MEMORANDUM Date: January 3, 1994 To: Senator Dole From: Alec Vachon Re: Press Clips on Disability A raft of disability articles appeared in newspapers today: Washington Post editorial speculates on impact of ADA on health care. Wall Street Journal op-ed describes difficulties a mother with a disabled daughter has had in obtaining government-funded services, especially under Title XIX of the Social Security Act, and lessons for health care reform. Washington Post article describes need for self-defense classes for disabled. Comment: I called the reporter, Fern Shen, today and faxed her a copy of your crime floor statement -- and suggested she call me for future background on disability stories. Had earlier sent copy of crime floor statement to two Washington Post reporters. New York Times article describes changes in Sign Language -- here and abroad -- to remove derogatory signs. Wall Street Journal, 1/3/94 (Monday), p. 6. A Mother Talks to Mrs. Clinton By MARIANNE M. JENNINGS My husband and I have the privilege of raising a child with severe mental and physical impairments. If you were to ask me the most difficult aspect of rearing this unique little girl, the answer would not be the countless hospitalizations, the equipment demands, the sleepless nights or the too-long stares when we're in public. It would be the government bureaucracies we face to provide for her, protect her and help her tap her potential. As I listen to Hillary Rodham Clinton tout the wonders of a national health care plan, I want to say: "Come follow me, Mrs. Clinton. I can show you what government does to those it sets out to help." I would begin by introducing Mrs. Clinton to the five or so caseworkers assigned to our Claire. One is from Arizona's Department of Development Disability. Another is with Arizona Long Term Care. Another is with the Arizona Health Care Cost Containment System. Another is with APIPA, and I don't know what that stands for. I lost track of acronyms, agencies and caseworkers long ago. These caseworkers, assigned as advocates for my daughter's needs, come to our house, one by one, once each year to conduct two-hour interviews and verify in person that Claire, a child who is now six and has never spoken, has not been the recipient of a miracle cure. I don't know what the caseworkers do beyond this interview, but two things have occurred to me. First, burglars could just arrive at our door with a lot of forms and an acronym and anyone in the household would let them in. Second, there must be yet another contrived constitutional privacy right or some insider trading rule that prohibits state and federal employees who work with the same family from using one file, comparing notes, sharing information or even carpooling for interviews. My favorite interview was last fall, when a caseworker was assigned to re-do hundreds of interviews as part of a new total-quality management program. If I could introduce Mrs. Clinton to our five caseworkers, I would ask her to pose a hypothetical question to them about Claire's coverage. Mrs. Clinton would get five to eight different answers. The eight is because some of the caseworkers who buy into the new TQM program would go beyond the call of duty and give us two to three wrong possibilities. I would then take Mrs. Clinton into the world of Title XIX, a federal benefits program administered by the state for children under 19 who have permanent disabilities. Theoretically, Title XIX means summer school, swimming programs, respite care, therapy and a host of services that make it sound like a luxury spa. Reality is quite another story. Title XIX qualifies children on the basis of need (i.e., income) or degree of disability. Claire qualified on the basis of disability, but we are still required once each year to submit to an in-office interview (with yet another caseworker) in which I must give copies of our car titles, house deed, bank account statements, W2s, and the like. [image text: Regulatory Chokehold] A sample case­worker comment from one year's interview: "I see you have a new piano in your home. Claire doesn't play this, does she?" I had to wonder why someone looking at a child who can't sit, hold her head up or make any discernible voluntary movements felt compelled to ask such a question. One year we made the monumental mistake of adding Claire to our car title. Claire must be on the car title in Arizona for us to have a handicapped license plate. When we had only a moveable permit that was placed in the front window, people yelled at us in parking lots. With our official plates, we were saved from such grocery store skirmishes. But I had to face the glare of a Title XIXer who said, "Is Claire driving this car?" I was required to sign a witnessed statement that said our cortically blind kindergartner did not take the Chevrolet Suburban out for spins. During our income interview last year, a caseworker spotted our medical expenses. They are our biggest expense even with insurance, exceeding our house payments and food costs each month. The caseworker asked, "Why would you pay medical bills?" I never know about trick questions in bureaucratic territory, so I responded, "Because we owe them?" She then explained- the first government employee in four years to spot the issue- that Title XIX covered all of Claire's medical expenses not covered by other insurance. I asked, "How come no one ever told me this?" To which she responded, "Because they didn't know?" Once you're in Title XIX, it is Disney's Space Mountain- dark and twisted. In 1992 I began asking for summer school approval in April. I received approval on July 22- three days before summer school ended. Last year I began the summer school approval quest in February. I got it in April, but someone forgot to put Claire's name on the registration list. I found this out after a two-hour wait in the registration line. I paid for summer school myself and have since learned the term "refund" is not part of Title XIX. I began using our newly discovered Title XIX medical benefits in August. In just six weeks, I received authorization for a new wheelchair and a scoliosis jacket. In October I got a call from a caseworker who informed me that Claire's Title XIX benefits were being terminated as of that day. He had discovered on the forms that I fill out for the financial interview a $l,600 bank account for Claire. It was a burial account within the $1,500 limit allowed by statute, but it had earned interest. Claire had too much income. I offered to close the account. "Too late," he said. Then he added, "But you can always come down and reapply for Title XIX." It took me six months to get qualified the first time. I should have us reinstated just in time for summer school this year. I am a lawyer who teaches and writes about administrative process. Yet this system is beyond my expertise. How do parents with language barriers, little or no knowledge of due process and noncompulsive personalities cope? I can show Mrs. Clinton that programs like hers already exist. I can show her the paperwork, the idiosyncratic rules, the insensitivity, the ill-trained workers and a bureaucracy as deep as the Mississippi at St. Louis. I can show her a system that, much like her proposal, was intended to help. The reality is that help rarely makes it to our Claire. Ms. Jennings is a professor of legal and ethical studies in the College of Business at Arizona State University and a columnist for the Arizona Republic. Washington Post, 1/3/94 (Monday), p. A18. A Civil Right to Health Care A BUSH-ERA civil rights statute may play an unexpected part in the Clinton-era health care debate now about to begin. The Americans with Disabilities Act of 1990 added the disabled to the groups protected by the nation's basic civil rights laws. The act makes it illegal to discriminate on the basis of disability in employment, government services or the provision of any other services in places or institutions of public accommodation. Because so much of the health insurance in the country is provided through either employers or government programs, the effect, in certain circumstances, is to turn access to health care into a civil right. The act has already begun to show up in the health care debate. In 1992 the Bush administration denied the state of Oregon a waiver to set up a ranking of medical procedures by their presumed social value, and each year include in Medicaid only those for which it had funds. The list, in part for some "quality-of-life" judgments on which it was based, was said to discriminate on the basis of disability in violation of the ADA. The Clinton administration approved the plan last year only after insisting on some adjustments. Now the Justice Department has also filed a first lawsuit under the employment provisions of the ADA. The suit had nothing to do with employment per se; it said police officers and firefighters with disabilities were being illegally excluded from pension funds in Illinois. The ADA cuts two ways with regard to health care reform, in part because reform, as generally defined, has two quite different goals. The first is to broaden access to care by folding into the system the seventh of the population now without insurance. The ADA pushes in the same expansive direction. In the name of non-discrimination, for example, it puts great pressure on the familiar clauses in insurance plans that say the plans don't cover preexisting conditions. The question is, when and on what basis having to do with risk and cost can a preexisting disability be excluded? Not easy. Reform, as Mr. Clinton has proposed it, would tend to cut through all such questions by providing for universal coverage with community rating, meaning no more higher premiums for the sick and no more exclusions on the basis of preexisting conditions, either. So far, so good. The greater potential for conflict occurs with regard to the second broad goal of reform, which is cost containment. That's particularly true insofar as cost constraint translates, as some say it ultimately must, into constraints on care. In this sense, of wanting to minimize the risk to themselves if less is spent, the disability groups are no different from every other group involved in health care-- providers as well as patients-- except that they have a powerful law on their side. The outer bounds of the ADA are still being drawn and tested, but Oregon offered a glimpse of what it is likely to mean. The act doesn't say that health care of a certain kind or cost can never be denied to someone who meets its broad definition of disability. But it does say that such a limit has to be imposed carefully; there should be no stereotypical judgments about the quality of life, for example. That's a useful warning to continue to hear as this debate proceeds. Washington Post, 1/3/94 (Monday), p. C1, C2. As Disabled Enter Mainstream, A Need for Self-Defense Grows Slaying of P.G. Woman Increased Anxiety, Advocates Say By Fern Shen Washington Post Staff Writer Dianna Soltys, a 21-year-old college student who uses a wheelchair, does her best to broadcast a don't-mess-with-me message. She wears a sweatshirt emblazoned with the letters "FBI" and casually tells people that she has access to the gun her father keeps in their Severn house. But even Soltys, a criminal justice major, was rattled when a man attacked her in a hallway and jammed her wheelchair up against a wall. So there she was recently with about 20 other people in an Anne Arundel County library, attending a self-defense class for people with disabilities. "I couldn't move; it really scared me," Soltys recalled. She turned to the instructor and demanded to know: "Are you going to show me what to do in that situation?" The audience-- some blind, some in wheelchairs or using crutches, most of them women-- waited for the answer. Questions of self-protection are arising for people with disabilities as they become more integrated into society's mainstream and begin to confront society's unpleasant undercurrents. "People aren't putting up with being stuck at home anymore, but at the same time, the level of violence they're being exposed to is increasing all the time," said Deborah Kaplan, vice president of the World Institute on Disabilities, a think tank in Oakland that focuses on disability issues. Statistics are scarce because state and federal law enforcement agencies do not keep track of crimes against people with disabilities. But advocacy groups report that such crimes are occurring with increasing frequency. "There does seem to be, anecdotally at least, a rise in the number of [disabled] people attacked, robbed and raped. I hear a lot of stories, a lot of worry out there," said Curt Decker, executive director of the Washington-based National Association of Protection and Advocacy. Instructors at self-defense and martial arts schools in the Washington area say they are beginning to see more students with disabilities. Some are seeking self-defense strategies; others are looking for more physical agility and self-confidence. [photograph] A man stands behind a woman in a wheelchair. His arms reach over her shoulders and she is grasping his wrists with each hand. [caption] Self-defense teacher David Rix shows Dianna Soltys how to use a wheelchair to her advantage in a confrontation. [photographed] BY MARY LOU FOY - THE WASHINGTON POST "I do see an [enrollment] upsurge, especially in children with disabilities. Their parents are becoming more assertive about it," said Mike Stahly, who is director of education for TKA, which provides martial arts classes for the recreational programs of Montgomery County and other Maryland jurisdictions. Local advocates for the disabled said that anxiety was heightened by the stabbing death in December of a Prince George's County woman who used a wheelchair. Denise Shea, who had spina bifida and lived with her parents, was found stabbed in a bedroom in their Riverdale Hills home. Police found no signs of forced entry but said there was evidence that the house had been burglarized. "Disabled people are always more vulnerable," said Mary Jane Owens, executive director of the Washington-based National Catholic Office for Persons With Disabilities, who is blind and uses a wheelchair. "Older people have reacted by saying they won't carry a cane, because that's like having a sign that says, 'Rob me,' but you can't let your life be ruled by fear that way. I try not to act as if I'm vulnerable. That's what these [self-defense] classes help you do." Some of the women attending the Anne Arundel County class said they wanted to learn techniques to help them conquer their fear. "I'm like lots of the disabled who are starting to live alone and go out on their own more," said Norma DeMent, 42, of Millersville. "We need something like this." DeMent, who has cerebral palsy and uses a wheelchair, said she wants to feel less vulnerable in her job as a receptionist at a county park, where she is often alone. She said she was once ripped off by a cabdriver who put her and her chair into the cab, then ran back into the building where she works on the pretext of using the bathroom and stole $300 in cash. "It was an expensive lesson," DeMent said. Even those who had never been threatened or robbed said they often felt fearful. "Every day, all the time, I just turn my head to see if someone's following me-- I hate that," said, Vivian Greer, 28, of Davidsonville, who uses a wheelchair. Instructor David Rix, a self-defense and martial arts teacher from Baltimore County, demonstrated several practical maneuvers, among them how to strike an assailant between the legs with a cane ("Think dirty!") and how to trick an attacker into lowering his face to wheel· chair level so that his jaw can be smashed ("Fake him out!"). And he threw in some philosophy too. "They look at you and expect you to be an easy target, so your main advantage is the element of surprise," Rix told the gathering, sponsored by the county's Americans With Disabilities Act Office. "Helplessness is only a state of mind." As for Soltys's question about how to repel an attack from behind, Rix called for the wheelchair users to join in a demonstration. He showed them how to swivel the chair around to run over the attacker's foot, or swing the handles of the chair into an attacker's groin. The wheelchair's armrests and footrests can also be used as clubs, he said. The white-haired, stocky Rix, 60, who likens himself to "a tough old Irish leprechaun," has been teaching self-defense to people with disabilities for three decades. Rix says his interest in the subject stems from a time when he used a wheelchair for about six months after major surgery. "After I got out of the hospital, I was so weak I couldn't even lift a coffeepot," he told the class. "My hand was like this," he said, balling it up into a crabbed claw. After neighborhood bullies picked on him, Rix built up his strength and learned ways to use his upper body and low center of gravity to fight back. Wheelchair users in the more advanced classes he teaches, especially those with upper body strength, are even able to repel attackers with martial-arts-type flips, he said. [photograph] A man holds up a large piece of cardboard while a woman stands facing it with her arm pulled up and back. [caption] Marla Sewell uses a clothespin to attach a cardboard dummy held by her martial arts instructor, David Rix. [photographed] BY MARY LOU FOY - THE WASHINGTON POST But Rix cautioned the women in his class not to resort to violent tactics unless they are absolutely necessary. "Maryland law says: flight before fight," he said. "If you can get away, do it." Rix warned the class away from guns, which could be taken by their attackers and turned against them, and from stun guns, which he said are illegal. Instead, he suggested they use a hand, turning any rings inward so they will rake the assailant's face when it is swatted with an open palm. A void striking the mouth, he said: It's too full of sharp teeth. Members of the audience experimented with different methods of striking a face, gently slapping Rix or his assistants. "Hmmm, bearded," a blind woman remarked, as she encountered Rix's white whiskers. A heavy ring of keys is another good weapon, Rix said, as is pepper spray or an old-fashioned wooden clothespin clutched in a fist. He passed out clothespins and let class members come to the front of the room and use them to jab a cardboard assailant. "Wow, I would have never thought of clothespins!" said 38-year-old Marsha, breaking into a broad grin as she fingered the deep gouge she had made in the cardboard. "From now on, I'm going to carry one," said Marsha, who is blind, lives in Millersville and did not want to reveal her last name. Not all of Rix's ideas seemed so practical to his audience. One blind woman with a cane seemed skeptical about his suggestion that they use their canes to strike attackers. "What if it broke?" she said. "How would I get away?" In the disability community, there is some debate over whether Rix's aggressive tactics could really work. "I would rather use psychology on people," Owens said. She said she has been able to defuse situations in which she was about to be harassed or attacked by approaching her attackers before they approached her. "I'll say, 'Oh, thank you for wanting to help me, but I'm really fine. That was so nice of you to want to help, but, really, I can manage!' and they just wander away a little embarrassed," she said. The people attending Rix's class agreed that their fistful of keys or wooden clothespins would probably do little against a burly attacker with a knife or a gun. But they said they'd be happy for any kind of edge. "If it's going to be a do-or-die situation, I'm going to be as ready as I can," said Vivian Paff, 40, of Severna Park. Paff, who is blind, has other disabilities as a result of a car accident. "I figured, I've got elbows, I've got fingers-darn it, I'm going to use them." New York Times, 1/3/94 (Monday) P. Al A12 Language of the Deaf Evolves To Reflect New Sensibilities By JENNIFER SENIOR Special to The New York Times WASHINGTON, Jan. 2-- Perhaps as recently as two or three years ago, a deaf person would sign the word "Japanese" simply by twisting the little finger next to the eye. But today, many of the more than 200,000 people who use American Sign Language avoid using this sign because it is a graphic reference to a stereotypical physical feature, slanted eyes. Instead, many deaf people here are adopting the Japanese's sign for themselves: pressing the thumb and index fingers of both hands together and then pulling them apart, carving the silhouette of Japan into the air. Speaking of the old sign, Dorothy Casterline, a 65-year-old deaf woman of Japanese descent who lives in Laurel, Md., said, "When I was growing up, I didn't give that sign a thought. But now that we are becoming aware of cultural differences, people have feelings about it." Visually Provocative The signs that are changing, like the spoken words that are dropping out of polite usage, are often those for various ethnic groups. But the problem can be more complicated for American Sign Language, in which many signs have grown out of easily recognizable gestures or features, which means they can starkly reflect society's stereotypes. "In American Sign Language, politically incorrect terms are often a visual representation of the ugly metaphors we have about people," said Prof. Elissa Newport, a psychologist at the University of Rochester who specializes in how people learn signed languages. [illustration shows the new way to sign 'Japan' or 'Japanese person' with hands making the shape of the country, along with the old way, which put a closed fist with outstretched pinky finger to the eye.] Source: Frederic Jondreau, American Sign Language Institute. Megan Jaegerman/ The New York Times The signs for "Chinese" and "Korean," which are made by forming the letters "C" and "K" around the eye, are changing. There is a new sign for "African-American" to replace flattening the nose to indicate "Negro." The old sign for "homosexual" was a swish of the wrist. One sign replacing it is to sign "q" for "queer," a term formerly rejected by homosexuals but now in vogue among some of them. And one sign for "stingy," derived from the sign for "Jewish" (stroking an imaginary beard), has recently stimulated discussions among deaf Jews around the country, though no new sign has actually shown up in its stead. The sign adds a clenched or tight fist to the imaginary beard. "Political correctness has definitely crept into the deaf world," said Prof. Yerker Andersson, a sociologist here at Gallaudet University, the world's only liberal arts college for the deaf. "Though I don't always care to use that label, because some people use it negatively. When I say 'political correctness,' I mean 'increased sensitivity.'" Desire for Deference For many deaf people, the new signs are not only indications of sensitivity to those who feel slighted by stereotypes, but the signs also reflect deaf people's desire for recognition as a distinct group that deserves the same sort of deference being extended to ethnic, religious and racial minorities. But replacing what have become regarded as insults with acceptable signs that also work visually is not simple. After the old sign for "Negro" came to be seen as pejorative, it was replaced by either of the signs for the color "black." In one, the index finger is placed by the eyebrow; in the other, it is wiped across the forehead. Today, some deaf people, like hearing people, prefer the sign for "African-American." But the sign for "African" is changing, too, in part because it is still centered around the nose. The new sign is simply to outline the continent of Africa in the air with one's hand. How Do You Say Homosexual? As the old sign for homosexual was dropped because of its suggestion that homosexuals were effeminate, an alternative sign was to run a middle finger through the hair, though most homosexuals also regarded that sign as an epithet because of its overtly feminine character. The appropriate way to sign "homosexual" these days is to finger-spell it, or to place the sign for the letter "q" on the chin. Sign language changes gradually, just as English does. The fine-tuned, sensitized signs have caught on mostly in urban settings and among the highly educated, much in the same way that words like "African-American" caught on first at college campuses. The changes have not yet been registered in the most widely available dictionaries of sign language. Most sociologists believe that this attention to diversity has taken longer to catch on in the deaf community. "Deaf people have less access to the media," Professor Anderson said. "Hearing people, obviously, hear everything, everything, so they become more aware of small cultural changes. It takes deaf people a bit more time to realize them." Some educators and sociologists also believe that these efforts to modify American Sign Language are of marginal value. "Political correctness in the deaf community is certainly meaningful to a degree, because it addresses the stereotypes of certain groups," said Frederic Jondreau, the director of the American Sign Language Institute in Manhattan. "But I think its overall impact is questionable. The deaf don't really have the luxury of fully dealing with issues like race and gender yet. They're still addressing issues in deafness, like the acceptance of sign language." Linguistic Sovereignty Some of the recent revisions in American Sign Language reflect this respect for linguistic sovereignty. Over the last ?0 years, the deaf community has adopted dozens of signs that deaf people in other nations use for themselves, even though some of their earlier versions were not considered offensive. Professor Anderson, who is also the President of the World Federation for the Deaf, says that deaf Americans are also adopting these signs because they have had more contact with their peers abroad in the last few years. But he and other educators agree that this borrowing frenzy would never have happened if the culture at large had not become so attuned to issues of ethnic diversity. "If there was no American sensitivity to political correctness, no one in the deaf community would be paying much attention to this," Mr. Jondreau said. At times, the use of these foreign signs can get a bit complicated. For example, putting one hand face down in front of the body and plucking something off it with the other, as if pulling a tissue out of a box, is the new American sign for Swedish. This sign, derived from mountains, is the one that deaf Swedes use for themselves. But in some dialects of American Sign Language it means "bald," and many Swedes would not consider that a compliment. "When I first saw the sign, I thought, 'What do I do here about political correctness?'" said Ted Supalla, a professor of linguistics at the University of Rochester who specializes in signed languages. "But then I thought, 'Well it's their sign, I really should use it.'" But this trend can also erase damaging stereotypes about the United States. The deaf in this country have recently begun to encourage their counterparts abroad to change their stereotyped signs for "American" to the sign that deaf Americans use for themselves. That sign is to lightly weave the fingers of both hands together in front of the body and bring them around in a circle, as if stirring a pot. In Russia, this change certainly casts the United States in a more flattering light. There, the previous sign for "American" was to suggest a big belly with one hand and simultaneously mouth the word "capitalism."