• Vol. 8 No. 1 SPRING 2002 This newsletter is provided in Adobe "pdf" format
• Vol. 8 No. 2 SUMMER 2002  This newsletter is in a web format

MEMPHIS CENTER For INDEPENDENT LIVING MCIL is a community based non-profit organization whose primary mission is to facilitate the full integration of persons with disabilities into all aspects of civic life.

On July 22, an accessible MATA bus driver drove right past two motorized chair-users who were waiting at a bus stop, in the Cooper-Young district, for their trip home.

Big mistake.

Before long, there were police cars, blocked vehicles and embarrassing media coverage that enabled everyone to see the sad truth and flaws in MATA’s policies and operational procedures. MATA supervisors and drivers engaged in dubious and underhanded shenanigans revealing that, in regard to people with disabilities, there are still attitudinal barriers, as well as physical ones.

Apparently, everything started because the driver did not want to be bothered with the process of loading and securing two people who use wheelchairs. The bus driver simply decided to drive right past the patrons at the bus stop. It was an act of blatant discrimination based on a disability. Actually, that was only the driver’s first mistake.

The second mistake that the driver made was to not recognize Renee Ford and Deborah Cunningham, who are two of the most dedicated (some would say, “rabid”) ADAPT activists that Memphis has ever seen. Renee and Deborah were not amused. When the next bus (an inaccessible one) came up, they wheeled out into the street and blocked it. After that, they would not move; therefore, the bus could not move. Soon a supervisor arrived and the street was swamped with police cars. Nobody moved.

An accessible MATA vehicle finally arrived at the scene. When Deborah and Renee moved away from the bus to board the accessible van, the supervisor waved it away.

Even the police officers were astonished by the sheer audacity of the supervisor’s mean-spirited act. They were even more amazed by the pure stupidity of it. 

No problem. 

Renee and Deborah simply decided to block the supervisor’s van. Until another accessible vehicle was sent to transport the advocates. Nobody moved. It took nearly six hours for Deborah and Renee to get to their destination, but they won that “round.” Following separate action blocking more vehicles, an “investigation into the matter,” found that disciplinary action would be taken against the responsible parties.

-rm 

400,000 people who have TennCare must apply again. You may be one of them. Contact the following number to be sure you are still eligible: 
The TennCare Consumer Advocacy Program 1-800-525-0344

There is a new face at the Memphis Center for Independent Living. 

Pamela Martin joined the MCIL staff in early August as the Peer Outreach Program coordinator. This new program provides peer support to individuals who are seeking independence.

“Peer support can be a vital part of the independent living process,” states Ms. Martin. “It always helps to know you are not alone in your struggles or your triumphs.” 

Through this program, a person who is seeking independence can see first-hand how it is done. Persons, who are living in institutions, or those who simply want to learn to be more self-sufficient, will be partnered with peers who are already living on their own. The peers will act as role models. They will offer support and encouragement and will share their life experiences.

Peers of all ages and backgrounds are encouraged to participate in the program. Only those who have lived with their disability for at least four years, however, will be matched with a participant. Interested parties must fill out an application. Once accepted as a peer mentor, several training sessions are required before a match is made.

The only qualification for a participant is a desire for greater independence. Each participant will set goals and work closely with a peer to achieve those goals. 

For more information on the Peer Outreach Program, call Pamela Martin at the Center. She can also be reached through email at pamela@mcil.org.

The West Tennessee Olmstead Coalition held a town hall meeting at the new Memphis Shelby County Public Library on Poplar Avenue. It was called to raise awareness (with Tennessee legislators) of the State’s obligation to respond to mandates set by the Olmstead Decision.

Attorney Gary Housepian was there to give an overview of the Olmstead Decision. He explained how it resulted from a lawsuit filed on behalf of two individuals. They were forced to live in an institution, because of a discriminatory health care system in the state of Georgia would not make it possible for them to live on their own. 

He related how the United States Supreme Court ruled that states must provide alternatives to institutions, such as nursing homes. The Court ruled that states were obligated to provide health care services that would make it possible for individuals with disabilities, who required long term care or assistance, to live in their own homes.

Tennessee has failed to respond to the Supreme Court’s ruling in any meaningful way. The most obvious reason is because of the nursing home industry, and the money it makes by institutionalizing as many people as it can. The nursing home industry, obviously, has a strong lobby and has had the ears and the loyalties of politicians who were charged with the responsibility of developing long-term care policies for the state. 

Only one legislator responded to an invitation to participate in the town hall meeting. Representative Joe Towns, Jr. was present to hear moving and sometimes graphic testimonials from a number of Memphis citizens. Francis Utilla, Carol Knox, Tena Murphy, and Harry Calder related stories that described their own battles with a system that is determined to profit from their forced institutionalization. Although all of the testimonials reflected wills to be free, determination and victories, so did one present a grim reminder that many Tennesseans with disabilities are still imprisoned in nursing homes, because of the State’s refusal to properly respond to a Supreme Court decision. Representative Towns heard the stories, he felt the outrage, and he had a chance to understand the pain.

The Coalition, which is made up of several community organizations, including Aging Commission of the Mid-South, Tennessee Protection and Advocacy, Mid-South Arc and Memphis Center for Independent Living, were there to interact with all who attended the meeting. The lack of response from other legislators was a stinging wake-up call for the coalition to find more effective methods of communication. 

Representative Towns honestly admitted that he knew nothing of Olmstead. He has expressed a desire to learn, and to help find ways of getting legislation started, which would make funding for community-based care a reality. He suggested ways of communicating with the other legislators that could evoke more of a response, and possibly set them on the way to meaningful actions that would insure that the State complies with the Supreme Court and meets the standards as presented by the Olmstead Decision.

-rm

(Memphis, September 10) A political forum was held at the Memphis Center for Independent Living to allow politicians an opportunity to meet and speak to a group of potential supporters. Various candidates and incumbents responded to an invitation that offered each of them an opportunity to present their ideas and platforms. Each candidate had been allotted five minutes to speak on any subject. The speakers ranged from gubernatorial candidates to school board members. Predictably, candidates spoke about their interests. School board candidates spoke of children’s needs in the local school system, while gubernatorial candidates spoke of tax issues and health care concerns.

Some of the speakers chose to tailor their speech for the audience, which was mostly comprised of people with disabilities. Others chose to address general issues that would concern anyone. For some, it was an impromptu lesson in disability etiquette, as they found themselves addressing an audience that was patient, but potentially critical.

The audience appreciated those speakers who had done a little homework, and were able to address issues that were of particular interest to people with disabilities. The crowd also was appreciative of the speakers who saw them as people first. Although little was mentioned about specifics, such as MiCASSA, or Olmstead, or other ADA- related matters, it was obvious that some of the speakers left with the intention of researching these issues. The forum proved to be stimulating and thought provoking for the audience and the speakers.

A false alarm has raised questions about a potentially deadly problem at the Peabody Hotel, and possibly, the whole Peabody Place complex. During a presentation ceremony hosted by United Way of the Mid South, the evacuation alarm was activated. When everyone in the second floor ballroom realized that indeed, the alarm was sounding, they all began to leave in a remarkably (and admirably) calm and civilized fashion. The assembly proceeded out into the hallways, down the stairways and outside to safety.

Ms. Suzanne Colsey and her co-worker (the writer of this essay) were soon facing a horrifying dilemma. Immediately upon entering the hallway, they realized that there were no ramps that led out, and that there were only stairs. Ms. Colsey, who uses a power wheelchair, had come by elevator to the floor, and understandably, no one was attempting to ride the elevators down. No posted evacuation maps could be seen, and several hotel employees were unable to provide directions for an accessible route out of the building. Some staff tried to help, but they were unable to do so.

Ms. Colsey and her co-worker had to quickly find an accessible route out. The writer began to recall segments of a long, convoluted journey from a parking garage that he had taken when he arrived at the hotel that morning. He recalled ramps, elevators and doors. Immediately, they began to backtrack the way that he recalled. Soon, they came upon hotel employees who were all pointing toward the exit. 

Ms. Colsey and the writer proceeded until they saw a set of doors that led to the outside, but there was a final set of steps, and no ramp. It was only a few steps, but impossible for a power chair. There was a two-way elevator there, and it was set to travel only a few feet up and down. Its purpose was obvious. After testing the elevator a couple of times by sending the empty car up and back down, they decided to risk the trip down. Upon emerging from the elevator and exiting the building, Ms. Colsey and the writer found themselves in a crowd of people in what must have been an enclosed pick-up area. Attempts to proceed further were thwarted by the fact that there were no curb cuts to be seen.

Finally, the ordeal came to an end. An “all clear” was sounded and everyone began to re-enter the building. Ms. Colsey and the writer returned to retrieve their property and soon left, but not without noticing a power chair that had been abandoned by its rider. They hoped and assumed that the rider had been offered the assistance that they had not. 

In order to avoid this type of fiasco, all hotels should have adequate evacuation plans. These plans should be posted and comply with the ADA. Safety is for everyone. 

-rm

Children and youth with disabilities can join PALs at MCIL. For details, dates and time, contact Pat Jessup at 726-6404

The Memphis Center for Independent Living would like to thank the volunteers from United Way for their wonderful job of refurbishing the restrooms.

Hurricane Lilli Stalls ADAPT Conference

Plans for an ADAPT Action was put on hold because of intense hurricane activity in the southeast region of the country. Members from all across the country were to meet in the city of New Orleans to seek ways to convince legislators to pass MiCASSA, and to implement Olmstead in states where there have been little or no response.

AHCA, the American Health Care Association, will breathe easier because they will not be facing the challenge of the forces of ADAPT. AHCA would rather face hurricanes.

Although members of Memphis ADAPT expressed their disappointments at the turn of events, they understood that the weather was too much of a risk factor. Plans are already being made to launch another ADAPT Action to raise public awareness and support. 

-rm 

MCIL Tech Lab Is Open For Business

Call Suzanne Colsey for individualized computer lessons. If you already have skills and would be willing to mentor others, call Suzanne at 726-6404.

MCIL at Coop-Yo!

Please, allow me to borrow a few phrases from “hip” young people to report that the Cooper-Young Festival was, “off the hook.” There were booths that offered exotic wares that were “smooth;” others offered food that was “kicking.” The music was “slamming.” The weather cooperated by being “cool.”

Thank you.

There were also information booths operated by assorted community organizations wanting to promote their causes. MCIL had a booth with an information display and newly designed T-shirts that sold like, well... 

Please, one more. Thank you.

The shirts are “too cold” and they were moved by super-sales people who were none other than some of our fantastic volunteers, board members, staff members, and members of PALs. Even one certain staff member (who will remain unnamed) managed to sell a couple of shirts and a display balloon.

“Mad love” and “boo-coup” thanks to “all-a- y’all.” Okay, that was more than one. That was “a deuce,” no, “a trey,” eh, “a quarter”...

-rm

MEMPHIS CENTER For INDEPENDENT LIVING MCIL is a community based non-profit organization whose primary mission is to facilitate the full integration of persons with disabilities into all aspects of civic life.

Inside this issue:
	TIME FOR A CHANGE IN TENNESSEE ANNOUNCEMENT! ADAPT's FREE OUR PEOPLE MARCH PALs Presents “The Rest of the Story” Darryl’s Big Move IN MEMORY OF A FRIEND ILP

TIME FOR A CHANGE IN TENNESSEE

March has been a month of opportunities for MCIL to discuss many concerns with State legislators. Consumers and staff have presented issues such as Olmstead planning, housing and transportation. At a town hall meeting of the Shelby County delegation (which was held at the National Civil Rights Museum) a packet was given to each member present, which included the Olmstead Position Paper (compiled by the TN Olmstead Coalition), an article regarding People First Language, MCIL brochures and an article about Rider 37. Each of these items were designed to give each of our delegates a starting point of reference to work with, while working on behalf of people with disabilities across the state to obtain choice and true community integration. The Olmstead Position Paper gives an overview of this important Supreme Court decision upholding Title II of the ADA which mandates that a state must administer its programs in the most integrated setting appropriate to the needs of individuals with disabilities and that unjustified isolation is properly regarded as discrimination. This paper outlines steps each state must take to demonstrate and establish compliance. A meeting with the Governor is being planned to present this plan and Rider 37, which is a budget line item used effectively in Texas to have the “money follow the person”.

The Shelby county town hall meeting has given us the chance to continue getting the word out to our legislators. 

Participation in Legislative Awareness Day (sponsored by the Arc of Tennessee) was our next opportunity to “meet and greet” the legislators. Harry Calder, Sam Ware and Betty Anderson, along with Michael Heinrich, Sandi Klink and Kevin Lofton used the time in Nashville well, communicating the urgency of the need for Olmstead implementation as Harry currently resides in a Memphis Nursing home; Sam and Betty are also at risk. It was also stressed to the legislators that anyone can join this minority group at any time and everyone deserves the right to choose where they live and receive services. Rep. Mike Kernell and Rep. Carol Chumney have been very responsive to our issues. Rep. Kernell has urged a meeting with Governor Bredesen within the next 3 weeks to push Rider 37 for the budget plan in progress. It is hoped that with this new Governor there will be a greater opportunity for understanding that nursing home incarceration is much more costly than home and community based services!

MCIL continues to take every chance to make sure that our legislators keep the issues of people with disabilities in the forefront. A presentation was made at a breakfast (sponsored by Rep. Chumney) prior to the Shelby county Democratic caucus, and representatives will be at Germantown City Hall for another round of Shelby County delegation town hall meetings. MCIL will continue to take every opportunity to testify to our policy makers the needs and civil rights of every citizen.

Do you want to live in a nursing home? Neither do we!

-sk

ANNOUNCEMENT!

Pamela Martin has a new position at the Center for Independent Living. On March 17, Pamela joined Hope Johnson as an additional Social Security Benefits Specialist. In this position, she will inform consumers and agencies about the Ticket to Work Program and other Social Security work incentives. You can reach Pamela at (901) 726-6404 or through her new email address, pamela_m@tndisability.org

ADAPT’s Free Our People March 

September 4-17, 2003
F R E E    O U R    P E O P L E

Do you want to be forced into a nursing home?
Freeourpeople.org is your Internet link to ADAPT’s historic march from the Liberty Bell to Capitol Hill. A fourteen day march from Philadelphia, 144 miles to Washington DC in support of MiCASSA and to demand an end to Medicaid’s institutional bias that locks away Americans with disabilities. Free Our People!

ADAPT is the leading direct action organization for the civil rights of Americans with disabilities. Americans with disabilities are demanding an end to the bias system that forces people into institutions and nursing homes. Nursing homes are the most expensive and least desirable form of long-term care, yet they are required by federal Medicaid policy in every state. 

ADAPT! FREE OUR PEOPLE, NOW!

Home and community based programs are a reasonable proven alternative to institutional internment. Locked away and out of sight no longer, many Americans have fought their way out of the revolting institutional system to insist that all Americans are given REAL choices, that Congress pass MiCASSA and that current lawmakers make amend for the STOLEN LIVES locked away by a bigoted and bankrupt Medicaid policy. Free Our People!

At the Freeourpeople.org website you may find information about the march, how to participate and how to help in this historic march. There will be updated information on MiCASSA and ADAPT’s STOLEN LIVES Campaign. Finally, you will be able to follow the marchers all the way from Philadelphia to Washington DC with photos, news and commentary directly from the marchers.

PALs Presents “The Rest of the Story”

We request your attendance at Center Stage’s performance of
“The Rest of the Story”
7:00 p.m., Thursday, April 3, 2003
Blount Auditorium, Rhodes College
Admission Is Free
Reception Following)

Darryl’s Big Move

On February 25 Darryl Williams claimed his freedom by becoming the twelfth person to escape from the restrictions of Tennessee to independence in Colorado.

Darryl acquired his disability in 1991 when an angry motorist shot him in the neck. “I honestly thought the doctors would fix it and everything would go back to normal.” Instead, he was faced with a new life in a state where someone with a disability is often stored away in an institution.

Fortunately, Darryl was never forced into such a situation. However, due to a lack of personal care, most of his days were spent in bed, looking at life through his window.

Darryl had been working toward the move for a number of years. “I first heard of the possibilities from Deborah (Cunningham) back in 1998.” However, once he got started, things moved quickly. His first step was to contact PASCO, a home health agency in Denver. After filling out the paperwork, he only had to wait for an apartment and services to open up. 

Denver is a stop on MCIL’s and ADAPT’s underground railroad. The railroad first came into existence in the early nineties as a way for people living in restrictive environments to gain independence. Since Tennessee has refused home and community based services to these individuals, their best option has been to leave the state.

Darryl received donations from ADAPT and MCIL to help cover the moving costs, but the initiative was all his. We wish Darryl all the best. If you are currently in an institution or at risk of going into one and would like to know more about leaving the state, contact MCIL at 726-6404 or mcil@mcil.org.

-pm 

IN MEMORY OF A FRIEND

Robert Osborn (1952-2003)

After graduation from Memphis State University, where he earned an undergraduate degree in Graphics Arts and developed proficiency using personal computers, Robert joined the MCIL as a VISTA worker in 1991. He put to use the skills learned at MSU as editor of MCIL’S newsletter, the Declaration, and Center librarian. Robert looked forward to finding a permanent full time employment position after his year of VISTA service, which was limited to one year by the regulations then in place. During this time he lived independently in Whitehaven and used MATAplus for community mobility.

Over time, Robert employed a number of strategies to maintain an independence lifestyle, and began to rely on both friends and family to provide some personal assistance to that end. However, then as now, meaningful resources for personal attendant care did not exist in Tennessee outside of institutions. Facing the bleak prospect of being forced into a Tennessee nursing home, Robert developed a relationship with the CIL in Colorado Springs. The state of Colorado offered it’s citizens more choice and control over their lives than that available in Tennessee. Robert valued his independence, and rather than submitting to the institutional bias of Tennessee, he moved to Colorado where the necessary personal care resources to continue living in the community were available.

Then, several years ago, Robert’s health took a turn for the worse, and he decided to return to Tennessee, sacrificing the independence he had been able to maintain in that other state. The lack of options forced him to live in a nursing home.

One evening last fall, as Robert was heading out for a night at the movies, he was struck in a crosswalk by an automobile. The injuries sustained in this accident resulted in a hospital stay, and then eventually the loss of his room at the nursing home. Upon release from the hospital, he was transferred to a nursing home in Minden, Louisiana and later died in a hospital in Shreveport, LA.

Robert Osborn, rest in peace.

sc/mh 

ILP

What does this acronym means?
Independent Living Plans are road maps or goals you and one of MCIL’s Independent Living Specialists set and work on. Would an ILP help you maintain your Independence? 
Call us today and plan for tomorrow.
726-6404