Mr. Speaker, I am pleased to place in the Record this important article from the January 28, 2003 Washington Post. This article provides an excellent description of the importance of independent living for people with disabilities and the…
Mr. Speaker, I am pleased to place in the Record this important article from the January 28, 2003 Washington Post. This article provides an excellent description of the importance of independent living for people with disabilities and the challenges they face in securing the independence they seek. Too often people with disabilities, like Mr. Schneider who is featured in the article, find independence an uphill battle--not because of their disabilities, but because of government policies that promote dependence and institutionalization.
I was particularly pleased to see that one of my constituents who passed away in 1995, is featured in this article. Ed Roberts was the original barrier buster! Living in an iron lung, Ed enrolled at the University of California at Berkeley in the 1960's and went on to become the state director of vocation rehabilitation for the State of California. Ed helped found the Berkeley Center for Independent Living--a center that served as the model for centers across the country that are now funded by the federal government to support the independence of people with disabilities.
Berkeley is the heart and soul of the disability rights movement as evidenced by Ed's legacy and the many vibrant disability organizations that continue to operate there today. In honor of Ed and his legacy, nine of these organizations have come together to create the Ed Roberts Campus. This important facility will be built at the BART Ashby stop. It will serve as a transit-friendly center in which people with disabilities can meet their own needs for advocacy, training, and independence and can actively participate in a movement that promotes their full integration into society.
The Ed Roberts Campus will serve as a national and international model of independence for people with disabilities. The nine organizations that make up the Ed Roberts Campus are the Bay Area Outreach and Recreation Program, the Center for Accessible Technology, the Center for Independent Living, Computer Technologies Program, Disability Rights Advocates, Disability Rights Education and Defense Fund, Through the Looking Glass, Whirlwind Wheelchair International and the World Institute on Disability.
I urge my colleagues to join me in supporting the creation of this important campus that celebrates the independence of people with disabilities and honors the legacy of a great man who led the way for so many of us--Ed Roberts.
[From the Washington Post, Jan. 28, 2003]
Independent Living's Real Costs
(By Susan DeFord)
Going to bed is one of Richard Schneider's daily
accomplishments.
With the movement he retains in his right arm and fingers,
Schneider each evening turns the radio to softly playing jazz
and guides his motorized wheelchair next to his bed. Morita,
his black cat, looks on.
Schneider reaches up for a black remote control hanging by
a cord from a motor that rides on a ceiling-mounted metal
track. A metal clasp dangles from the device, and he hooks
this onto the catch of a lightweight fabric sling he wears
like a vest. With the remote control he operates the motor to
lift himself in the sling out of his wheelchair and onto his
bed. The maneuver ends as Schneider pulls up the bed covers
up with a clawlike wooden stick. The whole process takes
about half an hour.
Schneider, a 58-year-old retired research scientist, sums
up his achievement simply: ``I can go to bed when I want to
go to bed.''
Schneider lives on his own despite the effects of multiple
sclerosis, an incurable, degenerative disease of the nervous
system that over three decades has robbed him of movement in
his legs, torso and left arm. He has never lived in a nursing
facility, and now makes his home in the remodeled basement
of a ranch house he purchased in 2001 in a semi-rural stretch
of southern Howard County.
``Having other people do things I can do myself is not the
way I want to live,'' said Schneider.
An array of social and technological improvements has
sustained Schneider as his MS has advanced. Increasingly,
people with severe disabilities are pursuing ways to avoid
institutional care or the constant presence of a human
caretaker.
That strategy ``is eminently feasible,'' said Michael
Dalto, administrator of Maryland's assistive technology
program, which in four years has made 197 loans for equipment
such as hospital beds, special computer keyboards and
accessible vans, ``It's beginning to happen more and more.''
Independence advocates argue that federal and state
governments should put more money into getting the disabled
out of institutions, where an estimated 2.1 million reside,
according to a five-year-old estimate from the San Francisco-
based Disability Statistics Center. (More recent figures are
hard to come by; the Bureau of the Census, for example,
doesn't report the number of disabled people living in
nursing homes or group homes.)
More than 80 percent of Medicaid money spent annually on
long-term care goes to institutions, with community and at-
home services getting the remaining 20 percent, according to
advocates. They want federal legislation to let people with
disabilities decide where they will receive government-funded
services, rather than having the government direct most of
its money for assistance to institutions.
``It's what most people want and what costs [government]
the least,'' said Gayle Hafner, a staff attorney with the
Maryland Disability Law Center.
But for Schneider, the struggle to stay independent is
ever-present, in his complicated physical needs, in his face-
offs with health care bureaucrats, in the simple frustration
of dropping a book and not being able to pick it up. And with
no spouse or family close by, independence sometimes feels
like isolation.
``I'm living close to the edge,'' Schneider said.
Born in the '60s
The notion that the disabled could live independently
emerged at the University of California in the political
ferment of the 1960s, and one of its principal proponents was
a student who spent most of his days in an iron lung. Ed
Roberts went on to become the director of a state agency in
California and founded a disability think tank before his
death in 1995. But he got his start organizing the Berkeley
Center for Independent Living. That was the precursor of 450
centers throughout the United States and its territories that
aim to make communities more accessible and give people with
disabilities the power to make their own decisions.
``People with disabilities have the right to live in their
own homes, achieving their independence just like everyone
else,'' said Jamey George, executive director of the Freedom
Center, a Frederick-based agency. Like other independent
living centers, the Freedom Center offers people with
disabilities peer support and referrals and prods government
agencies for more community-based services.
This approach was just getting its start in 1971 when
Schneider first noticed a needle-like tingling in his legs
and had an episode of blurred vision.
Schneider, a promising doctoral candidate at the University
of Pittsburgh, was distraught when he received his diagnosis
of MS, and bewildered family members asked if he would get
better.
``I knew what that meant for my life,'' said Schneider.
More than 30 years later, he's strapped into his wheelchair
to control involuntary muscle spasms, a plastic bag draped on
his lap to collect urine through a catheter, and his feet
swathed in foam padding to keep his skin from disintegrating
into bedsores. He takes seven medications daily, he wears a
24-hour emergency response necklace, and he's been
hospitalized 22 times.
Physical therapy after one hospitalization a few years back
got Schneider momentarily standing upright. It brought tears
of joy to his eyes.
There's no cure for MS, which causes the body's immune
system to erode the fatty sheath of myelin around nervous
system fibers, impairing the transmission of impulses to
muscles and other organs. Since Schneider's diagnosis, drugs
have emerged to slow the disease's interference with the
body's immune system.
Though neurologists initially offered Schneider little in
the way of treatment, they told him to get on with his life,
that it would be years before the disease's symptoms became
severe.
Schneider adjusted, finished his doctorate and launched a
research career in neurobiology at the University of Maryland
Medical School in Baltimore. A photograph of him from those
days shows him leaning slightly as he stands in a white lab
coat and bow tie, a solemn expression in his deep-set eyes.
He was intent on his investigation of the body's sensory
detection system, mindful that the clock was ticking. Over
the course of a decade, he went from occasional awkwardness
in walking to using a cane and crutches, then a motorized
scooter. He retired on disability in 1981, but continued his
research in the 1980s as a guest worker with the National
Institute of Mental Health in Bethesda and at universities in
Montreal. In late 1992, he developed a contracture in his
right leg, and it bent permanently as muscles locked into
place. With the contracture and growing loss of strength in
his upper body, it became increasingly difficult for
Schneider to move on and off the stair glide in his three-
story Columbia townhouse.
At this point, Schneider contemplated a move to a nursing
facility, and his top pick was Inglis House in Philadelphia,
a 125-year-old institution that cares for the severely
disabled and draws many younger residents to its self-
described ``wheelchair community,'' But administrators
acknowledged that Inglis House would be a bad fit for
Schneider, a man who invests online, who has his computer
speak to him in a sultry feminine German voice and who's
written a work of fiction about people with disabilities.
``Intellectually, it would be hell for me, and I do have an
intellectual life,'' said Schneider, who was told during a
visit that Inglis House couldn't accommodate his computer in
his room.
In 1995, Schneider teamed up with his Howard County friend
Maria Turley, who also had MS and wanted to stay out of a
nursing facility. Turley, who died last year, approached her
pastor and members of her church, the Orthodox Church of St.
Matthew. A group formed to build St. Matthew House, an
accessible home with suites for 15 disabled people that
opened in Columbia in 1999. But while Turley moved in,
Schneider couldn't, because his pension and Social Security
disability payments, then totaling about $22,000 annually,
put him just beyond income limits for the federally
subsidized facility. ``It was a disappointment,'' Schneider
said. ``I felt rejected.''
Independence Day
While he pursued different housing options, Schneider hired
personal care attendants and turned to assistive technology.
``The technological revolution is getting better every
day,'' said Brewster Thackeray, a spokesman for the National
Organization on Disability. For example, he said, his boss, a
quadriplegic, can use voice-activated devices to dial a
telephone, open files on his computer and compose memos.
``The tragedy is, the technology exists, but people with
disabilities may not have access to it,'' said Thackeray. He
referred to his organization's 2000 national survey, which
showed that only 32 percent of people with disabilities aged
18 to 64 are employed full or part time, and that 29 percent
of people with disabilities live in poverty, with a household
income of $15,000 or less.
Schneider considers his ceiling-mounted lift the most
important device he has to independently perform mundane
daily tasks such as using the toilet. But in 1995 he lost his
argument to have Medicare pay for the approximately $6,000
lift and used his own money. Medicare regards the device as a
``convenience item'' that doesn't fit its definition of
medical equipment, according to an e-mailed explanation from
a spokesperson with the Centers for Medicare and Medicaid
Services.
Schneider faced more discouragement in 2000 and 2001, when
he tried to get government assistance to install an elevator
in his Columbia townhouse. Local government and social
service officials offered little hope, and one wrote
Schneider suggesting that he and his neighbors hold a bake
sale to raise the money. But independent living advocates
such as Jamey George insisted the state could help with low-
interest loans. Schneider decided to sell his townhouse and
buy a home that could be remodeled to accommodate several
friends with MS who lived in nursing facilities.
``I wanted to have a home for a group of people who are
disabled,'' Schneider said. He believed a new law in Maryland
would make it easier, since it required state agencies to get
more services to disabled adults in community settings,
rather than institutions. He still rankles at the reaction
of one state rehabilitation official, who told him he
wasn't competent to run such a home.
Schneider persevered, but it wasn't long before he was
struggling with misfiled loan applications, climbing
remodeling expenses and ballooning debt. That's when his
cyber community stepped into the fray. Schneider administers
an online forum and support group for MS patients called
MedSupport that draws participants from 12 countries and is
an example of how the Internet has forged new ties among
people with disabilities. One participant is Kimberly Hensel,
a woman with severe MS who lives in a small, isolated Arizona
town. Hensel's disease garbles her speech, but she can
communicate online by typing in a personalized shorthand with
one index finger: ``most folks ive come n contact w over the
internet hav the desire 2 keep adaptn 2 their changn needs 2
b as independent as we can,'' she e-mailed. ``often we need a
little help 2 enable us 2 do just that.'' MedSupport members
began sending hundreds of e-mails to the Maryland governor's
office asking for its intervention in Schneider's case.
The office of Rep. Benjamin L. Cardin (D-Md.) also got
involved, arguing that state officials could choose between
loaning Schneider money or spending tens of thousands of
dollars annually--in Maryland the average annual cost is
$50,000--to keep him in a nursing home.
The bureaucrats relented, and last year Schneider got two
loans totaling $65,000 to
cover the cost of the $48,000 elevator and some of the
remodeling. His ranch home now has wide, sloping concrete
walks from his front and back doors that draw him outside
even on wintry days. His basement quarters feature a bathroom
with a roll-in shower, a toilet with double grab bars and
electronic sensing devices, kitchen cabinets that accommodate
his wheelchair, and appliances installed so that he can reach
into them from his wheelchair.
But he ran out of money to remodel the bathroom on the main
floor and widen the hallways. The new elevator sits little
used. The home for his MS friends hasn't happened, and
Schneider rents out the first floor to an able-bodied tenant.
His correspondence with the state Department of Health and
Mental Hygiene has convinced him that the state would try to
make him comply with elaborate licensure and certification
rules for what it calls his ``residential facility.''
``If the health care bureaucracy isn't attuned to working
with people with disabilities, it doesn't matter what the
words of the law are,'' he said.
Recently, Schneider hired two exercise therapists, who came
to his house for several weeks of half-hour sessions. They
had him do reps with four-pound weights on his good right
arm, and worked with his left arm and legs as well, under the
theory that repeated movement might invigorate his damaged
nervous system.
Schneider also has his longtime personal attendants help
him do stretching exercises with his left arm to keep the
muscles from permanently contracting. During one visit, he
grimaced as attendant Oretha Solee slowly pulled his extended
arm out and behind his back.
``That's good, that's enough,'' he whispered.
Someday, Schneider says, there may be a medical
breakthrough in MS, and he wants to remain as limber as he
can be. In the meantime, he receives calls from health care
bureaucrats who want to update their records and ask if he
still has MS. Yes, he tells them, and he recounts the
conversations with sardonic resignation. He has learned to
live with it.