One Step Ahead

One Step Ahead Readers' Exchange

Your Experience...
One Step Ahead (OSA) will try to answer every letter you send. We may respond in this column, in a longer article or with a personal letter. Our goal at OSA is to provide information that will help you live your life to the fullest. Don't forget, your personal experiences 末 living each day with a disability 末 can be quite valuable to others in similar situations.

Please write to us so that we can share your knowledge, experience and concerns with other readers.

Editor's Note: Because of space limitations, OSA reserves the right to edit any reader submission.

Financial Resources for Medical Bills

Dear Editor,

I have a 13-year-old daughter who is a quadriplegic and ventilator-dependent. She has been home for two years, and we are struggling financially.

Can you tell me about any resources to assist us with medical expenses? Thank you.

Dear Terry,

The National Information Center for Children and Youths with Disabilities (NICHCY) prepared a briefing paper, Paying the Medical Bills, to enable families to make a full search of the possible ways to meet medical expenses.

Specific plans for resolving difficulties depend on your family's personal financial situation, public or private family health insurance policies, the presence or absence of an individual health insurance policy, your daughter's medical needs, the state where you live and your understanding of your rights, responsibilities and options. The briefing paper includes lists of books, pamphlets, periodicals and associations that can provide more advice and materials on obtaining assistance with medical expenses.

Contact NICHCY to obtain a copy of Paying the Medical Bills, a list of its other free publications, personal responses to your specific questions, information searches and/or referrals to other organizations.

Resource for Terry B.

National Information Center for Children and Youths with Disabilities
P.O. Box 1492
Washington, D.C. 20013-1492
(800) 695-0285 (voice)
nichcy@aed.org (e-mail).

Disabled Military Retirees Short Changed

Dear Editor,

For every dollar military retirees receive from the Veterans Administra-tion (VA) for a service-connected disability (a disability contracted while on active duty in the military), an equal amount is deducted from their retirement pay.

Military retirees are the only people required to pay for their VA award from their longevity retirement. In essence, the military retiree is paying for his/her own disability award from the VA.

I have a 70 percent disability rating, which I'm paying for myself.

OSA Reviews Hotels

Dear Editor,

My wife and I are retired on Social Security. I have muscular dystrophy and use a wheelchair. We would love to stay at the hotels listed but with the inflated prices aimed at the business traveler and corporations, even with discounts we can't afford it.

We have stayed at Howard Johnsons and Holiday Inns with handicapped rooms. We found the rooms not large enough to turn around in, faucets on sinks and in tubs that require both hands to turn, high thresholds at the entrance to the rooms and non-smoking rooms that weren't.

Dear Editor,

I have traveled "professionally" since 1978, but I have only been disabled for the last three or four years.

I have found Marriott hotels have been in compliance with accessible rooms "forever." Several years ago, I arrived at the Columbus Marriott in Columbus, Ohio. It had lots of handicapped parking spaces but they were all near the front of the hotel 末 by the restaurant and meeting rooms. I suggested on my comment card that some spots be set aside adjacent to the room entrances. When I returned to the hotel on a subsequent visit there were spots by the side door.

At other Marriotts, they do not charge for valet parking and valet personnel often refuse tips for parking or delivering my car. The manager of the Princeton, New Jersey, hotel always made sure my car was "de-snowed" when I was caught there in bad weather. At the Marriott World Resort, Orlando, Florida, they wouldn't even let me put my electric wheelchair together 末 they always did it and refused tips.

Because of these little extras, I make every effort to stay at Marriotts.

Dear Editor,

My husband is a quadriplegic who has multiple sclerosis. One question you should have asked the hotels was, "Do you have handicapped rooms that contain at least one double bed on legs with a clearance of at least eight inches from the floor to accommodate the wheels of a Hoyer or other lift?" Most hotels and motels have beds that are on platforms thus making a transfer from the Hoyer lift to the bed impossible since the base of the lift must go under the bed to position the person over the bed.

Hip Crip Catalog

Dear Editor,

In November, 1994, you mentioned the Hip Crip Catalog. I would like to know if you have an address and/or telephone number to get a copy of the catalog.

Dear James,

The last address we have is: Hip Crip Catalog, 4399 Tree Haven Drive, Atlanta, GA 30342.

Keeping Women With Disabilities Healthy in Mind and Body

Several programs that look into the medical, psychological and sociological needs of women with disabilities are providing the first reliable data on this population. And some of the initial findings are surprising everyone.

In 1994, the Center for Research on Women With Disabilities at Baylor College of Medicine in Houston, Texas, received a grant from the National Institutes of Health (NIH) to conduct research that would expand the life choices of women with disabilities. Over 1,200 women volunteered to participate in the study of psychosocial issues faced by women with physical disabilities. Recently, the Center began analyzing the data collected from 450 women with disabilities and 450 of their non-disabled friends and family members. The preliminary findings about attitudes towards sexuality, romance, marriage and relationships are astonishing, says the Center's director, Margaret A. Nosek, Ph.D. For example...

• social factors appear to have a much stronger influence on the sexuality of women with physical disabilities than the disability itself;
• society sees women with physical disabilities as potential friends more than as potential romantic partners;
• parents expect daughters with disabilities to remain unmarried; and
• environmental barriers to socializing are more damaging than simply having a disability.

One woman with a disability who participated in the study wrote, "I always feel like a neutral sex. It's like I'm not a woman, not a man. I don't know what I am because I was never approached like a woman..."

This could be one of the reasons why only 34 percent of women with disabilities in the study were married, compared to 55 percent of all women in the general U.S. population. And only a small number 末 31 percent of the married participants with disabilities 末 had children. Even more shocking, women with severe physical disabilities were less likely to have access to reproductive health care, according to the findings. "I guess no one expects us to get pregnant," Nosek joked.

In addition to this study on psychosocial issues, the Center plans to conduct research in such areas as...

• parenting;
• aging 末 including menopause and osteoporosis;
• health maintenance;
• specific health problems such as cervical and breast cancer, cardiovascular disease and AIDS;
• productivity;
• abuse and neglect;
• civil rights;
• independent living; and
• minority and cultural issues.

Exploring Health Experiences

At the Health Resource Center for Women With Disabilities in Chicago, Kristi L. Kirschner, M.D. and her staff are exploring the health experiences of women with disabilities, mental health and stress issues, birth control options and the effects of osteoporosis on these women. The Center, in collaboration with the Rehabilitation Institute of Chicago, delivers a full range of health services for women with disabilities, including pregnancy services, mammograms, pelvic exams, family planning/contraceptive services, preventive health care counseling and psychological services.

In April, the Health Resource Center will sponsor a two-day seminar in Chicago on health care issues confronting women with disabilities. Topics scheduled to be covered include "Strategies to Increase Empowerment in the Hospital Setting" and "The Impact of Managed Care."

Research on Reproductive Issues

Another program at the National Rehabilitation Hospital's Clinic for Women With Special Needs in Washington, D.C., recently got caught in the hospital's financial belt-tightening and was forced to close its doors. Sandra Welner, M.D., the former clinic director, is in the process of relocating the clinic. Welner, who had over 300 women patients at NRH, believes clinics like hers are essential to serve the unique needs of women with disabilities. "At a recent gyneocological conference I attended, a medical presenter told the audience that there were only two birth control options for women with disabilities 末 sterilization and abstinence! This proves that medical professionals must be made to realize that women with disabilities have the same medical and emotional wants and needs as other women," says Welner.

Sexual Response

Two other research projects underway examine the sexual function of women with spinal cord injury. As reported in OSA, June 26, 1995, Marca Sipski, M.D. is conducting research at the Kessler Institute for Rehabilitation in West Orange, New Jersey, on the physiology of female sexual function after spinal cord injury. At Rutgers University in New Jersey, Drs. Barry R. Komisaruk and Beverly Whipple's research focuses on sexuality and women with spinal cord injury. Komisaruk and Whipple's initial findings indicate that contrary to previously held beliefs, women with spinal cord injuries as high as T-6 continue to experience perceptual responses to vaginal and/or cervical stimulation.

The information gained from these projects 末 some of which still need volunteers 末 will help professionals deliver more appropriate health and psychological services to women.

Women With Disabilities Projects
Amie Jackson, M.D.
University of Alabama at Birmingham
Spain Rehabilitation Center
Department of Rehabilitation Medicine
Room 190
1717 Sixth Avenue S.
Birmingham, AL 35233
(205) 934-3330 (voice)
(205) 975-6296 (fax)

Dr. Jackson, a psychiatrist, employs a team approach to her medical care of women with spinal cord injury.

Kristi Kirschner, M.D.
Health Resource Center for Women with Disabilities
Rehabilitation Institute of Chicago
345 E. Superior Street
Chicago, IL 60611
(312) 908-4744 (voice),
(312) 908-8523 (TTY).
For information on seminars, call (312) 908-7997 (voice).

Margaret A. Nosek, PhD.
The Center for Research on Women With Disabilities
Department of Physical Medicine
6910 Fannin, Suite 310 S.
Houston, TX 77030
(713) 797-6282 (voice)
(713) 797-0716 (TTY)
(713) 797-6445 (fax)

Marca L. Sipski, M.D.
Kessler Institute for Rehabilitation
1199 Pleasant Valley Way
West Orange, NJ 07052
(201) 731-3900 (voice)

Beverly Whipple, Ph.D., R.N. and Barry R. Komisaruk, Ph.D.
Rutgers University
Department of Psychology
Smith Hall
Newark, NJ 07102
(201) 648-5853 (voice)
(201) 648-1102 (fax)

Sandra Welner, M.D.
8484 16th Street, Suite 707
Silver Spring, MD 20910
(301) 587-6396 (voice),
(301) 585-5467 (fax)

Legal Briefs

Wrigley Field Owners Settle ADA Suit

Four people who use wheelchairs have created a lot more access at Wrigley Field, home of the Chicago Cubs, simply by filing an ADA suit.

The case of Howard Chabner versus the Chicago National League Ball Club, Inc. was settled out of court January 3 in Chicago. The settlement requires the Cubs to more than double (to 88) the number of wheelchair seating spaces at Wrigley, set aside an additional 120 companion spaces for those accompanying people in wheelchairs and install an elevator to provide access to upper deck areas currently reachable only via steep ramps. The Cubs will also install concession stand counters and ticket windows at accessible heights, put TTY phones at certain pay phone banks and designate reserved parking for vehicles with wheelchair plates in their parking lot.

A San Francisco attorney who has muscular dystrophy, Chabner grew up in Chicago and was a vendor at Wrigley field in the 1970s. He initiated the suit after he tried to purchase tickets to a Cubs versus San Francisco Giants game at Wrigley in 1993 and was told wheelchair seats were sold out. "When I asked how many seats there were, I was told there were only 40. That was unacceptable."

Three Chicago area disability rights activists 末 Anna Stonum, Carol Gill, Ph.D. and Larry Voss, Gill's husband 末 joined in the suit. They were also angry that Wrigley's wheelchair section was not even accessible. Getting to the section required assistance from an usher to use a wheelchair lift and more assistance was needed to get up the steps. Says Stonum, "It was really humiliating to be pulled up those steps in 1994, four years after the ADA passed."

The Chicago National League Ball Club, Inc. is owned by the Tribune Company, one of the largest and wealthiest communications companies in the country.

FYI

Adaptive Fitness Instructor Courses Offered

In 1996, Disabled Sports, USA will offer a series of training workshops for those seeking certification as Adaptive Fitness Instructor (AFI) at locations throughout the country. This training program is appropriate for physical education teachers, physical and recreation therapists and other fitness and health care professionals who want to adapt strengthening, conditioning, aerobics and flexibility exercise programs to include people with disabilities.

Since its inception, more than 600 professionals have participated in the workshops, which are offered in locations such as Bellevue, Washington; Harrisburg, Pennsylvania; Boston, Massachusetts; and Miami, Florida.

The AFI workshops, which begin in April, cost $295. A 50-percent reduction in the registration fee is offered to professionals who work with spinal-cord-injured veterans.

For additional information, contact Disabled Sports, USA, 451 Hungerford Drive, Suite 100, Rockville, MD 20850; (301) 217-0960 (voice), (301) 217-0963 (TTY); (301) 217-0968 (fax).

Did You Know?

The national average cost to taxpayers of housing just one aging and/or disabled American in a nursing home is $40,784? And did you also know that the national average annual cost to taxpayers of state programs providing assistance services to one disabled American in his or her own home is only $9,692?

This kind of information is included in Mouth magazine's You Choose末 a resource packet filled with statistics and pictures. Use the packet to convince legislators to re-direct funding from institutions into community based services. The Policymakers Edition of You Choose costs $228.40 for 20 copies; individual copies cost $14. Send checks or money orders to Free Hand Press, 61 Brighton Street, Rochester, NY 14607.

How to Protect Yourself From HMOs

The most restrictive managed care plans are health maintenance organizations (HMOs), which control and manage every aspect of a patient's care. At the end of 1995, approximately 56 million people belonged to HMOs, estimates the Group Health Association, a trade organization. HMOs may be appropriate for people who do not have chronic health problems, but people with disabilities who have complicated medical problems should be aware of the hidden dangers in HMOs.

How HMOs Save Money

Unlike fee-for-service programs, where providers are paid by the service they provide (creating an incentive to provide more, expensive services), some managed care programs 末 especially HMOs 末 pay providers by the patient (creating a disincentive to provide services). For example, some HMOs give doctors a specific amount to care for each of their patients. The physicians are given the "choice" of limiting services, such as expensive specialist referrals or costly rehabilitation, or absorbing the additional cost for these services.

HMOs force providers into evaluating the need or medical necessity of services. Unfortunately, determinations of medical necessity tend to be biased toward cure or restoration of function, as opposed to management of a condition. For people with disabilities that have no "cure," quality of life can mean the difference be-tween dependency and independence. And as non-disabled policymakers re-tool the existing system, these judgments of "quality of life" continue to play a larger and fuzzier role in determining medical necessity.

Other HMO cost-saving measures include offering claims adjusters financial incentives to deny claims, cutting back on the number of days covered for hospital stays and forcing hospitals to accept lowered set fees for services. These HMO cost-saving tactics affect not only patients but medical providers as well. Because hospitals are hard-pressed to remain profitable with these kinds of restrictions, many face staff reductions or even closure.

Medical Gatekeepers

HMOs typically require that all services be approved by a primary care provider 末 a physician or sometimes a registered nurse 末 who serves as a gatekeeper. Without a medical gatekeeper who is well-versed in the needs of a participant with disabilities, there may not be anyone to advocate for the medical necessity of essential "specialty" referrals. For many people with disabilities, specialists, such as neurologists, physiatrists, or orthopedists make far more efficient gatekeepers than generalists who don't understand the complexities of a specific disability. As one frustrated consumer put it, "Some health care providers are so out of touch with disability health issues, that they don't even know the questions to ask."

In addition, within the HMO, there is often an inadequate pool of qualified specialists to meet the needs of people with disabilities and chronic illnesses. For example, a person with multiple sclerosis (MS) may receive "specialty" consultation from a neurologist who has a sub-specialty in epilepsy but only a cursory know-ledge of MS.

What You Can Do

Before you sign up for any health care plan, do your homework. Ask friends and medical insurance billing clerks about their experiences with a particular plan. Contact the National Committee for Quality Assurance (NCQA) for a copy of their Accreditation Status List. NCQA evaluates how well HMOs manage all parts of their delivery system 末 physicians, hospitals, other providers and administrative services.

HMO Check List

1. Who will be my doctor? Can I see him/her when I wish? Are offices accessible?
2. Does the plan use primary care providers who are not doctors 末 nurse practitioners, physician assistants, registered nurses, for example?
3. How will my doctor be paid? Are there incentives to reduce referrals to specialists?
4. Can I see the specialist of my choice? Do I need prior permission?
5. Are pre-existing conditions covered?
6. Are medical supplies covered?
7. Will the cost of durable medical equipment be covered?
8. Does the plan only cover standard equipment or does it cover customized equipment?
9. Are prescription drugs covered? If so, is there a limit on the number or brand of drugs covered?
10. Can I use any pharmacy or must I use the plan's? What's my share of the cost?
11. Is there a monthly limit on prescriptions?
12. Is blood sugar testing covered?
13. Can I use any hospital I choose?
14. Is emergency treatment covered while traveling? How does it work?
15. Does the plan cover mental health counseling? If so, does it have limits?
16. Is there a lifetime maximum benefit?
17. Has the plan been rated by any consumer group, such as NCQA? What are the results?
18. Have any complaints been registered with state insurance regulating agencies?
19. What is the plan premium? How much are co-payments?
20. Does the policy contain a complaint procedure and an arbitration clause?

For a copy of The Accreditation Status List, contact National Committee for Quality Assurance, 2000 L Street, N.W., Suite 500, Washington, D.C. 20036; (202) 955-3500 (voice), (202) 955-3599 (fax), (202) 955-3515 (voice).

Washington state's Need to Know Coalition, which includes the local chapters of the Alzheimer's Association, the American Cancer Society, the Asthma and Allergy Foundation of America and the Washington Coalition of Citizens with Disabilities, has put together Choices to help consumers make informed health insurance choices. The easy-to-understand guide explains the difference between various forms of health care plans and recommends a series of questions consumers should ask when shopping for a plan. For a free copy of Choices, write Need to Know Coalition, 101 Stewart Street, Suite 800, Seattle, WA 98101; (206) 728-4348 (voice).