Incitement
Volume 17 No. 2                   A Publication of ADAPT                 
Summer 2001

ADAPT Ensures Promises Kept
The Spring action was perhaps the text book example of the power of 
direct action and how the people united will never be defeated. Three 
days of action accomplished what we set out to do: laying a foundation 
for the new Administration. Health and Human Services, HHS; Housing and 
Urban Development, HUD, and the White House gang all got a taste of 
ADAPT, and came to see negotiation is the way to go! Even the American 
Health Care Association, AHCA, agreed to come to the table. Our message 
was heard as far off as Aruba! And it was definitely heard by the new 
Bush Administration.

        The meetings with HHS, HUD and AHCA were demanded and arranged. 
United action overcame resistance in all cases. The Executive Order on 
implementing Olmstead is out and is stronger than many of us thought it 
would be. That would never have happened if not for our little home 
visits! 

        There can be no question direct action works. Sure we don't win 
all in the first round, but advances are moving us forward at a smart 
pace. It is hard to remember an action where ADAPT worked better 
together, and that is no easy claim to make as we have had some beautiful 
actions!

"INSURANCE" ADAPT STYLE
        As Monday morning broke, ADAPT's troops gathered in the driveway 
of our hotel. Working with patience and determination, each team worked 
to get all down and ready to roll for our first day of actions with the 
new Administration.

        Eight years of work on the Clinton Administration had eventually 
yielded some great results. But this was a whole new ball game. And it 
was time to test the new playing field. ADAPT had sent repeated letters 
to the Bush Administration requesting meetings to see where they stood 
and what they were planning to free people with disabilities from 
institutions. But our letters had gone unanswered, except for some vague, 
last minute calls trying to divert us. It was time to get serious.

        A team of 20 folks left early to meet with staff from the Health 
and Human Services Administration, HHS. No one in HHS employ seemed able 
to schedule a meeting with the new Secretary Tommy Thompson, so these 20 
were going to schedule that meeting and get a sense of the department's 
new leadership. But that was not the whole plan. Too often we have been 
jerked around and patted on the head. Our eight Clinton years had taught 
us: time slips by too fast to waste it.

        Instead insurance would be provided, in the form of 480 other 
interested individuals who headed over to HHS 20 minutes after the first 
group to just wait and see what happened. Upon arrival we arranged 
ourselves around the building, not blocking, not chanting, just waiting. 
Being neighborly you might say. Inside the meeting however, the yellow 
sticky notes began to be delivered to the HHS officials heading up the 
meeting.

        Discussion progressed, but when the HHS folks claimed to be 
unable to set up a meeting with their boss Secretary Thompson, word was 
sent down the insurance group. Our ADAPT folks were in good hands at 
least, and the crowd below moved in toward the building and began chanting.

"HELLO GENEVA?"
        "The invitation they sent us for this meeting said we would 
schedule a meeting with the Secretary" Wisconsin ADAPT Organizer Steve 
Verriden said, "and then we got stonewalled. Seven of the 20 of us were 
formerly warehoused in nursing homes, and took the stonewalling very 
personally, as did the rest of us."

        Inside the HHS folks were getting huffy and stomped out of the 
meeting room, but our 20 folks refused to leave. Having come for one 
thing, we were not leaving till we got it. As word came down about the 
standoff, those outside chanting moved in to block the doors. The 
discipline of the group was great.  Step by step pressure mounted. 

        Quickly the HHS folks realized the time for games had passed, and 
lo and behold, they returned to the meeting, full of lectures and 
recriminations, but with a commitment for a meeting. Thompson had 
confirmed it from Geneva, Switzerland. Outside we released the doors and 
our inside team came down to join us. It was before noon and we had 
accomplished our first goal.

        A quick recap and we were on our way. A lengthy march through the 
streets took us to target number two, AHCA, the American Health Care 
Association -- lobbyist for the nursing home industry. This lovely little 
group still held over 2 million of our people captive for their profit 
making value and ADAPT had a few items to discuss with them.
        Before we even arrived the doors were locked and the lights 
turned out on the first floor. But ADAPT is not that easily fooled. Again 
we surrounded the building.

OUR HOMES, NOT NURSING HOMES
        It seems the police had not known ADAPT was coming to town. By 
the time we got to AHCA however, they had found out we were there. In 
fact they were escorting us, uninvited. So when AHCA finally allowed our 
negotiators inside and said they were going to call the police if we did 
not go away, we were able to say, go ahead, here's their business card. 
That took a little wind out of the AHCA's sails, and it was quickly 
agreed that their new CEO Dr. Chip Roadman would meet with ADAPT before 
July 15. With a solid days work under our belts, we headed back to 
recharge for tomorrow!

BUSH'S DISABILITY 100 DAY 
REPORT CARD: F  

        One thing that seems consistent about the Bush Administration is 
that they were unable to respond to keep up with their paperwork in a 
timely fashion. Back in February, President Bush had created a little 
media event, coincidentally on the same day as Ashcroft was being 
nominated, where he invited a bunch of folk from the disability community 
on up to his new house, the White House, for a little get together (can 
you say photo op?) to announce his "New Freedom Initiative." This 
initiative included plans for efforts in several areas for people with 
disabilities, one of which was regarding the Olmstead decision. At the 
February First event Bush committed to publishing, on that day, an 
Executive Order to implement this Supreme Court decision. Well here it 
was four months later and no Order in sight. Bupkis! Zippo! Ziltch! Nada! 
Not good enough. After all, while Governor of Texas Bush had been one of 
only seven states which stood staunchly in opposition to the disability 
rights position the Supreme Court eventually supported in this case.

        So Tuesday brought ADAPT across town again, police escort in tow, 
to see a man about his word. We were expecting law and order crack down, 
with a 2 minute stay on the sidewalk and then off to who knew where for 
how long...   Much to our surprise we lined up along the White House 
fence, covering the entire facade. We took out our Presidential 100 day 
report card and shared it with the crowds. "The ADAPT Report Card had to 
give the President Failing grades on disability issues for his first 100 
days" said UT ADAPT Organizer Barb Toomer. "It's been over 100 days since 
he committed to issue the Olmstead Executive Order. Without the Order and 
some funding to help the states achieve the swift implementation he wrote 
about, President Bush's New Freedom Initiative remains a NO Freedom 
Initiative."

        It was hot and it looked to be a long day. But within a half an 
hour the Director of President's Policy Council John Bridgeland came out 
and agreed to set up a meeting with 20 representatives of ADAPT that very 
afternoon. 480 more of us waited outside, again in the "insurance role," 
as the meeting was set up, and finally the 20 were brought inside.  

WEST WING EAT YOUR HEART OUT!
        The group was ushered in and then in smaller groups was taken 
upstairs. Somehow Mike Auberger and Chauncey Bailey of Denver and 
Delaware respectively, were left to find their own way through the long 
empty corridors. With few options available they knocked on doors and 
began opening them. Bailey, waiting to get out of a nursing home, still 
wore his sign "Nursing homes = Jail."  Suddenly they found themselves 
alone in Vice President Cheney's office. They could have taken the name 
plate from his desk, but instead left him Bailey's sign and continued on 
their search, eventually joining up with the rest of the group.

        Crammed in a tiny office with Presidential staffers the group 
quickly got an apology and a commitment that the Executive Order would be 
out within 30 days. Though the staffers tried to get away with the old 
and tired, "my word is my bond," ADAPT's representatives were not 
satisfied until the Special Assistant to the President for Justice Policy 
Diane Schacht came outside and announced the commitment to the whole 500. 
It had been a long and fruitful day.

WE HUFFED AND WE PUFFED...
        The third day brought the final piece of the picture into focus. 
With the antics of CCD (Consortium of Citizens with Disabilities) the 
Department of Housing and Urban Development, HUD, had found an excuse to 
grind to a halt on the housing vouchers to help folks transition out of 
nursing homes. They had been steadily backsliding on this since the 2001 
budget. Letters for a meeting with Secretary Mel Martinez had gone 
ignored by the Secretary, even despite the efforts of some of his staff 
to call them to his attention. So Wednesday ADAPT went down to set up a 
meeting, the only way Washington seems to understand, with a show of power!

        We took a back route, and despite our seemingly ever present 
escorts, we surrounded the building blocking all entrances till they 
agreed to negotiate. We held them firm, and even managed, eventually, to 
get a group into the lobby and block some of their elevators. HUD, as 
ever slow to learn, dragged their heels, but in the end agreed toations 
ensued and after an hour of negotiations between 6 ADAPT representatives 
and about 30 HUD staffers, Daniel Murphy, the Secretary's Chief of Staff 
announced to the crowd in front of their building that Secretary Martinez 
would meet with ADAPT within 30 days.

        It was a solid three days work. We had gone in planning to lay 
some ground work, and to let the new administration know we were not 
about to fade away, or let our brothers and sisters fade away. The 
urgency of the call to FREE OUR PEOPLE has only grown stronger. The Bush 
administration seemed actually quicker to meet than previous 
administrations. Of course a meeting is only a meeting, and we must see 
what comes out of them, but the disciplined commitment of the ADAPTers 
from around the nation is obviously not something that will be turned 
around. And if meetings come to nothing we will be back for another 
round. For a first round however, it was victory for all concerned.

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. Please contact Tessa Goupil for deadlines for 
submission of materials. The Editor reserves the right to edit or omit 
any material that is submitted. For more information, contact Tessa 
Goupil at TILRC or Stephanie Thomas at ADAPT.

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

S. 1298
New Bill Number for
MiCASSA

        Senators Harkin, Kennedy, Clinton, Biden and Specter are the 
cosponsors. The bill contains all the old parts of MiCASSA plus a pilot 
project to improve services for people eligible for both Medicaid and 
Medicare. The new bill has a 5 year phase in during which time the states 
can get an enhanced match, in other words a higher percent of federal 
Medicaid dollars, if they provide Community Attendant Services and 
Supports; at the end of 5 years all states must provide Community 
Attendant Services and Supports.

Medicaid Community-based Attendant
Services And Supports Act of 2001
MiCASSA (S. 1298): A Summary

MiCASSA gives people real choice in long term care options by reforming 
Title XIX of the Social Security Act (Medicaid) by ending the 
institutional bias. MiCASSA allows individuals eligible for Nursing 
Facility Services or Intermediate Care Facility Services for the Mentally 
Retarded (ICF-MR) the opportunity to choose instead a new alternative, 
"Community-based Attendant Services and Supports." The money follows the 
individual!

        In addition, by providing an enhanced match and grants for the 
transition to Real Choice before October 2005 when the benefit becomes 
permanent, MiCASSA offers states financial assistance to reform their 
long term service and support system to provide services in the most 
integrated setting.

         Specifically what does this bill do?

        1) Provides community-based attendant services and supports 
ranging from assistance with:

       activities of daily living (eating, 
        toileting, grooming, dressing, bath-
        ing, transferring),
       instrumental activities of daily living 
        (meal planning and preparation, 
        managing finances, shopping, house-
        hold chores, phoning, participating 
        in the community),
       and health-related functions.

        2) Includes hands-on assistance, supervision and/or cueing, as 
well as help to learn, keep and enhance skills to accomplish such 
activities.

        3) Requires services be provided in The Most Integrated Setting 
appropriate to the needs of the individual.

        4) Provides Community-based Attendant Services and Supports that 
are:

       based on functional need, rather 
        than diagnosis or age;
       provided in home or community 
        settings like -- school, work, 
        recreation or religious facility;
       selected, managed and controlled by
        the consumer of the services;
       supplemented with backup and 
        emergency attendant services;
       furnished according to a service plan 
        agreed to by the consumer;
       and that include voluntary training 
        on selecting, managing and 
        dismissing attendants.

        5) Allows consumers to choose among various service delivery 
models including vouchers, direct cash payments, fiscal agents and agency 
providers. All of these models are required to be consumer controlled.

        6) For consumers who are not able to direct their own care 
independently, MiCASSA allows for "individual's representative" to be 
authorized by the consumer to assist. A representative might be a friend, 
family member, guardian, or advocate.

        7) Allows health-related functions or tasks to be assigned to, 
delegated to, or performed by unlicensed personal attendants, according 
to state laws.

        8) Covers individuals' transition costs from a nursing facility 
or ICF-MR to a home setting, for example: rent and utility deposits, 
bedding, basic kitchen supplies and other necessities required for the 
transition.

        9) Serves individuals with incomes above the current 
institutional income limitation -- if a state chooses to waive this 
limitation to enhance the potential for employment.

        10) Provides for quality assurance programs which promote 
consumer control and satisfaction.

        11) Provides a maintenance of effort requirement so that states 
can not diminish more enriched programs already being provided.

        12) Allows enhanced match (up to 90% Federal funding) for 
individuals whose costs exceed 150% of average nursing home costs.

        13) Between 2001 and 2005, after which the services become 
permanent, provides enhanced matches (10% more federal funds each) for 
states which:

       begin planning activities for 
        changing their long term care 
        systems, and/or
       include Community-based 
        Attendant Services and Supports in 
        their Medicaid State Plan.

Systems Change

        14) Provides grants for Systems Change Initiatives to help the 
states transition from current institutionally dominated service systems 
to ones more focused on community based services and supports, guided by 
a Consumer Task Force.

        15) Calls for national 5 to 10 year demonstration project in 5 
states to enhance coordination of services for non-elderly individuals 
dually eligible for Medicaid AND Medicare.

Other MiCASSA Features

        "Over the past few years, we've won some pretty big battles 
together on the ADA, IDEA and many others. But, the greatest danger is to 
rest when a battle is won, but the war is not over." Senator Tom Harkin 
recently wrote ADAPT and other MiCASSA Supporters. "Working together 
we're going to pass MiCASSA because it's good policy, it's good 
economics, and it's unconscionable that people with disabilities are 
denied the basic freedom to live in their own communities."

        The new MiCASSA will include all the pieces of the old S. 1935, 
and a few embellishments. One of the additions will allow states to get 
an enhanced federal match if they select community attendant services and 
supports as one of the Medicaid services they provide. This would mean 
that for a five year period, by choosing the MiCASSA program, states 
could draw down more federal dollars for every state dollar they put into 
these services.
      
        Another enhancement would allow an enhanced federal match for 
individuals whose cost for community services is above the average 
institutional cost. In this way even people with more involved 
disabilities can still receive services in the most integrated setting 
and be given the same choice as others.

       Last but not least, the Department of Health and Human Services 
will be directed to do a demonstration project to evaluate community 
attendant services and supports coordination and cost sharing approaches 
for individuals who are eligible for both Medicaid and Medicare .
       
       With 70 million baby boomers growing older every day, the press 
for these services is only increasing. The disability community, is ahead 
of it's time in calling for MiCASSA and Real Choice.

After months of waiting and an action at the White House, the President's 
Executive Order on Olmstead has finally been released.  Here it is...

EXECUTIVE ORDER

COMMUNITY-BASED ALTERNATIVES FOR INDIVIDUALS WITH DISABILITIES

By the authority vested in me as President by the Constitution and the 
laws of the United States of America, and in order to place qualified 
individuals with disabilities in community settings whenever appropriate, 
it is hereby ordered as follows: 

Section 1. Policy. This order is issued consistent with the following 
findings and principles:

(a) The United States is committed to community-based alternatives for 
individuals with disabilities and recognizes that such services advance 
the best interests of Americans. 

(b) The United States seeks to ensure that America's community-based 
programs effectively foster independence and participation in the 
community for Americans with disabilities.

(c) Unjustified isolation or segregation of qualified individuals with 
disabilities through institutionalization is a form of disability-based 
discrimination prohibited by Title II of the Americans With Disabilities 
Act of 1990 (ADA), 42 U.S.C. 12101 et. seq. States must avoid 
disability-based discrimination unless doing so would fundamentally alter 
the nature of the service, program, or activity provided by the State.

(d) In Olmstead v. L.C., 527 U.S. 581 (1999) (the "Olmstead decision"), 
the Supreme Court construed Title II of the ADA to require States to 
place qualified individuals with mental disabilities in community 
settings, rather than in institutions, whenever treatment professionals 
determine that such placement is appropriate, the affected persons do
not oppose such placement, and the State can reasonably accommodate the 
placement, taking into account the resources available to the State and 
the needs of others with disabilities.

(e) The Federal Government must assist States and localities to implement 
swiftly the Olmstead decision, so as to help ensure that all Americans 
have the opportunity to live close to their families and friends, to live 
more independently, to engage in productive employment, and to 
participate in community life.

Sec. 2. Swift Implementation of the Olmstead Decision: Agency
Responsibilities. (a) The Attorney General, the Secretaries of Health and
Human Services, Education, Labor, and Housing and Urban Development, and
the Commissioner of the Social Security Administration shall work
cooperatively to ensure that the Olmstead decision is implement- ed in a
timely manner. Specifically, the designated agencies should work with
States to help them assess their compliance with the Olmstead decision and
the ADA in providing services to qualified individuals with disabilities
in community-based settings, as long as such services are appropriate to
the needs of those individuals. These agencies should provide technical
guidance and work cooperatively with States to achieve the goals of Title
II of the ADA, particularly where States have chosen to develop
comprehensive, effectively working plans to provide services to qualified
individuals with disabilities in the most integrated settings. These
agencies should also ensure that existing Federal resources are used in
the most effective manner to support the goals of the ADA. The Secretary
of Health and Human Services shall take the lead in coordinating these
efforts. 
 
(b) The Attorney General, the Secretaries of Health and Human Services,
Education, Labor, and Housing and Urban Development, and the Commissioner
of the Social Security Administration shall evaluate the policies,
programs, statutes, and regulations of their respective agencies to
determine whether any should be revised or modified to improve the
availability of community-based services for qualified individuals with
disabilities. The review shall focus on identifying affected populations,
improving the flow of information about supports in the community, and
removing barriers that impede opportunities for community placement. The
review should ensure the involvement of consumers, advocacy organizations,
providers, and relevant agency representatives. Each agency head should
report to the President, through the Secretary of Health and Human
Services, with the results of their evaluation within 120 days. 

(c) The Attorney General and the Secretary of Health and Human Services 
shall fully enforce Title II of the ADA, including investigating and 
resolving complaints filed on behalf of individuals who allege that they 
have been the victims of unjustified institutionalization. Whenever 
possible, the Department of Justice and the Department of Health and 
Human Services should work cooperatively with States to resolve these
complaints, and should use alternative dispute resolution to bring these 
complaints to a quick and constructive resolution. 

(d) The agency actions directed by this order shall be done consistent 
with this Administration's budget.

Sec. 3. Judicial Review. Nothing in this order shall affect any otherwise 
avail-able judicial review of agency action. This order is intended only to 
improve the internal management of the Federal Government and does not 
create any right or benefit, substantive or procedural, enforceable at 
law or equity by a party against the United States, its agencies or 
instrumentalities, its officers or employees, or any other person. 

GEORGE W. BUSH
THE WHITE HOUSE
June 18, 2001

Medicaid in Fiscal Year 2000
by Steve Gold
Medicaid is the primary payment source of health care for disabled and 
low-income persons. It is also the primary payment sources of what we 
call Personal Attendant Services. Where the Medicaid dollars go shows 
whether persons with disabilities receive services in "the most 
integrated setting" as the Supreme Court required in the Olmstead 
decision, or whether persons with disabilities receive their health care 
services in segregated settings.

        Medicaid's "long term care expenditures" (mostly PAS) can be 
broken down into (1) community-based services (which includes the 
Personal Care Option, Home and Community-Based Services Waiver, and Home 
Health Care) versus (2) institutional-based services (which includes 
Nursing Homes and Intermediate Care Facilities for persons with Mental 
Retardation) ICF-MRs, and range from 200 bed institutions down to 6 bed 
group homes.

        In federal fiscal year 2000, the long term care expenditures 
were: 6% for the personal care option, 18% for waivers, 3% for home 
health care, 58% for nursing homes and 15% for ICF-MR. Therefore, 73% of 
Medicaid's long term care money went to keep persons with disabilities 
institutionalized and 27% went to provide services in the community.

        Let's compare fiscal year 2000 with some earlier years. In fiscal 
year 1992, long term care expenditures were: 6% for the personal care 
option, 5% for waivers, 3% for home health are, 62% for nursing homes, 
and 23% for ICF-MRs. Therefore, 85% institutional versus 15% in the 
community. In fiscal year 1995, long term care expenditures were: 6% for 
the personal care option, 9% for waivers, 4% for home health care, 61% 
for nursing homes, and 19% for ICF-MRs. Therefore, 80% institutional 
versus 20% in the community. In fiscal year 1998, long term care 
expenditures were: 6% for the personal care option, 15% for waivers, 3% 
for home health care, 58% for nursing homes, and 17% for ICF-MR. 
Therefore, 75% institutional versus 25% in the community.

        Thus, we have shifted Medicaid's long term care institutional 
bias from 85% in 1992 down to 73% in 2000. On the flip side, we have 
increased the community based services and expenditures from 15% to 27% 
of Medicaid's long term care dollars.

        While these percentages present a national picture, there is a 
great variation among States. Obviously, many States spend far more than 
27% of their long term Medicaid dollars on community services, and other 
states spend far less than 27%. Where is YOUR State? How much progress 
has YOUR State made since 1992? Go to WWW.HCFA.Gov for Your State's 
Medicaid statistics.

        In actual dollars, as opposed to the percentages, Medicaid's 
national total long term care expenditures went from $39 billion in 1992 
to $67.7 billion in 2000. In dollar terms, there was an increase in 
expenditures for community-based services from $5.6 billion in 1992 to 
$18.1 billion in 2000. Unfortunately, there was also an increase in 
institutional expenditures from $33.1 billion in 1992 to $49.6 billion in 
2000.

        Obviously, the most growth in community-based services from 1992 
to 2000 was with waivers which went from 5% to 18% of the overall long 
term care expenditures. However, there has NOT been any substantial 
growth in the two other Medicaid categories of community-based services - 
the personal care option (See the Information Bulletin - 4/11/01 for more 
on the "PC Option") and the home health care.

        In our efforts to expand community-based services, advocates should:

1. Find out what community-based programs exist in your state.

2. Find out if they have waiting lists and how long it takes to receive 
community-based services.

3. Challenge your state Medicaid officials to expand or select the 
personal care option.

4. Force your state Medicaid officials to expand or apply for waivers and 
look into making the home health benefit more consumer directed.

5. Keep on identifying people who want out of nursing homes and other 
institutions and who do not want to go into them.
[The above analyses were derived from data based on the information 
gathered by the MEDSTAT Group, Inc. using the HCFA 64 reports.]

President Hails Success Of
Americans With Disabilities Act

        The Associated Press WASHINGTON (AP) -- President Bush urged 
Congress to strengthen the 11-year-old Americans with Disabilities Act by 
improving transportation for disabled workers and encouraging private 
companies to develop technologies to help them do their jobs.

        In his weekly radio address, Bush said such action would help 
houses of worship, community groups and civic organizations improve 
access for the handicapped.

        The president praised the ADA -- signed into law this week in 
1990 by his father, former President Bush -- for providing disabled 
people greater access to the functions of everyday life.

        Bush said the ADA has given disabled people more options in 
choosing a home, using public transportation, even working and traveling.

        "This has made our country a fairer society, more considerate and 
welcoming to all our citizens," he said. "As people with disabilities 
find more opportunities to use their gifts and talents, we also become a 
stronger, more productive nation."

        But barriers remain, Bush said, "And as long as they stand, our 
work is unfinished."

        Bush said he has instructed Attorney General John Ashcroft and 
Health and Human Services Secretary Tommy Thompson to enforce provisions 
of the law that bar unjustifiable institutionalization of the mentally 
disabled.

        He pledged his best efforts to ensure that disabled Americans 
"are not arbitrarily isolated or kept apart" from the mainstream.

        "During the last 11 years, we have opened the doors of 
opportunity to millions of people with disabilities," Bush said. "And, 
together, we can ensure that everyone with a disability enjoys the 
respect that all citizens deserve."

Year 2000 Medicaid
Long Term Care Data
Here are the latest Medicaid Long Term Care figures done by The MEDSTAT 
Group and summarized by ADAPT.

Medicaid Long Term Care (LTC)
Expenditures in FY 2000


   Total Medicaid Expenditures ------------- $194.35 billion

   Total Medicaid LTC Expenditures -------- $67.70 billion

        LTC as a percentage of Medicaid ---------------- 34.8%

   (58. 5%) Nursing Home Expenditures --- $39.59 billion

   (14. 7%) ICF/MR -------------------------------- $9.96 billion

        (73. 2%) Total Institutional -------------- $49.55 billion

   ( 5.6%) Personal Care Option ---------------- $3.81 billion

   (17. 8%) HCBS Waivers ---------------------- $12.04 billion 

   ( 3.4%) Home Health --------------------------- $2.30 billion

        (26. 8%) Total Community Services --- $18.15 billion

Institutional Services -- 73.2% of LTC Expenditures 
Community Services -- 26.8% of LTC Expenditures

Compliled by ADAPT from data supplied by 
The MEDSTAT Group, Inc. HCFA 64 data, 
Office of State Agency Financial Management

For State by State numbers contact:
www.medstat.com or 617-492-9300

Affordable Private Housing
- A Secret Surprise -
by Steve Gold

Persons with disabilities' number one complaint regards lack of 
affordable accessible housing. In Information Bulletin # 11 (7/17/01), we 
provided information regarding Section 8 Vouchers that are specifically 
for persons with disabilities available by state and by specific housing 
authority. (See www.stevegoldada.com). These Section 8 Vouchers must be 
used for persons with disabilities. Unknown to many advocates, all 
Section 8 Vouchers MUST be accepted by CERTAIN private landlords in good 
private housing and apartment complexes! Some of you will be surprised 
with this list of housing. 

        This is how it works. Since 1988, the IRS has authorized tax 
credits for the new construction or rehabilitation of affordable rental 
housing. These federal tax credits are an extraordinary deal for 
corporations and wealthy individuals. Developers of rental housing entice 
investors with these tax credits which last for 10 years. In exchange for 
tax credits, a developer must set aside a certain percent of the dwelling 
units for low-income families. Rents for persons must be limited to 30 
percent of income. Most of us would not know that a new apartment complex 
received these tax credits. Why? Because most developers do NOT advertise 
that they must accept a Section 8 Voucher. We have put together, by 
state, city, zip code, and street address, the housing developments and 
number of dwelling units that received tax credits from 1991 through 1998 
for ONLY new construction. See www.stevegoldada.com "Tax Credits Between 
1991 and 1998 for ONLY New Construction." If you want more information, 
from 1988 through 1998 and for all acquisitions, rehabilitation, as well 
as new construction, see http://lihtc.huduser.org 

        In order for you to have a complete list, you must contact your 
State's Housing Finance Agency for developments which received tax 
credits from 1998 to the present. We strongly recommend you get this 
complete list because some of the newer apartments might still either not 
be built or have vacancies. 

        One big problem - accessibility. Since 1988, each of these 
housing developments also had to comply with the Federal Fair Housing Act 
that required at least that the new construction have accessible units 
(as do all private and public developments). That's another reason to 
start with the most recent developments. Also, because many developments 
combine tax credits with other federal programs and therefore are 
recipients of federal funds, they could be subject to Section 504's 
requirement of 5% accessible units. [See Information Bulletin # 1 - The 
5% Rule.] Because tax credits are so valuable to businesses and wealthy 
people, if the landlord gives you any difficulty - you should write to 
them and tell them that you will contact the IRS about the tax credits. 
Because they do not want their tax credits either jeopardized, reviewed 
or audited at by IRS, this action should make the developers comply. If 
they do not comply, then write IRS. Tax credit dwellings, apartments and 
developments offer great organizing opportunities and real housing.

Laguna Honda
Tear Down the Walls; There is a Better Way
ADAPT's Fall Action - October 20 - 25, 2001
Imagine living in a 1200 bed nursing facility, over half those beds in 
wards with 30 people in the same room.

        Imagine being told that they will be tearing the building down -  
ONLY to be told they are going to rebuild it.

        Imagine the wealthiest areas in the country being willing to 
spend almost $300 per day to keep ONE person in this warehouse of 
"caring" (over $130 million per year for these 1,200 people) but fighting 
over implementing people's right to live and receive services at less 
than half that cost in the community.

        Imagine that community not even bothering to apply for all the 
housing subsidies available that could give some of these individuals a 
choice to live in the community.

        Imagine EVERY progressive politician, union, church group and 
others supporting 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!

        Imagine EVERY disability group in the area being opposed to that 
bond package BUT being ignored by these same politicians, unions, church 
groups and the voting public.

        This is the Odd Reality at Laguna Honda.

        Unfortunately this is not just a bad dream.  It is the reality of 
what is today going on in San Francisco, California. Laguna Honda, "The 
World's Largest Nursing Facility", will be rebuilt with hundreds of 
millions of public dollars and will then have to continue to house over a 
thousand people with disabilities.

        The irony of the Laguna Honda situation is that 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 nursing facility that many in the 
disability rights community believes violates the spirit, if not the 
letter, of the Supreme Court decision.

        Why? Is there anything we can do to stop it?

        ADAPT believes all things are possible! The people united will 
never be defeatedyor Willie Brown and the SF County Supervisors.  They 
want many disability and aging organizations and individuals sign on to 
this 
petition and send a message to the political leaders of San Francisco.
***** PETITION ***** PETITION ***** PETITION *****
 and supports in the most integrated setting.

We support exploring all alternatives to the rebuilding of Laguna Honda 
as a nursing home and support all efforts to transition/divert people 
with disabilities including seniors from institutional settings.

We support the expansion of accessible, affordable housing, and community 
supports and services throughout the city and oppose the placing of 
seniors and people with disabilities in Laguna Honda because of the lack 
of housing, services and supports.

We call on Mayor Brown and the County Supervisors to hold a public forum 
on the rebuilding of Laguna Honda before January 2002.

Thank you for your support of community services and supports.

Name ________________________________________
Organization _________________________________
Address ______________________________________
City ______________ State ________ Zip __________
Phone _______________ E-Mail __________________
Please e-mail to: jessie@ilrcsf.org 
or mail to: Laguna Honda Petition c/o Independent Living Resource Center 
649 Mission ST 3rd FL San Francisco, CA 94105

Widespread Abuse Found in Nation's Nursing Homes
Congressional Report Details 'Appalling' Incidents of Resident Abuse 
By Sean Martin
July 30, 2001 (Washington) -- Nearly one-third of the nation's nursing 
homes recently violated abuse prevention standards, according to a 
congressional report.

        According to the report, prepared by aides to Rep. Henry Waxman 
(D-Calif.), state inspectors cited nearly 5,300 nursing homes between 
January 1999 and January 2001. In more than 1,600 of these homes - one in 
10 of the nation's nursing residences -- the violations were "serious 
enough to cause actual harm to residents or to place the residents in 
immediate jeopardy of death or serious injury."

        The report said that the most common violations involved the 
homes' failure either to "properly investigate allegations" of resident 
abuse or neglect or their failure to ensure that their staffers didn't 
have documented histories of mistreating residents.

        But the report added that many other incidents involved 
"appalling" instances of verbal, sexual, or physical abuse inflicted on 
residents by workers or by other residents.

        According to the report, the percentage of homes cited for abuse 
has doubled since 1996. That may reflect tougher enforcement efforts, 
Waxman said, but may also indicate an actual increase in abuse that stems 
from 1997 congressional action that cut Medicaid payments to nursing homes.

        There are about 17,000 nursing homes in the U.S. They house close 
to 1.5 million seniors and disabled individuals.

        According to Nancy Walker, a certified nurse aide at a Hartford, 
Conn., nursing home, the average national wage for her position is just 
over $8 an hour. As a result, she said, "a lot of people leave nursing 
home work because they can earn more money working in a hospital or even 
a fast food joint." Walker said that because most nursing homes are 
for-profit operations, "they cut as many corners as they can" to maximize 
their profits.

        Meanwhile, the homes can be stressful places to work. Richard 
Bardos, deputy director of Maryland's Medicaid erbally challenging."

        In response to the report, Charles Roadman, MD, president of the 
American Health Care Association, said, "Our residents are like family, 
and incidents like those described today are extremely rare." Roadman's 
group represents for-profit nursing homes.

        Bruce Rosenthal, spokesman for the American Association of Homes 
and Services for the Aging, tells WebMD, "We don't want people who need 
nursing care to be scared and believe that they should not go into a 
nursing facility." He emphasized that most caregivers are dedicated 
professionals. Rosenthal's organization represents nonprofit and 
religiously affiliated nursing homes.

        "We don't condone the types of abuse that are addressed in this 
report," Rosenthal says. "We believe that nursing homes that exhibit 
consistently poor performance should either clean up their act or be put 
out of business."

        But Rosenthal was critical of "punitive" government policies that 
restrict nurse-training dollars for homes with incidents of substantiated 
abuse.

        Meanwhile, Waxman Monday introduced legislation that would 
increase both federal payments to nursing homes and nurse staffing 
requirements, toughen fines on homes that violate rules, and increase 
Internet disclosure about nursing homes' inspection records and 
complaints filed by residents and families. It would also mandate 
rigorous background checks for potential nursing home workers.

        According to Waxman, "We, as a society, will be judged by how we 
treat our seniors."

Editor's Note: Sadly, these kinds of reports and legislation too often 
become fund-raising opportunities for the nursing home industry. More 
money is poured in but never seems to stop the abuse. Too many 
legislators don't get it that until nursing homes have real competition 
from community based services, until the playing field is level, until 
the money can follow the person, this cycle of abuse and wasted dollars 
will continue.

Around the World
Dutch Officially
Legalize Euthanasia 
(from BBC British Broadcast 
Corporation report, April 10, 2001)

        After decades of common practice, the Dutch have officially 
legalized euthanasia. In an almost two to one vote, the Dutch Senate 
passed the bill, making The Netherlands the world's only country with 
legal euthanasia. Although 10,000 protesters prayed and demonstrated 
against the bill, government ministers said 90% of the public approve of 
legal euthanasia as an individual's right. 

        The law will change little in Dutch healthcare, says psychologist 
Martine Cornelisse of the Dutch Voluntary Euthanasia Society. "However, 
the fact that doctors will now be allowed by law to do this will make 
them feel much better about it." 

        Besides verbal requests, the new law allows citizens to make 
written requests for euthanasia at a designated time as part of their 
wills. "In this case, the doctor must consider any written request to 
die. Though the physician does not have to honor this request, he has to 
study the case seriously," explains Cornelisse.

Around the Nation
Some Votes More Equal
Than Others?
        In June the US Civil Rights Commission, CRC, issued a draft 
report on voting rights violations in the 2000 Florida presidential 
election. According to Washington Post coverage of the report the CRC found:

        "[excerpt]... With regard to accessibility issues, countless 
voters in Florida with special needs were denied their rights to vote due 
to inaccessible precincts and ballots. Voters with disabilities who rely 
on wheelchairs were forced to negotiate steps and unreachable polling 
booths or undergo tremendous humiliation by relying on others to lift 
them into the polling places to exercise their right to vote. Others who 
did not have these options were simply turned away,ng held by Senators 
Fred Thompson and Joe Lieberman on election reform did not bother to 
include any representatives of the disability community.

National Governors' Association Calls for End to the Institutional Bias
Here's an excerpt from the NGA position paper on long term care:
17.2 Eliminating the Institutional Bias

        "Beneficiaries generally prefer to live in their own homes and 
remain as independent as possible, yet current federal eligibility, 
coverage, and paymentedicaid will pay for the bill. The lack of 
responsible coordination and the cost-shifting is unacceptable for 
beneficiaries and the states.

        Federal policies should support states' efforts to address the 
Olmstead decision. Although institutional care must be available and 
affordable to those who need it, federal policies must be redesigned to 
eliminate the institutional bias of the Medicare and Medicaid programs. 
Federal policies should encourage the availability of a continuum of 
services, including additional home- and community-based long-term care 
options, with the goal of preventing or delaying admission into an 
institution for as long as possible. The independence of the individual 
must be maintained and enhanced to the maximum extent possible; family 
efforts to assist the individual must also be supported. Placement in a 
nursing home should be the exception and require significant 
justification, rather than home- and community-based placement being the 
exception and requiring a waiver."

        To find the paper go to: 
http://www.nga.org/nga/legislativeUpdate/1,1169,C_POLICY_POSITION^D_534,00.html

Websites

http://www.MindFreedom.org 
        Support Coalition International and the pychatric survivor 
movement, to join or to sign up for their e-news or newsletter!

http://www.thenthdegree.com 
        The Nth Degree, a disability owned business that supports 
inclusion, diversity and advocacy and mostly with a sense of humor too!

Iowa DHS employs Lies
and Deception
        DHS has failed to work wf the disability community wants PAS we 
will have to go after new appropriations from the Iowa Legislature, which 
is where we were two legislative sessions ago and got line-item vetoed by 
Governor Vilsac at the recommendation of DHS. DHS Continues to shift the 
responsibility and blame to the legislature and Iowa seniors rather than 
assume their public responsibility and commitment to the Feds.

        It is no longer just about PAS it is about integrity and good 
faith; it is about letting DHS know at we will no longer come to the 
table as "token gimps" so that DHS can rake in federal funds to pay staff.

        If we don't stand up for this issue, all of our efforts 
surrounding Olmstead will be blown away in the wind as well. 
        Nika Naylor, Disability Advocate 641-673-3313.

Wisconsin Fighting for 
Community Services
        Four thousand people rallied at the Capitol on April 25th to call 
for more state funding to help people with dime for the Legislature and 
society to get its priorities straight and put people first." Her son, 
Travis Weiler, 21, agreed. Protesters called for an end to the "waiting 
list crisis" for community services. Most money would be matched with 
federal money.

        People First Wisconsin, asked the Wisconsin Legislature to close 
three staten Madison, Union Grove and Chippewa Falls is not only better 
for the residents, but will save state dollars as well.

DOE Disability
Bureaucrats Appointed
        Joanne Wilson has been appointed the new Commissioner of the 
Rehabilitation Services Agency, RSA, which oversees vocational 
rehabilitation and independent living for the Department of Education, 
DOE. She has been the chapter president for the Louisiana Chapter of the 
Federation for the Blind and founder and director of the Louisiana Center 
for the Blind. While serving as president of the Louisiana Rehabilitation 
Services Advisory Council, she was instrumental in making significant 
improvements to the Louisiana Rehabilitation Services appeals process and 
speeding up the approval process for certain adaptive equipment by 
eliminating the bidding process. Also in the DOE, New Mexico director of 
special education Robert Pasternack is to be Assistant Secretary of 
Education for Special Education.

Disabled Students 
Organize Nationally to
 Support Rights
        Founded on February 21, 2001, in response to the US Supreme Court 
Garrett decision limiting the enforcement of Title I of the 1990 
Americans with Disabilities Act NDSU is a national cross-disability, 
student organization. NDSU works to ensure that all disabled students 
have the opportunities they need to learn, the opportunities they need to 
live and work, and the opportunities they need to be full participants in 
their communities and full members of American society. Students with 
disabilities throughout the United States realized the far-reaching 
impact of this decision, and oppose the Supreme Court's pattern of 
undercutting civil rights legislation in America. NDSU is committed to 
everyone's right to equal protection under the law and equal rights 
within society; they don't want to wake up a year or a decade from now 
wishing we'd acted earlier.

        On April 17, 2001, the day after tax day and the 41st anniversary 
of the founding of  the Student Nonviolent Coordinating Committee (SNCC), 
the National Disabled Students Union, NDSU, organized a national 
demonstration, a Leave Out, in reaction to the attacks on civil rights. 
In Chicago and Montana, among other places, groups across the nation Left 
Out of their classrooms, spoke out about the erosion of civil rights and 
rallied in support of disability rights. Students and community activists 
rallied on the UC Berkeley campus to denounce the recent Garrett Case 
ruling they say will open the door to discrimination against the 
disabled. "If the protection of the rights of the disabled is further 
eroded, your civil rights could be in jeopardy next," said Daniel Davis, 
vice president of UC Berkeley's Disabled Students Union. In Rogersville 
in western Pennsylvania high school students, community activists and 
representatives of the independent living movement rallied to show 
support for disability rights and speak out against the attacks on the ADA.

        If you want more information about participating in NDSU, please 
contact Sarah Triano at strian1@uic.edu or 773-463-4776. To subscribe to 
the NDSU list send an e-mail to: listserv@listserv.uic.edu In the body of 
the message type: "SUBSCRIBE NDSU Jane Doe" and replace "Jane Doe" with 
your first and last name.

Power Wheelchairs
        The Senior Wheels USA Program, a nationwide prs available power 
(electric) wheelchairs to senior citizens ages 65 and up and to the 
permanently disabled at no cost to the recipient, if they qualify. Power 
wheelchairs are provided to those who cannot walk and cannot self-propel 
a manual wheelchair and who meet additional guidelines of the program. No 
deposit is required. For information on how to receive the wheelchairs 
for use in the home, call toll free 1-800-246-6010.

New Greyhound Buses
        Greyhound has just begun taking deliveries of the new "G" series 
bus, this is the first over the road bus designed to have a lift in it 
from the beginninnformation Technology Now Required - Section 508
by Dave Yanchulis

        Accessibility requirements for electronic and information 
technology in the Federal sector took effect June 25, 2001 under Section 
508 of the Rehabilitation Act. This law relies strongly on the 
procurement process to ensure compliance and requires that such 
technology meet standards issued by the Access Board last December. 
Computer hardware and software, websites, phone systems, fax machines, 
copiers, and similar technologies are covered. The standards spell out 
what makes these products accessible to people with vision, hearing, 
mobility and other disabilities.

        For information on Section 508 go to 
http://www.access-board.gov/508.htm and 
http://www.access-board.gov/news/508.htm. These pages include links to 
other key sources of information. Send questions on the 508 standards to 
the Access Board at 508@access-board.gov or call (202) 272-5434, ext. 127 
(voice), (202) 272-5449 (TTY)

HCFA Becomes Centers
for Medicare & Medicaid
 Services, CMS
        The Health Care Financing Administration (HCFA) is now the 
Centers for Medicare & Medicaid Services (CMS) Health and Human Services 
Secretary Tommy G. Thompson announced in June. Three new business centers 
are being established as a part of the reform: the Center for Beneficiary 
Choices, the Center for Medicare Management, and the Center for Medicaid 
and State Operations. "More changes are on the way," Secretary Thompson 
stated. "We're going to keep fine-tuning this department so Americans are 
receiving the highest quality health care possible." The new CMS will 
launch a national media campaign to educate seniors and other Medicare 
beneficiaries about their options. In addition, their 1-800-MEDICAID 
number (1-800-633-4227) is being enhanced to provide service to 
beneficiaries 24 hours a day, seven days a week.

ADAPT of Erie goes
to the Movies

        On August 2 2001, ADAPT of Erie held a protest at their local 
CINEMARK movie theater, "Tinseltown". We demanded they address 3 ADA 
violations:
1. Accessible parking that complies with the ADA.
2. Doors are too heavy for someone in a chair to open.
3. Accessible seating in restaurant area.

        As a condition for our departure that evening the Management had 
to work with us to get a meeting with corporate.

        15 ADAPTers went to the movies that night. We began the protest 
with signsown management and informed them that we had the constitutional 
right to assemble. (He didn't say one word to us.) Once management 
realized they weren't going to get any help from the cops, negotiations 
began.

        Management called Plano Texas to corporate headquarters. 
Corporate agreed to come to Erie and meet with ADAPT in August.

        We had great media coverage, two of the three TV stations and the 
Erie Times newspaper.

Passages
Diana Kurylak
Long Time ADAPT Leader is Gone
by Nan Hildebrand
        Diana Kurylak of Boulder ADAPT passed away just before the spring 
action. She had been having health problems lately and had just been in 
the hospital. Definitely her own person and a real fighter, she was the 
Advocacy Organizer for the Center for People with Disabilities. She had 
been involved with ADAPT for many, many years, serving as a contact 
person for Boulder for a long time as well. Diana spent her last days 
raising money for the spring action and organizing Boulder's Fun Run. Her 
passion never flagged; her ability to make friends and supporters of the 
cause was monumental in Boulder. Above all, Diana had the gift of 
compassion, friendship for all and when she combined those qualities with 
her stewardship for ADAPT, she was powerful. We loved her and miss her. 

Byron Hackney
St Louis Loses a Champion
by Mary O'Brien
        Our friend and compatriot Byron Hackney of St Louis ADAPT died 
July 5, 2001. His Mom had been going through health problems and died 
that morning at 8:30AM. Byron had a massive heart attack and died at 4PM 
that same day.

        Byron, 47, was an active ADAPT member. He first saw us on the 
news when the National Governor's Association came to St Louis and ADAPT 
protested their convention and the institutional bias of the way Medicaid 
dollars are spent. Byron loved to tell the story of how he saw us and 
decided that was the group he wanted to belong to; not feeling sorry for 
ourselves, but out in the community making change for all people. He 
spent some of his last visit to DC chained to the White House fence. He 
loved to be on the line chanting and educating. And Byron was always fun 
to be around. His stylish red beret stood out in any crowd. He was 
compassionate, gentle, intelligent and a friend to count on. Saying we 
will miss Byron is so inadequate. We will always miss him. Donations to 
the family would be appreciated.

Robert Smith
New ADAPT Member  made a 
Difference with his Life
by Gayle Hafner

        Maryland ADAPT's Robert Smith, known as Bob to those who knew him 
longest, passed away May 16th after spending what he called "three of the 
best days" of his life in Washington DC at the ADAPT action. This was the 
first time in 13 years he had been out of the nursing home for more than 
a day. He was waiting and waiting for the community services that would 
have allowed him to leave that nursing home. In his honor and in his 
memory MD ADAPT returned to DC July 9th to celebrate his birthday, as he 
had asked them to, share his extraordinary sculptures and memories of 
this freedom fighter, and dance to "Bob's music." They also paid a visit 
to his Governor to ask "Why did Robert spend 13 years where he did not 
want to be?"

Kathy Henry
West Coast ADAPTer Passes On
by Connie Arnold
        Kathy Henry a California ADAPT member active in the early 1990s, 
passed on June 4, 2001 during her sleep from advanced Lyme's Disease. She 
went with the California ADAPT group of eleven people in May 1993 to 
Washington, DC to fight for national attendant services. A very cool 
lady, a friend, and a disability rights advocate, she made the cover of 
an SEIU publication in the 1990s holding ADAPT signs telling National 
Home Care to go home. She will be missed by all who knew her.

Incitement
Topeka Independent Living Resource Center
501 SW Jackson St
Topeka, KS 66603
Address Service Requested.

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