Incitement
Volume 18 No. 2 A Publication of
ADAPT Summer 2002
ADAPT/Incitement
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Incitement is produced from the offices of Topeka Independent
Living Resource Center (TILRC). Articles, letters, compositions,
displays and photos are encouraged. Please contact Tessa Goupil for
deadlines for submission of materials. The Editor reserves the right
to edit or omit any material that is submitted. For more information,
contact Tessa Goupil at TILRC or Stephanie Thomas at ADAPT.
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What is a Homeland Without a Home?
ADAPT DC Action: Let Freedom Ring
Another Mother for Freedom
Mothers Day 2002 was the kick off for the Spring ADAPT action
in DC. With 75% of those in nursing homes being women, and the
majority of those who provide long-term services and supports being
women this seemed only appropriate. So, on this beautiful spring day,
we took off on the first of many long marches and brought the issue to
the doorstep of the White House and to the wife and mother of the
President of the United States. ADAPT delivered a giant five foot by
eight foot mothers day card to First Lady Laura Bush and to Barbara
Bush, mother of the current president and First Lady for the passage
of the Americans with Disabilities Act. Both were asked to give
American women the "Gift of Freedom" by supporting Medicaid reform and
the Medicaid Community-based Attendant Services and Supports Act
(MiCASSA). The crowd included mothers, children and supporters who all
believe our national long term care system needs massive reform to end
the bias that pushes so many women (and men) into nursing homes and
other institutions after a lifetime of supporting others. After the
presentation of the card, the crowd sang two versions of Mommas Don't
Let Your Babies Grow Up and Put You in A Nursing Home, (takeoffs on
Willie Nelson's famous Mommas Don't Let Your Babies Grow Up to be
Cowboys song. see page 5)
Meanwhile, in Houston, where Barbara Bush now lives,
disability advocates including members of Houston ADAPT, the Houston
Center for Independent Living and the Center on Women and Disabilities
made a similar presentation. Children of women with disabilities spoke
out against locking up their moms, urged all Americans to end this
terrible national policy, and urged swift passage of
MiCASSA.
Follow the Money
Day two ADAPT took to heart the old political saying "follow
the money." And where do all the bucks stop in DC? What is one of the
biggest barriers to implementation of Olmstead, MiCASSA and similar
efforts? The Office of Management and Budget, OMB. For years their
name has been invoked in hushed tones, like the evil sorcerer
Voldemort in Harry Potter, and for years OMB has quietly but firmly
stepped on initiative after initiative to Free Our People. So ADAPT
took to the streets around their building and closed down Pennsylvania
Avenue, 17th Street and H Street, as well as blocking their front
doors. And many DC power movers and shakers were startled to find
that, just like a nursing home, you could not get out.
Terrible storms threatened, the skies blackened, clouds
swirled and wind gusted. But ADAPT's troops stood firm, holding the
doors and intersections until the giant was forced to react.
Emissaries from the White House finally came out and tried to
distract the ADAPT leadership with offers of discussions of the
issues, in order to better understand what has been explained for over
a decade now. At 4:00 it was absolutely impossible to arrange a
meeting with Mitchell Daniels, Jr., the Director of OMB, and White
House staff left the negotiations. .... But ADAPT held firm. " I
think the White House and the police really began to realize how
important our freedom is to us," said Steve Verriden, ADAPT Wisconsin
State Organizer. "When it started to rain, they were surprised that no
one made any move to leave. We all just pulled on rain ponchos, shared
umbrellas, taped plastic over the electric controls on our
wheelchairs, and settled in for however long it was going take to get
the meeting. We would have been arrested or slept there if need be."
At 4:45 the impossible became possible: we had a written commitment
for the meeting.
Jobs for Justice?
When looking at why the institutional bias remains so strong,
there is one group of players that, perhaps most of all, should know
better but remains a problem, year after year: the unions. Jobs at any
cost, lives for a paycheck, are the cynical view of the situation of
union jobs in the long-term care arena. While progressives write
summarily about the triad pushing for reform (families, workers and
people with disabilities) there is a definite hierarchy to the
picture, and guess who is on the bottom. Reform rarely means more than
better wages for the institutional workers and "a break" for the
family; guess who is the burden to all. Laguna Honda was a recent
lesson in this regard with workers organizing to rebuild that
monstrosity, stabbing the disability community in the back after
getting disability support for increased wages, and even within a
single union $25 a hour in the institution, $10 or less in the
community. But this story has been told again and again, at almost
every state institution slated for downsizing or closure. AFSCME has
even been rumored to fund the Voice of the Retarded from time to time.
"ADAPT shares the unions' goal of a living wage for the
workers who assist us," said Bob Kafka, National ADAPT Organizer from
Texas. "That only increases the chances we will get better care from
more qualified assistants, who will remain in their jobs over time.
What we will not accept, though, is holding people with disabilities
hostage in nursing homes and institutions to protect jobs for
unionized employees. ADAPT's strong message to union officials has
been heard, and now we can work on solutions to our mutual problems."
ADAPT took a three way approach. One group headed to the
Service Employees International Union (SEIU), which organizes nursing
home, "home care" and some state institutional workers. One group went
to the American Federation of State, County and Municipal Employees
(AFSCME), which organizes state institutional workers. The third group
hit the American Federation of Labor and Congress of Industrial
Organizations (AFL-CIO). Marching through the streets we took a route
that let us split off at the last minute, since by this time the
police were escorting us where ever we went. Each group entered the
lobby of their designated building and demanded a meeting with their
heads to discuss support for MiCASSA. In a relatively short time all
three groups got a written commitment for meetings within 60 days.
Gerald W. McEntee, President of AFSCME, and who also serves on the
Executive Council of the AFL-CIO, committed to personally arrange a
meeting with ADAPT representatives, himself, John J. Sweeney,
President of the AFL-CIO, and Andrew Stern, International President of
the SEIU.
In fact, by the end of May SEIU had written and committed to
supporting MiCASSA.
A National Call for MiCASSA
ADAPT's week in DC ended with a MiCASSA event held on Capitol
Hill and hosted by MiCASSA's cosponsors and ably emceed by NCIL's
Courtland Townes. 500 supporters crammed into the spacious meeting
room in the Rayburn building to hear the cosponsors and supporter
groups speak on behalf of the bills HR 3612 and S 1298. Yet despite
the huge room, so many were there that a sound system was set up for
those who flowed over into the halls of the Senate office building.
What made the event especially momentous was that 81 sites across the
nation were hooked up by telephone so over 3,000 people participated.
From New Hampshire to California, from Florida to Washington state,
from Montana to Texas, advocates were involved and empowered to
recommit to the fight to FREE OUR PEOPLE!
Speakers from Congress included original cosponsors of S.1298,
Sen. Tom Harkin (D-IA), Sen. Arlen Specter (R-PA); cosponsors of H.R.
3612, Rep. Danny Davis (D-IL), and Rep. John Shimkus (R-IL), as well
as Rep. Dennis Moore (D-KS) and Rep. Joseph Hoeffel (D-PA). Disability
organization and grassroots participants included Barbara Toomer,
ADAPT Utah State Organizer; Mike Oxford, President of the National
Council for Independent Living (NCIL); Howard Bedlin of the National
Council on Aging (NCOA); Marty Ford of the Arc representing the
Consortium for Citizens with Disabilities (CCD); nursing home escapee
Rick James of Denver ADAPT; Jim Ward of ADA Watch; Marcie Roth,
Executive Director of the National Spinal Cord Injury Association
(NSCIA); Becky Ogle and Brian Rasmussen of United Cerebral Palsy
(UCP); institution escapee Marie Anderson of Knoxville Tennessee
ADAPT; Maureen McCloskey of Paralyzed Veterans of America (PVA); Andy
Imparato, Executive Director of the American Association of Persons
with Disabilities (AAPD); and nursing home escapee Shelly Perrin of
Rochester, New York ADAPT.
After the event, people broke into state teams and visited the
Congress people and Senators to pass the word of MiCASSA and to ask
for their cosponsorship of the House or Senate version of the bill,
and eight more House members signed on with several others considering
it!
Though the War on Terrorism and Homeland defense are eclipsing
almost every item of domestic policy including our "homeland defense"
of MiCASSA, and may delay passage of this bill until next session,
these events greatly strengthened the foundation for MiCASSA for the
next session. So even if the bill needs to be reintroduced, the
momentum for passage is building.
Mommas Don't Let
Your Babies Put You
in a Nursing Home
by Mike Oxford
Mommas, don't let your babies
put you in a nursing home
With strangers alone,
And you're never at home,
Not with the ones that you love...
Mommas, don't let your babies
put you in a nursing home
Where dignity's blown,
And the bed's not your own,
Stranger no place to call home...
Mommas, don't let your babies
put you in a nursing home
With strangers alone,
And you're never at home,
Not with the ones that you love...
Mama's there's blue sky, there's rain
There's joy and there's pain
Live where you want to
Stay where you will
Support MiCASSA, our bill!
Mommas Don't Let Your Babies Grow Up
And Put You in a Nursing Home!
by Anita Cameron
Mommas, when you get old, your kids you know,
they start to worry,
About how you're gonna get along in this world
of stress, strife and hurry
So, they'll take you to a place with a cute name
where they think you'll be safe
Never knowing your golden years
Will be filled with many tears,
Living with strangers and strange smells all day.
Refrain: Mommas, don't let your babies grow up
And put you in a nursing home.
'Cause a nursing home ain't your home,
And you'll be all forlorn,
Wondering why you are living this way.
Mommas, don't let your babies grow up
and put you in a nursing home
'Cause even with money, it ain't peaches and honey,
Livin' without respect or dignity each day.
Mommas, all over America from Barbara to the
woman who's out on the street
There's a thing called MiCASSA that'll give you
a choice where you wanna be.
You can stay in your own home, and have all
the help that you need to be happy and free
So come lift up your voice
And speak out for real choice
And support MiCASSA with me!
A Mother's Day Wish To Barbara and Laura Bush:
Give the "Gift of Freedom" May 12, 2002
Dear Barbara and Laura Bush:
Happy Mother's Day. Today millions of women all over our
country are recognized for their role as cornerstones and nurturers of
our families and community. You both are among these women, for both
your private and public roles. You both are known for your belief in
the importance of family, community, independence and opportunity.
Barbara, your work on literacy is widely recognized, and speaks to a
fundamental cultural need, as fundamental as long-term care. Laura,
you too work on education issues, and have rightly been honored for
your support of Afghan women; American women also need your help.
As we celebrate Mother's Day, many of the the women we honor
are neglected by our long-term care system. Long-term care is
overwhelmingly a women's issue. Approximately 1.2 million women live
in nursing homes and other institutions. This alarming fact reminds us
that our long-term care system does not support community and family
values; in fact it does the opposite - disproportionately forcing
women into nursing homes and other institutions.
Consider these long-term care statistics:
About 75% of nursing home residents are women;
Average cost of service in a nursing home was $48,000 (1997);
Estimated nursing home costs by 2030 will be $97,000;
The typical woman over 65 has an income of about $13,000;
Nearly 50% of women in nursing homes are on Medicaid;
Two thirds of home care consumers are women;
Almost 8 in 10 unpaid caregivers are women.
These women bore and raised us, and now when they need support
they become the victims of our throw-away society. There is a better
way to treat our grandmothers, mothers, daughters and sisters! Our
long-term care system needs to be reformed.
The Medicaid Community Attendant Services and Support Act of
2001, MiCASSA, is a step in the right direction and will begin the
reform necessary to give women the ability to choose where and how
they receive services.
We ask you to talk with your son and husband, President George
W. Bush, and with other sons, husbands, fathers and brothers! Talk
with daughters, wives, daughters-in-law, sisters, mothers and even
grandmothers. Encourage the President, and the others too, to support
S. 1298 and HB 3612.
This support gives the "Gift of Freedom" to America's mothers
on Mother's day. Thank you for your support of freedom and dignity for
woman.
Free Our People!
ADAPT members
Why Real Choice, MiCASSA and Implementing the Olmstead Decision matter
to Women
Over 75% of the 2 million people in
nursing homes in the US are women.
Over 73% of paid workers in nursing
homes and community based ser-
vices are women.
Over 72% of unpaid family care-
givers are women.
Over 22.4 million households, 1 in 4,
provide unpaid attendant services
for friends or family.
Over 4.1 million of these households
do over 40 hours of services per
week.
Another 1.6 million of these house
holds do over 20 hours of services
per week.
Over 64% of these families work full
or part time; over half of them had to
adjust their work schedules to do so.
NCIL Gives MiCASSA a Boost!
The National Council on Independent Living (NCIL) presented
its President's Award to the Honorable Danny K. Davis and the
Honorable John M. Shimkus on June 15, 2002 at their Annual Conference
in Washington, DC. This award is presented to individuals who
demonstrate dedication and commitment to advancing the rights of
people with disabilities. Congressmen Davis' and Shimkus' leadership
in the introduction of HR 3612, the House version of Medicaid
Community Attendant Services and Supports Act (MiCASSA), is a
significant step forward in providing people with disabilities a real
choice in where they can live and receive services.
NCIL President Mike Oxford who presented the award said, "I am
very pleased and honored to have the privilege of acknowledging the
hard work and commitment to independent living of Congressmen Davis
and Shimkus of the great state of Illinois. Since the recent
introduction of HR 3612, MiCASSA, we have already added up 48
cosponsors and climbing. Representatives Davis and Shimkus have added
a lot of energy and fire through their introduction of HR 3612. The
national disability community is gratified to have such fine champions
in the fight against isolation and segregation of people with
disabilities."
In fact NCIL, through their visits to the hill, delivered
MiCASSA information to each member of Congress, in both houses, and
right away were able to add another dozen cosponsors to the HR 3612.
DNC Chairman Calls For
'Real Freedom'for Americans with Disabilities
Washington, D.C.-- May 14th, 2002 Democratic National
Committee (DNC) Chairman Terry McAuliffe called on Congress to enact
"Real Freedom" initiatives to improve the independence, economic
self-sufficiency and societal participation of Americans with
Disabilities.
Using terms startlingly close to those of ADAPT and other
disability rights groups, McAuliffe said "We need to enact federal
legislation, like MiCASSA, (Medicaid Community-Based Attendant
Services and Supports Act) that offers Real Freedom for people with
disabilities the choice of receiving long-term care services and
supports in their own homes in the community."
"President Bush's so-called New Freedom Initiative falls far
short of the 'Real Freedom' needed by Americans with disabilities,"
McAuliffe charged. "President Bush is failing not only to live up to
the rhetoric in his New Freedom Initiative, but also the real
bipartisan nature of disability policy... and, most of all, failing
people with disabilities."
In addition McAuliffe said Real Freedom means:
*assuring that seniors and people with disabilities have access to
and can afford needed prescription drugs.
*modifying Medicare homebound rules so that people with disabilities
can maintain their health and move about freely in their communities.
*swift implementation of the Ticket to Work and Work Incentives
Improvement Act this law and passage of the Family Opportunity Act.
* Strengthening and modernizing Social Security for all current and
future beneficiaries.
"We need Presidential leadership and Congressional action to
enact 'Real Freedom' initiatives that improve the independence,
economic self-sufficiency and societal participation of Americans with
Disabilities.... Democrats will fight to give them real freedom,"
McAuliffe ended.
Feds Allow Funds for Transition Costs from Nursing Homes to our Homes
In a May 9th, 2002 letter to the State Medicaid Directors, Centers for
Medicaid and Medicare Services, CMS, Director Dennis Smith announced
that Medicaid funds can be used for community transition services.
ADAPT and other disability groups have recommended such a move for
years, and feel it is critical for many individuals to successfully
make the move back into the community. The President's New Freedom
Initiative report promised this, and states that have gotten "Nursing
Facility Transition Grants" have shown that such costs are reasonable
and manageable.
States may pay the reasonable costs of community transition services,
including some or all of the following:
Security deposits for a lease on an apartment or home;
Essential furnishings (bed, a table, chairs, window blinds,
eating utensils, and food preparation items)
Moving expenses;
Setup fees or deposits for utilities (e.g. telephone,
electricity, heating);
Health and safety assurances, such as pest eradication,
allergen control or onetime cleaning prior to occupancy.
Reasonable costs, according to CMS, are expenses the state deems
necessary "for an individual to establish his or her basic living
arrangement" but would not recreational items such as televisions,
cable TV access or VCRs. In addition, rent costs cannot be covered by
the federal Medicaid dollars (FFP), although states are allowed to use
their own funds including their matching funds that draw down the
federal dollars.
San Antonio Passes a Visitability Law
San Antonio's city council, working with a task force of
community-based activists and city planners, recently passed an
ordinance requiring that new construction single-family, duplex and
triplex homes receiving any city financial assistance meet
visitability standards. In 2002, about 200 homes likely will now be
built with living space features more desirable to homeowners,
especially people who experience a permanent or temporary disability.
Although the standards for this ordinance are more limited
than some people's interpretation of universal design and follow the
Visitability standards designed by Concrete Change, San Antonioans
refer to this as their universal design standards, or "UD."
"Homes that follow universal design are more marketable and
livable for everyone, regardless of their age, ability or size," said
Emily Thuss, a task force member and coordinator of Making Housing
Accessible, a project of The Enterprise Foundation in San Antonio.
Also, this design better accommodates the desires of America's senior
population, which will double by 2030, according to AARP.
The cost for complying is minimal, especially given the
alternative. Making adjustments in plans and at construction costs
one-eighth of the price of making changes after construction.
The San Antonio ordinance will cover all single-family, duplex
and triplex homes that receive assistance funding from the city. There
are no waivers for interior requirements.
HUD Spends Hundreds of Millions to Bail Out Nursing Home Industry
While claiming they have little to no funds to increase
available vouchers or build more integrated, accessible, affordable
housing options, the US Department of Housing and Urban Development,
HUD, is busily providing over $200 million in corporate welfare to the
nursing home and assisted living industries. According to Provider
Magazine, the newsletter of the nursing home lobby group the American
Health Care Association (AHCA), HUD had to pay out for $174 million in
loans for nursing homes, and $27.6 million for Assisted Living
facilities in 2001.
The 232 program, long felt by ADAPT and others to be a gross
misuse of HUD resources, insures loans to nursing homes, assisted
living and similar facilities through HUD's Federal Housing
Administration. It was through this very program that these loans were
insured and when the developers defaulted HUD was left to foot the
bill. HUD could foreclose on the properties and resell them, but
according to Provider Magazine (June 2002), they have set up a work
group with AHCA and other 232 "stakeholders" to study the problem.
Talk about the fox guarding the hen house.
HUD is rapidly fueling the outrage of the disability community
as it continues to cater to the oppressors while ignoring Olmstead,
the New Freedom Initiative and the disability community!
Kansas Celebrates New State Law!
Becca Vaughn announced a major victory: a Kansas Visitability
law! HB 2020 unanimously passed the House on May 14, 2002, passed the
Senate the previous week (with 1 opposed, 39 in favor) and was signed
into law by the Governor, effective July 1, 2002.
The access features the bill requires on the accessible floor are:
A step-free entrance (side, back, front, garage) on an
accessible route;
All wide doors;
Accessible path through the dwelling's accessible floor;
Reinforcements of specific bathroom walls;
Electrical/environmental controls located in usable locations.
The law covers newly constructed single family, duplex and
triplex dwellings built with any type of state assistance or
administration. Estimated total number of units covered would be
approximately 40-60 a year.
Passing the bill took 4 years of labor-intensive education and
persuasion on the part of Kansas advocates, many of whom are members
of the national organization Disability Rights Action Coalition for
Housing (DRACH). Becca Vaughn extends her thanks to all who supported
the bill.
"The People United will Never be Defeated!!!" Becca declared,
thanking people who helped make it happen including those who shared
strategy suggestions and information.
Concrete Change will soon add the text of the Kansas bill to
our website, along with the recent city ordinances passed in Pima
County AZ and Naperville IL, as well as the Vermont state law.
http://conretechange.home.mindspring.com
Editor's Note: I came across Justin's testimony for the hearing on the
original MiCASA HR 2020, in 1998. Though this was a somewhat different
bill from the current MiCASSA, I was struck by how timely his
statement remains. Here is what he had to say:
Justin Dart Jr
on HR 2020, the Medicaid Community
Attendant Services Act, MiCASA
I have dedicated my life to empowerment and to justice.
On December 7th I suffered a serious episode of heart failure.
After eight days of intensive cardiology care the world class
professional staff of Georgetown University Hospital had saved my
life, but exhausted the resources of Science and were unable to cure
the disease. I do not know how much longer I have, but it was clear to
me that my life would best be continued at home. I now live at home
with the assistance of an attendant and family and friends. Here I am
surrounded by people I love. Here I am in command of my life. Here I
can pursue the life I want.
This episode has only brought home to me the importance of
having choice and control in one's life. And that is why I am here
today testifying in support of HR 2020, the Medicaid Community
Attendant Services Act, MiCASA.
Colleagues, this hearing and this bill give us an opportunity
we must not pass up. HR 2020 provides the opportunity to create
choices for people, for government and for our nation. I urge your
full support of this bill.
Right now, as we sit here, over two million Americans are
institutionalized. And many are there because we have not yet had the
will to give them the control and choice, the basic human right, to
live where they want to live. We spend over $51 billion dollars on
Medicaid long term care. Eighty percent of that, $41 billion, pays
for institutions, mostly nursing homes and Intermediate Care
Facilities for the Mentally Retarded, ICF-MR. The other 20 percent
covers all the community based services available under Medicaid.
We tried to address the problem of long term care when we
created an entitlement to nursing homes, and before that when we
created the various state institutions for people with disabilities.
But we did not get it quite right back then. We thought we would be
offering a basic safety net. Instead we have created a trap in which
millions of Americans have become entangled. People have had to give
up their homes, their marriages in some cases, their children, their
parents and many of the most important parts of their lives, because
they need assistance they can not get at home.
The reality is that I am personally able to afford some of the
supports I need. Most Americans can't afford these services and don't
have the option of living a better life at home. They don't have a
real choice. HR 2020, Mi CASA -- which means "my home" in Spanish --
would give them that real choice.
MiCASA offers a simple solution to a problem we unsuccessfully
tried over a quarter of a century ago to address. MiCASA says let's
let the people we already have decided are entitled this fundamental
support from their government, let's let them decide where they want
this support. MiCASA says let's give people real choices. Let's let
the money follow the person.
America is not built on the principle that corporations should
have a guaranteed income from the federal and state governments at the
expense of our most vulnerable citizens. Our nation is founded on the
ideals of liberty and justice for all. Sometimes we stray from these
ideals, but we can, and we must, return to the right path. HR 2020
would take us a giant step toward that right path.
MiCASA simply says let the free market system drive options
for long term care. Those who choose a nursing home or institution
have that option. But for those who do not choose that option, those
who must have the support services but want them in the community,
those individuals would have real choices too.
HR 2020 would give governments more flexibility as well. Yes.
The states would have more flexibility too to give their citizens
what they want. I come from a business background and there the
bottom line is the dollar. When you are given a fixed number of
dollars to do a job, and told "these tasks must be provided, and then
you can embellish with the rest," well, you have to spend the money on
the required items first. Under Medicaid, nursing homes and ICF-MRs
are required. Attendant services are not. This has lead to gross
inequities between states.
I doubt there is a person in this room who is not aware that
community based services are the preference of most Americans. Some
of us would rather die than suffer the indignities and losses of
institutionalization. Right now however, though community based
services occupy more than 80 percent of the talk, the thoughts, the
beautiful creative energy of our national leaders in this field, these
services must eke by on 20 percent of the funds. All the waivers, the
optional programs, HCBS (Home and Community Based Services), the
Personal Care Option, all are funded with that 20 percent of the
Medicaid long term care budget.
When I look at this scenario from my business perspective I
see this is backwards.
Why are we wasting money forcing some people where they do not
want to be? Where is the fiscal responsibility in that?
For the past 30 years I have struggled to be a soldier for
justice, empowerment and human dignity, and from this perspective too
I see the current system is backwards.
The toll on human lives has not been calculated. But
colleagues, it should be calculated. Our current policy forces
choices on our fellow Americans which no one should have to make. No
one should have to give up home, job, family and liberty so she or he
can take a bath, eat dinner or get into bed. However, that -- all too
often -- is exactly what happens. According to a 1997 study done by
the National Alliance for Caregiving and AARP, over 22 million
households provide caregiving in the United States. That is one in
four. And the effect spreads even to our economy since the majority
of these caregivers -- 64% -- are employed, 52% full time. "For these
caregivers, the responsibilities of caregiving have a direct impact on
employee productivity and on those who work with them" this study
reports. "The aggregate costs of caregiving in lost productivity to
US business ... is $11.4 billion per year. These numbers should be
considered very conservative.... If all these additional [those
providing more limited care] employed caregivers were included in the
calculations, the total cost would exceed $29 billion per year." This
study just shows a sliver of the problem, looking at absenteeism,
replacement of workers who must quit to provide more full-time
caregiving, crisis management and supervision problems. It does not
calculate lost wages, and it only looked at caregivers of persons over
55 years old.
When I wear my cowboy hat from my Texas years, and I think of
the values on which this nation was founded -- freedom, independence,
opportunity, opening up new frontiers -- this scenario seems most
backward of all. "One nation, under God, with liberty and justice for
all?"
This country was founded on these principles, but for many in
our great nation, these are little more than a dream. I can tell you
from my own recent experience, that despite the world class
professionals at the highly and justly respected Georgetown University
Hospital, I felt like a laboratory rat in a cage. Our long term care
system, especially for those who can least afford to make their own
options, does not reflect our values. I have not given up on our
forefathers optimism however, and I tell you MiCASA, HR 2020, can help
get this nation's policies back on track, if we have the courage to
follow our principles.
MiCASA supports families, putting the decisions about these
highly personal choices back in the hands in which they belong, the
hands of those who are directly effected. Instead of breaking up
families, as our current programs do, MiCASA lets families decide what
is best for them. Instead of forcing people into federally mandated
institutions, it lets people decide where they wish to receive
services and what level of control they want to have, because it
allows for a range of options -- from a consumer controlled agency
model, to a fiscal intermediary, to a voucher system.
As I have grown older, I have found my functional abilities
have become more limited. I have more health problems. I need more
help. And as I have approached this situation I have felt first hand
the chill of my options becoming more limited. How much more deeply
would I feel this chill if I were depending on Medicaid for my long
term care? Our nation is growing older, and more and more of us are,
and will soon be, facing this situation. More people, with more
severe disabilities are living longer and have the potential of being
more productive given the right options. You, our nation's leaders,
must grab this problem with both hands, and craft a better solution.
HR 2020 is a powerful tool which now lies in your hands.
My recent experiences confirmed something else I have known
for some time. Our current service system is overly medical, and too
focused on the medical model of service delivery. Do not misunderstand
me. We have some of the top medical resources in our nation. And
these resources can in many cases literally perform miracles. This is
especially true in acute health care situations. But long term care,
attendant services, the medical model has taken over too much. It is
paternalistic and robs people of their self control and dignity. It
does not empower the individual and in truth fosters dependency on the
health professional. It does this very expensively at the cost to the
taxpayer.
In the last decade I have traveled all across this nation
meeting with literally thousands of people involved in the disability
rights movement. They are my source of empowerment and I have learned
much from them. Again and again I have heard of the critical need for
consumer controlled attendant services, like those in HR 2020. I
urge you to hold town meetings or hearings in your districts and hear
their words directly. Listen to the stories of the impact these
services, and the lack of these services, have on people's lives. Now
my life is changing and as it changes it is reflecting the stories
from thousands of individuals from all corners of this nation. Every
one of our lives will change in this w Will the future be ready for
you?
The states can act as the engines of creative thoughts and
ideas. MiCASA begins the process of allowing states to redesign long
term care programs to meet the unique needs of individuals with
disabilities. The status quo is no longer tolerable. There are
exciting innovative programs throughout the country. Wisconsin,
Kansas, California, Colorado and Massachusetts all have programs that
encompasses the principle of choice, control and empowerment. The
problem is that, for the most part these programs reach such a few
people, even in the states where they exist and far, far too many are
left with little or nothing. Our nation is great enough to have a
true safety net, below which no one may sink.
We have programs across the states which show the MiCASA
approach will work. Kansas and Oregon are two states that have had
open waivers for many years and the so called "woodwork effect" has
not busted the bank. MiCASA can work, meet the needs of people with
disabilities and do so cost-effectively.
I leave you with a call for action! To Congress I say act on
HR 2020 now! The country is watching! To people with disabilities I
say unite, act and speak in one voice for HR 2020. The enemy wants us
to fight among ourselves. To family members I say advocate for your
children understanding they may have different goals than you do.
Ultimately family members working with people with disabilities will
be a powerful advocacy unit to confront. To providers I say work with
us, don't fight us - empowerment is infectious, it's good business as
well as good for people with disabilities. United we are a powerful
force to be reckoned with.
The struggle for HR 2020 will be difficult but nothing good
comes without struggle. If we are resolute we will prevail - if we
falter our friends will support us. We will not go away.
I have served many Presidents and believe in the public
process. I urge the members of this committee, the Congress as a
whole and the Clinton Administration to make a commitment for HR 2020.
Your leadership is essential.
There's no place like home.
Around the Nation
State declares WAR on Coloradans with disabilities
by Anita Cameron
The State of Colorado had launched an attack against
Coloradans with disabilities. It had initiated budget cuts that would
adversely affect thousands of people across the state. Effective July
1st, there was to {be a 5% cut in reimbursement funds that home health
agencies receive to pay home health aides for their services. These
aides only make what someone who works at 7-11 is paid, yet they help
folks with disabilities do the vital tasks that it takes for them to
live independently within the community. Now, they face a pay cut!
This was originally going to be a 30% cut, but over 200 people
committed to a tent city at the Capitol and the state backed down to
5%. Everyone agreed however, this was 5% too much.
As if that were not enough, the state has also placed a freeze
on HCBS-EBD waivers. These are home and community based services
waivers for elderly, blind, and disabled folks who are in nursing
homes, and want to live in the community. Now, with the stroke of a
pen, their dreams of freedom have been dashed. To add insult to
injury, agencies and organizations serving people with disabilities
were not invited to comment on this until July 12th, eleven days after
these initiatives would go into effect!
The state said it had done this to save money. Yet, studies in
Colorado as well as across the nation show that states save over 60%
by providing services to a person in the community rather than in a
nursing home. Further, the Supreme Court has ruled that people with
disabilities have a right to live in the most integrated setting,
citing that unjustified institutionalization is discrimination!
President Bush's New Freedom Initiative clearly states that all
Departments and States should integrate people with disabilities into
the mainstream of society. President Bush awarded Colorado $1,000,000
to transition people out of nursing homes; the state was supposed to
do this using the HCBS-EBD waiver, but froze it instead.
The people of Atlantis Community, ADAPT, Association of
Centers for Independent Living, PASCO, Accent on Independence,
Colorado Cross Disability Coalition, and other home health agencies
and organizations in Colorado are not going to sit still while the
state declares war on us in the community, and people who are still in
nursing homes. "Injustice anywhere is a threat to justice everywhere,"
said Dr. Martin Luther King, Jr. "If we don't fight this, home health
agencies will fold, people with disabilities will go into nursing
homes, and those in nursing homes will never move into the community"
said Anita Cameron.
After a two week vigil on the sidewalk in front of the Human
Services Dept., after numerous meetings and negotiations with the
department officials, Colorado ADAPT folks and supports from numerous
other groups from the CO Cross Disability Coalition to home health
agencies and more, the protesters emerged victorious, with no cuts in
home and community attendant services. The cuts were originally
intended to be 40% but dropped to 5% after the protest was instigated
and now 2 weeks later are down to NONE!
Congratulations to some kick ass activists and organizers, and
to their supporters!
Cuts such as these are being considered in most if not all
states, and we should be ready for anything in the months to come.
St. Louis ADAPT TAKES it up a Step!
Michelle Steger
A small but determined group of us St. Louis ADAPT folks had
an action at a quaint gift shop in the nearby town of Kirkwood where
several of us live. Its four entrances all have steps, but one has
only a single 6" step, so we figured it'd be easy to fix. The
business, "Down by the Station", is owned by the Mayor's wife and 2
other women; and the Mayor and his wife own the building! The Mayor,
needless to say, is not a big fan of ours. He's repeatedly put himself
on the Kirkwood Human Rights Commission just to roadblock any of our
disability rights issues, so we just had to do this protest. We passed
out flyers with our comments about equal access, and buttons which
said "We want Kirkwood open for business for all!" The public was very
supportive.
Though none of the owners were at the shop at the time, the
Mayor and his wife quickly arrived and a heated discussion ensued,
with the press there to catch it. Though very angry, she agreed to
call the ADA Project and look into the matter for us. However, when
the consultant did go out there, she turned him away, saying it wasn't
a problem anymore! So we gave the other two owners a letter, giving
them a week to respond. They got the consultant back and got the
survey, so we gave them an additional letter saying we would give them
10 days to secure construction bids and let us know their plans. Even
though one of their big excuses was lack of money, they found enough
of it to hire an attorney to write us saying they were meeting with
the city next month. So the 10 days came and went and we filed a
lawsuit with Missouri Protection and Advocacy. All this over one step!
However, THE PEOPLE UNITED WILL NEVER BE DEFEATED!
In looking through some old organizing information I came
across this definition of "community" developed in the 70's by the
Organizing Training Center.
Made me think of the folks from ADAPT or should I say: The
ADAPT Community!
A community is "a group of people, sharing a common bond or
tradition, who support and challenge each other to act powerfully,
both individually and collectively, to affirm, defend and advance
their values and self-interests."
New York May Begin the Olmstead Process
by Bruce Darling
Direct action makes a real difference. NYS ADAPT's efforts on
Thursday, June 20th were a huge success! Against all odds (and
sometimes even our own doubts), S.7342-A was moved out of committee to
Senate floor for a vote and passed, amid a flurry of phone calls and
just hours after an ADAPT "visit" to Senator Bruno's office.
Even though the Most Integrated Setting bill passed the New
York State Assembly on June 12th, it was "lost" in the Senate
Committee on Aging. Senate Most Integrated Setting bill (S7342-A)
establishes a Council to develop a comprehensive, statewide plan for
providing services to individuals of all ages with disabilities in the
most integrated setting. The Council includes consumers and members of
relevant state agencies, and there is no cost attached to the
Most-Integrated Setting bill. In fact, the state has received Federal
funding which would cover the costs of this planning process.
The IL Systems Advocacy network began making calls to all New
York State Senators on June 18th, urging them to vote for the
Most-Integrated Setting bill when it came to the Senate floor.
However, it was painfully clear that the bill would never reach the
Senate floor without the support of Senate Majority Leader Joseph
Bruno. NYSILC, ADAPT, Independent Living Centers and other advocates
for people with disabilities and seniors joined together in the phone
campaign to urge Senator Bruno to move S.7342-A to the floor for a
vote.
On June 19th, ADAPT sent a letter to Senator Bruno encouraging
the Senator to take action on the bill. The letter ended with these
words: "...It is critical that you move quickly and bring S.7342-A
to the Senate floor for a vote before the end of this session. ADAPT
members will be in Albany tomorrow to confirm that this important
legislation will be brought to the floor of the Senate for a vote. New
York State can not wait any longer to address this issue."
ADAPT members from Rochester and New York City started their
trips early in the morning on June 20th. ADAPTers met on the Concourse
at the Governor's Assistive Technology Conference and then proceeded
over to the Capital. Despite heightened security since our February
action, over 35 ADAPT members lined up on the third floor of the
Capital building. They entered Senator Bruno's office in single file,
filling the office over the objections of a receptionist who insisted
this was NOT the way to see the Senator. She warned Pam and Pat
Taggert that they would be arrested if they didn't leave. The twins
looked at her and nonchalantly answered, "It wouldn't be the first
time." People in power wheelchairs took strategic positions, blocking
the office doors and making it nearly impossible to move around.
ADAPT members chanted, "Who do we want? BRUNO! When do we want
him? NOW!" while others held signs that said "Implement Olmstead Now!"
and "Our Homes Not Nursing Homes". Outside the office, while blocking
the side door, Carmen Hernandez was almost thrown out of her chair by
state police who had leaned the chair halfway forward, balancing on
just the small front wheels. At the same time, and same door, the
State troopers attempted to physically drag Pat Carpenter and her
power wheelchair away from the side door.
State troopers were called and they announced that they knew
many of the protesters, pointing out that some of us had been arrested
in February. They knew ADAPT meant business. In fact seven of the
original Olmstead Eight were among the group and ready to be arrested
if necessary!
Once it was clear that ADAPT was not leaving, Senator Bruno's
negotiators were sent in. The negotiators began making offers to meet
elsewhere in the building with staffers, but ADAPT refused to move.
ADAPT was not moving until we saw Senator Bruno and got his commitment
to move our bill to the floor. The media was everywhere. Cameras were
flashing. Television cameras were lined up. The negotiations continued
and ADAPT was offered a meeting with the Senator just down the hall.
He was busy, but he would come back and meet with us. ADAPT counter
offered, "When the Senator arrives to meet with the Leadership Team,
our troops will leave the office." ADAPT negotiations can be tough,
particularly when people are not dealing in good faith. Without
warning, the Senator came out from behind one of the doors that we
were blocking. He was in a conference room we had been blocking the
whole time. Their negotiation strategy had backfired.
Nadina LaSpina, NYC ADAPT, was the first to recognize the
Senator. She and other ADAPT members pressed the Senator to move our
bill to the floor for a vote. The Senator, surrounded by people in
wheelchairs, promised that he would get the bill to the floor for a
vote by 2:00 PM so we could leave for our long trips home. ADAPT
members were impressed with the exact timeframe he gave us. The
Senator began leaving through the side door but was immediately
surrounded by press. He announced publicly that the bill would be
voted on, and passed, by two o'clock!
Senator Bruno was good to his word and the bill passed the
Senate just before his deadline. While attempting to find a wheelchair
accessible location to view Senate proceedings, ADAPTers met up with
Senator Bruno's legal counsel. He thanked ADAPT for holding the
protest and bringing the Most Integrated Setting bill to their
attention. Many ADAPT members were assembled on the Senate floor
witnessing the passing vote while others watched from the 4th floor
gallery.
Once the Governor signs the bill, New York State will finally
join the ranks of 40 other states which have begun a planning process
to implement the Olmstead Decision. Thanks to EVERYONE who helped with
this advocacy. The combination of people in the office and the flood
of calls made a real difference. It is clear that direct action and
solidarity WORKS!
Free Our People!
Singer Target of Not Dead Yet in Philly
by Erik von Schmetterling
On June 24, 2002, twenty-five Philly ADAPT members, who are
also a part of Not Dead Yet, showed up to "greet" Peter Singer, the
Princeton professor who advocates killing disabled babies because
their lives don't have any quality. This was to be a dinner reception
at the White Dog Café (a well-known Philly spot for "good activists"
in our community) followed by an address from Singer at a University
of Penn lecture hall. We covered both front and back entrances to the
cafe, leafleting everyone who entered, as well as those just passing
by.
We spoke with the restaurant's owner, Judy Wicks, a very
progressive type, known well in Philly for her philanthropy and
general support of activism. She said she didn't invite Singer because
of the views for which we were protesting, but for his animal rights
position. Jimmi Shrode countered that one can't begin to really
understand ANIMAL rights until one totally supports the rights of
their OWN species, i.e. Human Rights! Erik added you have to take the
person in their totality -- for example, Hermann Goering (a noted
Nazi) supported the German Wildlife Fund, yet history remembers him in
a very negative way because he not only supported the Nazis, he
benefitted from their "work" and actively advanced the Holocaust!
Judy Wicks agreed to host us soon to showcase the Disability
Rights struggle and our issues. Contact info was exchanged and we will
set this up in the near future. This was an important win because it
gives us good exposure to other activists, as well as potential donors
to support our work.
Judy's daughter, a young activist herself, became so inflamed
by Singer that she refused to sit with him, as was planned, and stayed
outside with us.
Our chanting and ADAPT clappers made lots of noise. We didn't
relent or cave in to the University of Pennsylvania police
intimidation -- we've been harassed before by the best of 'em,
including Federal Marshalls, FBI, State Troopers, etc., etc. Hot and
humid weather was complete with a drenching, summer thunderstorm;
still we remained chanting, holding our signs high from 5:00 p.m.
until after 9:00 p.m. firm in our determination and presence of
purpose. We not only "greeted" Singer, we were still there when he
left. He gave us one of those "nervous" smiles -- it was quite obvious
that he was not pleased. That made our night!
Though we chose not to be outright confrontational (blocking
doors, etc.), our presence was a very powerful statement unto itself.
A few of the "progressives" were totally unnerved that they had to
walk "through" so many cripples! We did manage to talk with lots of
people, though, and shamed many of the so-called "activists" who came
out in attendance. Some turned away; those folks were applauded.
WE'RE NOT DEAD YET! We are the Resistance! As the Free French
said, so many years ago, "VIVA LA RESISTANCE!"
Passages
Disability Rights Leader Justin Dart
Early Saturday, June 22, 2002 Justin Dart passed away at his
home in DC. Though his health has been failing for some time, Justin
kept up the fight for disability rights; he made four speeches in his
last week. Justin's last thoughts and words were of "United Advocacy!"
sharing love with his family and those who share his dream of dignity,
equality and empowerment for all people with disabilities.
In his early days Justin may have been leery of ADAPT but he
came to be one of our strongest members and allies in the fight.
Justin could not stand ing forced into confinement, which deepened his
personal commitment to our mutual goal to Free Our People!
David Oaks of Support Coalition International recently wrote:
I talked to Justin just a few days ago. He told, "I know what
people need to do to really win freedom." I listened intently. "What
is it Justin?" I asked. He yelled, "Get off our asses and organize!"
Philly ADAPTers remember spending one Christmas day with
Justin and Yoshiko visiting folks incarcerated in the city run nursing
home, folks who dreamed of being free. Not too many people would spend
their Christmas that way.
What I'll always remember about Justin was his voice. His
voice was deep and powerful as he gave his speeches at rallies. And
how he always put his hat on Klye Glozier. Leonard and Renee Peek
reminisced. Elizabeth Hutchison of New Mexico also remembers that
voice "His frail body did not match his thunderous voice. His memory
inspires me to do more advocacy."
Many remember his encouraging them to struggle for better:
whether for work that suited them better (get out of VR!), for full
supports for their child in school, for strength when others who
should be comrades in the struggle seemed ready to tear them down.
Andy Gill of DAN (the United Kingdom's sister to ADAPT) wrote
of his meeting Justin at an ADAPT action in Atlanta Georgia. Not many
disabled people can get to associate with the big Government players
and yet hold onto the grass roots and true values of all disabled
people. Justin came across to me as somebody who could do just that.
Carolyn the Long Ranger said We will miss that great cowboy
warrior.
Pat Puckett of GA ADAPT observed "He stayed around longer than
the docs said he would.... probably just to show them who is boss!"
Capital Area ADAPTers remember him as one of their biggest
supporters, blocking the doors to an inaccessible Blockbuster Video
for hours on that group's first big action. Marcie Roth pointed out
"Anyone who wears a Capital Area ADAPT t-shirt wears a loving gift
from Justin Dart to ADAPT."
Our greatest tribute to this friend and leader will be
continuing our work for civil and human rights, for liberty and
empowerment for all people!
Our thoughts and love are with Yoshiko and Justin's extended
family.
"I AM WITH YOU. I LOVE YOU. LEAD ON."
Dearly Beloved:
Listen to the heart of this old soldier. As with all of us the
time comes when body and mind are battered and weary. But I do not go
quietly into the night. I do not give up struggling to be a responsible
contributor to the sacred continuum of human life. I do not give up
struggling to overcome my weakness, to conform my life - and that part of
my life called death - to the great values of the human dream.
Death is not a tragedy. It is not an evil from which we must
escape. Death is as natural as birth. Like childbirth, death is
often a time of fear and pain, but also of profound beauty, of
celebration of the mystery and majesty which is life pushing its
horizons toward oneness with the truth of mother universe. The days of
dying carry a special responsibility. There is a great potential to
communicate values in a uniquely powerful way - the person who dies
demonstrating for civil rights.
Let my final actions thunder of love, solidarity, protest - of
empowerment.
I adamantly protest the richest culture in the history of the
world, a culture which has the obvious potential to create a golden
age of science and democracy dedicated to maximizing the quality of
life of every person, but which still squanders the majority of its
human and physical capital on modern versions of primitive symbols of
power and prestige.
I adamantly protest the richest culture in the history of the
world which still incarcerates millions of humans with and without
disabilities in barbaric institutions, backrooms and worse, windowless
cells of oppressive perceptions, for the lack of the most elementary
empowerment supports.
I call for solidarity among all who love justice, all who love
life, to create a revolution that will empower every single human
being to govern his or her life, to govern the society and to be fully
productive of life quality for self and for all.
I do so love all the patriots of this and every nation who
have fought and sacrificed to bring us to the threshold of this
beautiful human dream. I do so love America the beautiful and our
wild, creative, beautiful people. I do so love you, my beautiful
colleagues in the disability and civil rights movement.
My relationship with Yoshiko Dart includes, but also
transcends, love as the word is normally defined. She is my wife, my
partner, my mentor, my leader and my inspiration to believe that the
human dream can live. She is the greatest human being I've ever known.
Yoshiko, beloved colleagues, I am the luckiest man in the
world to have been associated with you. Thanks to you, I die free.
Thanks to you, I die in the joy of struggle.
Thanks to you, I die in the beautiful belief that the
revolution of empowerment will go on. I love you so much. I'm with you
always. Lead on! Lead on!
Justin Dart
Nancy Heard
Nancy Heard, wife and long time partner of Arizona ADAPT's Ken
Heard, died this spring after a long battle with cancer. Nancy, who
was a very rare nurse who truly and deeply believed in empowerment,
met Ken when they both were working at Atlantis. She was a joyful
person who deeply valued all people's right to live free and worked in
many capacities to make that happen. She was a strong supporter of
Arizona ADAPT, traveling with Ken around the state trying to stir
things up and get folks moving. She will be much missed.
Freedom Celebration
by Crosby King
Celebrate! Judy Shipley is free! Judy moved into her own home on
May 15th. She says, "Transition is no piece of cake" but she is hanging in
and getting the job done. Freedom! Judy is not quite ready for her own
"Open House" but we want to celebrate and fold her into the family of
ADAPT. This is the very first person Maryland ADAPT has actually gotten
out. But more folks are in the pipeline to liberation! Free Our People
Incitement
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