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Still Not Equal - No Place Like Home

Article By: Observer Reporter
Published: 1998-07-26
By: Joe Smydo and Stan Diamond

Article has been reformatted for archival purposes.

On a dreary February day 13 days after Don Fulk died, his friends gathered for a memorial service in a South Strabane Township church.

They recited essays and poems that Fulk had written, made short speeches praising his character and played a recording of "Free Our People," one of the patriotic songs of the disability rights movement:

The industry of care has empty graves to fill. How many gifted people are caged against their will?

Many in the room knew of Fulk's "escape" from an Oklahoma nursing home about 19 months before, knew that two friends had met him in a park, bundled him into a van and fled to Pennsylvania.

Other friends found him an apartment in Washington and got him into an attendant care program, which sends helpers into the home to assist a person who is disabled with bathing, dressing and other daily activities.

Oklahoma, Pennsylvania and other states offer attendant care to carefully defined segments of the disability community and maintain waiting lists for those who cannot be served right away for budgetary reasons.

States often limit the number of people they serve because they have to match the federal dollars used to subsidize the service.

States can restrict eligibility by age, mental state, income and type of disability, and individuals who can be kept in nursing homes at a lower cost are sometimes excluded from attendant care programs.

"Under each of these programs, personal attendant care is provided at the option of the state, and the service must compete for funding among many other authorized services," said a Nov. 25, 1997, report by the Congressional Research Service.

"Therefore, personal attendant care may not be uniformly available across the states, and in certain circumstances, within a state ... Each of these programs has different eligibility criteria and administering authorities."

Diane Coleman, the singer of "Free Our People," said home-based care is a matter of states' rights, just as segregation was during the 1950s and '60s.

Looking for uniformity, broader eligibility criteria and the elimination of waiting lists, disability rights advocates want to replace the hodgepodge of state programs with a national attendant care initiative.

The plan would make attendant care an entitlement program for the poor disabled, enabling them to leave nursing homes or avoid going into them in the first place. Nursing home care is already an entitlement.

Advocates say people with disabilities lead happier lives in their own homes. Those who live in nursing homes are said to be "segregated" from society, and they're called "slaves" of profiteer owners.

What's a human life to you and me? Isn't it a right that all be free? Not just those who run the minute mile. And not just those who wear a Colgate smile.

Fulk's friends belong to ADAPT, which formed in the 1980s to fight for wheelchair-accessible buses and now fights for attendant care as well. The group's name has a double meaning: American Disabled for Accessible Public Transportation and American Disabled for Attendant Programs Today.

Fulk's flight from Oklahoma made the July-August 1997 edition of the disability rights magazine Mouth. "Thanks to the Lord for my escape from the nursing home. Miracle!!" wrote Fulk, who was deaf and quadriplegic.

Oklahoma offers attendant care through at least three "waivers," or exceptions, to the Medicaid program.

One waiver enables residents to leave intermediate care facilities for the mentally retarded or avoid going into them in the first place. Fulk was not eligible for this program, which has a waiting list of 2,400 people.

The second waiver enables residents with mental retardation and "related conditions" to leave nursing homes. Fulk was not eligible for this program, either, because it is available only to those who had been living in nursing homes for at least 30 months before the waiver was implemented.

The third waiver targets people with physical disabilities and the frail elderly, said Tom Dunning, programs administrator with the state Department of Human Services.

To be eligible for the program, the person's care in the community must cost less than the care the individual would receive in a nursing home. Dunning said the program is not meant for a person requiring 24-hour care, which Fulk had in Pennsylvania.

In addition to the waivers, Oklahoma provides personal care service through its state Medicaid plan. This program is not designed to provide 24-hour care, either, and the service is provided only in the home, said Norma Goff, programs administrator with the Department of Human Services.

Betty Fulk said her husband entered a nursing home because Oklahoma didn't provide the amount of attendant service that he needed. Also, she said dependable attendants were difficult to find.

"He was stuck," she said. "He lost his independence .... and that's not right at all."

When he got to Pennsylvania, Fulk first stayed with Kathleen Kleinmann, executive director of Tri-County Patriots for Independent Living (TRIPIL) in Washington. He then went to a hospital, then a nursing home, then an apartment, where he received attendant care through TRIPIL.

The state operates a number of attendant care programs. Kleinmann said Fulk was enrolled in a program for residents who acquired their disabilities before the age of 22.

Fulk died Feb. 4, in his own bed, in his own home, holding a Bible. And that, his friends say, is the way it should be.

Free our brothers, Free our sisters, too. Free our people now. It's what you got to do.

In June 1997, about 200 members of ADAPT marched through the streets of Washington, D.C., to demand a national attendant care program. They chanted, "Up with attendant care, down with nursing homes," and handed fliers to passersby.

"What's the difference between a nursing home and a jail?" asked one flier.

"The uniforms are different.

"The weapons are different. In jails, it's a gun. In a nursing home, it's pills."

"The parole is different. In jail, you serve your sentence and get paroled. In nursing homes, there's no parole. You're in for life."

On the other side of the flier was a picture of a giant hand that had reached through a window to pluck a woman out of her wheelchair. The flier asked, "Is there a nursing home in your future?"

The march ended at the Capitol, where the protesters held a sit-in to pressure House Speaker Newt Gingrich into introducing an attendant care bill that ADAPT helped draft.

Jackie Mullins took part in the protest. An employee of The Ability Center of Greater Toledo, Ohio, Central City office, she has worked to get people out of nursing homes, saying there's nothing home-like about them.

"Your dignity is stripped, snatched away," she said. "Someone tells you when to eat, when to sleep."

Gingrich introduced House of Representatives bill 2020, the Medicaid Community Attendant Services Act, the day after the protest. The bill is known by the acronym MiCASA; "mi casa" means "my home" in Spanish.

The bill would require states to offer attendant care to a person of any age, with any disability, provided the individual is eligible for Medicaid and qualifies for nursing home or ICF-MR care. Advocates hope the program would keep people like Fulk from falling through the cracks in the system.

The amount of care would be based on an "assessment of functional need." Those who need 24-hour service would get it, said ADAPT leader Mike Oxford of Topeka, Kan.

A person would be able to use attendants not only at home, but at work and in other settings. Advocates say MiCASA would help boost employment among people with disabilities and enable them to take advantage of recreational opportunities.

The cost of an individual's care would not be taken into consideration. Rather, the bill stipulates that the national program costs not exceed the amount that would be spent caring for the beneficiaries, collectively, in nursing homes and institutions.

U.S. Sen. Russell D. Feingold, D-Wisconsin, also has introduced a bill to expand community-based services for people with disabilities. Mike Auberger, an ADAPT leader from Colorado, said the drawback is that states would not be required to offer the services.

ADAPT says more than 400 disability rights groups support MiCASA, and the bill has 60 co-sponsors in the House. However, MiCASA's fate is far from assured.

The Congressional Budget Office estimates that the program would cost an exorbitant amount, $10 billion to $20 billion a year.

Advocates claim that community care is less expensive than nursing home care in many cases, and an Oct. 14, 1997, CBO report says the government may save some money through a reduction in nursing home use.

However, CBO predicted that MiCASA actually would increase costs by extending service to people already living in the community without government assistance. These people would qualify for free nursing home care now, but they have remained in the community with the help of "informal caregivers," CBO said.

"Unlike services under home- and community-based waivers, which states can limit by imposing waiting lists, or by nursing home services, which are constrained by capacity limitations, attendant care services under HR 2020 would be open-ended," CBO said. "States could not limit the number of participants because the benefits would be mandatory ..."

A former Waynesburg resident now making her home in the Allentown area, Peggy Dougherty is among those who already live in the community and would like to receive services under MiCASA.

Multiple sclerosis has left Dougherty unable to use her right hand, so she struggles with her makeup and with the buttons and zippers on her clothes. In coming years, her need for assistance is likely to be much greater.

"My M.S. is coming down on me," she said.

Jim Steedle, a Finleyville resident who is quadriplegic, waited for attendant care from 1993 until November 1997 and would like to continue receiving it under MiCASA.

Kleinmann's agency, which once administered attendant care programs, blamed the wait on a shortage of money. Steedle, however, fears he was denied care because he opposed the agency's involvement in ADAPT-style protests.

Before getting attendant care, Steedle spent many days at home in bed. His wife, Mary, works and he was unable to care for himself.

Steedle said his quality of life has "gone way up" with attendant care. He gets out of bed more often, and he does not feel so lonely with an attendant around 33 hours a week.

Since 1990, promoters of MiCASA have crisscrossed the country to fight for the program.

On more than 20 occasions, ADAPT has protested at the conventions, headquarters and state affiliates of American Health Care Association (AHCA), which counts nursing homes among its members. ADAPT claims the association opposes MiCASA because it would take money from nursing homes.

"In the past, ADAPT members have chained themselves to buildings, locked people in rooms, deflated car tires, obstructed entrances and exits and disrupted meetings," AHCA said in a statement.

Two months ago, ADAPT unveiled the "10 Worst State Awards," recognizing the states that the group considers to have the poorest home-care programs in the nation. Pennsylvania was not one of the 10, but it received a "dishonorable mention."

"People are forced into nursing homes and other institutions simply because the system doesn't allow them to use Medicaid and other state funds to purchase services in their own homes," ADAPT said at the time.

AHCA does not appreciate ADAPT's vilification of nursing homes. AHCA says ADAPT has spurned the suggestion that the groups team up to ensure adequate funding for a range of long-term care services, including attendant care, nursing homes and personal care homes.

"ADAPT kind of debates the whole issue from the 1970s view in the sense that in the '70s, there was basically one long-term care option: nursing homes. That's not true today. There are many options out there. Indeed, it's called the continuum of care," AHCA spokesman David Kyllo said.

ADAPT has tried to pressure other groups, including the American Nurses Association and the National Association for Home Care, into supporting MiCASA. ADAPT has singled out government officials for protests, too.

In October 1990, ADAPT protested at Morehouse College in Atlanta, hoping to force a meeting with Louis Sullivan, an alumnus who was U.S. secretary of health and human services at the time. Morehouse also was the alma mater of the Rev. Martin Luther King Jr.

The National Association of Protection and Advocacy Systems supports MiCASA. But the members of NAPAS have shown that legislation isn't the only way to move people with disabilities out of nursing homes.

In 1989, Pennsylvania Protection and Advocacy Inc. and the Association for Retarded Citizens sued the state Department of Public Welfare, claiming people with mental retardation should be moved out of Western Center and into the community.

Under a settlement, residents began moving out of the Cecil Township institution and into group homes and apartments throughout the region. In January, the department announced it would close the institution in 1999.

The former Western residents receive attendant care and other community services through a waiver program, according to ARC-Allegheny.

Philadelphia attorney Stephen Gold and Disabilities Law Project, a subcontractor of Pennsylvania P&A, teamed up in another important case simply called "Helen L."

In a 1993 lawsuit, the advocates argued that Helen and other plaintiffs were being kept in institutions and nursing homes in violation of the Americans with Disabilities Act, which requires that people with disabilities be served in the most integrated setting appropriate to their needs.

At the time, one or more of the plaintiffs were on a waiting list for attendant care, and the state had fewer attendant care programs than it does now, said Gold, an ADAPT member who specializes in disability law.

The advocates lost in U.S. District Court in Philadelphia, but won on appeal to the Third Circuit. The state appealed to the U.S. Supreme Court, which refused the case.

The case has helped advocates get a lot of people out of nursing homes in the Third Circuit. Gold said, "All we have to do is say Helen L."

-- End of Part 3

Other Parts of the Story

• Part 1. Freedom Fighters:
  The disability rights movement is a struggle for independence, respect and equality. And that fight is far from over.
• Part 2. Access is a Civil Right:
  People with disabilities encounter barriers daily.
• Part 3. No Place Like Home:
  Disability rights advocates want to replace the hodgepodge of state programs with a national attendant care initiative.
• Part 4. Peers, not Classmates:
  Children with disabilities find themselves fighting for equal opportunities in the classroom.
• Part 5. 'We Will Ride':
  Transportation remains an acute problem, especially in rural areas.
• Part 6. Myths and stereotypes:
  People with disabilities are fighting attitudinal barriers, as well.
• Return to Main Article

Behind the Story

• Reporter Joe Smydo, 28, graduated from Washington and Jefferson College in 1991 with a degree in history. He was a staff writer at The Pittsburgh Press before joinging the O-R in June 1993. He covers county government and politics and has won Keystone and Golden Quill awards.
• Photographer Stan Diamond, 55, is a native of Burgettstown who began his career in 1966 in the Greene County Bureau in Waynesburg. He was a general assignment reporter and the bureau's primary photographer. In 1985, he transferred to the Washington office as a photographer. He has won several Keystone Press awards for his photography.

Copyright

Copyright © 1998 Observer Publishing Co. - Republished with permission