Wednesday, July 30, 2003
By Kurt Bresswein
Though she battles chronic illness, Peggy Dougherty considers herself lucky to have gotten out of a nursing home in the early 1990s.
In September, she plans to join 200 people with disabilities traveling from Philadelphia to Washington, D.C., to help others live more independently, too.
The group is rallying for the passage of federal legislation that would make states pay for community- and home-based medical care as an alternative to long-term care facilities.
"People like me do not want to live in nursing homes," said Dougherty, 63, of Easton. "We want to have the freedom of choice to live out here in affordable, accessible housing -- you know, an apartment that we can live in. And that is what this march is all about."
Disability In Action, a nonprofit group with offices in Philadelphia, is organizing the march for ADAPT, a coalition of supporters for the rights of people with disabilities. It started in 1983 campaigning for wheelchair lifts on public transportation vehicles.
ADAPT stands for American Disabled for Attendant Programs Today, and the group is pushing for equality in federal and state support for attendants and resident-care facilities.
"A lot of people are put in nursing homes because basically they require very simple things that they could receive in their homes for a lot less money to the state and the U.S. federal government," said Jimmi Shrode, an organizer for Disabled In Action.
Legislation that the Sept. 4-17 march supports is known as MiCASSA, or the Medicaid Community-Based Attendant Services and Supports Act of 2003.
U.S. Sen. Tom Harkin, D-Iowa, introduced the measure in May with 11 co-sponsors. Sen. Arlen Specter, R-Pa., and Sens. Jon Corzine and Frank R. Lautenberg, both D-N.J., are co-sponsors.
Rep. Danny K. Davis, D-Ill., introduced identical legislation in the House of Representatives with 73 co-sponsors -- 60 Democrats, 12 Republicans and one Independent.
The bill would amend the Social Security Act to require that state Medicaid plans cover community- and home-based attendant services for some Medicaid-eligible people.
It would also address disparity in state support for at-home services, which is now optional.
Shrode said Pennsylvania runs an attendant services program that receives $35 million to $40 million a year in federal money compared to the $3 billion a year the state receives to subsidize long-term care facilities.
Dougherty said she has counseled about 15 people about leaving nursing homes since she joined Disabled In Action in 1995.
She said she got involved in 1989 after waking up in a nursing home in Fort Worth, Texas, from a 20-day coma. She had gone there to finish her education as a registered nurse. Shortly after graduation, she had the stroke-induced coma.
Dougherty said she was left in a bathtub at the home for 2 hours, and that she witnessed staff abusing residents.
"I couldn't wait until I got out," she said.
She returned to Easton, where she was born. One of her sons, Brian K. Marsteller, is missing. She said she has not heard from him for decades and does not know what happened to him. In April 2001, another son, Richard J. Geddes, died. She said she has little contact with the rest of her family.
Dougherty also sufferers from multiple sclerosis and fibromyalgia and has had three heart attacks. She does not need help getting around the Easton Housing Authority senior apartment she rents on South Fourth Street. But outside she uses a wheelchair, and she has regular help from her attendant, Michele Abel.
Abel plans to join Dougherty on the 144-mile march, as does 60-year-old Ronald Greenleaf from the 600 block of Northampton Street.
Shrode said he expects about 225 people to join the route between the Liberty Bell and the Upper Senate Park in Washington.
Disabled In Action is soliciting donations of money for camping equipment the marchers will use, for vans to be used on the trip, for participants' hotel rooms in Philadelphia and Washington, and for food and refreshments.
Regulators of long-term-care facilities in Pennsylvania and New Jersey say they support patients' choice of help for disabilities or aging. But they defend nursing homes and facilities from criticism that residents get sub-par care.
"People thrive in facilities where they have not done as well on their own without professional oversight, routine monitoring of psychological and medical health (and) a lot of other things," said Paul Langevin, president of the Health Care Association of New Jersey. The association is a 50-year-old nonprofit agency representing 350 long-term and acute-care facilities.
In New Jersey, all aides working in facilities must undergo background checks and fingerprint-history checks every two years. Failing the checks means they lose their certification awarded after 90 hours of training.
"Overall nursing homes provide good quality care, and the nursing home industry is extremely regulated where the home- and community-based services are not regulated at all," said Holly Lubart, spokeswoman for the Pennsylvania Health Care Association.
Lubart said her association still supports patient choice for the care they need -- the goal of the MiCASSA law.
"We're not saying that nursing homes are the only answer," she said, "but what we're saying is there certainly is a need for nursing homes."
( To support the march in September, send goods or money to DIA of PA
Inc.- Free Our People March, 125 S. Ninth St., Suite 700, Philadelphia,
Copyright © 2003, The Express-Times