Incitement
Volume 18 No. 1 A Publication of ADAPT
Spring 2002
ADAPT/Incitement
1339 Lamar SQ DR #101
Austin TX 78704
(512) 442-0252 V/TTY
(512) 442-0522 FAX
Incitement is produced from the offices of Topeka Independent
Living Resource Center (TILRC). Articles, letters, compositions,
displays and photos are encouraged. The Editor reserves the right to
edit or omit any material that is submitted. For more information,
contact Stephanie Thomas at ADAPT.
Topeka Independent Living
Resource Center, Inc.
501 SW Jackson St., Suite 100
Topeka, KS 66603-3300
(785) 233-4572 V/TTY
(785) 233-1815 TTY
(785) 233-1561 FAX
Segregation and the Medical Model Thrive in the Independent Living
Movement's Cradle
Unnecessary institutionalization is alive and well --
thriving, in fact -- in the heart of San Francisco! Ironically, while
the rest of the country is attempting to implement the Supreme Court's
Olmstead decision, California/San Francisco -- the very cradle of the
independent living movement -- is rebuilding a 1200 bed nursing
facility that many in the disability rights community believe violates
the spirit, if not the letter, of the Supreme Court decision.
Laguna Honda rises up from a steep, steep hillside off a
highway, a collection of 13 wings each five stories high. The
rebuilding of this nursing home was the reason over 500 activists from
across the nation gathered in San Francisco in October. Outrage over
this contemptuous act was so high folks came despite it being just
about a month after September 11th.
Tear Down the Walls
Sunday, activists traveled by subway for a rally in a small
park across the street from the massive nursing home. 1,500 folks came
despite chilly, rainy weather to share their dismay that such a
travesty is to take place. People wanted San Franciscans and the world
to know the disability community's view of this. Speakers included
representatives of many disability organizations from across the state
and the nation, and in addition a few brave souls who were waiting to
leave Laguna Honda. "I've been trying to get out for six years" said
Jessie "that's way too long to wait for your freedom!"
At the end of the rally, the participants lined up and marched
across the street, through the heavy metal gates of the nursing home
grounds and up the alp-like slopes of the drive that circles the Laguna
Honda facility. We were more than four city blocks long. The
administration had not wanted anyone on their grounds, but we felt that
those who had traveled so far, and those who cared enough to speak out,
should get an up-close look at the nursing home, which is larger than many
small towns! The march was not easy, in part because of the steep terrain,
in part because of the heaviness of the issue at hand. All along the
route, the institutional police force (their real title) stared after us,
and the assistant administrator Mr. Christmas hovered around the front,
apparently trying to pretend this was some kind of tour. We saw faces of
those who must live inside the 30 bed wards looking down, some waiving,
some looking amazed at the numbers who had come in their support. Staff
too looked down, but most looked threatened and surprised anyone would
have a problem with such a set up.
As we rounded the far side of the facility, few eyes were dry.
Ahead was a bus coming to pick up and drop off staff. On it's side was
an ad: a young boy looking out, angry and afraid; below was the
caption "abuse is a learned behavior." It was instantly clear:
"institutionalization is a learned behavior!" We must make our society
unlearn it.
Stopping at the front of the building, under a statue of
Florence Nightingale, we called for another kind of rebuilding, not of
more walls to keep our brothers and sisters locked away, but a
rebuilding of community where all are welcome and included.
Then, leaving stars and crosses and crescents in memory of
those who have been sacrificed for nursing home profits, for salaries
for institutional union jobs, for political power, we headed down the
hill.
Fighting City Hall
Monday dawned and ADAPT went straight to the belly of the
beast. The city of San Francisco is responsible for this sad
situation. Not only are they responsible for maintaining a 1200 bed
nursing facility, (over half those beds in wards with 30 people in the
same room) but although they finally plan to be tearing the building
down - they are also going to REBUILD it. EVERY progressive
politician, union, church group and others supported a $299 million
bond package to assist in the rebuilding. With interest, this bond
package will end up costing over $600 million. And the city and state
are putting in even more money, beyond financing the bond package!
EVERY disability group in the area was opposed to that bond
package BUT was ignored by these same politicians, unions, church
groups and the voting public. This, one of the wealthiest areas in the
country, is willing to spend over $400 per day to keep ONE person in
this warehouse of "caring" (over $130 million per year for these 1,200
people) WHILE AT THE SAME TIME fighting over implementing people's
right to live and receive services at less than half that cost in the
community. (This same community did not even bother to apply for all
the housing subsidies available that could give some of these
individuals a choice to live in the community.)
And leader of the pack in this effort to use the lives of
people with disabilities for other people's benefits was Mayor Willie
Brown.
Monday the group marched to the City Hall, a golden domed
building that fills an entire city block. Instead of going inside and
getting bogged down in security, ADAPT marched around the block. At
each intersection our teams blocked the streets, and using yellow
"emergency tape" marked with "Tear Down the Walls: Laguna Honda",
declared this a city emergency. In front of the two main sets of doors
teams of people blocked access.
"While we marched through the streets this week, we passed out
flyers and we talked to a lot of local citizens," said Lou Ann Kibbee,
Kansas ADAPT Organizer. "It was very apparent that when the bond issue
to rebuild Laguna Honda was on the ballot last year, voters had not
been given information on community alternatives, or even that there
was an alternative to Laguna Honda. They kept thanking us for coming
to San Francisco because now they saw that their votes were
essentially manipulated by a special interest campaign of
misinformation."
As luck would have it, this just happened to be the day for
Mayor Brown's State of the City address to the assembly and citizens
of San Francisco.
After several hours the Mayor showed up in his limo, got out
looked around outraged and drove off. But soon his minions were coming
over and he agreed to meet with representatives of ADAPT on Wednesday.
ADAPT had forced the meeting.
If this is Tuesday it must be
the State Building
The State of California is not without it's hand in this
situation. California has refused to make any real efforts toward an
Olmstead initiative, and is being sued for it. So on Tuesday ADAPT
marched to the Earl Warren State Office Building, where 500 ADAPT
activists blocked the building's front and rear entrances in addition
to the intersections. For six hours our negotiating team tried in vain
to get Governor Gray Davis to discuss community based alternatives to
rebuilding Laguna Honda, the nation's largest nursing home. The
Governor refused to discuss alternatives to institutionalization just
as he has refused to support implementing the ADA's most integrated
setting requirement.
At the back door, people were pulled from their wheelchairs
and dragged across cement. On the other side of the building, when CHP
officers blocked the ramp access to the front door, protesters slid
out of their wheelchairs and crawled laboriously up the steps. At the
top, officers repeatedly dragged some across the cement, while they
picked up others by the backs of their waistbands and plunked them
down back at the base of the steps.
"Governor Gray's refusal to negotiate speaks volumes about his
attitudes about the rights of people with disabilities," said Daniese
McMullin Powell, Delaware ADAPT Organizer. "We were willing to
compromise. The fact that he wouldn't even authorize the Director of
Human Services, or the State Medicaid Director to act on his behalf is
further evidence of his unwillingness to even consider measures to
keep California from forcing its citizens into institutional
settings."
ADAPT demanded that Gov. Davis stop providing funds for the
state match portion of Medi-Cal (California's version of Medicaid) for
people now in Laguna Honda, or at risk for admission. In addition,
ADAPT wanted the Governor to assure creation of a system where
Medi-Cal funds follow and support the person rather than being
attached to a specific institutional setting. By choosing to put
between $400-$600 million into rebuilding Laguna Honda, the city and
state are locking up millions of additional dollars in Medicaid funds
that could be used more cost effectively to support people in the
community. Tying these funds to Laguna Honda also forces older and
disabled people to live there rather than staying in their own homes
and receiving their long term care services there.
"We were willing to put ourselves in harm's way because we are
the lucky ones-we've all managed to escape places like Laguna Honda,"
said Nadina Laspina, ADAPT Organizer from New York City. "I live and
work in the shadow of the World Trade Center, and I came here to San
Francisco because as a New Yorker, I witnessed an unspeakable horror
that left me feeling violated and powerless. As a person with a
disability, I want to put an end to another horror that makes me feel
violated - the horror of Laguna Honda and of all nursing homes. For
those of us who have managed to survive and escape them, the threat of
a nursing home is truly as frightening as the threat of terrorism.
There is a better way."
In the end however, the Governor refused to back down and 115
people were arrested.
Brown Stays Solidly Behind Segregation
Wednesday was the day of the meeting with Mayor Willie Brown.
However, within moments it was clear that the Mayor had no intention
of even listening to the concerns of people with disabilities. As
Organizer Linda Anthony put it "He came in planning not to listen to
anything". He did not care that the Supreme Court had ruled
unnecessary institutionalization was discrimination. He did not want
to know about disabled people's civil rights. He even refused to
consider that the wording of the bond issue does not require
rebuilding the institution, only the funding for services for those
inside. Mayor Brown refused to even talk about community alternatives
to rebuilding city owned Laguna Honda Hospital. He just wanted to talk
about accessibility for people with disabilities and high salaries for
his institutional workers. He did not even care his city paid half the
institutional salary to community care workers and good access is
irrelevant if you are stuck in a nursing home.
San Francisco, the cradle of the independent living movement,
had made a deal with the devil: high level accessibility in certain
areas and high paying jobs for a few people in exchange for the lives
of thousands of San Franciscan who were unlucky enough to become
disabled and poor.
"Mayor Brown's arrogant manner and disregard for us said loud
and clear that he had no intention of seriously discussing the issues,
or considering people's civil rights" said Steve Verriden ADAPT
Organizer from Wisconsin. "As a person with a disability himself, we
had hoped he would be more knowledgeable about community alternatives
to warehousing people with disabilities and seniors, but he made it
clear that his only worry is for his own future political
contributions, not for the futures of the over 1000 people locked up
in Laguna Honda."
Calling a press conference afterward, those at the meeting
declared, "segregation and discrimination are alive and well, thriving
in fact, here in San Francisco."
And ADAPT Goes to the Feds
But ADAPT had one more call to make, over the heads of city
and state officials, forcing a meeting with the highest ranking
regional representative of the Department of Health and Human services
to discuss discontinuing Medicaid reimbursement for the facility's
illegal 30 bed wards.
Taking the issue to the third player, 500 ADAPT activists
marched over and blockaded the United Nations Plaza Federal Building
until a meeting was arranged with Josh Valdez, the HHS Secretary's
Regional Representative for Region IX, and Steven Derring, the Region
IX Deputy Director for the Centers for Medicare and Medicaid Services.
Valdez and Derring not only agreed to meet and discuss ADAPT's Civil
Rights complaints against Laguna Honda, but to set another meeting and
continue the dialog.
Earlier this fall ADAPT filed the complaints with the HHS
Office of Civil Rights based on the spending of state and federal
Medicaid funds on forced institutionalization of persons with
disabilities in an outrageously out of compliance structure, violating
both the ADA and the U.S. Supreme Court Olmstead decision.
The meeting with Valdez and Derring ended a week of ADAPT
protests aimed at calling public attention to the rebuilding of Laguna
Honda so funds can be redirected to community services for older and
disabled San Franciscans. While traffic around the Civic Center may
get back to normal with ADAPT's departure, ADAPT committed to support
the California disability community by continuing the fight for
community services at the federal level. Federal strategies include
pursuing the Civil Rights complaints and demanding that administration
officials enforce President Bush's Executive Order. The order mandates
that people locked away in places like Laguna Honda must be given a
choice in where they receive their long term care services by
immediately implementing the "Olmstead" decision, which prohibits
discrimination by unnecessary institutionalization.
Aftermath
As if ashamed to carry through with at least this aspect of
their treatment of people with disabilities, all charges were dropped
against the 115 arrested on Tuesday.
Governor Gray Davis, under his "Aging with Dignity"
initiative, announced on December 12th that the California Department
of Health Services had secured $27.5 million in additional funding for
county, city and special districts that operate nursing homes. This
federal funding is in addition to Medi-Cal reimbursements currently
received by these government entities and will be provided on an
annual basis. The Governor found no new funds to implement Olmstead.
With friends like those, who needs enemies?
Meanwhile the disability community has not been idle.
On December 18, 2001, the San Francisco based District Court
Judge Saundra Brown Armstrong ruled that a civil rights lawsuit, filed
by 10 Laguna Honda residents can move forward. Although Armstrong
ruled some of the claims made by the original plaintiffs must be
removed from the suit, she agreed that the case against the city,
county and state will move forward, despite the defendants' multiple
pleas to dismiss the case. The residents, represented by DREDF among
others, are claiming violations of the ADA, the Nursing Home Reform
Act, and Section 504 of the Rehabilitation Act of 1973, by not
providing community-based services for those who want to live in their
own homes instead of nursing homes and other institutions. The lawsuit
cites the 1999 U.S. Supreme Court Olmstead decision, which ruled that
"unnecessarily" institutionalizing people with disabilities is a form
of discrimination.
And in February another suit was filed by Protection and
Advocacy, to get residents of developmental centers, institutions for
people with developmental disabilities, better options for community
services and help in getting out and saying out of these institutions.
State officials concede it costs more than twice as much to keep
someone in the state hospitals as it does in the community, yet the
Governor and legislature have done little to nothing to really address
the problem.
The Coalition of Californians for Olmstead held an action
January 16th, 2002 at Governor Davis' offices in Sacramento, San Diego
and San Francisco. Over 60 people participated in person, more via
mail and telephone, to tell the Governor to follow the Olmstead
decision and make community living options a reality and not rhetoric.
They also shared their thoughts and feelings about the lack of
community resources that result in "default" nursing home and other
institutional placements:
"People with disabilities want to live in apartments and
homes. It's not right to warehouse them in nursing homes."
"I'm someone who uses attendants. There is something wrong
though when you think about the fact that my attendants are paid
little more than minimum wage. Without them I would be in nursing
home."
"I used to live in a nursing home, and I know that there are a
lot of people who would like to be here today, but they are too scared
and they don't know how to get out."
Those individuals fear of retaliation seems very real after
our ADAPT action in San Francisco. ADAPT went to raise a loud cry
against the outrageous acts of this allegedly progressive city and
state, but it will take ongoing and hard hitting efforts to get the
attention of the jack asses in charge here! In the meantime, if you do
go to visit, don't get sick and don't stay very long; things have
changed in the one- time Mecca for people with disabilities.
MiCASSA Now Introduced
in Both Houses!
MiCASSA is now S 1298 in the Senate and HR 3612 in the House
of Representatives.
As many of you may be aware MiCASSA has been having some
hurdles lately. Senator Harkin's staff person who was spearheading
work on the bill took another job just before September 11. Harkin was
getting ready to hire a new staff person when the Anthrax letters
started showing up in Congress and the Hart building (where Harkin and
Specter's offices are located) was shut down for almost 4 months!
Meanwhile, obviously the aftermath of September 11 is taking center
stage in Congress. So things were in a bit of a lull for MiCASSA!
BUT with the new year came GOOD news. Representative Danny
Davis (D- Chicago) introduced a House version on January 23!
Representative Shimkus (R-Springfield IL) who serves on the Commerce
Committee is cosponsoring the House bill HR 3612. (A lot of great work
from the Illinois folks made this happen!) Davis' people are excited
about the bill and looking forward to the challenge of getting it
passed in the House. Already the list of cosponsors is growing, and
the bill has been referred to the Commerce Committee.
If you would like to get updates on this bill, send an E-Mail
from your preferred E-Mail mailbox in the following manner:
HEADING:
To: Majordomo@tripil.com
Subject: subscribe micasa-list
BODY: subscribe micasa-list
Addresses that do not work will be removed.You must subscribe again to
the list server if you move your E-Mail mailbox.
What Can You Do to Help?
Even with all that is happening about national security and
the war, we must keep up the push for MiCASSA and Real Choice. The
bill will not become law and the issue will not move without our help.
Now would be a great time to contact your Senators and Congress people
about MiCASSA and urge them to sign on as supports of the bill.
Now is the time to meet with your US Senate and Congressional
Representatives and urge them to support MiCASSA and sign on as
cosponsors. If you are nervous, go with a group of others. You can
split up the points you want to make and give each other moral
support.
Organize a MiCASSA party and have a group meet somewhere to
write letters to your Senators and Representative urging them to
cosponsor the bill. If folks can't write, pair them up with someone
who can.
The address to write Senators is:
The Honorable (full name)
United States Senate
Washington, DC 20510
The address to your Representative:
The Honorable (full name)
United States House of Representatives
Washington, DC 20515
MiCASSA's House Cosponsor List
Continues to Grow!
What's up with your Congressional Representative?
Sponsor: Rep Davis, Danny K. (introduced 1/23/2002)
Cosponsors (31), By date
Rep Shimkus, John - 1/23/2002 (R- Springfield, Collinsville, Centralia IL)
Rep Hoeffel, Joseph M. - 2/13/2002 (D - Norristown, PA)
Rep Underwood, Robert A. - 2/13/2002 (D - Hagatna, Guam)
Rep Lee, Barbara - 2/13/2002 (D - Oakland, CA)
Rep Rush, Bobby L. - 2/13/2002 (D - Chicago, Evergreen Park, IL)
Rep Woolsey, Lynn C. - 2/26/2002 (D - Santa Rosa, San Rafael, CA)
Rep McHugh, John M. - 2/26/2002 (R - Watertown, Plattsburgh, Johnstown, NY)
Rep Doggett, Lloyd - 2/26/2002 (D - Austin, TX)
Rep Kildee, Dale E. - 2/26/2002 (D - Flint, Pontiac, MI)
Rep Faleomavaega, Eni F. H. - 2/26/2002 (D - Pago Pago, American Samoa)
Rep Owens, Major R. - 2/26/2002 (D - Brooklyn, NY)
Rep Ryun, Jim - 3/6/2002 (R - Topeka, Pittsburg, KS)
Rep Norton, Eleanor Holmes - 3/6/2002 (D - Washington, DC)
Rep Clay, Wm. Lacy - 3/6/2002 (D - St Louis MO)
Rep Mascara, Frank - 3/6/2002 (D - Washington, PA)
Rep Lynch, Stephen F. - 3/20/2002 (D - Boston, Brockton, MA)
Rep Hall, Tony P. - 3/20/2002 (D - Dayton, OH)
Rep Baldwin, Tammy - 3/20/2002 (D - Madison, WI)
Rep Norwood, Charlie - 3/20/2002 (R - Augusta, Milledgeville, Dublin, GA)
Rep Brady, Robert - 3/20/2002 (D - Philadelphia, Chester, Darby Township, PA)
Rep Gutierrez, Luis V. - 3/20/2002 (D- Chicago, IL)
Rep Lofgren, Zoe - 3/20/2002 (D - San Jose, CA)
Rep Cummings, Elijah E. - 3/20/2002 (D - Baltimore, Cantonsville, MD)
Rep Tubbs Jones, Stephanie - 4/10/2002 (D - Shaker Heights, OH)
Rep Coyne, William J. - 4/10/2002(D-Pittsburgh, PA)
Rep Hoekstra, Peter - 4/10/2002 (R - Holland, Muskegon, Cadillac, MI)
Rep Clement, Bob - 4/10/2002 (D - Nashville, Springfield, TN)
Rep Brown, Sherrod - 4/10/2002 (D - Elyria & Medina OH)
Rep Schakowsky, Janice D. - 4/10/2002 (D - Chicago, Evanston, Niles, IL)
Rep Doyle, Michael F. - 4/10/2002 (D - Penn Hills, McKeesport, PA)
Rep Miller, George - 4/10/2002 (D - Concord, Richmond, CA)
As of 4/16/02 the Senate Cosponsors are:
Sponsor: Sen Harkin, Tom (introduced 8/1/2001)
Cosponsors (7) :
Sen Specter, Arlen - 8/1/2001 (R -PA)
Sen Biden Jr., Joseph R. - 8/1/2001 (D - DE)
Sen Clinton, Hillary Rodham - 8/1/2001 (D - NY)
Sen Kennedy, Edward M. - 8/1/2001 (D- MA)
Sen Cochran, Thad - 9/10/2001 (R- MS)
Sen Stabenow, Debbie - 9/10/2001 (D-MI)
Sen Landrieu, Mary L. - 9/19/2001 (D-LA)
The time is ripe for getting your Senator to cosponsor this landmark
legislation!!!!
Other New Freedom Initative
Budget items include requests for:
Increase of $7 million or 11% for the Centers for Independent
Living. [DOEd]
$145 million in new transportation funding: $100 million for a
competitive grants for more work transportation services and $45
million to fund a demonstration pilot on innovative solutions to
transportation barriers for disabled persons.
$1 billion funding for IDEA grants to states (DOEd).
$20 million increase for the state administered IDEA Part C program
providing early invention services for infants to toddlers, ages birth
through 2. (DOEd)
Increase of $3 million to total $8 million in FY 2003 for the
Youth-To-Work Grant Program in the Department of Labor to provide
capacity building to youth programs and the High School/High Tech
Programs to prepare more young people with disabilities for employment
and independence by helping them earn a high school diploma,
participate in vocational training or education, and learn daily
skills such as budgeting, career planning, and securing housing and
employment.
24 percent increase ($9 million) in funding for the Department of
Labor's Office of Disability Employment Policy to ensure that
individuals with disabilities have opportunities to participate fully
in the workforce.
$30 million for incentive grants to states for performance-based
rewards to vocational rehabilitation agencies. Budget also requests
an additional increase of $130 million for DOEd Vocational
Rehabilitation State Grants program.
Through the Olmstead Community Employment Initiative [funded at $8
million in FY 2002 and requesting an increase of $5 million in FY
2003], DOL will develop and implement a coordinated strategy to meet
the employment and training needs of people with disabilities who are
at risk of institutionalization, and who are transitioning from
institutions into the workplace and the community. [DOL/ODEP]
FY 2003 Federal Budget Requests
Related to Olmstead
The following is list of budget items from the White House
related to disability. There are some good pieces here that deserve
credit. However, here too, as in the President's Executive Order and
Draft Report, there is a disturbing tendency to throw anything
disability related into the Olmstead pot. One result is to make it
look like more is happening. Another possible outcome is to so
overload expectations for Olmstead efforts that nothing ever actually
gets accomplished.
The President's FY 2003 budget includes $14 million, $8
million in mandatory funding in Medicaid and $6 million in CMS/HHS
budget responding to the Executive Order and Access to Community
Living report. These actions represent a commitment of $216 million in
funding over the next 5 years and $750 million over 10 years:
Propose creation of a 10-year home- and community-based
services demonstration as an alternative to Medicaid-funded
psychiatric residential treatment centers, allowing states to set up
community-based alternatives for children. [HHS]
Initiate a national demonstration designed to address
workforce shortages of community service direct care workers. [HHS]
Conduct a national demonstration to allow states to include
respite care for adults as a fixed budget demonstration. [HHS]
Implement and evaluate a 10-year demonstration providing
essential relief to caregivers of children who have substantial
disabilities. [HHS]
$15 millibased rental vouchers.
NIDRR Report on Medicaid Home
and Community Based Services
by Bob Kafka
The National Institute on Disability and Rehabilitation
Research, NIDRR, has just released a Disability Statistics Report -
Report 16, October 2001, "Medicaid Home and Community-based Services."
It has a lot of useful information in an understandable format that
compares various programs, populations and their usage of the Medicaid
home and community-based system. Below is information taken from this
report.
To order a copy write to:
NIDRR
US Department of Education
Washington, D.C. 20202-2646
Medicaid 1915 (c) Waivers - 1997 Information
Total number of waivers - 211
Total number of participants - 561,510
Total Amount spent - $7.87 billion
Per Capita spent- $14,016
Breakdown on the 211 Waivers
Category -- # of waivers -- Total # of Participants -- Total Spent --
Per Capita Spent -- % of Total Participants -- % of Total Funding
MR/DD -- 75 -- 216,570 -- $6.03 billion -- $27,859 -- 38.5% -- 76.6%
Aged/D -- 43 -- 235,215 -- $1.267 billion -- $5,388 -- 41.9% -- 16.1%
Disabled/PD -- 27 -- 25,704 -- $233.7 million -- $9,092 -- 4.6% --
3.0%
Children -- 20 -- 3,072 -- $61.65 million -- $20,067 -- 0.5% -- 0.7%
Aged/E -- 17 -- 65,696 -- $181.3 million -- $2,760 -- 11.7% -- 2.3%
AID/ARC -- 15 -- 13,254 -- $48.1 million -- $3,633 -- 2.3% -- 0.6%
TBI -- 12 -- 1,373 -- $40.1 million -- $29,192 -- 0.24% -- 0.51%
MH -- 2 -- 626 -- $4.61 million -- $7,363 -- 0.11% -- 0.05%
Complaints Growing at OCR
Sara Rosenbaum, of the Center for Health Services Research and
Policy of the George Washington University School of Public Health law
and policy at George Washington University, Washington, D.C., spoke at
the Family Caregiver Alliance conference in San Francisco in October
2001. Rosenbaum and colleagues reviewed more than 200 ADA-related
(Olmstead) complaints to the U.S. Office for Civil Rights (OCR) in the
Department of Health and Human Services during, just before and after
the Supreme Court decision.
Rosenbaum reported the following findings regarding the
complaints:
Complainants were from all regions of
the United States.
60% needed housing and in-home care
service and support.
43% of the complaints were from
individuals,
33% from advocacy groups,
16% from family members.
25% were on behalf of adults ages
22-50,
14% children and infants,
9%, those ages 51-64,
and 5% those 65 and older.
Two out of three complaints were by
institutionalized people, of whom more
than two-thirds were in nursing or
psychiatric facilities.
18% of those filing complaints have a
combination of disabilities.
Physical disability was most dominant
among adult complainants.
Mental illness was the main disability
among those under 21.
As reported in the latest Aging Today from the American Society on
Aging
http://www.agingtoday.org
New Yorkers Unite with Lady Liberty in Albany
Albany - Fed up with over a year of broken promises and lack of action
from state leadership, the hundreds of attendees of a New York State
Independent Living Council conference on February 7, 2002 took over
the lobby and elevators at the Department of Health Corning Tower in
the Albany Capitol Complex. One reporter likened it to a Blitzkrieg as
the two columns of people swept through the concourse through the
doors and past security. "We went for the elevators. We're taking up
space until we get what we want," said Chris Hilderbrant.
Demanding a meeting with Health Commissioner Antonia Novello,
activists called for the state to help one percent, or about 1,300
disabled people (of all ages) move into the community in private homes
or apartments, and the state apply for a Medicaid waiver to help
accomplish that and expand existing community based programs..
The protesters included people from independent living
centers, ADAPT groups, and other disability groups from across the
state. In addition senior advocates were there too. "We are thrilled
to be part of what we believe is a historic coalition between senior
and disability groups to implement the Olmstead decision," said Greg
Olsen, director of the state Coalition for the Aging. "The state
should not be taking people's freedom away just because they had an
accident, survived a crime, have a disability or," said Bruce Darling,
an ADAPT organizer.
The groups criticized the state for not initiating any
planning process despite the fact $50,000 has been allocated, and for
not developing a Medicaid waiver plan.
Unable to meet with Novello, representatives of the group
agreed to meet with David Wollner, Gov. George E. Pataki's assistant
director of state operations-health and Medicaid. However, apparently
living up to the Pataki administration's reputation for not following
through, Wollner failed to show.
That did not stop the protesters though, and more resolved
than ever, they marched to the Capitol building where the Governor has
his office. Capitol police tried to stop the group by turning off the
elevators, but eight people made it up - by elevator, and by crawling
or being carried up the steps to the Governors War Room. They promised
to stay until they got a meeting or got arrested. The rest of the
group rallied in the Concourse below and held a press conference. At
11:00pm Capitol Police moved in and arrested the eight for trespass,
ticketed and released them to the remaining group. However, the jig
was hardly up!
Members of the group met Thursday with the staff of
Assemblyman Kevin Cahill, D-Kingston, who heads the People With
Disabilities Task Force. In response to their complaint that the
Health Department hasn't done enough to help elderly and disabled
people integrate into mainstream society and stay out of nursing
homes, Cahill said he will introduce a bill within a week to require
the state to comply with terms of the U.S. Supreme Court's Olmstead
decision, in particular to develop a master plan for services for
people with disabilities.
Not three days later Gov. George Pataki had the misfortune of
scheduling a news conference in Henrietta, just outside Rochester, to
discuss senior prescription drug coverage. ADAPT attended and demanded
that the governor do more to assist senior citizens and those with
disabilities to live at home insteaading in the opposite direction.
Last summer Governor Ryan, disregarded the voice of nearly every
disability rights organization in Illinois and allocated millions of
dollars to construct a new institution, called Marklund, that will
confine 64 individuals with developmental disabilities on a rural,
isolated campus in Geneva Illinois. (Sound familiar?) Furthermore,
this past fall when documented abuse and neglect at the Lincoln
Developmental Center became so severe the Feds planned to decertify
the institution and withdraw $17.5 million in federal funding, the
State still refused to close the institution.
Over a year ago, the state asked for input from people with
disabilities, and wonderful recommendations were submitted. However,
since then the state has taken no action, while allocating $40 million
to bail out the nursing home industry last year, not one dollar to
meet these recommendations and implement Olmstead. Well over 80% of
all funding goes to nursing homes and institutions. An excellent
study by Tom Wilson at Access Living in Chicago tracked political
campaign contributions made to State representatives and documented
over $600,000 that came directly from nursing homes and went into the
pockets of politicians. Michael Madigan led the pack; he has
absolutely refused to meet with our coalition and talk about Olmstead.
Protesters were demanding that Illinois implement Olmstead
now; not spend any money on institutions like Marklund or other
segregated settings and shut down the Lincoln Developmental Center;
more funding for consumer controlled, integrated housing; a wage in
Costs Major Focus of Governors' Meeting
At their winter legislative meeting this year, the National
Governor's Association, NGA, demanded that Congress and President Bush
immediately act to slow the explosive growth of Medicaid, which they
say is eating up all the additional revenues states had collected in
recent years. "It's a major crisis," said NGA, vice chairman Gov. Paul
E. Pathe Medicaid program, is creating a situation in which states are
faced with either making massive cuts in programs or being forced to
raise taxes significantly." Prescription drugs are one of the fastest
rising costs in Medicaid, with many states seeing 20% rise that area.
Medicaid helps pay for two-thirds of nursing home residents,
and it is, after education, the largest program in most state budgets.
State revenues were stagnant or declined in many states last year.
The Governors want the federal government to pick up a larger
share of the costs for Medicaid, at least for some elderly and
disabled people. But federal officials are reluctant to assume more of
the cost because, like state officials, they foresee rising costs as
baby boomers grow older.
Missing from their plan is an obvious, from the disability
perspective, piece of the solution, namely the Medicaid Community
Attendant Services and Support Act, MiCASSA! One wonders what it will
take to get their attention.
Michigan Gov. John Engler told the New York Times states were
particularly concerned about 7 million elderly and disabled people
eligible for both Medicaid and Medicare.
One suggestion they made was to allow states to increase the
Medicaid co- payments for drugs and services. Another was to
expanderal government pays an average of 57% of Medicaid costs, it
covers 100% of Medicare.
Housing Round Up!!!
Visitability Victories
The long hard work of local advocates has paid off again!!
This winter Visitability ordinances passed in Tucson (Pima County) AZ
and in Naperville IL (a city of about 150,000 near Chicago). These
ordinances cover all housing, not just housing built with public
assistance. Although the Naperville ordinance does not yet include a
level or ramped entrance, local advocates expect that to be added
later this year. Visitability is basic access to housing, with
doorways and halls wide enough to be maneuvered in a wheelchair and
electric controls, switches and outlets reachable by a seated person.
These recent victories have gotten quite a bit of media, which
may help spreading the idea and the reality of basic access to other
parts of the nation.
In addition, last fall thtowards statewide legislation.
For more information contact concretechange@yahoo.com
Access Living Files Complaint Against
Designer & Architect Alledging FHA Violations
CHICAGO - Access Living of Metropolitan Chicago and the U.S. Attorneys
Ofst the Park Evanston Apartments for violating accessibility
requirements for newly-constructed buildings under the Fair Housing
Act Amendments of 1988 (FHAA). The Park Evanston, in Evanston,
Illinois, is a 24-story residential building with 283 apartments,
which should all be accessible, but are not.
Passed over10 years ago, the FHAA was intended to ensure that
people with disabilities have equal access to common areas and
individual units of newly constructed residential buildings. When
housing remains inaccessible, people with disabilities are
unnecessarily forced into institutions and nursing homes. Complying is
straightforward, results in little to no additional costs and opens up
housing choices to people with disabilities who, according to the U.S.
Department of Housing and Urban Development, suffer from the nations
worst-case housing needs.
EXTRA, EXTRA! Read All About It! HUD Fails to Enforce Laws!!
To misquote Inspector Ranier of the movie Casablanca: "I'm
shocked, absolutely shocked to find lack of enforcement by HUD..."
The National Council on Disability issued a major report this
winter, detailing the findings of their investigation into the
Department of Housing and Urban Development, HUD, and it's enforcement
of housing civil rights laws like Section 504 of the Rehabilitation
Act of 1973, and the Fair Housing Amendments Act of 1988. They found
enforcement poor, different in different parts of the country, and
getting worse as the years passed.
The Council found that, by 2000, people with disabilities had
become the largest group filing housing discrimination complaints with
HUD - accounting for 42 percent of all claims. Yet, HUD ruled out
discrimination in all but 2.4 percent of more than 12,000 complaints
between 1988 and 2000. By 2000, HUD was taking an average of nearly
14 months - more than four times the 100 days prescribed by law - to
complete its investigations. The most common type of discrimination
complaint was regarding failure to provide reasonable accommodations.
HUD claims to want to turn this around, and told the
associated press the share of cases over 100 days old already has
dropped to 40 percent of all types of cases in 2001 from 85 percent in
2000.
But the proof is in the pudding. HUD has made some important
improvements in its budget requests, but at the same time was the very
worst section of the Report issued in response to the President's
Executive Order on Olmstead. Most of the housing rights enforcement
included there was to be done by the Department of Justice;
enforcement of 504 was more cheer leading than anything.
The report has lots of good information and is well worth
reading. To get a copy on the Net: National Council on Disability:
http://www.ncd.gov
We Have the Tickets
and a New Website, Too
The Ticket to Work program is under way, and there's a new
website to help explain how the tickets work.
The program offers people with disabilities the services they
need to help them go to work. Best of all, the services are free!
Right now, Social Security is in the process of sending tickets to 2.4
million people who get disability benefits. The 2.4 million tickets
are being mailed out to people in the first 13 states during the next
five months. By January 2004, tickets will be available in all 50
states, American Samoa, Guam, the Northern Mariana Islands, Puerto
Rico and the Virgin Islands.
If you'd like to know more, get moving to the new website!
http://www.ssa.gov/work/Ticket/ticket_info.html
ADAPT's Freedom Day Targets HUD and Results in Olmstead Vouchers
As we work on the issue of freeing our people from nursing
homes and other institutions, we continue to find that while we are
making some slow but steady progress in the area of support services,
housing is becoming a major barrier. Without housing it is mighty hard
to access services, housing providers seem not to get the disability
perspective on access and integration in housing, and to make matters
worse, there is a shortage of affordable housing in most parts of the
country.
Conversations with HUD have elicited a lot of "um hum, ah hah,
uh huh, I see, yes, yes, uh huh..." but that is about it! Nodding
heads and concerned looks just don't open housing opportunities for
our folks. When HUD Secretary Mel Martinez met with ADAPT
representatives last year he was less than engaged.
In addition, HUD has done almost nothing to proactively take
steps to implement the Olmstead decision and has taken a
"stonewalling" position in response to President Bush's Executive
Order issued June 19, 2001 directing Federal agencies to review their
programs and services to assure they are provided in the most
integrated setting. Their part of the Report that came out in December
is probably the weakest part of all! And they appeared to have
abandoned their commitment to providing at least some vouchers for
people getting out of nursing homes and other institutions.
So when ADAPT made plans for Freedom Day this year, there was
little need to discuss targets, HUD needed a prod!
Across the nation, on January 15th, ADAPT groups took our
issues to HUD offices, to push the issue at the local and national
levels. Salt Lake met with the Director who in turn called the
"Presidential Appointee" Region VIII person and gave him the demands.
Connecticut ADAPT also met with their HUD staff, twice, to get the
demands faxed in to HUD Secretary Mel Martinez. Chicago and Kansas
ADAPTs also met with their respective HUD officials, with whom they
have been dealing for some time now.
Baltimore's small but dedicated band opted for the
street-visible "HUD-Next Door" easy access customer service lobby; TV
cameras rolled, flyers were distributed and the Community
Buildervinced them to speedily fax the demands to Martinez's office,
and set a meeting to discuss the issues in greater depth.
Chris and Suzanne Colsey and the rest of Tennessee ADAPT
delivered, taking the Memphis HUD office staff from excuses to a photo
op by the fax machine when our demands were sent. Over 40 from
Rochester ADAPT got rowdy in Syracuse with ten local people, hanging
signs in the windows and chanting; HUD started by calling the cops but
ended by faxing the demands. Meanwhile down in the Big Apple, the HUD
Regional Office, is located pretty close to ground zero, but the NYC
delegation of nine made it past the checkpoints and closed streets
into HUD while phone calls from others poured in; at first welcomed,
they were suddenly joined by the police - but in the end HUD staff
faxed the demands. Sixty Coloradans, even some from a little mountain
town, joined Denver and Boulder ADAPT folks to deliver our message to
their HUD Regional office, and despite a brand new boss their
officials were also finally convinced to meet and fax the demands to
Secretary Martinez!
West Virginia ADAPT joined western Pennsylvania ADAPT, 50
strong, and marched from the Greyhound station in downtown Pittsburgh
to the HUD offices where they met with the area director and also had
their message sent to the National HUD offices. Milwaukee and Madison
ADAPTers met on the frozen street outside HUD's offices in Milwaukee
and piled into the HUD offices, as everyone else was out to lunch;
they too succeeded in getting the demands set up and getting a meeting
as well.
In warmer Texas, 20 Austin ADAPT folks caravanned down to our
"local" HUD office in San Antonio; initially stopped in the lobby by
the guards, ADAPT eventually made it upstairs for a meeting with the
Regional Director and faxing of ands. Out in the West Texas town of El
Paso, (as the Marty Robins song goes) Desert ADAPT was not deterred by
the lack of a HUD office locally; instead they went to their Housing
Authority which happily faxed their message "Boogie on Down the
Olmstead Road" and the demands!
"Meet me in St Louie," was the song on the lips of ADAPT as
they went to their HUD office and met with their local official to get
the demands faxed to national and to file a complaint about some local
housing that is run like an institution.
Philly PA, Delaware and DC-Capitol Area ADAPT did it up big at
their regional HUD office in Philadelphia, which is located above a
department store; bringing in mattresses for a potential overnight
surprised these stubborn HUD folks who tried fast talking, sweet
talking and double talking (as well as calling the cops) before they
finally were forced to send the demands and set up a follow up
meeting.
What was number one on the demands faxed in from around the
country? A thousand new vouchers for the next five years to help folks
transitioning out of nursing homes and other institutions. When the
President's budget came out, there was funding for a thousand new
vouchers to help people transitioning out of nursing homes and other
institutions.
Stuck in costly Medicaid funded Nursing Facilities only because they
need affordable, accessible housing, here's what some folks have to
say:
- - "I need an accessible apartment so I can leave here and live near
my kids. They need me more and more these days. While I'm stuck here,
I just can't be there for them."
- - ADAPT activist Robert Williams, 42, an involuntary resident of a
Towson nursing facility, was a mechanic before a spinal cord injury,
and he wants to return to the community to help raise his children.
"Those places are no place for young people with so much to offer. We
want to live where others live and work and pay taxes. Now, the lack
of affordable, accessible housing is the biggest barrier to people
trying to get out of nursing 'homes' into their own home with
community based services."
- - Tex Wiley, another ADAPT activist, lived for years in a nursing
facility and, at 38 years old, had a hard time getting out because of
housing.
PAIR: Not a Duet, a Lewd Remark nor a Fruit!
It's the Protection and Advocacy for Individual Rights. PAIR
is a national program established in 1993 by Congress under the
Rehabilitation Act to protect and advocate for the legal and human
rights of persons with disabilities. It's an important resource for
legal and system advocacy you can use for people with disabilities.
Some examples of ways PAIR might help you are:
1. Accessible, affordable, integrated housing.
2. Accessible, integrated public transportation.
3. Community integration - Olmstead implementation in nursing homes.
4. Other accessibility issues, ADA enforcement, Air Access
5. Community organizing.
6. What your local disability community considers important.
Although PAIR is funded at a lower level than some of the
other protection and advocacy (P&A) programs like PADD (for people
with Developmental Disabilities) and PAIMI (for people with mental
illness), or the new Brain Injury P&A, it's funding has grown a whole
lot in the last few years. Congress has allocated about $15.2 million
dollars in FY 2002 under PAIR (Protection and Advocacy for Individual
Rights). Each state is allocated hundreds of thousands of dollars (for
exact amounts in each state check out these websites:
www.protectionandadvocacy.org and www.stevegoldada.com.
If your P&A is not doing what you think is important with
their PAIR funds you can advocate with the staff and even the board of
directors. They must set priorities and get input from the community
about those priorities.
Contact for Accessible
Transportation Problems
On November 5, Michael A. Winter started as the Director of
Civil Rights for the Federal Transit Administration (FTA) Perhaps the
first person with a visible disability to serve in this capacity,
Winter has advocated for accessible transportation in many venues for
years.
To contact him:
Michael A. Winter, Director Office of Civil Rights
Federal Transit Administration
U. S. Department of Transportation 400 7th Street, SW Room 9100
Washington, DC 20590
Phone:(202) 366-4018 e-mail: michael.winter@fta.dot.gov
Around the Nation
Shutting Down Nursing Home Beds
All Politics is Local!
By Dale Block
Jackson Co. WI -- Need to share a success story! I found out
that the private owned nursing home was sitting on 32 empty beds,
waiting to fill them. Wisconsin ADAPT worked with the County Health
and Human Services Dept. and the State to get these empty beds turned
over to the County. It worked! Jackson Co. is using them for home and
community services. Our waiting list is temporarily ended.
Home Care Cut Protested
Madison, WI -- About 400 disabled and elderly people and their
supporters protested in the State Capitol rotunda October 3rd against
the governor's vetoes of funding that would have allowed more disabled
and elderly people to remain in their own homes or live in other
community settings. 1,398 people on waiting lists would have gotten
services not for the veto. Protesters set up two boxes, the large one
labeled "Nursing Home" was covered play money, and the much smaller
box labeled "My Own Home" had a single dollar bill on top. Some
protesters signs said "McCallum did a flip-flop on CIPCOP," because
although the Legislature had added funding for the Community Options
Program and the Community Integration Program, Gov. Scott McCallum
vetoed about $8.5 million for the programs. When challenged about the
veto the governor had said "whiners" should stop complaining about
cuts since the state was in tight budget times.
Educating the Educators
in Western PA!
by Kathleen Kleinmann
and Laura Glozier
The Army of ADAPT of PA rose to support students with
disabilities in PA. 75 ADAPT members hit the Pennsylvania Department
of Education on Friday, October 26, 2001. At the front of the crowd
were angry ADAPT parents and kids who were getting a raw deal from
their local school district. Flagpole Mom Dee Lesneski and Max were
with ADAPT. (Max had still did not have resolution to the issues that
drove Dee to tie herself to a flag pole at the local elementary school
for 19 days and nights.) We had many examples around the state of
other discrimination that was unresolved after repeated attempts to
make complaints.
ADAPT of PA had a heated meeting with Secretary of Education
Zogby and Director of Special Education Warkoski. Issues discussed
included that students with disabilities were: segregated and
unserved, sent home as soon as they arrived at school, disciplined for
friendships with non-disabled students; and unqualified classroom
aides and no interpreters for hearing impaired children.
In the end the Secretary of Education committed to ADAPT that
he would work with ADAPT of PA to improve compliance with federal
laws. In addition he agreed to: monitor on-site, without prior
notification and with an ADAPT member present; face-to-face and
on-site telephone interviews with parents; investigate the use of
special education funding for segregated facilities; conduct on-site
visits to schools to verify full implementation of corrective actions;
set standards for paraprofessionals; withhold funding to school
districts that don't provide agreed to IEP services or comply with a
State plan of correction. For more information contact: Laura Glozier
e-mail address: casaglozier@alltel.net
Disabled Student
Uprising in Cleveland
Cleveland Ohio -- Cleveland State University students, upset
because the university refused to discuss building wheelchair ramps or
Braille signs, held a rally in late August 2001 to call attention to
the University's discrimination against students with disabilities.
University officials requested about $1 million from the state for
disability-related projects for 2002, including ramps and signs, but
said they were in compliance with the Americans with Disabilities Act.
"In order for me to get into the main classroom building, I have to
wedge my chair in between the door, pushing the weight of my chair
against a door," one protester told the Cleveland Plain Dealer, "and
clearly University Center does not have an accessible ramp in front of
the building." The CSU students are not satisfied with the
University's response and are seeking support from the community. To
find out more you can e-mail them at: MBaker2013@aol.com or check out
their website http://www.csuohio.com
ADAPT Confronts Secretary of HHS Tommy Thompson
by Bobby Coward
and Nan Hildebrand
25 ADAPT activists from Capitol Area ADAPT protested with
signs, flyers and chants in front of the door of the Woodbine Nursing
Home where Health and Human Services, HHS, bigwigs and Nursing Home
fat cats partied and carried on about how much more money nursing
homes needed for quality care. Tom Scully, Administrator of CMS was
announcing a new data collection program to help the consumer
community pick quality nursing homes. It looks like the beginning of a
serious campaign to fatten the nursing home pork barrel.
The nursing home industry arrived in black limousines and SUVs
with dark windows and came over to tell us that they were doing their
best, and didn't we think quality in nursing homes was important.
Bobby Coward, Judith Treesburg and Dave Burds of Capital Area
ADAPT made it into crowded meeting and had a chance to ask some hard
hitting questions. They heard Scully say that he was up all night
answering the thousands of e-mails he had from ADAPT members and
others throughout the country protesting the focus HHS has on nursing
homes. The three distinctly heard Secretary of HHS Tommy Thompson say
that nursing home quality was his and HHS' top priority. Outside,
ADAPT split up in the circular driveway to make sure we caught Tommy
Thompson's attention as he left, and we got out to talk face to face.
He insisted that we misheard his statement in the meeting, but he
wanted us to agree that nursing home quality was important. We said
COMMUNITY FIRST! is the way to improve quality in the life of a
disabled person.
Jerry's Orphans
Won't Stay Home!
Jerry Lewis single-handedly did it again! Lewis, who has
repeatedly outraged activists with frequent offensive comments and his
"pity" approach to raising money on the telethon, has drawn renewed
fire recently for responding to telethon protesters in an interview on
CBS by saying, "If it's pity we'll get money. . . . Pity? You don't
want to be pitied because you're a cripple in a wheelchair? Stay in
your house!"
The Labor Day Anti-Telethon, or Stop Pity, protests were held
in more than a dozen cities including Denver CO, Washington DC,
Chicago IL, Atlanta GA, Charleston SC, Salt Lake City UT, western
Massachusetts, northern California, southern California, and other
communities as well.
Unbelievably, Gallaudet University hosted the annual "Jerry
Lewis MDA Telethon" in the DC area. About 60 people, from a wide
variety of organizations, protested in front of the conference center
at Gallaudet. Bobby Coward, Capital Area ADAPT spokesman, said it was
insulting that Mr. Lewis' telethon raises money using pity for the
disabled. The "pity-method" mars people with disabilities efforts to
become and be perceived as productive members of society, Coward told
the Washington Times. "It sets the disabilities movement back to a
time when Americans didn't understand that being in a wheelchair
doesn't mean being in a steel prison. We need to show people that many
of us lead useful lives and contribute to society," he said. Chris
Kaftan, president of the student body government at Gallaudet and one
of the rally's speakers, said, "Jerry Lewis attracts people, but by
using the wrong method.... People that are disabled are not to be
pitied. We've been through a lot, but we don't need to be pitied."
In Los Angeles, protesters went to the CBS Studios on Beverly
Blvd. for an all day event making and carrying signs, and handing out
hundreds of flyers. They also held a press conference to denounce the
telethon and Jerry's paternalism and disability hatred.
LA ADAPT Activists
on the Move
by David Howell
and Lillibeth Navarro
LA ADAPTers blocked the Board of Supervisors exits inside the
building until officials agreed to talk. Our goal was a pay raise for
PCAs, and we got 'em one! Fifty got busted in the course of the
action, and two, Lillibeth Navarro and Audrey Harthorne, went through
an entire jury trial. Members of the Korean Disability Association of
Southern California, headed by Chuck Shin, showed up in court to show
solidarity with their compatriots.
At another action Not Dead Yet of LA was on hand to question
the handling of the case of Efren Saldivar, was arrested on suspicion
of giving fatal injections to six patients at the Glendale Adventist
Medical Center.
We Will Ride
in the Beehive State
by Barb Toomer
ADAPT UT protested during the Olympics against the local
transit authority because paratransit rates were raised 150% and the
paratransit passes 280%. "They have always kept the prices the same
across the bate everyone who can ride the mainline (rather unfair to
eliminate those who MUST ride the paratransit)," Barb Toomer said, "we
feel it is a real threat and will leave those we get out under
Olmstead "confined" to their homes because of the lack of money to
access transportation."
"We even went back to the old days and stopped the Trax trains
for an hour, just to let them know we still could!" one of the
activists added with a wink!
Paratransit Protest
in Rochester
by Bruce Darling
On December 4, 2001 at 4:00 PM, disability rights activists
protested outside the Monroe County Office Building demanding the
County withhold funding designated for Rochester Genesee Regional
Transportation Authority. Disability advocates are already suing
R-GRTA for its poor service. Protesters hoped to demonstrate the dire
impact that the fare increase proposed by the Transit Authority would
have on people with disabilities. "The [dollar-and-a-half] fare
increase is really dire," said John Blevins. "Frankly it looks like
retaliation."
Protesters targeted William Nojay, Chair R-GRTA Board of
Commissioners since he can settle the lawsuit and improve
transportation. In addition, advocates were angered by Nojay's
disrespectfulness at a recent the R-GRTA public hearing, where he
goaded speakers and unplugged the microphone during a speaker's
testimony.
After the protest, people attended the County Transportation
Committee, which opened its forum up on this issue. The County
provides over half of the Lift Line budget. "Under the ADA, the County
has an obligation to assure that the entities it funds do not
discriminate on the basis of disability," said Darling. "Now that a
Federal Judge has determined that R-GRTA is not complying with the
law, it is up to the County to do its part." Although the Committee
had asked R-GRTA to come to the meeting and answer questions,
officials refused to appear. Advocates pressed the County to withhold
R-GRTA funding and explain the rationale for some of its proposed
changes and new policies, which some consider to be retaliation for
filing the lawsuit.
Atlanta's Transit Service Sued for Access Denied
by Mark Johnson
and Lisa Lilienthal
A class action lawsuit filed November 2001 is the first formal
action taken against the Metropolitan Atlanta Rapid Transit Authority,
MARTA, for ADA violations. The six plaintiffs in the class action suit
allege consistent, blatant discrimination against MARTA riders with
disabilities.
A group of riders, with mobility and visual impairments,
reported to the Disability Law and Policy Center their daily
experiences with inaccessibility on MARTA. The results showed a
consistent, serious pattern of discrimination including failures to:
make information available in accessible formats and technology; train
personnel to serve people with disabilities respectfully and
courteously; maintain wheelchair lifts and other access features of
the vehicles; announce transfer points, major intersections and
destinations, particularly when requested; provide comparable
paratransit services; and also failing to have a good backup system
when equipment doesn't operate correctly.
"I have used MARTA for nearly 12 years, and I am constantly
frustrated by my encounters with vehicles that don't have lifts or
have inoperable lifts," said Bernard Baker. "I joined the Elderly and
Disabled Accessibility Committee because I thought I could make a
difference, but it is clear to me that MARTA's leadership is not going
to bring about change on their own."
Poor Access at Arby's Prompts Protest and Boycott
by Shona Eakin
December 2000, I went to a local Arby's for lunch. I found no
accessible parking, an unmanageably steep ramp at the only "accessible
entrance" -- in the drive thru. I went inside anyway because I needed
to use the restroom, but there was absolutely no way my wheelchaihroom
door, it became crystal clear that there was no way she was going to
be able to adequately assist me. Trying to enter I fell to the floor,
and was forced to crawl from that point to the stall. When finished, I
could only crawl back to my chair.
The manager acted appalled by my experience. We corresponded
concerning the issues and he forwarded all of my concerns to the
corporate office in Georgia. Corporate wrrds, over a storm drain.
Fellow Erie ADAPT members' letters were also basically
ignored. So, December 7, 2001, fifteen members of Erie ADAPT went to
Arby's for lunch with a T.V. crew. Carrying signs and chanting
"Pennies for Access", we filed very slowly into Arby's restaurant,
blocking the drive thru, since this was the only "accessible"
entrance. We lined up at the counter to purchase our lunch with
pennies. Staff began to count coins "1, 2, 3..." We chanted, "We want
the manager." Arby's called the police who "escorted" us from the
building. Corporate Official Dean Adelman called immediately claiming
not to know we were still unsatisfied with access issues at Arby's,
but agreed to come to Erie to see for himself.
After several limp attempts to avoid the meeting, corporate
officials finally met with ADAPT. Again they tried to avoid making the
corrections, but hard nosed negotiations and a press conference
announcing a boycott in Ohio, Pennsylvania, and Michigan brought us to
a written plan, with deadlines, for access. Hard to believe they were
so unwilling to fix a restroom!
In the meantime, Arby's pig headed refusal to make access
sparked similar protests and boycott from UT ADAPT! Arby's still
hasn't finished es to voluntary compliance. His latest appearance was
on the O'Reilly Factor last September. Congressman Mark Foley has
reintroduced the bill, now H.R. 914. Senator Daniel Inouye (D-HI) has
introduced the Senate version, and even the National Realtors
Association is endorsing it, apparently unaware that the ADA and the
Fair Housing Act are not the same thing. "The amendment requires that
prior to filing lawsuits, people with disabilities must provide
business owners with specific notice of ADA violations detailing the
location of inaccessible facilities, dates when access was attempted,
and facts relating to their attempt to gain access. Supporters claim
that this is not about in. Additionally, the legislative process will
open up the ADA and expose it to even more weakening amendments." You
can go to www.adawatch.org for an update and sign-on to our campaign
against the ADA Notification Act.
Access to Housing in
the Empire State
by Bruce Darling
New York is at it again! For about 20 years, New York State
has been a leader in requiring accessibility features in multifamily
housing. "If New York State didn't have the multifamill was
considering reducing by 90% the access requirements in multifamily
housing with elevators. Currently, NY code requires that 100 percent
of these units be "adaptable" or have basic accessibility features
like door widths and clear floor space which accommodate people in
wheelchairs. Eastern Paralyzed Veterans proposed amending the code to
require more accessibility in type-2 apartments, but this idea was
shot down. Then the council adopted the plan to reduce these accesor
for Code Development, upset, shouted, "You are out of order!" Chris
responded with "Access is a Civil Right," to which the code guy
replied, "You have no rights in this room." ADAPTers, now chanting in
full force, threw themselves to the ground to make council members
symbolically walk all over people with disl members to escape.
Our posters played with the Walmart ads and "rolling back"
accessibility percentages. One poster showed a person knocked out of
the wheelchair and on the ground after being hit on the head by one of
these percentages. Above the poster warned, "Caution: Falling
Accessibility Percentages."
We then visited the Governor's War Room and scheduled a
meeting with the code undersecretary. We made it clear that if they do
not resolve the problems with the new code by meeting and working with
ADAPT we will be visiting the Governor to demand he fix it himself.
At the follow up meeting at the governor's office, disability
advocates and the New York State Builders Association agreed on a
compromise to a plan that has been embraced by the Pataki
administration; require all new apartment dwellings to be adaptable,
ie. have basic access: at least one bathroom per apartment and all
doors would be large enough to fit wheelchairs. Any further
adaptations can be added at the renter's expense, said Philip
LaRocque, executive vice president of the builders group. ADAPT added
one more thing to the agenda: setting up a meeting to dirs waited
outside in the Governor's lobby (War Room), prepared to strike if
things didn't work out the way we wanted. The team did a great job
with this one.
PA ADAPT Meets with
the Governor
In September, ADAPT stormed the hallway outside the governor's
office, demanding a meeting to discuss helping disabled nursing home
residents fulfill a desire to live in the community. They had camped
out by his mansion on September 5th to give Gov. Tom Ridge a wake up
call. But soon after September 11th, Ridge was off to be head of
homeland security. Lt. Gov. Mark Schweiker took over as Governor.
Things looked bleak but ADAPT didn't miss a beat and sent a midnight
fax requesting a meeting so that it would be on his desk the very
first day he held office. The initial agreement was honored and
Schweiker and Public Welfare Secretary Feather Houstoun met for an
hour with 25 members of ADAPT. The ADAPT negotiators pointed out in
all of the previous discussions with the state, people were casually
throwing around numbers, dates and processes that were happening. What
they were leaving out of the equation was the fact that this was
really about human beings. Humans who, like Sue Traeger of Philly
ADAPT robbed and left for dead, had been caught on a slippery slope
that lead fromy. Humans like Pat Weaver, of Erie ADAPT, who had been a
personal assistant for people with disabilities when MS hit; she was
saved from being forced into a nursing home only by her personal
knowledge of alternatives and now she works for Voices for
Independence Center for Independent Living helping other people with
disabilities get out; however, her efforts are limited because the
program serves only people with developmental disabilities.
Then in February PA ADAPT found the efforts had a payoff.
Governor Schweiker delivered his budget speech last week and his
office distributed press releases. In the release he said, "Last year,
I met aty Services Program for People with Physical Disabilities, or
CSPPPD, network! The change was done as a program revision process, so
it will simply become a part of their overall budget requests every
year!!! In a time when all departments were told there would not be
any new initiatives this year, in fact, departments have been
scrambling to figure out how they will cover their shortfalls, we have
convinced the administration that we will not go away, nor will we
ever let them forget. By building on existing programs, the Department
of Public Welfare (DPW) will initiate a nursing home transition
program to identify, move and provide needed community-based services
to 30 nursing home residents up to age 59.
Bayoo State Nursing Home Residents Win Freedom!
New Orleans -- "If it can happen in a state where over half
the legislature has a financial interest in one or more nursing homes,
it can happen anywhere" said Attorney Steve Gold. In September 2001
the Olmstead case Barthelemy v. Louisiana Department of Health and
Hospitals involving persons eligible for nursing home care, was
settled. It was filed just over a year ago in federal court on behalf
of five individuals then living in nursing homes, one individual at
risk of nursing home admission and the non profit Resources for
Independent Living. Lois Simpson, Executive Director of the Advocacy
Center, says the Barthelemy settlement represents the first crack in
the wall that has kept Louisianians with disabilities imprisoned in
institutions.
Because the suit is a class action, the agreement potentially
covers hundreds -- possibly thousands -- of the state's 27,000
nursing-home residents, as well as those in hospitals or living at
home but at imminent risk of going into nursing homes. By the end of
2005, qualifying applicants will wait no more than 90 days for
services in their homes and communities. The settlement also provides
for a new "personal care" service that provides up to 56 hours of
assistance in the home per week for Medicaid-eligible adults who would
otherwise go into nursing homes. In addition, the State will implement
the optional Medicaid personal care service for a maximum of 56 hours
per week for persons moving out of nursing homes or those at imminent
risk of having to move to a nursing home. Provisions are also made for
collaboration with Plaintiffs' counsel in developing assessment
procedures, training programs for hospital social workers and others
who refer people for long-term care, and outreach and informing of
individuals of their options.
Minnesota Goal: Close
Nursing Homes, Serve People in the Community and Save Money
Minnesota may be the first state to get it! Facing a financial
crunch that looms in front of many - if not most - states, Minnesota
has awarded $1.7 million in grants to 21 agencies to "develop home and
community-based services" for senior citizens, the Minneapolis Star
Tribune reports. Officials told the Minneapolis Star Tribune that
without these programs, reaching a "legislative goal" of saving the
state $44.5 million by closing 5,140 nursing-home beds "might be
difficult."
The grants come two weeks after the state ended a month-long
temporary freeze on approximately $200 million in funding for
not-for-profit organizations and local governments, an effort to
curtail spending in the face of Minnesota's projected $1.95 billion
budget deficit. Department of Human Services officials said the grants
are "an integral part of broadening services for older people and
their families." The grants will go to build small assisted-living
apartments for low-income seniors, expand a grocery delivery program,
train caregivers and provide "adult day services for Latino elders and
care coordination" for Native American seniors. These grants, which
require local matching funds, are the first of three rounds of grants;
the next two rounds are expected to be announced over the next two
years, with total allocated funds reaching $10 million according to
the Star Tribune.
Texas Implements the Money Following the Person
Last legislative session Texas passed the state budget with a
small but mighty rider on it instructing the Dept. of Human Services
to let the money follow the individual from nursing homes into the
community. Rider 37, as it is known locally, says in other words,
individuals in nursing homes who wished to get out and receive
services in the community could do so, and the money that would have
been spent to serve them in the nursing home would be used to serve
them in the community instead. "It is really ideal because now when we
help these individuals move out right away, we are not making someone
on the waiting list for community services wait even longer" said Ron
Cranston, VISTA volunteer for ADAPT of Texas. Since this took effect
in September 2001, over 500 individuals have already moved out using
this mechanism.
Around the World
And Over in the
United Kingdom
October 2001, The Direct Action Network, DAN, they occupied a
Birmingham City Council building hoping to get support for the
creation of an independent living centre, which as been a three-year
campaign goal! When that did not get results, 50 DAN activists
returned the next day and blocked the entrance to Birmingham Council
House, crawled from their wheelchairs up the steps to handcuff
themselves, and leafleted and petitioned the main square opposite.
Birmingham city centre rang with the chants of "Hey Hey, Ho Ho,
Nursing Homes Have Got to Go", and "This Is What Democracy Looks
Like." The police came and forced council bureaucrats into negotiating
with the protesters, after threats imprisonment did not work.
DAN is also working to Free Our People, get disabled people
out of institutions such as Leonard Cheshire, and achieve properly
resourced independent living for disabled people. Chris of DAN summed
up the two main obstacles to this as "the multimillion pound charities
whose self-preservation maintains people in institutions, and a
government which under-resources independent living".
"For centuries disabled people have dreamed of freedom and
independence of our own making" said Andy Gill, DAN spokesperson.
"Fifty nationwide DAN activists have been dreaming too- the difference
is disabled people are now demanding and taking action, putting our
lives on the line, to bring about the change."
The action resulted in a written promise by the Birmingham
City Council officers to remove remaining council's blocks to the
centre for independent living.
Passages
This has been a very sad time, with too many losses of good friends
and fellow warriors. Our hearts are heavy with all this loss...
Leo Lucas is gone
Leo Lucas died Saturday October 27, 2002, from a massive heart
attack. Leo was an active member of both ADAPT and CORD. Always in the
front row when we met with a bigwig, always in the front line when we
had a protest, always at the microphone when we needed strong
testimony. He grew up when people with severe disabilities weren't
allowed to go to public schools; it was an era when disabled people
were hidden away for whatever sick reasons. Because of this, Leo
didn't have all the formal schooling and socialization that everyone
gets. But none of this ever stopped him. He managed to get into Cape
Cod Community College and then Northeastern, despite not having any
formal education. He became our strongest member. His example was such
that when we had a chance to meet with the President in Washington as
part of ADAPT, Leo was our choice. His was a life of profound success,
though it was his ever warm personality, his regular laugh, his
kindness, and his tremendous ability to laugh at himself and his
situation, that probably most endeared him to people. He was one of a
kind and will be missed.
- Bill Henning
Bill Scarborough Goes Boldly ...
Bill Scarborough, one of the founding members of Austin ADAPT,
passed away October 31, 2001 in the evening. His heart, so big and
generous to so many others, failed him in the end. Bill was a fighter
and truth sayer from way back. Inventor of the slogan reproduced on so
many bumper stickers, T-Shirts and banners "ADA: To Boldly Go Where
Everyone Else Has Gone Before," Bill had a wry sense of humor that
could sting as well as make one laugh out loud. Those of us from the
way back days can never forget his collaboration with friend Mike Rose
on the "Champagne Antelope Barbecue." A member of the Socialist Party
and the Highland Park Baptist Church, Bill's Yellow Dream Machine was
one of the first disability rights websites in the nation. We will
miss him deeply!
- Stephanie Thomas
Arlene Thomas
Freedom fighter Arlene Thomas died Thursday January 17, 2002.
Arlene was an ADAPT/Utah member who fought for personal freedom. She
used a wheelchair due to Frederick's Ataxia. Although others pushed
for her to go to a nursing home, she was able to forestall them and
lived in her own home with personal assistance. She will be missed by
all.
- Barbara Toomer
Tim Craven
In mid January we learned the sad news, that Tim Craven had
died a few weeks earlier. His wife asked that we all be notified.
Although he had not come to a national action all that recently, Tim
was an ADAPT member from the Knoxville TN area and was a strong
supporter of ADAPT in Tennessee for quite some time. Those of us who
go back a few years could not forget his strong sense of advocacy,
shining from under the big brim of his hat!
- Dawn Schneider
Walter Hart
Walter Hart, an irascible old codger from way before such
things were fashionable, passed away in Denver Friday February 22,
2002. Walter became involved with ADAPT back when Atlantis had an
office in the Dallas Fort Worth area, moved up to Denver and stopped
many a bus, before ADAPT moved on to attendant services. A person who
lived life on his own terms, Walter had a beautiful radio voice until
his last stroke, and had ridden the rails, and worked in the carnival
in his younger days, perhaps in preparation for ADAPT? Hart
personified much of what ADAPT is all about.
- Frank Lozano
Mark Smith
Mark Smith, one of the co-founders and national Executive
Director of Justice For All, died on Monday, February 25th, 2002 at
his home in Jackson, Mississippi. Mark won a long battle with cancer,
overcoming pain, prejudice and a failing body to lead the Mississippi
Coalition for Citizens with Disabilities until just a handful of days
before his death.
Mark was the strongest man we ever knew. He had iron self
control, a man of few words and silent ego. He was a super efficient
executive, lightening quick and thunder strong. He was a profound
philosopher of democracy, and a moral giant in terms of translating
his principles into personal action. He was a man of monumental
determination. Whether fighting cancer or injustice, he never gave the
enemy an inch. He always gave more than he had to the struggle.
[Editors note: Mark, not someone who sought the limelight, was
also a great supporter of MiCASSA and Olmstead, working hard within
his state and around the nation to Free Our People!]
- Justin and Yoshiko Dart
Phil Stinebuck
Very sad and surprising news that Phil Stinebuck passed away
suddenly February 14, 2002. Phil, who attended some national ADAPT
actions, was the Head of the RCEP Region 6 at the University of
Arkansas Hot Springs, generally considered to be the best in the
country by IL advocates. This is in no small part due to the work of
Phil. Supporting activism, Phil was a major promoter of Olmstead
implementation and disability rights generally.
Incitement
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