was considering giving to the nursing home industry. The billion dollars from the federal government will end up coming out of the waiver programs on a state level and the result would be fewer community options for citizens. Five hundred ADAPT members, many chained to the White House fence, demanded the Administration consider a more reasonable offer that would also benefit personal care attendants that work in the community. The President's Chief of Staff, John Podesta, canceled his normal schedule to meet with ADAPT and the President of the United States agreed to meet with ADAPT concerning the billion dollar handout to the nursing home industry later this year. The next day following a rally near the U.S. Capitol, ADAPT shut down the Republican National Committee Headquarters by blocking the exits of the building. The Republicans had promised an ADAPT speaker at the Philadelphia Convention and "Real Choice" language in the party platform, but the Republicans broke both promises. To mend fences with people with disabilities, ADAPT asked that the Republicans sign the pledge to preserve the ADA and to meet with ADAPT before November 7th. The Republicans held-out; they cancelled a posh fundraiser scheduled that night to make a stand against civil rights for persons with disabilities. Because ADAPT was willing to stay all night and beyond, the police made a resolute well-planned move. Bringing in reinforcements of approximately 30 more officers, buses and a dozen vehicles. The police came in quickly with a "siren show" and rushed the north entrance at 8:30 and by 8:45 Republicans were streaming out their single open entrance. Because of the decisive move of the Metro police, ADAPT was surrounding an empty building. The Republican National Committee, however, lost the opportunity to sway the votes of 54 million Americans with disabilities, they had lost the opportunity to show that the Republican Party is really the party of inclusion and they lost the opportunity to get ADAPT off their backs for a while. The next day, ADAPT could not pass up the chance to work for the most important legislation for people with disabilities since the 1990 Americans with Disabilities Act: MiCASSA. The bill, fashioned by ADAPT has improved with the input of various groups since it was originally introduced by Newt Gingrich in 1997. The Medicaid Community Attendants Services and Supports Act (MiCASSA) will be a strong piece of legislation when it is introduced at the beginning of the next session; however, one of the major players in the arena of long-term care has not made a commitment to the bill. The American Association of Retired Persons (AARP) is still straddling the fence over endorsement of MiCASSA. ADAPT is also waiting for the AARP's encouragement for full implementation of Olmstead. The AARP's 34 million members need to know that they have a Constitutional right to live in their home or the community rather than inappropriate institutional placement. The AARP agreed to meet with ADAPT in the next 30 days. The agenda will include: the AARP's endorsement of MiCASSA and, support for fully implementing Olmstead. HotBraille By Kevin Lofton What if you have a blind friend or relative who lives in another part of the country? You would love to be able to correspond with that friend or relative but they can't read print and you can't read Braille. Wouldn't it be great if there were a service that would take a short letter and transcribe it into Braille? Wouldn't it be wonderful if that service were absolutely free? Well friends, there is such a service. HotBraille-dot-com on the Internet allows you to type a letter on your computer, have that same letter transcribed into Braille and mailed to anyone you choose. And it's free! It's easy to get started. Just log on to www.hotbraille.com and go to the link that says "sign me up." You'll have to answer some basic demographic questions. Other questions ask if you are blind or visually impaired, but, don't worry anyone may use HotBraille. The HotBraille website is accessible to screen readers so don't worry if you use Jaws or another screen-reading program. There are other features on the HotBraille website, like meeting other HotBraille users who share your interests, but I've never used these features. You will have your own user name and password; however, any demographic information is kept private and confidential. I use HotBraille to send Braille letters to my son who is visually impaired. He lives in Iowa. HotBraille helps us keep in better contact with each other. I hope you enjoy this wonderful service. Kevin Lofton is the Independent Living Specialist for Training and Awareness. His e-mail address is kevin@mcil.org The Rolling Freedom Express makes a stop in Tennessee In order to highlight Americans support for the 1990 Americans with Disabilities Act (ADA) the Rolling Freedom Express made a nine-city bus tour ending at the U.S. Supreme Court. People with disabilities are concerned by the Supreme Court case Alabama v. Garrett because U.S. state governments are questioning the power of Congress to pass the ADA. The states argue that Congress overlooked the states authority to protect citizens' rights when they passed the bipartisan civil rights law. Yet states have a poor record in protecting individual human rights, particularly in Tennessee, where compulsory institutionalization and ongoing segregation of persons with disabilities is common. Tennessee is one of the states that support Alabama's position that the ADA is unconstitutional. "The ADA is under attack and could be weakened or lost!" said Paul Ford of Tennessee ADAPT, "the Rolling Freedom Express brings us the message that our advocacy must continue and it must be powerful." The Tennessee rally was held at the Bicentennial Mall in downtown Nashville. "I was at the Rose Garden the day the President signed the ADA," said Barbara Bounds of Memphis ADAPT who spoke at the rally, "I don't want to see those rights taken away." Beginning in Birmingham Alabama the tour visited Atlanta, Nashville, Louisville, Columbus, Pittsburgh, Harrisburg, Philadelphia, Baltimore and ended with a rally at the U.S. Supreme Court steps. The Barrier Free Memphis Society - Making a difference in our community This year Barrier Free has seen two long-term goals met. First, MATAplus has finally published a Rider's Guide. Secondly, a person with a disability has been appointed to the MATA board of Commissioners. BFMS has also helped stop the huge fare increase on MATAplus, generated a Federal investigation of MATA, ended MATA's ridiculous "backwards policy" and hosted a conversation with two state representatives on long-term care in Tennessee. The next meeting on November 6th will introduce Cliffie Pugh the newest member of the MATA board, who was featured on the front page of the Commercial Appeal [10-16]. There is no cost and anyone can join the Barrier Free Memphis Society. Meetings are on the first Monday of each month, 3:00 at MCIL.

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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