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Beginning of Hope The Health and Human Services Committee of the N.J. Assembly held a public hearing on health issues affecting women with disabilities on May 10, 2002. The hearing was held at Marion Hall, Holy Name Hospital in Teaneck on May 10. Loretta Weinberg chaired the hearing, which was also attended by committee members Matt Ahearn, Willis Edwards, III, Nellie Pou, Joan M. Quigley, Rose Marie Heck and Charlotte Vandervalk. Assemblywoman Weinberg held up a copy of the "Women with Disabilities Summit Report" as she opened the hearing. She cited it as a major reason for holding the hearing. The report outlines four major issues: inadequate preparation of medical professionals to treat women with disabilities; inaccessibility of medical facilities and equipment; failure of medical professionals to treat women with disabilities as fully human; and the lack of adequate research on the impact of aging on women with different disabilities. Testimony from members of the Women with Disabilities Health Care Steering Committee dominated the hearing. Holly Wetscher, its Chairwoman, talked about growing older with a disability. "It seems as though the aging process has come to me before its time. Presently, I am experiencing various health problems that I did not have before. "It is noteworthy that these medical problems are often misconstrued and puzzling to my physicians. Each issue is treated separately and they do not seem to understand why they are occurring. These are secondary health problems that could and should have been prevented. A great deal of clinical research is needed to learn how these secondary health conditions can be treated and eventually prevented. We need legislation to support our efforts." Kate Blisard spoke about her rape at knifepoint as a young woman. "Rape and domestic violence happen twice as often to women with disabilities. The lack of accessible medical and counseling services must be addressed." Blisard also spoke about her two pregnancies. She was delighted by both but the medical community was not. "I was a married woman with a disability, pregnant, and unable to find a knowledgeable physician to care for me and my unborn child. I was told to abort. I did not, and I have two grown children. Twenty years later, women with disabilities are still searching for that caring and knowledgeable physician." Anita Clavering addressed the unreliability of paratransit to get to medical appointments. She noted that she had missed many therapy sessions because the vehicles were so late. Marilyn Gelman spoke about the problems many people with Traumatic Brain Injury face. Some physicians are so focused on the brain injury that they fail to recognize other ailments. They ignore their patients’ complaints as aberrations due to their injury. Sandra Pinkerton talked about the conflicting regulations she has encountered trying to get adequate personal assistance. She needs a personal care assistant in both the morning and the afternoon. The service available in the morning requires that she be unable to leave her home except for medical or religious services. The service available in the afternoon requires that she do volunteer services in the community or work at paid employment. Pinkerton desperately needs both services. Janet Chiorello-Ellis spoke about the appalling lack of accessible gynecological services. "I heard the worst case scenario: a woman’s symptoms of cancer were mistaken for a secondary symptom of her disability and, because of that, the cancer was not detected and she died. This was an issue of someone with a spinal cord injury whose uterine cancer was not picked up." She echoed the call of many members of the Steering Committee for the creation of a Center for Women with Disabilities at the University of Medicine and Dentistry of New Jersey (UMDNJ) that would combine research, teaching and clinical practice. Several legislators indicated support for such a center. Following the hearing several legislators took the opportunity to thank the women who came forward to offer testimony. Assemblywoman Weinberg noted that they had given the committee a full agenda to address and promised her support in addressing it.
Assemblywoman Loretta Weinberg
By Paulette M. Eberle Loretta Weinberg has worked tirelessly to improve the quality of life of her Bergen County constituents since she began her tenure in the state legislature. She has sponsored or co-sponsored bills that demonstrate her concern for the people of New Jersey, particularly, women, children and people with disabilities. Some of the issues she deals with are child support for children with disabilities who may need this support long after the age of 21; review of Medicaid payments to physicians to ensure that they are paid enough to continue to participate in the program; and civil penalties for disclosing the locations of shelters for victims of domestic violence. Weinberg is no stranger to the problems that having a disability can bring. "My mother was legally blind. I used to take her to lunch or dinner and the waiter would always ask me, "What does she want?" I always made them ask her, but it was frustrating and infuriating to have her treated as if she couldn’t think." Weinberg held a hearing on Women and Disability in Marion Hall at Holy Name Hospital in Teaneck on May 10, 2002. It came about as the result of a casual conversation she had at the hospital several months earlier. "I was talking to some friends and patients at the MS Center at Holy Name when some of the women who were patients at the Center began to talk about the difficulties they had getting basic health care because of their disability. I was stunned that things I took for granted were beyond their reach and that’s why the hearing was called. I knew if I were hearing these things from a few women, the problem had to be much bigger." Holy Name Hospital has a special meaning to Weinberg. It’s the hospital that she brought her own children to when they needed medical attention for their childhood illnesses and accidents. "I spent more time at Holy Name when my children were young than I did at home. I used to say that they must know my Blue Cross number by heart! Holy Name is a hospital that epitomizes to me what a community hospital should be. They are always aware of what the needs of the community are and are always striving to improve the facility to meet those needs. I’m so glad we were able to have the hearing there." "I can tell you, as a direct result of this hearing, the assembly will be working on legislation in September that will correct one of the problems," Weinberg confided. Janice Sangle from the Greater North Jersey Chapter of the Multiple Sclerosis spoke about the problem of women with MS being unable to obtain medical care because of inaccessible facilities. If accessible services could be found, they were often outside of the HMO’s network and their insurance refused to pay for these services. During Ms. Sangle’s testimony, Assemblywoman Weinberg leaned over to speak with a member of her staff. Assemblywoman Joan Quigley quipped, "If it looked for a minute like she wasn’t paying attention, she was fixing the problem." And she was. As a direct result of this hearing and the testimony given, legislation is being worked on that will allow people with disabilities to go outside of their HMO networks if accessible services are unavailable to them within that network. It will also require that the HMO pay for those services. The hearing lasted longer than expected and several Committee members were late for other appointments. Nobody seemed to care. They had sat through three hours of testimony, listening with rapt attention. "I’ve sat through a lot of hearings," Weinberg said, "and I can tell you, this one was different. Usually it’s difficult to keep the members attention. There’s always something that calls them away. The women that testified that day certainly kept their attention. Nobody left for a minute. Nothing has more impact than to hear what’s happening from the people it’s happening to."
A Legislator's Perspective: By Marianne Valls In this age when politics is seen as a less than honorable profession, it is refreshing to meet Assemblywoman Joan Quigley of the 32ND District in Hudson County. She brings competence, concern and caring to her job as a legislator. Her profession as a hospital administrator merges perfectly with her seat on the Assembly Health and Human Services Committee. Assemblywoman Quigley has made a career of social service and health care. She worked for a while as a public information officer for Hudson County Welfare Department. She also worked for Polack and Meadowview Hospitals, both county-owned facilities. During that time, Ms. Quigley was a member of the Board of Directors of St. Francis Hospital. In 1979, she became the administrator of St. Francis Hospital in Jersey City. In the 1980s St. Francis Hospital merged with St Mary’s Hospital in Hoboken. In the late 1990s, the two hospitals acquired an area nursing home. Last year, Christ Hospital was brought into the fold. The three hospitals and nursing home are under the auspices of the Bon Secours New Jersey Health System. Ms. Quigley’s background made her uniquely qualified to participate in the May 10th Public Hearing on health issues of women with disabilities at Holy Name Hospital in Teaneck. The legislator recalls that her friend and colleague, Loretta Weinberg, Chairwoman of the Health and Human Services Committee, suggested that their committee hold a hearing exploring the topic. This occurred when a number of her Bergen County constituents approached her and spoke of their "difficulty of dealing with chronic illness and disability." Ms Quigley quickly agreed that the subject should be investigated, and true to her nature she wanted to know what the legislature "could do to help." The problems of access to both medical buildings and equipment came up time and again in their testimony. Gynecological equipment appears to be the biggest offender. Woman with limited mobility sometimes go their whole lives without a mammogram simply because they cannot stand. Janet Chorello-Ellis, a steering committee charter member who facilitated the Summit workshop on Sexual and Reproductive Health, testified that she had difficulty "finding a gynecologist who has experience providing basic preventive care to a woman with cerebral palsy." She reported the lack of physician’s knowledge could sometimes become a "matter of life and death." Ms. Chorello-Ellis related the story of a woman whose cancer was mistaken as a secondary symptom of her disability. As a result of the undetected cancer, the woman died. This testimony caused Assemblywoman Quigley to check on the accessibility of her own health complex in Hudson County She proudly reports that the hospitals and equipment are accessible and have services for the deaf. She freely admits that her hospitals can improve their signage for the blind. Ms. Quigley not only thinks that more legislation in the area of accessibility is needed, but there must be stricter enforcement of existing laws. That legislation, will, in the words of the Assemblywoman, "be somewhat controversial. Most physicians aren’t going to like being told that their offices need to be accessible." Holly Wetscher, chairwoman of the steering committee, touched a chord with Assemblywoman Quigley when she spoke of aging with a disability. Wetscher told the legislators: "When I was born, medical treatment for cerebral palsy was in its infancy and considered a pediatric problem. I guess they thought we would miraculously get better and live happily ever after." As a woman in her 50s, she is now experiencing health problems. Doctors do not know what impact her disability has on her present medical condition. Physicians know little about the effect of aging on disability or vice versa. The medical profession has apparently never given any thought to a graying disabled population. Little is known about secondary conditions, and what little knowledge there is, is anecdotal. Secondary conditions must be explored so that they can be prevented and/or cured. Assemblywoman Quigley agrees with Ms. Wetscher, "Nobody expected her to live to be an older person; I think that’s sad but true. And nobody looked beyond the first 20 or 30 years of life to say what would happen to people with disabilities. We need to think about that. The whole health care system needs to think about that." Another piece of testimony, which got Assemblywoman Quigley’s attention, was Dr. Sandra Pinkerton’s. Dr. Pinkerton, a member of the steering committee, has a doctorate in education, and was born with spina bifida. Due to her disability, she needs the services of a home health aide seven days a week. Her services are provided by two different agencies each with their own set of regulations. Dr. Pinkerton told the forum that she must be housebound in order to qualify for the Medicare services she receives in the morning; She said that she couldn’t leave her house "unless it’s for medical or religious reasons." In the afternoon, she receives services from The Bergen County Personal Assistance Program. To be eligible for this program, she must either be employed or volunteer. Assemblywoman Quigley said that the contradictory regulations were ridiculous "We’ve got to look at these bizarre requirements that some of the agencies put on people." One reason Ms Quigley attended the hearing was to become more sensitive to the needs of people with disabilities. She related a recent experience that demonstrates what a quick learner she is. Her polling place is down a flight of stairs without a banister. As she was going to vote last June, she thought about the fact that a person with a disability could never manage the stairs. Quigley will give health issues a "top priority." In the meantime, she urges the disability community to "get noisy!" Eight members of the Women with Disabilities Health Care Steering Committee testified at the Public Hearing. The committee is sponsored by the Developmental Disabilities Council. Many of the women spoke from their own experience. They also discussed the report issued by the Women with Disabilities Health Care Summit, which highlighted some important barriers to their receiving adequate health care.
Eager to understand and respond By Paulette M. Eberle Holy Name Hospital in Teaneck has a long history of reaching out to offer the best medical care possible to all members of the community. The Stella C. Van Houten Women’s Outpatient Center at Holy Name Hospital extends that service to women with disabilities. Maryanne Kenney, Nurse Manager at the center explains, "We do outreach to the community at various centers. Our outreach is not geared specifically to women with disabilities, but all women in general. We can accommodate any woman who comes here regardless of her disability." Finding an accessible mammogram has been a dilemma for many women with disabilities. Many women have discovered that once they’ve found an accessible mammogram machine, they cannot have the test because the arms of their wheelchairs cannot be lowered to allow access. The Center is well prepared to offer this service to these women. "The machine itself is accessible and we bought a wheelchair with sides that come off if a woman needs to use it. We also have a trained lift team available if the woman has difficulty transferring," says Eileen Davis. Eileen Davis spoke about some alternative methods of breast self-examination. She’s taught the aides of MS patients how to do this examination and has also encouraged the partners of women to assist with the exam. The center also has a breast form with several lumps in it that allow a woman to learn what a lump in her own breast might feel like. Maryanne Kenney explains that some of the patients that use the Women’s Center have cognitive disabilities "They come with their aides if they live in a community house or with their parents. The parents and aides are encouraged to be part of the intake process, but the patient is the one we’re concerned with. We would never invite a third person into the exam room without asking the patient’s permission. Every patient has the right to privacy and we respect that." Cathy Sheedy of the center said, "Any woman with a cognitive disability can expect to be treated with the same respect we give all our patients. She can expect to be examined and spoken to without anybody in the room unless she, herself, says that she wants her parent or caregiver in the room." Although the center does not do maternity care, they would certainly refer any patient who was pregnant to another area of the hospital. The medical community has too often discouraged women with disabilities who choose to bear children. Too many doctors assume that pregnancy and childbirth would be too dangerous for them or that the woman would be unable to care for a child after the baby’s birth. Much of this attitude stems from a lack of knowledge about the effects of certain disabilities on a pregnant woman or her child. Eileen Davis says, "Holy Name Hospital is a Catholic hospital and abortion is not an option here, however we would do everything in our power to see to it that the pregnancy had a good outcome." Cathy Sheedy is passionate about ensuring that all women with disabilities have the medical care they need, but it’s been frustrating. The Women’s Center wants to accommodate any woman regardless of her disability, but she’s had a great deal of difficulty in one area, materials for the blind and visually impaired. "I’ve been trying to get materials since I met you at the hearing. It’s very difficult. I’ve been calling everybody I can think of, asking if they can point me in the right direction. We have to do this. We have to make that material available to all women. So far, I’ve gotten nowhere." When I gave her the name of an agency that does transcription, she was surprised. "Why isn’t this advertised? If the services are available, we should know about them. It isn’t that we don’t want to do it, we just don’t know where to go." The center, which already had a hydraulic table, had just purchased a state-of-the-art accessible examination table this summer. Many area doctors are aware of the fact that an accessible examination table is available at the Center. Eileen Davis, Nurse Practitioner at the center says, "The MS Center, another service of Holy Name Hospital, is a big draw for us. Many of the doctors who would go to the MS center to do gynecological exams would refer patients here." For some women with disabilities an accessible examination table may not be the complete answer. A woman with a spinal cord injury, for example, may experience intense pain because her legs cannot be put in the appropriate position or it may be impossible to manipulate her legs into the appropriate position. Eileen said, "In that case, an exam under anesthesia would be necessary. The women’s center doesn’t have certain drugs available so we couldn’t do it here, but certainly an exam under anesthesia could be done in another area of the hospital." One of the problems with this, she feels, would be the insurance companies willingness to pay for such a procedure. Cathy Sheedy found it interesting that you don’t find anesthesia in the offices of gynecologists. "Dermatologists and G.I. practices often have anesthetics or even an anesthetist available. Any practice where small procedures are done may have this available." Cathy offered a suggestion to the various disability organizations. "I’d like to see something in print that offered resources we could use. Right now, even when you’re trying to find these resources, doors slam in your face. We need something to work with. We need information." The recent Health and Human Services Committee hearing on Women and Disability, held at Marion Hall, had a profound effect on the entire staff of the Women’s Center and they’re eager to understand our needs and to respond to them. However, they can’t do it alone. Women with disabilities must do their part if there is to be any change at all. Cathy Sheedy summed it up when she said "You need to stay as vocal as you are, because people don’t know enough, they just don’t know enough. Some doors opened up for me after the hearing was held here. I heard about problems that I hadn’t known existed. I see women with disabilities all the time, but I don’t know what’s really going on with them."
Doctors with Attitudes By Marianne Valls People with disabilities still make some other people nervous. Most of us with disabilities accept this unpleasant fact of life but the occasional insensitive remark, especially by a professional, still stuns and saddens us. Unfortunately, fear, misconception and ignorance of disability still abound in the medical community. This is particularly disturbing. Nicole Davis is a young Afro-American woman with spina bifida. Nicole works at PCIL, a Center for Independent Living in Mercer County. As an outreach worker, she travels throughout the Trenton area. Nicole was extra early for her last medical appointment due to circumstances beyond her control—Access Link. According to Nicole, her doctor appeared disturbed by her early arrival. Nicole offered to wait at a friend’s house until her appointment. However, the physician said that wasn’t necessary. The physician still appeared to have an attitude when she called Nicole into her office. It seemed strange that her doctor didn’t even examine her especially since the physician was the one who scheduled the appointment. Her last appointment had been in July. When asked by her physician how she was doing, Nicole mentioned that she was having mood swings especially around the time of her menses. Nicole also informed the doctor that her boss had been killed on flight #93 on September 11th. That fact, Nicole feels, exacerbated the situation. According to Nicole, the doctor dismissed it by commenting, "People with physical and mental disabilities are not that independent." In the past, Nicole has walked with crutches as a result of spina bifida. Now she uses a scooter. Anyone who has seen the physical effort that it takes Nicole to walk can readily appreciate her decision to use a scooter. Anyone that is, but her doctor. The gynecologist bluntly told Nicole that she intended to make one more appointment for the young woman. Unless she started walking, Nicole would have to find another physician in the future. She told Nicole that perhaps if she lost weight and exercised she would be able to walk. The doctor felt it was " too stressful" for her to deal with Nicole while she was using a scooter. Nicole was outraged by the phys-ician’s shocking behavior. She got in touch with her insurance company to see if she had grounds for a complaint. The company thought she did, but after much thought, Nicole decided not to pursue the matter. Instead, Nicole used her energies towards finding a new health care provider. She reports that she found a superb health clinic. According to Nicole, the staff at Capital Health at Mercer "are really wonderful and they even have a table that goes up and down." Nicole replies "no" when asked whether she feels her African-American background plays a role in determining the quality of her health care. She is much more focused on finding medical professionals who have an understanding of disability. Too many in the medical community view people with physical and/or mental limitations in need of a cure, and ignore those of us they cannot make well. We are their medical failures. If such attitudes are to change, it is up to us to change them. For the majority of people with disabilities, a cure is not an option. However, to participate fully in society, we need to stay healthy. On the Legislative Front By Anita Clavering Following the May 10, 2002 legislative hearing, Assemblywoman Loretta Weinberg and Assemblyman Albio Sires introduced Assembly Concurrent Resolution # 116 to memorialize the American National Standards Institute to develop standards for medical equipment to treat patients with disabilities. This resolution passed the Assembly 76-0-0 on October 7, 2002 and has been referred for consideration to the Senate’s Health, Human Services & Senior Citizens Committee. On September 19, 2002, Assembly members Loretta Weinberg and Matt Ahearn sponsored A 2759, a bill which would permit a patient with a physical disability who is covered by a managed care plan, to receive benefits at the in-network level for health care services provided at an out-of-network health care provider under certain circumstances. On October 21, 2002, the Assembly Health and Human Services Committee reported favorably with committee amendments and it has been referred to the Assembly Appropriations Committee. Contact your Assemblyperson and urge support for A2759 and contact your State Senator and urge support for identical bill S1919, sponsored primarily by Sen. Diane Allen. Health Access will continue to report on these important legislative developments in future issues. Women with Disabilities Race for the Cure By Patricia Krupka In the early morning hours of Sunday, October 20, 2002, on the grounds of Bristol-Myers Squibb Co. in Princeton, hundreds of persons entered the Expo Tent at the Komen NJ Race for the Cure. Just inside the vast tent, they were greeted by members of the Council’s Women’s Healthcare Steering Committee wearing hats with "Women with Disabilities also Race for the Cure." Committee members participated in the one-mile Health Walk as well as worked their display table in the Expo Tent. The annual event is hosted by the Breast Cancer Resource Center of the YWCA Princeton. The services provided by the Center include referral to information about medical services and a community resource for improved public awareness of breast cancer and breast health (phone 609.252.2003; web site www.bcrcnj.org). This year the steering committee decided to reach out to this large audience with a message to increase breast health access for women with disabilities. Copies of the Health Access newsletter and a photo-feature, "The Beginning of Hope" covering the New Jersey General Assembly hearing on health issues of women with disabilities, were distributed during the day. The committee also made a formal, written request to the sponsors of the Race for the Cure, to work with them to insure there is an accessible mobile mammography unit at next year’s event.
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WOMEN'S HEALTH CARE