[Congressional Record Volume 149, Number 25 (Tuesday, February 11, 2003)]
[Extensions of Remarks]
[Pages E183-E185]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         THE ED ROBERTS CAMPUS

                                 ______
                                 

                            HON. BARBARA LEE

                             of california

                    in the house of representatives

                       Tuesday, February 11, 2003

  Ms. LEE. 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

[[Page E184]]

     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

[[Page E185]]

     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.

                          ____________________