By Anita Clavering
American
Disabled for Attendant Programs Today (ADAPT) began its twice-annual conference
in March with a day of testimony titled Real People, Real Voices, where people
with disabilities throughout the nation shared their experiences living in
nursing homes, institutions and other facilities and how they were able to
transition into the community.
The
following day, a three-day ADAPT action began, with chapters across the nation
converging in Nashville, Tenn., requesting a meeting with Gov. Philip Bredesen
(D-Tenn.) to voice support of its Community Choices Act of 2006.
The
testimonies were presented to a panel of leaders from organizations such as the
National Council on Independent Living, ADA Watch, the American Association of
Persons with Disabilities (AAPD), the U.S. Department of Health and Human
Services-Office on Disabilities and the National Council on Disability.
All
who testified spoke about how they were treated or mistreated while in nursing
homes and other facilities. Participants gave examples of their harrowing
experiences, such as nursing home staff leaving them to lie in human waste,
over-medication and physical abuse.
Robert Fesel of New Jersey ADAPT said that he was burned with a
cigarette, and one of his fingers was dead because his wheelchair repeatedly ran
over it, permanently damaging the nerves.
Fesel
uses a power wheelchair and communicates on an electronic language path finder.
“Technology
has opened my life,” said Fesel, who transitioned into the community through
Project Freedom. “I now live in a condominium by myself with my dog.”
The
Community Choices Act, proposed by Tennessee ADAPT, bypasses funding dominated
by the nursing home industry for long-term care, and instead would allocate them
for home and community services.
“The nursing home industry is a big contributor– it is not a
question of money,” said Nancy Salandra of Pennsylvania ADAPT.
More
than 500 ADAPT activists marched on a cold and rainy afternoon from downtown
Nashville to Legislative Plaza in the capital complex. A rally was held on the
steps with a backdrop of guitar-shaped signs symbolizing the “music city.”
ADAPT
Executive Director Bob Kafka said that Tennessee spends $160 on nursing homes,
institutions and other facilities for every one dollar spent on community care.
According to ADAPT, Tennessee is one of the 10 worst states for long-term care
in facilities, rather than in the community
At
the rally, Johnny Crescendo of Pennsylvania ADAPT sang “Tear Down the Walls
(of the Nursing Home)” and “Because You Fail, We Go to Jail,” a variation
of Johnny Cash’s “I Walk The Line.
When
they arrived at Legislative Plaza, the activists demanded to meet with Bredesen.
Chants of “I’d Rather Go to Jail than Die in a Nursing Home” and “Up
with Attendant Care, Down with Nursing Homes” rang out. Banners were hung on
an overpass, stating “Tennessee: Volunteer State or Institution State?”
“It
is a sad day that this is happening in Tennessee,” said Sen. Steven Cohen (D-Tenn.),
cosponsor of the Community Choice Act. “There’s no question that people want
to stay at home and are better served at home.”
As
the action continued, activists blocked traffic, as state workers tried to pass
through on their way home. Seven activists, including some who got off their
wheelchairs, climbed the steps of the capital building and were sent to jail.
That
day, more than 60 activists were arrested.
Bredesen
refused to meet with ADAPT and issued a letter stating that the action was a
“publicity stunt” and a “spectacle.”
“Governor
Bredesen should become disabled,” said Roy Carbone, a New Jersey ADAPT
activist. “When he calls for a nurse, I hope they’ll never answer the bell.
He’ll realize why we protested this way. All we asked is to have a simple
meeting, and he [Bredesen] would not accommodate that, so we had to do it the
hard way.”
On
the final day of the protest, 100 activists rode to the Metro Center and stood
outside the offices of TennCare, the state’s Medicaid program. According to
ADAPT, cuts by TennCare have forced people with disabilities into facilities.
ADAPT members were able to meet with representatives of TennCare to discuss
implementing funding for longterm care in community settings.
ADAPT
members then stood outside the local office of Housing and Urban Development
(HUD), demanding a meeting with Director William Dirl. After an hour, Dirl met
with ADAPT and discussed providing more affordable housing and vouchers for
people with disabilities transitioning into the community.
ADAPT
presented a letter to Dirl for HUD Secretary Alphonso Jackson to comply with
certain demands, which are to improve timing and coordination of affordable,
accessible, integrated housing with the receipt of home and community-based
services; facilitate rebalancing of the long-term care system; implement goals
of the New Freedom Initiative; and assist states in implementing the Supreme
Court’s Olmstead decision.