[blind-democracy] Re: New Law Could Force States to Let People With Disabilities Live Independent Lives

  • From: "joe harcz Comcast" <joeharcz@xxxxxxxxxxx>
  • To: <blind-democracy@xxxxxxxxxxxxx>
  • Date: Wed, 25 May 2016 20:05:24 -0400

What I and others have been fighting for for years.
----- Original Message ----- From: "Miriam Vieni" <miriamvieni@xxxxxxxxxxxxx>
To: <blind-democracy@xxxxxxxxxxxxx>
Sent: Wednesday, May 25, 2016 6:54 PM
Subject: [blind-democracy] New Law Could Force States to Let People With Disabilities Live Independent Lives


New Law Could Force States to Let People With Disabilities Live Independent
Lives
Wednesday, 25 May 2016 00:00 By Kit O'Connell, Truthout | Report
The Disability Integration Act, introduced by Sen. Chuck Schumer of New
York, could force states to prioritize accessible housing and
community-based services instead of nursing homes. (Photo: Dan Nguyen /
ProPublica)
Help Truthout keep publishing stories like this one: We depend on reader
support! Click here to make a tax-deductible donation today.
"A good 75 percent of us were arrested on the first day," says disability
rights activist Danny Saenz, laughing as he recalls a direct action he was
part of in the early 1990s, soon after the passage of the Americans with
Disabilities Act (ADA).
Saenz and other activists with disabilities had traveled to Orlando,
Florida, for the annual convention of the American Health Care Association,
the most powerful nursing home lobbying group in the country.
"We went to their hotel and we took it over, and the whole bunch of us were
rounded up and we spent three days in jail," he told Truthout.
CREATING MORE ACCESSIBLE COMMUNITIES DOESN'T GO FAR ENOUGH UNLESS PEOPLE
WITH DISABILITIES ARE FREE TO LIVE IN THOSE COMMUNITIES.
Saenz has been a member of the disability rights group ADAPT for over 25
years, and that day in Florida was just one of many times he's been arrested
while protesting for civil rights, often after having chained his wheelchair
to other activists.
In our interview, Saenz -- from Austin, Texas -- is genial and soft-spoken,
but he says that at protests, he and his allies are anything but quiet. "Our
chant as we were fixing to get arrested was 'We'd rather go to jail than die
in a nursing home,'" he said.
More than two decades after that protest, hundreds of thousands of people
with disabilities are still in nursing homes, where their movement may be
highly restricted, even when they could be living more independent lives
with the right support from their communities.
After ADA: The Disability Integration Act
ADAPT was instrumental in pressuring the government to pass the ADA. The
group's bus blockades (featuring more arrests for Saenz) helped force public
transit to become accessible nationwide. But creating more accessible
communities doesn't go far enough unless people with disabilities are free
to live in those communities.
The ADA mandates that people receive support services and encourages states
to help people with disabilities live in their communities, but it doesn't
create a clear path to independence. The Disability Integration Act (DIA),
introduced as S. 2427 in December 2015 by Sen. Chuck Schumer (D-New York),
could change that by forcing states to prioritize accessible housing and
community-based services instead of nursing homes.
"It establishes a right to long-term services and support for those of us
that qualify for them," said Jennifer McPhail, an Austin-based community
organizer with ADAPT. "Right now, you don't have a guarantee that it will be
there when you need it."
People with disabilities, particularly those on Medicaid, are largely at the
whim of their local governments, meaning someone with the funding to live in
the community one year might be forced back into an institution during the
next cycle.
"What we're trying to do is level the playing field and give a person a
right to community-based services," McPhail said. Under the DIA, she
explained, people would be free to choose between home-based services and
institutions.
ADAPT's research shows that "overwhelmingly people would choose community"
over living in an institution. A Harris poll conducted in 2010, based around
a previous version of the bill, showed that 84 percent of Americans support
legislation that mandates community services. That number rose to 94 percent
when polling retirees and baby boomers.
The DIA would force states to prioritize community-based services over
nursing homes, but leaves it up to individual state governments to determine
the best way to implement that mandate. Much like the ADA, it creates a path
to enforcement as well, by allowing individuals and attorneys general to sue
over discrimination, as defined by the bill.
The DIA could have far-reaching effects, according to a New York Times
analysis published on May 13:
More than 1.4 million Americans live in nursing homes, but it is hard to
know how many of them could move back home. Federal data suggests that about
155,000 nursing home residents have a low need for round-the-clock
assistance. And about 217,000 people are of working age, another group that
experts say could function well at home. But long-term care experts said
that some residents who are sicker might also be good candidates to leave.
Although the Disability Integration Act is a long way from being enacted, a
coalition of groups, including ADAPT, is lobbying for support on both the
state and national levels and starting to win victories.
On March 31, the Austin City Council became the first city government in the
United States to pass a resolution endorsing the bill. The Democratic Party
in Travis County (where Austin is located) and the El Paso County Democratic
Party have also voiced their support for the bill.
Ann Kitchen, an Austin City Council member, said that the need for the DIA
is growing:
It's particularly important right now, as the baby boom group ages. Some
have called it a "silver tsunami." We need to be prepared; all of our
support services and medical programs need to be prepared to work better.
Emphasizing services in the community is so much more effective.
McPhail agreed that the aging population creates a greater need than ever to
pass the bill. "Who's looking forward to the day that someone makes all your
decisions for you, after you were a part of society?"
However, over the past decade, the number of younger people entering nursing
homes has also risen sharply.
"You Have to Keep Pushing Them"
Texas is one of six states to implement the Community First Choice program
under Medicaid, which creates incentives for offering community-based
services. But even under this system, Saenz and other Texans with
disabilities who are on Medicaid are only able to provide poverty-level
wages to their personal attendants, who assist them with essential everyday
tasks like dressing and bathing. States receive federal funding to pay for
Medicaid, but it's left up to the legislatures to divide those funds between
nursing homes and community services. Saenz's attendants are his employees,
but others operate through agencies.
Saenz said he's constantly worried about losing his attendants to illness or
retirement. Both his regular caregivers are in their 60s. "That's something
I always have in the back of my head; what am I going to do if something
happens?"
Wages for attendants vary a great deal from state to state, but ADAPT
research from 2015 suggested the average attendant in Texas earned about
$8.51 per hour, lower even than other conservative states like Arizona,
where the average wage is $10 per hour. After intense lobbying and protests,
including a May 19, 2015, occupation of the governor's office, the Texas
Legislature grudgingly agreed to raise the base pay for Medicaid-based
attendants from $7.25 to $8 per hour.
With attendants earning wages lower than some fast-food jobs, people with
disabilities constantly struggle to find and keep attendants, even when the
funds are available. Saenz has friends who have been forced into
institutions because they couldn't find sufficient attendants, and another
needed surgery because of injuries sustained from sleeping three to four
nights a week in his wheelchair because he didn't have anyone to help him
get into bed.
As the Fight for $15 campaign spreads across the United States, it's clear
that personal care attendants are an often-overlooked segment of the
workforce. It's not just a labor issue, but also one of gender equality and
racial justice. A 2010 study by the Paraprofessional Healthcare Institute
found that about 52 percent of attendants are people of color, and research
by AARP suggests over 90 percent of the workforce, both in and out of
institutions, are women.
Cathy Cranston, an Austin-based organizer with Personal Attendant Coalition
of Texas, said the DIA would "create a payment structure that would ensure a
sufficient workforce." Under the law, failure to provide enough funding to
pay attendants a competitive wage would be considered a form of
discrimination against people with disabilities.
"Right now, the wages are so low -- we're talking about in Texas but also
across the nation -- [people with disabilities] can't find the attendants,"
she added.
Cranston has worked as a personal attendant for about 35 years. She was
drawn into the field as a student by a program, long since slashed from the
state's budget, which provided room and board, along with a modest monthly
stipend, for personal care workers. "It helped pay my way through college,"
she told Truthout.
Under the DIA, "My life would get a little easier," she said. "I don't get
vacation time; I don't get sick leave, but at least it would help pay for my
health care."
As an experienced worker, Cranston has a position that pays $9.56 per hour.
Many other attendants she knows are single parents, and some depend on
social services to survive. "This would make their lives a heck of a lot
easier," she said. "They could buy their kids shoes and go to the dentist."
With the current Congress notoriously resistant to progressive causes, ADAPT
is left looking to the next election, hoping for a change in the political
landscape that could allow the DIA to pass. Regardless, the Texas-based
attendants plan to demand $13 per hour at the next biennial legislative
session in 2017.
"You have to keep pushing them, that's the only way," Cranston said.
Saenz, meanwhile, finds inspiration from the disability rights movement's
accomplishments.
"Even though I get discouraged from time to time with how much we have to
struggle and fight and protest and get arrested, we've still come a long
way," he said. "We've got to remember that."
Copyright, Truthout. May not be reprinted without permission.
KIT O'CONNELL
Kit O'Connell is a gonzo journalist and radical troublemaker from Austin,
Texas. He's also appeared in The Establishment and MintPress News. Read more
at kitoconnell.com.
RELATED STORIES
Disabled Abandon Wheelchairs, Protest Medicaid Cuts
By Rose Aguilar, Truthout | Report
Disability Advocates, Nursing Home Industry Battle for Health Care Dollars
for Aging, Disabled
By Toshio Meronek, Truthout | Report
The Americans With Disabilities Act Is a Model for the World - Literally
By Janet E. Lord, Foreign Policy in Focus | Report
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New Law Could Force States to Let People With Disabilities Live Independent
Lives
Wednesday, 25 May 2016 00:00 By Kit O'Connell, Truthout | Report
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. The Disability Integration Act, introduced by Sen. Chuck Schumer of
New York, could force states to prioritize accessible housing and
community-based services instead of nursing homes. (Photo: Dan Nguyen /
ProPublica)
. Help Truthout keep publishing stories like this one: We depend on
reader support! Click here to make a tax-deductible donation today.
"A good 75 percent of us were arrested on the first day," says disability
rights activist Danny Saenz, laughing as he recalls a direct action he was
part of in the early 1990s, soon after the passage of the Americans with
Disabilities Act (ADA).
Saenz and other activists with disabilities had traveled to Orlando,
Florida, for the annual convention of the American Health Care Association,
the most powerful nursing home lobbying group in the country.
"We went to their hotel and we took it over, and the whole bunch of us were
rounded up and we spent three days in jail," he told Truthout.
Creating more accessible communities doesn't go far enough unless people
with disabilities are free to live in those communities.
Saenz has been a member of the disability rights group ADAPT for over 25
years, and that day in Florida was just one of many times he's been arrested
while protesting for civil rights, often after having chained his wheelchair
to other activists.
In our interview, Saenz -- from Austin, Texas -- is genial and soft-spoken,
but he says that at protests, he and his allies are anything but quiet. "Our
chant as we were fixing to get arrested was 'We'd rather go to jail than die
in a nursing home,'" he said.
More than two decades after that protest, hundreds of thousands of people
with disabilities are still in nursing homes, where their movement may be
highly restricted, even when they could be living more independent lives
with the right support from their communities.
After ADA: The Disability Integration Act
ADAPT was instrumental in pressuring the government to pass the ADA. The
group's bus blockades (featuring more arrests for Saenz) helped force public
transit to become accessible nationwide. But creating more accessible
communities doesn't go far enough unless people with disabilities are free
to live in those communities.
The ADA mandates that people receive support services and encourages states
to help people with disabilities live in their communities, but it doesn't
create a clear path to independence. The Disability Integration Act (DIA),
introduced as S. 2427 in December 2015 by Sen. Chuck Schumer (D-New York),
could change that by forcing states to prioritize accessible housing and
community-based services instead of nursing homes.
"It establishes a right to long-term services and support for those of us
that qualify for them," said Jennifer McPhail, an Austin-based community
organizer with ADAPT. "Right now, you don't have a guarantee that it will be
there when you need it."
People with disabilities, particularly those on Medicaid, are largely at the
whim of their local governments, meaning someone with the funding to live in
the community one year might be forced back into an institution during the
next cycle.
"What we're trying to do is level the playing field and give a person a
right to community-based services," McPhail said. Under the DIA, she
explained, people would be free to choose between home-based services and
institutions.
ADAPT's research shows that "overwhelmingly people would choose community"
over living in an institution. A Harris poll conducted in 2010, based around
a previous version of the bill, showed that 84 percent of Americans support
legislation that mandates community services. That number rose to 94 percent
when polling retirees and baby boomers.
The DIA would force states to prioritize community-based services over
nursing homes, but leaves it up to individual state governments to determine
the best way to implement that mandate. Much like the ADA, it creates a path
to enforcement as well, by allowing individuals and attorneys general to sue
over discrimination, as defined by the bill.
The DIA could have far-reaching effects, according to a New York Times
analysis published on May 13:
More than 1.4 million Americans live in nursing homes, but it is hard to
know how many of them could move back home. Federal data suggests that about
155,000 nursing home residents have a low need for round-the-clock
assistance. And about 217,000 people are of working age, another group that
experts say could function well at home. But long-term care experts said
that some residents who are sicker might also be good candidates to leave.
Although the Disability Integration Act is a long way from being enacted, a
coalition of groups, including ADAPT, is lobbying for support on both the
state and national levels and starting to win victories.
On March 31, the Austin City Council became the first city government in the
United States to pass a resolution endorsing the bill. The Democratic Party
in Travis County (where Austin is located) and the El Paso County Democratic
Party have also voiced their support for the bill.
Ann Kitchen, an Austin City Council member, said that the need for the DIA
is growing:
It's particularly important right now, as the baby boom group ages. Some
have called it a "silver tsunami." We need to be prepared; all of our
support services and medical programs need to be prepared to work better.
Emphasizing services in the community is so much more effective.
McPhail agreed that the aging population creates a greater need than ever to
pass the bill. "Who's looking forward to the day that someone makes all your
decisions for you, after you were a part of society?"
However, over the past decade, the number of younger people entering nursing
homes has also risen sharply.
"You Have to Keep Pushing Them"
Texas is one of six states to implement the Community First Choice program
under Medicaid, which creates incentives for offering community-based
services. But even under this system, Saenz and other Texans with
disabilities who are on Medicaid are only able to provide poverty-level
wages to their personal attendants, who assist them with essential everyday
tasks like dressing and bathing. States receive federal funding to pay for
Medicaid, but it's left up to the legislatures to divide those funds between
nursing homes and community services. Saenz's attendants are his employees,
but others operate through agencies.
Saenz said he's constantly worried about losing his attendants to illness or
retirement. Both his regular caregivers are in their 60s. "That's something
I always have in the back of my head; what am I going to do if something
happens?"
Wages for attendants vary a great deal from state to state, but ADAPT
research from 2015 suggested the average attendant in Texas earned about
$8.51 per hour, lower even than other conservative states like Arizona,
where the average wage is $10 per hour. After intense lobbying and protests,
including a May 19, 2015, occupation of the governor's office, the Texas
Legislature grudgingly agreed to raise the base pay for Medicaid-based
attendants from $7.25 to $8 per hour.
With attendants earning wages lower than some fast-food jobs, people with
disabilities constantly struggle to find and keep attendants, even when the
funds are available. Saenz has friends who have been forced into
institutions because they couldn't find sufficient attendants, and another
needed surgery because of injuries sustained from sleeping three to four
nights a week in his wheelchair because he didn't have anyone to help him
get into bed.
As the Fight for $15 campaign spreads across the United States, it's clear
that personal care attendants are an often-overlooked segment of the
workforce. It's not just a labor issue, but also one of gender equality and
racial justice. A 2010 study by the Paraprofessional Healthcare Institute
found that about 52 percent of attendants are people of color, and research
by AARP suggests over 90 percent of the workforce, both in and out of
institutions, are women.
Cathy Cranston, an Austin-based organizer with Personal Attendant Coalition
of Texas, said the DIA would "create a payment structure that would ensure a
sufficient workforce." Under the law, failure to provide enough funding to
pay attendants a competitive wage would be considered a form of
discrimination against people with disabilities.
"Right now, the wages are so low -- we're talking about in Texas but also
across the nation -- [people with disabilities] can't find the attendants,"
she added.
Cranston has worked as a personal attendant for about 35 years. She was
drawn into the field as a student by a program, long since slashed from the
state's budget, which provided room and board, along with a modest monthly
stipend, for personal care workers. "It helped pay my way through college,"
she told Truthout.
Under the DIA, "My life would get a little easier," she said. "I don't get
vacation time; I don't get sick leave, but at least it would help pay for my
health care."
As an experienced worker, Cranston has a position that pays $9.56 per hour.
Many other attendants she knows are single parents, and some depend on
social services to survive. "This would make their lives a heck of a lot
easier," she said. "They could buy their kids shoes and go to the dentist."
With the current Congress notoriously resistant to progressive causes, ADAPT
is left looking to the next election, hoping for a change in the political
landscape that could allow the DIA to pass. Regardless, the Texas-based
attendants plan to demand $13 per hour at the next biennial legislative
session in 2017.
"You have to keep pushing them, that's the only way," Cranston said.
Saenz, meanwhile, finds inspiration from the disability rights movement's
accomplishments.
"Even though I get discouraged from time to time with how much we have to
struggle and fight and protest and get arrested, we've still come a long
way," he said. "We've got to remember that."
Copyright, Truthout. May not be reprinted without permission.
Kit O'Connell
Kit O'Connell is a gonzo journalist and radical troublemaker from Austin,
Texas. He's also appeared in The Establishment and MintPress News. Read more
at kitoconnell.com.
Related Stories
Disabled Abandon Wheelchairs, Protest Medicaid Cuts
By Rose Aguilar, Truthout | ReportDisability Advocates, Nursing Home
Industry Battle for Health Care Dollars for Aging, Disabled
By Toshio Meronek, Truthout | ReportThe Americans With Disabilities Act Is a
Model for the World - Literally
By Janet E. Lord, Foreign Policy in Focus | Report

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