INCITEMENT
Fall 1998
ADAPT DESCENDS ON WASHINGTON D.C.
Campaign for "Real Choice"
"There's No PlaceLike Home"
ADAPT will descend on Washington D.C. on October 31, 1998. Join us in
giving Congress and the Clinton Administration a message that business
can not continue as usual. We are tired of being tricked, it's time we people
with disabilities enjoy the treats of life (attendant services, housing, and
more).
People with disabilities want a national program of home and community
services so we are not forced into nursing homes, ICF-MR facilities or any
other scary institutions.
ADAPT will be arriving in Washington on October 31, 1998 and leaving on
November 5, 1998.
Make reservations with your state ADAPT leaders, who will in turn contact
Denver.
If you have any questions please call your local ADAPT leadership, or call
Denver at 303-733-9324 to find out who that is.
SEE YOU IN
WASHINGTON!!
America celebratesFreedom Day
January 15th
President Clinton awarded the Presiden-tial Medal of Freedom, the Nation's
highest civilian honor, to 15 distinguished Americans at a White House
ceremony on January 15, 1998.
Among the recipients was Justin Dart Jr. Considered the father of the
Americans with Disabilities Act, Justin Dart has worked from his wheelchair
for more than 40 years to expand the rights of others. From his days at the
University of Houston organizing a civil rights initiative, to his government
service, to his trailblazing work on behalf of people with disabilities, Dart
has profoundly influenced the public policy of this nation.
Freedom is an empowering and sobering concept. It gives us the opportunity to
succeed, and also to fail. It allows us to make our own way in life, and
requires that we accept the responsibility for that.
Though millions have died for it, and most would choose freedom over any
alternative, freedom can often be very frightening. It often imposes difficult
decisions, and requires valiant effort to maintain. Though freedom is
indisputably the best course, it is seldom the easiest.
Thankfully freedom is available to more people than ever before. But just
because it is available, doesn't mean you have it. To be truly free, you must
accept your freedom, and all the responsibility that comes with it. To be free
means being your own person, with your own purpose, and passion and integrity.
And just as it has to thousands of communities and millions of people, true
freedom will bring you greatness.
~Ralph Marston
On this, Martin Luther King Jr.'s birth-day, we continue his fight for free-
dom of all people. His struggle for equality on the bus, has turned into a
battle to get on the bus for many Americans with disabilities. We have a right
and a duty to take our place among our fellow countrymen, even if it means
taking a stand.
"From every mountain side, let freedom ring."
ADAPT/Incitement
1339 Lamar SQ DR #101
Austin TX, 78704
512-442-0252 V/TDD
FAX 512-442-0522 V/TDD
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.
Topeka Independent Living
Resource Center, Inc.
501 SW Jackson St., Suite 100
Topeka, KS 66603-3300
(785) 233-4572 V/TTY
1-800-443-2207 V/TTY
(785) 233-1815 TTY
(785) 233-1561 FAX
We're Baa-aack!
Did you think you'd never see another Incitement again? Well, never fear.
Though we've had our hands full with MiCASA and everything else under the sun,
we are now working with another group to get our newsletter back on schedule.
So, if you have stuff to submit, get it to Tessa at TILRC (see address page
2). Their e-mail and web site are still in the works, but between all of us,
we'll get Incitement back to our people.
This is kind of a "catch up" issue, so I'm sorry if everything didn't make it
in this time. There is almost a year's worth of stuff to highlight, but what a
year it has been.
ADAPT is definitely a nation wide force to be reckoned with!
Keep up the fight!
Victories from Fall 1997 ADAPT Action in
Washington DC
ADAPT's DC trip was very successful. Among other things we were able to get:
v Congressman Bilirakis, Chair of the Health and the Environment subcommittee,
to commit to hold hearings on HR 2020, MiCASA before March 31st 1998,
v the Congressional Budget Office to re-look at the numbers and assumptions on
which they made their initial cost estimates for MiCASA,
v major aging, disability and long term care groups to meet regarding plans to
work together for passage of HR 2020.
We also learned the bill is being discussed all over the hill among the House
and Senate as well as government officials and advocacy groups (both for and
against us). The Voice of the Retarded (the pro institution parent group) is
hard at work against the bill, as is the American Health Care Association,
AHCA, the nursing home lobby.
President meets with Advocates on Disability Rights Issues
Advocates for the rights of people with disabilities that met with the
President included: Justin Dart, Fred Fay, Debbie Robinson, Paul Marchand,
Gina McDonald, Bob Kafka, Mike Oxford, Nancy Diehl, John Harper, Paul Edwards,
Tony Cohelo, Becky Ogle, and Marca Bristo.
People attending from the Clinton Administrsation included: President Clinton,
Vice President Gore, Judith Heumann, Bob Williams, Susan Daniels, Bill White,
Maria Echaveste, Chris Jennings, Bruce Vladek, and Diana Fortuna.
President Clinton finally held up his election-eve promise to meet with ADAPT
and other disability leaders from around the country. On September 10th, they
met in the White House cabinet room to discuss such topics as; MiCASA, ADA
enforcement, IDEA, SSI for kids, and employment.
Justin Dart began the meeting as moderator, and reminded everyone that
disability will at some point touch every American family. He added that
Americans with disabilities have come a long way, but we still have a long way
to go. "I am convinced that we will never achieve full, productive
participation until there is a revolution to establish a culture that
systematically empowers all to govern themselves, and to produce lives of
quality for themselves and all." He finished by stating "Mr. President, give
us the tools and we will work with you to do the job."
The next speakers were Fred Fay of Justice For All, and Debbie Robinson of
Speaking For Ourselves. They focused attention on the importance of the ADA
and the need for more resources for ADA enforcement and technical assistance,
as well as more job opportunities for people with disabilities.
The President responded to their appeal by stating that he will ask Congress
for a significant increase in funding for ADA enforcement and technical
assistance. He also mentioned that his past budgets had included increases for
the ADA, but that Congress had never granted it. He asked that the disability
community help make that happen.
Paul Marchand of The ARC, spoke on behalf of Supplemental Security Income for
children and the many problems with the system since the new Welfare law took
effect. He feels the Social Security Administration has set too harsh a
standard on eligibility requirements for children. The President said he would
instruct Social Security to get a report to him on the new SSI reevaluation
process.
Gina McDonald of the National Council on Independent Living, followed next
with an eloquent statement about personal assistance services (PAS), which
ended up being the main focus of the meeting. Gina stated, "National Long Term
Care policies have traditionally favored institutionalizing people who need
PAS rather than assisting them in their own communities. This bias is
reflected in the fact that the Federal Government spends 82% of federal long
term care services funds in nursing homes. Six times as many dollars are spent
to put people in nursing homes and institutions as is spent on keeping people
in the community where they have the potential to be productive citizens."
Bob Kafka and Mike Oxford both with ADAPT, followed Gina in the discussion of
home and community attendant care services and made compelling arguments for
adopting new policies such as MiCASA.
ADAPT has been struggling for years to get a national attendant care policy
in place, and recently got Speaker of the House Newt Gingrich to introduce
MiCASA as HR 2020. Bob talked about the bill itself and Mike went on to
explain how it actually works in real life, since in his state of Kansas we
already have a working model.
As Mike talked about his experiences at this historical meeting, he said that
the President was well briefed and obviously understood the issue and the need
for home care options. However, Clinton talked matter of factly about the
political dilemma he was in as far as supporting our legislation. The problem
he stated was that the nursing home entitlement really does create a bias,
particularly in funding. He feels if he tries to deal with the entitlement
issue, the Republicans will go back to their "block grant everything" plan.
That would turn services into a state by state battle, which is what we are
trying to overcome in the first place. The President agreed that MiCASA was
the right thing to do, but that he could not politically accept block granting
everything with entitlements to nothing.
Mike said that Clinton was very frank and open and told them "If I were you
guys, I would not find this answer acceptable. From a human perspective, this
answer is not good enough. People should have the right to live where they
want." He went on to say that he is often isolated from real people and was
glad for the opportunity to speak candidly. He said he was glad we were doing
what we were doing, even if it meant being critical of him and his
Administration.
The President, Bob and Mike got into quite a discussion about the pros of
enacting legislation like MiCASA. Mike said it was a pretty weird feeling when
you thought about it, because there they were debating with the President of
the United States, but he never acted like a hot shot or tried to intimidate
them.
The President also had Bruce Vladek the Director of Health Care Financing
Administration (HCFA), speak about the Administration's plan to conduct
demonstration projects on PAS in targeted areas, as well as study the states
that have working programs in place. He also mentioned that Bob Williams had
recently joined the team to help implement these new initiatives in HHS.
Chris Jennings, Head of Health Policy, committed to acting quickly on the
"datecertain" concept. The idea is to pick a certain area where people are
institutionalized, and set a certain date when they can move out if they
choose. Not a mass move out all over the country, but some trial projects to
see what the initial expense would be like. Even though the cost of home care
is much cheaper in the long run, the initial transition may cost more. Even in
states where alternatives are available, the nursing homes aren't emptying out
because there is not an immediate direct savings. The test projects will help
figure out how to control that. Mike felt that these commitments were a pretty
decent step in the right direction and were more than he had expected. Now it
will be interesting to see what really develops.
After the lively dialogue about MiCASA, the topic turned to education with
Nancy Diehl from Parent Network and John Harper. They touched on IDEA, funding
for special education and the need for qualified and experienced teachers for
students with disabilities.
Tony Cohelo and Paul Edwards spoke on behalf of the ADA, jobs for people with
disabilities, linkages to health care, welfare to work issues, and technology.
Vice President Gore became animated in his response to technology, one of his
favorite initiatives. The President and Vice President both agreed to watch
and follow the issuance of regulations from the FCC .
Marca Bristo summarized the meeting and presented the President with the
history of the ADA National Council Book.
What does entitlement mean???
What it all boils down to is how is entitlement defined or interpreted. The
money-loving nursing home industry sees it as an entitlement to nursing home
care. The disability community sees it as an entitlement to long term services
and supports, which could be a variety of things, including home and community
based services, and also including nursing home care.
MiCASA does not try to create a new entitlement to Medicaid. It is saying the
entitlement already exists and should share the resources with services that
can be provided at home not just in a facility. Real Choice.
As it stands now, if a state receives Medicaid funds, there are certain
things that state has to do to get the Federal match. One of those things is
to provide nursing home care - short of building new facilities or adding
beds. After the state provides the required things, they have a whole list of
options that they can provide if they want to. Personal assistant services are
on the options list. So some states don't provide any alternatives to nursing
homes and sometimes you can't even get in there because of waiting lists.
Even when MiCASA becomes law, it can't fix everything. The Feds can't tell 50
different states what their eligibility requirements should be or how they
should license their nurses and health care providers. There will still be a
lot of authority in the hands of each state. We go to our state government and
they say, oh we'd like to do that, but the Feds won't let us. Then we go to
HCFA (Health Care Financing Administration, AKA the Feds), and they say the
power is in the states. In reality HCFA has been encouraging states to create
waivers (see letter, page 29). Some states are doing a lot more than others.
So people need to get busy in their own states!
Work on your state!!!
While we fight for MiCASA, people need to get their own states mov-ing in the
right direction. Even when MiCASA passes there will be much to do to get each
state to an acceptable level of services. The Federal law would be general and
the specifics would still be left up to each state.
How much states provide to any type of Medicaid program is driven by how much
of the state's general funds are budgeted to pull down and match Federal
dollars. States have always had this control and probably always will. So
start educating your local politicians.
States also have control over licensure and certification of the people who
actually provide the services, like the laws governing the practice of nursing
and the laws governing the practice of home health care. For example, in some
states they may require an RN to perform duties such as catheterization or
maybe even toenail clipping. That's where people who actually use the services
need to stand up and fight for what the rules need to say. The toenail example
is the kind of thing that drives up the cost of home health care. By the time
you find someone with the right qualifications, you've got yourself a $50
toenail clipping. This is the sort of regulation that people in each state
must fight in order to get consumer control and keep costs reasonable. MiCASA
would give you the right to select, manage and dismiss your home health
worker, but depending on the state that may mean different things. What you
want to set up is control and choice so you could choose an RN if you want, or
choose to train the college student down the street if you want.
The whole point is about choice. In order to get that you are going to have
to fight locally in your state too. It is not impossible and it is definitely
a battle worthy of the effort.
Greyhound's History of Inaccessibility
from ADAPT Headquarters
For rural Americans with disabilities, as well as for low income folks, Grey-
hound is one of the only links from home to family, friends, medical and
social services and more. Six in ten adults with disabilities (59%), have
household incomes below $25,000. Roughly 68 million (23%), of the nation's
population live in rural areas: around 15 million (22%) of them are disabled.
57% of rural families who live in poverty do not own cars.
ADAPT first hit Greyhound in the summer of 1988 with a series of protests and
"freedom rides" because Greyhound did not have lifts on their buses and would
not agree to buy buses with lifts. For the next two years ADAPT did a series
of demonstrations against Greyhound and the American Bus Association and the
United Bus Operators of America. The ABA and the UBOA are the trade
associations (lobby groups) for the Over the Road Buses, OTRB (those big tall
buses used for intercity transit and tour companies).
Greyhound is a very successful lobby with both the Department of
Transportation (DOT) and Congress. They were able to convince both that
putting lifts on their buses was too hard. So when the Americans with
Disabilities Act passed in 1990 and the regulations were written, Greyhound
and other OTRBs were given extra time before they would need to provide access
to their buses. Big companies, like Greyhound, were given until 1996 and small
ones until 1997. In the meantime they were required to serve and assist riders
with disabilities.
Congress' Office of Technology Assessment was ordered to study the best way
to provide access. They made up a committee of bus industry folks, disability
folks and bureaucrats to look into this, and in 1993 they published a big book
of their findings. Their conclusion was OTRBs must provide access to riders
with disabilities.
As if this weren't enough proof that lifts are not only doable but also the
best way to go, city bus systems, like Denver and Golden Gate Transit, that
run Over the Road Buses on their express ride routes, have to buy accessible
OTRBs and have been doing so for years.
Time went by. People were busy. DOT delayed. Congress grew much more
conservative. It was 1995 and DOT hadn't produced any draft regulations yet.
ADAPT sent a team to meet with then Secretary Federico Pena. DOT's excuse was
Congress will ruin anything we do that you like, and you will beat us up if we
do regulations that Greyhound and Congress like. ADAPT decided to wait a
little longer even though many people with disabilities were receiving much
less than second class treatment from OTRB companies.
Then in 1996 Greyhound was able to sneak into the Federal Highway Act a
piece that amended the ADA to say that Over the Road Buses did not have to buy
buses with lifts until 2 years after the DOT regulations came out.
It's 1998 now and Greyhound is replacing their entire fleet with buses that
do not have lifts. We'll see what the final regulations have to say about
that.
Update on Regulations
US Department of
Transportation finally writes
regs for Over The Road Buses
The final proposed regulations for Over The Road Buses (OTRBs) were finally
written. Copies for public viewing were available by the end of March. Then
there was a period of public comment before the regulations are officially
approved by the Department of Transportation (DOT). The regulations are strong
on accessibility, so maybe Greyhound will have to make their buses accessible.
During the period of public comment, people really made their voices heard.
DOT got our encouragement to keep the regulations strong so people with
disabilities will have access to transportation without being humiliated and
injured. Bodily carrying someone instead of utilizing a lift is a pitiful
excuse for an accommodation. It is about time that money grubbing companies
like Greyhound are forced to join twentieth century America where people no
longer tolerate violations of their civil rights.
The final regulations will be out September 15th. The anticipation is
torture!
Bus line access contested
By DAVID L. TESKA The Capital-Journal
A lawsuit filed in federal district court Thursday alleges the nation's
largest bus line isn't user-friendly to its physically disabled passengers.
The suit, brought by the Topeka Independent Living Resource Center Inc., 501
S.W. Jackson, states center members are affected adversely by Greyhound Lines'
"refusal to comply with the Americans with Disabilities Act and to eliminate
obstacles that substantially limit a disabled person's mobility and access to
travel."
The central issue is whether Greyhound buses are accessible to disabled
passengers and whether the carrier has refused to "provide assistance, as
needed ... in boarding and disembarking, including moving to and from the bus
seat." The suit also alleges employees aren't properly trained to assist
disabled passengers.
Locally, the suit claims Greyhound's Topeka terminal, 200 S.E. 3rd, has
ticket counters and restrooms that aren't accessible.
The terminal's manager said Tuesday she hadn't heard of the lawsuit and
referred questions to corporate headquarters in Dallas.
Nationally, the resource center's lawsuit seeks to halt Greyhound's purchase
of buses, which the center says are inaccessible.
No one at the resource center was available for comment Tuesday.
The resource center claims members are injured by businesses that continue to
ignore the ADA and discriminate against people with restricted mobility.
Congress passed the ADA in 1990 with the goal of making businesses meet the
needs of disabled customers.
The lawsuit says Congress allowed Greyhound to put off the purchase of
accessible buses until two years after the Department of Transportation had
developed regulations. These are due to become available, the suit states, in
March. w
Reprinted from Topeka Capital-Journal, February 4, 1998.
Advocates all over the country test Greyhound's policies.
Here's a story from St Louis.
I called Greyhound on Sept. 2, 1997 to give notice that I would be traveling
in a wheelchair on Sept. 6, 1997, from St. Louis, MO to Columbia, MO, on the
1:40 bus. I was asked many, many outrageous, personal and totally uncalled for
questions, such as: Can you walk? Are you taking a companion? What kind of
wheelchair do you have? Will you need to get off at the Kingdom City stop?
(When I said possibly to go to the bathroom, she said there was one on the
bus! When I asked if I could access it with my wheelchair, she of course said
no. Then she went on to say the Kingdom city station is closed on Sat.
afternoon so there would be no one there to help me. She suggested I go to the
bathroom right before I traveled and hold it for 2 &1/2 hours!)
The invasion continued...
If there is no one to help you, can you hold off going to the bathroom till
you get to Columbia? Do you have any health reasons that you shouldn't travel?
How much do you weigh? What color is your hair? What is your race? How tall
are you? How old are you? (When I asked why these questions were asked I was
told they asked them of everyone they gave assistance to in case someone got
lost and Greyhound needed a description of them. I liked the answer my friends
gave... I'll be the one who answers to my name!) What kind of wheelchair do
you have? (When I said a manual that does not fold, she said well I don't know
if that will fit, do you?! Pardon me but I thought I had the Greyhound ADA
Hotline on the phone!) What is your phone and address? What is the phone # of
someone else in your family? Who are you meeting in Columbia? Can they help
you off the bus? (When I said no, she's in a chair too, they said does she
have someone with her?!) What is their phone number?
Needless to say this was beginning to try my patience.
Finally the day arrived to "Ride the dog." At the station an hour early as
directed, I bought my ticket. So did three of my friends (one other tried and
was refused because she didn't have an attendant-neither did any of us, but I
guess they had surpassed their gimp quota for one bus.) The manager, Joe
Kaylor, my good buddy from our August action, was there to take our names and
vital information and explain how they would get us on the bus. Hell, the
manager and his pound puppy assistant were even going to GO TO COLUMBIA WITH
US IN CASE WE NEEDED THEM AT THE 15 MINUTE RESTSTOP AT KINGDOM CITY!
We proceeded outside with our send off crew of another dozen wheelers and two
TV stations. The bus driver and ass. manager lifted my friend onto the isle
chair and squeezed her into the bus. Then they came after me. I had worn a
skirt for the occasion, so they covered me with an old yellow towel to
preserve my dignity and then squeezed me on the bus followed by my wheels, my
arms, and my clothing guards. During all of the strapping and lifting Joe was
extremely careful not to touch any of our private parts, and preempted
everything with "I'm going to put my hands here... okay?"
Time to potty, after all we had been good and held it for 3 hours. Oops, the
stall door swings in so I can't shut it behind my chair. Good thing the
station was not crowded, considering anyone opening the RR door had a clear
shot into my stall. Bummer, no tp holder, it appears it got ripped off the
wall. Nice sinks, but no soap to be seen and I just couldn't seem to reach the
towels behind the door, past the sink and over the trash can! I had a little
talk with the manager there. Took him into the RR to show him how easily he
could fix his problems by swinging the door out. Another oops... can't swing
the door out because the lovely new accessible sinks were in the way. His
reply, "Oh we'll just cut that door off above the sink so that it can swing
out." Oh sure, no problem then I can just wheel right under it! I added my
complaints about no signage, no access to the drinking fountain, and a
crumbling steep ramp out front in dire need of repair.
While I was recovering at home a few days later I got a call from Kaylor, our
station manager in St. Louis, he says his district manager is coming to town
and he would like to meet with some of us. And so we will. Stay tuned.
ADAPT targets KC Greyhound
According to an article in the Pitch Weekly, men and women gathered in the
windy cold in January, some with canes and crutches, others using wheelchairs,
shouting "We will ride that dirty dog" and "We want access" in front of the
Kansas City, MO, Greyhound terminal.
Many of the protesters had come from small cities and towns in Kansas to
protest Greyhound Bus Lines' unwillingness to buy lift-equipped buses for
disabled Americans. Some told stories of not being able to board Greyhound
buses. Others said Greyhound made token, demeaning accommodations for the
disabled.
The protest was organized by ADAPT.
About 15 million Americans with disabilities live in rural areas and small
towns. Another 53 million people with disabilities live in urban areas. Sharon
Joseph, ADAPT activist, said Greyhound is important to the disabled, since it
is the undisputed leader in intercity and interstate travel for people without
immediate access to Amtrack or airports, or the means to afford either.
Greyhound could easily and quickly become ADA accessible, Joseph said, if the
company would buy buses fitted with wheelchair lifts as it replaces its fleet.
Such lifts, now used by city transit systems in Denver, CO, and San Francisco,
CA, unfold from beneath the steps at the front entrance of a bus. People with
wheelchairs, or who use other devices for walking, can set themselves on the
lift and enter the bus much like other passengers.
But as the company purchases new buses to add to and renew its fleet of
nearly 2,000 buses, Greyhound is skipping the lifts.
ADAPT member Mike Oxford, who supervises the Topeka Center for Independent
Living, said Greyhound has consistently lobbied and cajoled its way around
complying with the ADA.
According to Oxford, a study by the Congressional Office of Technology
Assessment (OTA) determined that over-the-road buses (OTRBs), large buses used
by Greyhound and charter bus lines and other private carriers, must be
equipped with a lift.
"We know from the OTA study that such lifts are about only one percent of
the total cost of the bus. But Greyhound refuses to outfit their buses with
the lifts," Oxford said.
Oxford said he has seen Greyhound make the same argument for years. "They say
that if more disabled people came to buy tickets, they would buy lifts. But
since the buses are so difficult to get on, few disabled people use the
system. Greyhound doesn't seem to understand that they have the potential to
open up whole new markets."
Greyhound ADA Coordinator Sandra Viggiano would not comment on Greyhound's
policies.
The "Greyhound Travel Brochure for Passengers With Disabilities," stated that
"assistance is available to passengers with disabilities when they travel
within the Greyhound system." Prospective passengers must call the Greyhound
ADA Assist Line 48 hours in advance of their travel to help Greyhound
personnel get pertinent information "to reasonably assist passengers with
special needs."
Qualls said the 48 hour advance notice was needed to find special equipment
within the Greyhound system and deliver it to the station where it was needed.
Such equipment includes a boarding chair with stair climbing capabilities
available in 18 larger bus terminals and a portable boarding chair used in
conjunction with a permanent lift installed at stations.
In some instances, Qualls said, Greyhound personnel will manually lift
disabled passengers into buses and into their seats. The company requires
passengers to supply proof of disability and offers free tickets to people
attending disabled individuals, but reserves the right to determine "the
necessity for a free ADA Personal Care Attendant ticket."
But what public relations people say differs from reality, according to ADAPT
members. Joseph pointed out that the protest at the Kansas City, MO, terminal
was to test Greyhound's ability to deliver on its own policies. Wheelchair-
using passengers planning to attend the protest in Kansas City called the
station in Hays, KS, six days in advance and could not be accommodated. They
arrived at the Kansas City protest in a wheelchair lift-equipped van.
Ignacio Franco, who uses a wheelchair, said, "The 48 hour rule may work at
stations where there is more than one person. When I decided to come here from
Garden City (KS), the station attendant, who works the station by himself,
told me he could sell me the ticket, but he couldn't help me on the bus. He
had a bad back, he said, and it was not part of his job to lift me on the bus.
You can't blame him. But you have to look at the company and its policies. I
had to get a ride with the people from Hays."
"We are looking for access to the system," Joseph said. "All we are asking
for is that Greyhound make their buses ADA accessible. In terms of lifting
people onto buses, there are all kinds of work-related problems with that.
They have workers' compensation issues to deal with in making their drivers
and station workers lift disabled people. That is just the kind of help we
don't need."
Oxford also said many of Greyhound's stations are inaccessible to the
disabled. The Kansas City, MO, terminal is ADA accessible, but Oxford
indicated that the station in Topeka "is not ADA, and we are about ready to
file a lawsuit about it."
"On the buses, the bathrooms don't have to be accessible, since the seating
for people with disabilities is at the front. But, they have to stop when I
feel like it to make a rest stop. They are supposed to look for an accessible
place like a highway stop, but they don't do that either. Then, if they do,
they would have to help me up and down and get me out of my chair," Joseph
said.
Since 1988, ADAPT has held frequent protests against Greyhound. The Kansas
City protest was part of a nationwide effort that ADAPT members said will
continue until Greyhound becomes completely accessible to the disabled.
Access Should Improve, DOT says
By GLEN JOHNSON The Associated Press
WASHINGTON - Greyhound and regional bus carriers should make their entire
fleets accessible to disabled people by 2012, the government proposed Friday,
a switch Greyhound called too expensive and a timetable some called too slow.
Under the draft guidelines, the Department of Transportation is proposing a
phase-in period to address both concerns. Municipal buses are specifically
exempted.
Starting in 2000 any new bus bought by a carrier would have to be fully
accessible. By 2006, half of all fleets would have to be equipped with
wheelchair lifts. While the companies are converting buses, they would have to
supply an accessible bus if a disabled passenger gives them 48 hour notice.
The proposal also calls on carriers to install wheelchair lifts at their
stations on a "common-sense, phased-in" schedule. The same rules would apply
to charter and tour companies.
Greyhound, the country's only nationwide carrier, has 2,100 buses. Only seven
of them are accessible, although 20 more are on order. The company favored an
alternative in which it would have converted 25 percent of its fleet and made
those buses available with a two-day notice.
ADAPT's Vision 2020
One of ADAPT's biggest issues right now is MiCASA, the Medicaid Com-munity
Attendant Services Act, HR 2020. Speaking in favor of the bill are Speaker of
the House Newt Gingrich, and House Minority Leader Dick Gephardt. Getting
their support was no easy task, but our people are determined and persistent.
Read on for our progress till now.
Very few Americans would want to call a nursing home their home. Yet hundreds
of thousands of people, young and old, all disabled, are forced into nursing
homes every year. Fewer than one percent will ever return to their homes,
their families.
ADAPT calls this segregation a crime.
The average life-span in a nursing home of a person whose limbs are paralyzed
(quadriplegia) is 15 months. A quadriplegic who lives in his/her home with the
assistance of personal attendant services has a life-span of 15 + years.
Contrary to popular belief, nursing homes are not safe places to live and no
one is "better off" there.
The Health Care Financing Administration's own figures show that
institutional confinement is six times more costly than community-based
attendant services .
Currently, the nursing home industry has a stranglehold on long term care
policy in America, receiving 80% of Medicaid long term care dollars. ADAPT
wants to see that bias shift to less costly, more humane, community-based
attendant services. HR 2020, MiCASA would do that. People all over the country
would have a choice of where they receive their services. Free Our People!
Hearing on Community-Based Care for Americans with Disabilities
The hearings held March 12, 1998 by the Health and the Environment
Subcommittee of the Commerce Committee went well. It was very obvious everyone
has been working very hard to prepare for them. The support from all of the
MiCASA supporter groups and several others including National Council on
Disabilities, the ARC, NCIL, TASH and many of the local groups including the
DC Center for Independent Living was phenomenal and really helped make the
day!
Over 300 people showed up to support MiCASA, so they had to have an overflow
room on the third floor into which the proceedings were televised.
Speaker Newt Gingrich and House Minority Leader Dick Gephardt testified first,
talking about the importance of the legislation, and the need to empower
people with disabilities.
Gingrich talked about the waste of lives that was the result of the current
system, and said that in light of the testimony that was to come later from
some states that have successful programs, the CBO's "scoring theories" might
be a bit off.
Gephardt talked about the many fine institutions that must be protected, but
also said there is clearly an institutional bias in Medicaid and that people
have a right to live in the community.
Gingrich talked about the quadriplegic US Attorney Holly Caudell with whom he
and many other Congressional leaders as well as the President had met and who
might have to not go to work because she could not afford her attendant
services.
Gephardt talked about his friend Max Starkloff, also a quad and Dir. of the
CIL in St. Louis, who had done so much to educate him about disability issues,
including attendant care. Both leaders were very positive on the bill, though
oddly both spoke quite a bit about cure research!?!
The Subcommittee members then made opening comments talking in support of the
bill generally, though raising two familiar issues of safety and cost several
times.
Rep. John Dingell, Democrat from Michigan, spoke about how great the words
here today were, but that the leadership's budget work has not reflected these
priorities.
Another member, most likely a Republican because the parties were taking
turns, talked about recommitting ourselves to the empowerment model for
services and policy.
Ranking Minority Member of the Subcommittee, Sherrod Brown, a cosponsor of
MiCASA, spoke the nursing home industry line about how community services are
great but that quality assurances need to be the same as for nursing homes. He
said nursing home quality assurance was pretty good and that we needed to
bring community based services up to the level of that for nursing homes. Also
he kept referring to attendant services as "assisted living services" and
spoke about his concern about lessening quality with fewer resources for
institutions.
Nathan Deal, Republican from Georgia, talked about his 91 year old mother who
had fallen and broken her hip at the start of this year and how she had shown
him the "indomitable human spirit" and what it could accomplish. He talked
about staying with her overnight while she was recovering.
Gene Green from Houston, Democrat and also a cosponsor, talked about
supporting choices, and then went into a thing about those who need 24 hour
care and the need for baseline guidelines of who to pick as an attendant.
Anna Eschoo, Democrat from California and cosponsor, talked as if she had
grown up on independent living for breakfast, that the current system was
wrong and degrading, that MiCASA, though not perfect legislation, is attacking
a critical problem. Her caveat being that some still would not have access.
Bart Stupack, Democrat from Michigan, talked about his state's attendant
service program and his concern about the CBO scoring. He said he was very
interested to hear the testimony.
Diana DeGette, Democrat from Denver Colorado, talked about her work with and
education by ADAPT, which had been founded in her district. She mentioned Wade
and Mike and how much she had learned from the folks at Atlantis about the
need and the importance of and possibilities for independence. She also talked
about a new waiver program for rural services now happening in Colorado. She
ended with an echoing of the warning to watch what people do, versus what they
say.
Ted Strickland, Republican from Ohio, talked about the difficulty of being
asked to choose between needy populations. He mentioned the unrealistic
regulations that should be changed, and added a warning to be careful.
The subcommittee broke to vote and then returned to hear the testimony of
Justin Dart, who could not stay much longer due to health reasons. The
subcommittee members, obviously familiar with Justin and respectful of his
views, listened to his call for them to act now! They asked him about state
programs which are working and more specifics about attendant services policy.
He deferred the specifics to Mike Auberger, who was testifying later, and used
these opportunities to urge them to act on this critical issue.
After another break for another vote, the subcommittee heard from the
Administration, in the persons of Sally Richardson, head of Medicaid, and Dr.
Margaret Hamburg, Assistant Secretary for Planning and Education at Health and
Human Services. This was perhaps the weakest piece in the hearing. They talked
about their initiatives and programs related to community care, and some of
the changes they had made. Richardson stated that there was an institutional
bias in long term care. They spoke very favorably about community based
services.
After a warm introduction by her Congressman Greenwood, Polly Spare, President
of Voice of the Retarded read her testimony, which was full of statistics and
citings of studies. She went at a rapid fire pace, but was unable to get
through it before the Chairman cut her off at the five minute bell. It was
very difficult to retain what she said, although it was full of the usual fear
mongering of closing institutions and dumping people, morbidity statistics and
references to the infantility of people with mental retardation. She said that
ADAPT did not include people with cognitive disabilities and that MiCASA
overlooked their needs. No one asked her any questions.
Carol Hughes, Chair of Gingrich's district Disability Task Force, in addition
to her official role, is the mother of a young man, early 20s, who has a
developmental disability. She spoke positively and straightforwardly about the
bias in the current system, the need to promote independence and inclusion and
how attendant services and technology could promote these ends. She was
upbeat, insightful and spoke to how MiCASA would make significant improvement.
She had to leave, she thought, to catch a plane. Later though she reappeared
saying she had made a friend who was going to drive her to the airport (and
the woman who was going to do this stood up in the audience and called out
"Mothers for MiCASA!")
Next came Victoria Brown, President of National Organization of the Disabled
(NAOTD). She announced that NAOTD, VOR and the American Health Care
Association (AHCA -the nursing home lobby group) had formed an alliance and
were offering an alternative proposal to MiCASA, a "consensus document". She
said NAOTD supported community based services but that MiCASA needed many
improvements including: restrictive coverage and eligibility, vague principles
and definitions in the bill and restrictive services provided. By this last
statement, she went on to say she meant it did not provide for housing,
transportation, employment and more, all of which were terrible problems for
persons with disabilities. She seemed to want MiCASA to cover all these areas
as well. She also spoke quite a bit about protections and seemed to be saying
people should not be let out of institutions until all these issues were
addressed.
Next came Ann Koci, Medicaid Director of Kansas. She talked about their 14
year old waiver programs which are similar to MiCASA in that they allow
institutional eligible individuals to choose community services instead. She
spent a good deal of her 5 minutes on how their waiver was designed and
created by consensus. The Chair had her summarize and there were no questions
from the members. However her written testimony gave specific numbers as to
the money Kansas has saved with its waivers "In Kansas, this past year, the
HCBS alternative saved the state $24,579,932. This savings includes a
"woodwork" factor of 25%. The 1997 data reflects a substantial change in the
service delivery of HCBS for individuals with physical disabilities.The Kansas
HCBS/PD program offers consumer directed community based services without
waiting lists or geographical limitations. There are no individual cost
ceilings or caps. Individuals receive the services they need in order to
maintain or improve their independent living goals. A 96% overall satisfaction
rate with services loudly demonstrates the success of the program in the first
year. Obviously, consumer control and choices which empower individuals are
goals worthy of pursuing in and of themselves. The fact that it can be
accomplished and be fiscally responsible and cost-effective is an added bonus
to taxpayers."
Jim Rydingsword, Director of Senior Services Oregon Cascades of West Council
of Governments, gave excellent testimony, outlining how over time more and
more people where choosing community care, how they were extremely satisfied,
how the woodwork effect had NOT been a problem and how community services were
not more expensive. He was asked several questions and his answers underlined
his initial remarks.
Mike Auberger, ADAPT National Organizer and Chair of TASH, testified last.
Basically he highlighted what the bill did, talked about the institutional
bias, problems with fragmentation of long term care and the overly medical
model. At the end he called for the Committee to hold field hearings on the
issue during the next 6 months. The Chair of the Committee seemed to be moved
to tears by the picture of the effect the current system has on people with
disabilities, and although he looked interested in the hearings ideas he
talked about their limited budget. Clearly this will need to be pushed.
Auberger got many questions about the specifics of his experiences and the
delivery of services, and would have gotten more except that there are time
limits that each member has on questions and follow up comment. When Auberger
turned in his testimony he also turned in a stack of the written testimony
many of you were dedicated enough to submit.
We now need to push for more cosponsors and for the field hearings. They want
more proof that it can work and be cost effective. The ball is definitely in
motion, and will be moved along with education on the issue (which I think
members will now be more open to) and pushing by us for them to act! Free our
brothers, Free our sisters, Free our people now!
Medicaid Community Attendant Services Act, MiCASA, Update
June 24, 1998 was the first anniversary of the introduction of HR 2020,
MiCASA, the
Medicaid Community Attendant Services Act. Advocates have reason to be
encouraged by how far this controversial piece of legislation has gotten in
its first year and by what is in store for the next Congressional session.
Even though there have been some disagreements on specific language, there has
been uniform agreement on the principles. MiCASA brought Aging, IL and DD
groups together. Similar to the first time the Americans with Disabilities Act
was introduced, MiCASA focuses attention on a critical issue, Personal
Attendant Services, that Congress has tried to ignore. There are many
victories to be celebrated on this first anniversary.
MiCASA Victories - Year 1
• Speaker of the House Newt Gingrich
introduced MiCASA and House Minority
Leader Dick Gephardt signed on as a
MiCASA cosponsor.
• Over 62 other Representatives have signed
on as cosponsors in year one.
• Grassroots groups across the country are
supporting MiCASA: over 53 national, 125
state and 200 local organizations are
signed on as MiCASA supporters.
• The Health and Environment subcommittee of the House Commerce Committee
held a day long hearing an MiCASA March 12,1998.
• In response to introduction of MiCASA, President Clinton directed HCFA to
work on the issue of Personal Assistance Services in a September meeting;
results so far- a pilot demonstration project and study of institutional bias
of long term care system recently published by the Univ. of California at San
Francisco.
• Medicaid has made the Personal Care Option more flexible and responsive to
the needs of people with cognitive disabilities in response to MiCASA
• Attorney General Janet Reno- in a speech to National Council on Independent
Living, days after ADAPT's Memphis action, committed the Clinton
Administration to enforcing the ADA's most integrated setting mandate.
• Representative Kaisch requests the General Accounting Office report on
consumer directed long term care services for House Budget Committee review of
MiCASA.
• The Kennedy Jeffords work incentive bills
going through the Senate includes key
MiCASA concepts and language.
Action at the state level is also heating up as groups work for changes in
their individual states. A national attendant services bill is the minimum we
will settle for, but until MiCASA passes we still need to work at the state
level!
ADAPT is also collecting language to strengthen MiCASA, so when it is
reintroduced next session we will be building on the excellent foundation we
have laid so far and we can expect passage of MiCASA next session to FREE OUR
PEOPLE!
Dear Abby Sunday, March 1, 1998
By Abigail Van Buren
Dear Abby: You printed a letter recently from a woman who didn't understand
why people would not want to go to a nursing home when they get old. You
responded that "many are hesitant to give up their independence and familiar
surroundings" or to "surrender control of their lives" and noted that
assisted-living facilities offer varying levels of care that are a more
attractive alternative.
There can be a far better choice: A bill currently before Congress offers
senior citizens and persons with disabilities the option to maintain their
independence and control of their lives while remaining in their own homes -
or the option to choose a congregate (group- care) facility if that is their
preference.
This bill is the Medicaid Community Attendant Services Act (HR 2020). The
bill, known as MiCASA (Spanish for "my house"), introduced by Speaker of the
House Newt Gingrich and cosponsored by House Minority Leader Richard Gephardt,
would amend Title XIX of the Social Security Act-Medicaid to create a new
option called "Qualified Community-Based Attendant Services."
Anyone eligible for a nursing facility or intermediate- care facility
services for the mentally retarded, would be allowed to stay in their own home
and receive attendant care to assist them in their home, workplace, recreation
or religious activities. The money follows the individual. It can be used to
move out of congregate-care settings or to avoid having to move in. The need
for assistance in daily living and health-related tasks will no longer mean
that people have to give up their familiar surroundings or their independence.
This bill will benefit everyone who is disabled or will ever have a
disability or be old - and that's everyone. To secure the right to choose,
call or write your representatives in Congress and urge them to cosponsor and
vote for this important bill. - Gail B. Kear, Executive Director, LIFE-
CIL/CENTER for Independent Living, Bloomington, ILL.
Dear Gail: Thank you for alerting me to this pending legislation. The vast
majority of the mail I received in response to the letter from "Living It Up
to the End" contained horror stories about the conditions faced by seniors
when they enter nursing homes. Of course there are exceptions, but the MiCASA
bill appears to be the answer to countless prayers. I hope we'll hear more
about it in the near future.
Clinton marks eighth anniversary of ADA with call for education
Employers, especially small
businesses, need to know their
responsibilities, president says.
The Associated Press
Washington - President Clinton marked the eighth anniversary of the Americans
with Disabilities Act by ordering a stronger federal effort to educate
employers - particularly small businesses - about their responsibilities under
the law.
His order Wednesday was among recommendations by a national task force that
is studying ways of increasing employment among disabled Americans.
Clinton told task force members at the White House he was committed to seeing
better employment opportunities and better health care for disabled Americans.
The landmark Americans with Disabilities Act took effect July 26, 1990.
"Many of the 30 million working-age adults with disabilities are still
unemployed, especially those with significant disabilities," Clinton wrote in
an executive memorandum Wednesday.
Clinton said awareness of the act was increasing, but too many people - both
employers and employees - don't know their rights and responsibilities under
the law.
"There is a particular need to educate the small business community, which
employs most of the private work force and includes the vast majority of
employers," the president added.
He ordered the attorney general's office, the Equal Employment Opportunity
Commission and the Small Business Administration to expand their public
education on the law's requirements.
Clinton also told the task force the Health Care Financing Administration was
sending a letter to all state Medicaid directors clarifying that the Americans
with Disabilities Act obligates states to offer appropriate community-based
support services.
New Medicaid Buy-in Option The President also ordered the appropri-ate
agencies to increase information about a new Medicaid buy-in option. Many
people with disabilities are not able to leave Social Security programs to
return to work because they will lose their health care coverage.
As part of last year's Balanced Budget Act, the President signed into law a
new state option to allow individuals who return to work, the ability to
purchase critically necessary Medicaid coverage as their earnings increase.
Today, the President is directing the Secretary of the Department of Health
and Human Services to ensure that Governors, state legislators and state
Medicaid directors work with consumer organizations to take advantage of this
important option.
We Came to Tennessee to Set Our People Free
Memphis in May is a city promo-tional gimic to draw tourists, but for the 500
ADAPT activists who gathered there the attraction was much bleaker. In the
battle for MiCASA, the Medicaid Community Attendant Services Act, one of the
most common arguments against such a bill is that states should have control
over what services they offer and how they are provided. "Every place is
different" the argument goes, and "we know best how to take care of our own,
in our own special circumstances." Well those of us in the disability
community know the chilling implications of this type of talk, but until a
bright light is focused on the problem everyone can pretend it isn't there.
Tennessee was given the dubious distinction of being the Number One Worst
State, so May 9th through the 14th over 500 ADAPT activists from across the
nation gathered on the banks of the mighty Mississippi River to show what
happens when some states are left to their own devices.
After the workshops on Sunday morning, the public part of ADAPT gathering was
kicked off with a rally in Court Square in downtown Memphis. The purpose: to
announce the 10 Worst States for Community Based Attendant Services (see
related article page 24), and announce ADAPT's purpose for being in Memphis.
Mother's Day was, appropriately, the backdrop of the event since more than any
other group women are impacted by long term care policy.
The 10 Worst States (and five Dishonorable Mentions) were awarded in bed pans
to representatives of each state who promised to deliver them to their
Governors.
Representatives from various impacted groups in the Number One Worst State,
the State of Tennessee, then spoke about various aspects of the issue. The
President of People First of Tennessee, the group which successfully sued to
close down some of the worst state developmental disability institutions in
the nation spoke about the importance of self determination. An institution
escapee also of People First, spoke about civil rights for all. LaTonya
Reeves, who used to live in a Memphis nursing home, spoke about how she had to
move to Colorado to get the attendant services she needs to live in her own
home. An ex-college professor who is currently warehoused in a Memphis nursing
home, spoke of the long wasted days he now spends wishing he was elsewhere. An
AARP Representative spoke of local legislative efforts and the need for more
advocacy.
From the rally, a fleet of vans then loaded up and carried about 100
protesters to a local nursing home, Kings Daughters and Sons, KDS, which
"specializes" in younger folks with disabilities and which has court orders to
keep the Memphis Center for Independent Living and ADAPT members away from
those who want to get out. "We wanted to show support and solidarity for those
inside and for them to know the protests this week are - in part - for them"
Memphis ADAPTer Dawn Russell explained. MCIL members reported calls from KDS
inmates who said in whispered tones "when you come here just pass me in the
hall and pretend you don't know me." Lining the sidewalk on the opposite side
of the street, those at the vigil chanted "can you hear us, on the inside, can
you hear us?" and laid flowers in the driveway. Shadowed faces watched from
the windows.