Barriers to the Health Care for People with Mobility Impairments in Managed Care Programs

Barriers to Health Care:  Findings From Consumer Focus Groups

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Bonnie O’Day, Ph.D.
Cherry Engineering and Support Services, Inc.
5109 Leesburg Pike
Suite 813, Sky Six
Falls church VA  22041
(713) 379-4289
bonoday@mindspring.com

Pamela Dautel, M.P.H.
Independent Living Research Utilization, The Institute for Rehabilitation and Research

Karl  Poonai, M.P.H.
Independent Living Research Utilization, The Institute for Rehabilitation and Research

Jessica Sheer, Ph.D.
Center on Health and Disability Research, Medlantic Research Institute

Abstract

Objective:  This study identifies the barriers that people with mobility impairments, including cerebral palsy, arthritis, spinal cord injury, and multiple sclerosis, face in receiving primary and specialty services under managed care.

Methods:  Fifty-seven working-age people with mobility impairments participated in disability-specific focus groups and interviews in Phoenix, Philadelphia, and Washington DC, providing their perspective on barriers to quality care, access to care, and payment.  Results were content coded and analyzed using a qualitative software package.

Results:  People with mobility impairments face certain common barriers to care, including physical access to doctor’s offices and office equipment, establishing a positive, trusting relationship with a physician, and payment for durable medical equipment, medications, and rehabilitation.  Each disability group also faces specific barriers that vary according to the nature of the disability.

Conclusions:  As increasing numbers of people experience disability, medical practitioners and managed care companies must increase their attention to serving this population.  Many of the barriers identified in this study, such as lack of physician knowledge and sensitivity to disability, inaccessible doctors’ offices, and lack of adjustable medical equipment, will require only a relatively modest commitment of financial resources.    A case management system, which will require a larger resource commitment, could target specialized services to those most in need and to assist them to navigate the health care system.

Introduction

Providing low-cost, high quality health care for people with disabilities and chronic conditions is a significant challenge to health care administrators and policy makers.  As federal, state, and private health care programs strive to curb increasing costs, they are turning their attention to high health care users, such as people with disabilities, and enrolling them in managed care programs.  Over 40 Medicaid programs have begun to enroll their disabled populations into managed care systems (Kaye, 1999).

People who are physically and developmentally disabled must overcome substantial obstacles to access primary and specialty health care under a managed care system (Currie, 1997).  Many of the health care needs of people with mobility impairments are similar to those of their non-disabled peers.  However, mobility impairment is also associated with some additional preventive and specialized health care needs, which can present significant risks for this population if not addressed (DeJong, Batavia, & Griss, 1989; Sutton & DeJong, 1998; Frieden, Smith, Wilkinson & Redd, (1998)).  For example, people with spinal cord injuries have specific health problems, e.g., pressure sores, urinary tract infections, pulmonary problems, and early onset osteoporosis that must be prevented.  Another problem results from the aging of people with mobility impairments, such as cerebral palsy and spinal cord injury; they are beginning to develop arthritis and other age related disabilities that have a significant impact upon their mobility and daily functioning.  The prolonged inactivity that can result from a mobility impairment places a person at risk for certain chronic health conditions such as coronary heart disease.  Although many people with disabilities wish to engage in health promotion activities, immobility or pain can prevent individuals from participating in aerobics or other forms of exercise (Stufbergen, 1994).

The ability of managed care organizations to address these complex health issues is mixed.  Some experts say that people with disabilities may be the losers when the principles of managed care are applied to the delivery of health care service (Huntt and Growick, 1997).  The use of “gatekeepers” to control costs, limited benefit packages, and reduced access to specialty care present barriers. The course of treatment for chronic conditions, such as cancer and heart disease, may differ among people with mobility impairments. The approval process often necessary to obtain payment from managed care organizations for “extraordinary expenses” is burdensome for people who need this treatment. The authors postulate that managed care in its present form appears likely to be harmful for people with disabilities, especially the Medicaid population. 

A 1997 study (Gold,) found that 12 percent of disabled Medicare beneficiaries in HMOs indicated having trouble making medical appointments, and almost half of those said they gave up trying.  About ten percent of the disabled HMO enrollees indicated difficulty getting their primary care physician to refer them to specialty care they thought they needed and 48% said they experienced a worsening of their condition due to health plan delays.

On the other hand, other researchers (Beinecke, Pfeiffer, Pfeiffer, and Soussou, 1997) found no statistically significant differences between levels of satisfaction of people with disabilities in fee for service and managed care arrangements.  Accessibility of the primary care physician’s office and the physician’s level of understanding of the person’s disability were more highly correlated with satisfaction levels than the type of health insurance system.  These authors also found that the ease of obtaining an appointment and the physician’s level of understanding of the patient’s disability were related to satisfaction with their primary care physician. The authors conclude that managed care is not the disaster for people with disabilities that advocates (Tracy, 1996) predicted.

Beatty and Dhont (in press) found that Medicare beneficiaries with disabilities in HMOs perceive better access to primary care services, and greater affordability of health services than those with traditional Medicare coverage. But they also found that beneficiaries in poor health, or with the most severe disabilities were most likely to perceive access and cost difficulties, regardless of coverage type.  They conclude that Medicare managed care appears to provide better access to primary care and more affordable care, though these advantages are not being shared by those with poor health status and/or severe disabilities.

States that converted their Medicaid recipients with disabilities to managed care discovered that costs could be reduced and quality of care could be improved (Speer, 1998).  For example, Arizona’s Medicaid per capita costs have actually decreased over the last few years, due to the provision of preventive care, fewer and shorter hospital stays, and a competitive marketplace that includes more than a dozen commercial- and governmental-run plans. The Texas Star Plus Program, which serves Medicaid recipients with disabilities, decreased member reliance on emergency rooms and increased coordination of care (Borders, 1999). 

Very little information exists from the perspective of people with disabilities about the health care barriers they face. Even less is known about what barriers people with specific impairments encounter using managed care services.  This article uses a focus group methodology to explore these issues with people who have mobility impairments, including spinal cord injury (SCI), multiple sclerosis (MS), cerebral palsy (CP), and arthritis.  We postulate that certain barriers, such as access to adaptive equipment and physical barriers within the doctors’ offices, will be common to all mobility impaired groups, but that each impairment group faces barriers specific to their impairment.  The article concludes with recommendations to managed care providers to improve medical care for people with mobility impairments and suggestions for future research.

Methodology

The Center on Health and Disability Research at the National Rehabilitation Hospital convened 10 focus groups and conducted six telephone interviews of people with mobility impairments to identify barriers to obtaining the health care they need.  Focus group methodology involves a 90-minute in-depth group discussion on a particular topic.  The moderator follows an open-ended protocol with probes to cover aspects of the topic that do not arise naturally during discussion. This method, which yields qualitative data, is especially appropriate when a subject area needs exploration to generate hypotheses for subsequent statistical measurement (Krueger, 1988). The theory built through the systematic use of qualitative research techniques reflects the experiences of health care consumers with disabilities, and illuminates the issues they face as they seek primary and specialty care.  Formulating theoretical interpretations of data grounded in the reality of the participants' perspectives provides a powerful means both for understanding participants' experiences, and for developing action strategies that will address the problems they face. The findings generated through small sample studies can later be quantified using large sample survey research.

The research team developed a set of discussion questions based on reviewing the limited literature about health care issues as reported by people with disabilities, and on the personal experience of team members who have disabilities.  The questions fall into five related domains: (a) disability-related experiences with primary care providers; (b) access to specialists; (c) physical barriers to care; (d) strategies for getting health plan payment for needed care, including durable medical equipment (DME) and prescription drugs; and (e) issues and dimensions of a high quality health care plan.

The project recruited working-age people with mobility limitations that resulted from four types of medical conditions: MS, CP, SCI, and arthritis. People with impairments resulting from those conditions were targeted because they typically require frequent medical monitoring and have significant need for specialists, such as urologists and neurologists, to treat co-morbidities and complications. These individuals interact with a wide variety of medical providers at a high rate over long periods, and are more likely to see multiple specialists than are non-disabled patients. They typically need medical rehabilitation services, including physical, occupational and speech therapy for maintenance of function as well as acute episodes from time to time over the life course.  (Williams, 1996; Salcido,  1998; Vladimer, 1997; Manheim, 1995; DeLisa & Kirshblum, 1997; Burns, Batavia, Smith & DeJong, 1990; DeJong, 1997).

The four conditions selected for the study also represent differing dimensions of disability, including onset at birth versus later onset, walking versus wheelchair use, and a variety of impairments in addition to limitations in mobility, including speech limitations (associated with CP) and legal blindness and/or cognitive limitations, which sometimes occur with MS. After attrition, the sample consisted of 57 individuals interviewed in 10 condition-specific focus groups (i.e., three groups of people with MS; three groups of people with CP; two groups of people with SCI and two groups of people with arthritis). (See Table I for group demographics.)

Group sizes ranged from four to eight members.  Eight groups were conducted with people enrolled in Medicaid managed care plans in Phoenix, Arizona, Philadelphia, Pennsylvania. Those two locales have well-established Medicaid managed care programs but offer limited choice among managed care plans.  We conducted focus groups and telephone interviews in Washington, DC among federal employees, who can choose a health plan from dozens of offerings.  (We conducted only two focus groups of federal employees because we could not identify a sufficient number of employees with arthritis to hold a group.  We interviewed individuals with SCI by telephone to avoid transportation and scheduling problems.)

Focus group participants were recruited from centers for independent living in the study cities. These community agencies, typically staffed and directed by people with disabilities, provide services and advocacy training to people with a wide variety of disabling conditions, including those targeted for this study. 

Results

Members of the 10 focus groups shared several significant barriers in common, which we discuss first.  We then review barriers raised in the focus groups that are specific to each impairment group.

Common Barriers:
Discussions of access to health care generally consider the question, “Can I get the care I need when I need it?” People with mobility impairments tend to think about access a bit differently, primarily considering access to the physical environment.  They note the absence of widened doorways, curb cuts, ramped entrances, and examining rooms large enough to maneuver, which pose barriers to medical care.  A focus group member stated, “There have been times when I have had difficulty getting from the taxi to the doctor because of no curb cuts.  That is terribly frustrating and maddening.”

Several group members expressed concern about lack of accessible bathrooms and examining equipment in the doctor’s office.  Examining tables that are too high for a patient to transfer from the wheelchair to the table cause problems for both the patient and the doctor’s office staff.   A female wheelchair user explained, “One time I went to the hospital and needed to get an x-ray, and the table was so high.  The woman there, they couldn't put me on the table.  So I had to go to another hospital, because the tables there usually are around the size where you can just transfer on.  This one was like up high. And they wouldn't try to pick me up.  [They were afraid of]…a lawsuit.”

 Getting to the doctor’s office is also an issue for people who do not drive.  Wheelchair users may use a lift equipped, regular route bus service, a door-to-door Para transit service, or medical transportation to get to the doctor.  The advance notice required to schedule a Para transit ride, the need for multiple doctor visits to obtain a referral for a specialist, and the unreliability of the Para transit system are all barriers to care.  “You have to call [Para transit], make reservations, they be late, I get to therapy, and I’ll be at therapy for a half hour then they’re there to pick me up.  Sometimes they can't find my house.  I stopped going to therapy because of these problems.  Another man added: “I ain't been to my doctor yet.  They call me and ask me to come for my yearly, but it's just a hassle.  I just don't feel like it because sometimes I went, I would go get the referral and then Para transit would mess up, so I would have to go back and get another referral because I couldn't make that one, so I have to make another one for another appointment.  And I just said the heck with it.  And I haven't been yet.” 

Once these barriers are overcome, individuals with mobility impairments need the same access to primary care as others.  A positive relationship with the primary care provider is paramount for group members.  One woman explained,  “So far to date, my primary doctor is a good doctor.  I've been with him since 1969. He followed me from like a teenager to date and still does.  Anything that I ask of him, he's right there to assist me, or if I tell him that I want something, he sees to it that I get it. . .  I'm quite satisfied with all of my doctors.  I've been fortunate and blessed enough to have a doctor who is understanding and who believes what I tell him.”

Another group member with MS said her experience with primary care doctors was mixed:  “My primary care doctor comes in and spends about ten minutes with me.  You don't get a chance to tell him everything you want to talk to him about, but they seem to be very thorough with me.  They say I'm doing so much better.  I believe I am, in some areas, as long as I don't fall down.  Where I do have a problem is when I go for my primary care I always have to keep reminding them about certain things that need to be checked, like thyroid.  I have a new doctor and I've had him for about three years.  When I first got him, I asked what he knew about MS and he said, well, not much but I'll find out. I don't think he knows very much.” 

As the woman quoted above states, finding a doctor with basic knowledge about the disability and how it affects daily life and personal health can be crucial.  Some group members said that they interviewed several physicians to insure that the doctor had good communication skills and basic knowledge about the disability before making a selection.  Other participants noted that doctors need not have in-depth knowledge about their disability, but must be willing to refer the patient to a specialist with disability-specific knowledge when needed. 

Access to specialists is another critical issue for people with mobility limitations.  Some group members said that they prefer to use a specialist as their primary care physician because the specialist has the knowledge base to treat the disabling condition effectively. They see the primary care doctor as an unnecessary intermediate step to obtaining the health care they need.  Some health plans do not take this need into account when designing managed care programs. Other group members prefer to use the PCP as their primary doctor.  In this case, they appreciated the PCP’s willingness to refer to a specialist when needed.  Some group members complained that the specialist they needed to see was not in their health plan.  These group members expressed a preference for managed care programs that allowed “out of plan” referrals.  Participants also felt that specialists should be more informed about recent research developments, state-of-the-art treatments, and relevant assistive technology.  They suggested the need for a centralized information resource on specific disabilities so that patients and doctors could find up-to-date information in one place. 

Some group members felt that doctors are discouraged from making referrals to specialists to keep costs down.  One woman with arthritis stated, “there seems to be a holdup on seeing specialists.”  Others felt that PCP’s referred them to specialists when the need arose, but the specialists had difficulty getting their prescriptions for therapy or medications approved.  A woman with CP said, “Things like commode seats, a circulatory pump, anything that is outside the realm of what they normally approve.  It's not the doctor's reluctance to prescribe, it's the insurance company's unwillingness to pay.  The doctors say, ‘I'm trying to get this equipment or therapy but I can't.’  It's really frustrating for them.  The insurance companies have to be more flexible when it comes to people with disabilities.   If they're going to accept people with special needs, they need to be more flexible.”

Another woman added, “Once you get someone competent, they have trouble getting prescriptions past the insurance company for PT, OT, pool therapy, AT and my doctor is really frustrated.  We went through the appeals process to get an exercise machine to reduce the osteo-arthritis.  We had to go through the process three separate times and got turned down every time.  I feel like the doctors are trying to do good, but are blocked by the economic constraints of the plan.”

By far the most frequently expressed problem in the focus groups was access to durable medical equipment (DME), such as wheelchairs.  Some DME is simply not covered: for example power wheelchairs, scooters, or liberators for people with speech difficulties.  Lack of coverage can cause exacerbation of certain disease related symptoms, as one woman describes “Well, I had a recent experience with my primary doctor who refused to give me a prescription for a scooter.  Her assistant stressed to her that I would just be using the scooter to do a little shopping, and she refused.  [My specialist] went back the second time and she refused again.  She went back the third time and [my primary care doctor] refused again. So I asked my specialist about the edema I was having.  The specialist looked at my legs one day and said ‘my goodness.  Your legs alone weigh ten pounds.’  She pulls that back to my primary doctor.  My doctor still said ‘no scooter.”

If the DME is covered, health plans often cover only the DME that is cheapest, which may not be of the highest quality or the best fit for the individual.   Health plans often have minimal or no coverage for equipment replacement or repairs.  Still another problem is that equipment needed for independent living, such as van lifts or shower chairs, is not covered, since it is not deemed to be “medically necessary.”  When asked about the most important consideration in selecting a health plan, one woman answered, “Find one that's always going to be able to get you equipment no matter what it is, without a hassle.  Especially if it's a part of life that you use every single day, like gloves, blue pads, fleets.  Find someone that would always be able to get it and they would always pay for it, the pills, everything that you need for everyday life, even your adjustable bed, even wheelchairs.”

Obtaining the right prescriptions was another significant barrier. A common problem was that the prescription recommended by the doctor was not on the formulary of the health plan, or the health plan required the use of generic drugs, which are less effective and caused side effects.  One man stated, “My primary care doctor and my multiple sclerosis doctor both felt I should go on this new drug, and it's quite expensive, and I wanted to go on that…. But the insurance turned it down and said they weren't going to pay for it.  I had to call the insurance company. Then they had to go through writing letters to my primary care doctor and everything like that.  So I just didn't feel like dealing with it.  So I just gave up on it.  I didn't do it.  I'm not on it, bottom line.”  Another woman with arthritis stated, “I have noticed that they do not cover yeast infection medication.  None of them.  It is totally off the formulary.  The medication for arthritis makes you more prone to yeast infections.

Another problem is that some people with disabilities use an above average number of prescription medications and some health plans limit the number of prescriptions that can be filled per month, or at one pharmacy visit.  Still another barrier is that a doctor may require an unnecessary in-person visit for a prescription or a refill that the patient views as a routine problem.  For example, group members with SCI resented having to arrange special transportation for a trip to the doctor to get antibiotics whenever they had a urinary tract infection--a frequent problem for people with this impairment.  Other group members saw an advantage to managed care programs—that they could order prescriptions by phone and receive them in the mail for a very low price. 

Access to rehabilitation, such as occupational or physical therapy, can also be a problem.  These therapies are generally covered if the patient is showing signs of improvement, but are not covered if the goal is to maintain muscle tone or to prevent muscle atrophy.  Focus group members had difficulty receiving more than a very limited number of rehabilitation sessions, and could get services only at hospitals or clinics rather than at home.  Home health is generally limited to post-acute care, rather than the long-term maintenance therapy that people with mobility impairments often require.  One woman explained, “They'll only take you till you stop showing improvement.  I want to take water therapy to rebuild atrophied muscles and I had to pay for it myself.  This is for prevention and they won't do it.  I want things that keep me healthy.”  Another woman explained, “I wish there was maintenance physical therapy for my condition and the attitude is I just can't get anywhere.  Unless I have a new condition, maintenance is not enough.  I have hellacious spasms and when I rip a muscle out through a spasm, then they'll fix it.” 

Another group member summarized his frustration about managed care programs:  “I left the nursing home because I got tired of depending on people telling me what I could do and what I can't do.  But with this it's the same thing.  They tell you what you can get, and if you can get it and why you need it.  It's like you're a child, like go see a doctor and come back with a note. It's a hassle.”  

Concerns of People in Specific Impairment Groups

Cerebral Palsy:  In addition to the concerns mentioned above, people with CP were most concerned about doctor/patient communications.  Cerebral palsy can cause slow and garbled speech, which is sometimes difficult to understand.  Some people with CP use a talk board or a computer with voice output to communicate.  Whether they use their voice or assistive technology, time and patience is often required to communicate with the patient directly.  Participants with CP complained that doctors and other staff do not take the time to understand their speech patterns, talk to their companion rather than directly to them, or assume the presence of a cognitive, as well as a physical disability. One woman said, “When you have a Developmental Disability, there is this notion that you have a case manager or your mother to know what your needs are.  When I call my plan and when they find out that I have CP, they always ask where my case manager is.  They don't want to acknowledge that I have intelligence and foresight.”  Another woman exclaimed, “I think that a key is to let them know that you are intelligent. I don’t hesitate to tell these doctors where I’ve gone to school, and that I am employed and all that. If they don’t think that you are intelligent forget it.”

Members of the CP groups felt that sensitivity to these disability issues was essential to the patient-physician relationship.  Discomfort with the patient’s disability or low expectations of the quality of the patient’s life may impact treatment decisions, especially in the area of sexuality.  One woman described this experience:  “[One doctor I saw] was awful. She didn’t think people with disabilities had to deal with the same life-planning issues that non-disabled people needed to deal with. Things that she said were just not with it. It related to birth control issues, and with people with disabilities she really didn’t think it would be an issue. So I ran out of there as fast as I could. ”

Group members with CP also expressed concern about the continuity of the care they received.  Continuous changing of health care personnel is unpleasant for everyone, but has more serious consequences for people with CP because of the additional time needed to establish a positive relationship and to educate the doctor about needed care.  One man said, “Well, you go to the doctor one time, you see him for two months, and then he's shipped somewhere else, you don't know who you will see.   He doesn't know you from beans.  That's the biggest problem.”

People with CP were also concerned about  the impact of growing older upon their disability.  Because CP is a disability caused by lack of oxygen to the brain during birth, medical professionals assumed that the level of disability would remain static over the life span.  Recently, people with CP have complained of age-related decreases in body function exacerbated by the CP.  For example, people who used walkers or crutches have begun using wheelchairs due to decreased strength and coordination.  People in the focus groups stressed the importance of finding a physician who is knowledgeable about these issues.  One woman stated:  “The big problem for me is the issue of CP and aging, and there has not been that much medical knowledge out there about issues surrounding aging and Cerebral Palsy, in such things as exercise and keeping the body as fluid as it can possibly be. And I lucked out; I really did, because my doctor is just wonderful on this issue.”

Lack of understanding of the spasticity caused by CP also poses treatment barriers.  A man explained, “The X-ray technician tried to X ray my hip and I would jerk.  The doctor came in and asked why I was not cooperating.  I did it because I was spastic.  This guy just didn't understand that I had no control of my inadvertent movements.  There is insensitivity in the medical field sometimes.”

Spinal Cord Injury:  Group members with SCI expressed the most frustration about difficulties obtaining medical supplies, such as enemas, catheters, and bed pads.  In some cases, health plans will allow the patient to order supplies only when the patient has completely used up their supply, creating a lag time before the next order arrives. One man with SCI explained, “I take fleets enema, running out of it and not being able to afford to pay for it myself, that's my biggest concern, because the last two weeks I've been running out of fleets enema and I've been calling my health place and they give me the run around. You can only have up to eight at a time, then what you supposed to do after you run out of eight.  Then they say you are supposed to talk to your doctor and you got to go to three and four people before you can get anything done.  Without your bowel movement, that can be fatal.”

Another woman complained, “About a year ago, I use the self catheter, which you use and throw it away.  Medicare determined that I could only get four a month, when I use over 200.  They wouldn't approve the rest.  I asked them to review it.  I took them into my doctor and explained the situation and he wrote a letter.  They still wouldn't approve it.  They told him he needed to resubmit it with the words "sterile procedure."  Then, they said I had to have an infection, so I said I'd hire an attorney and sent them a certified letter saying this was causing me emotional and physical damage.  Right after that, they approved it and everything's been fine for about five months.  I can imagine that the average person would really feel lost.”

People who need medical supplies and other routine care face significant obstacles getting their care approved.  Being shuffled from the doctor to the insurance company, to Medicare or Medicaid, and back to the doctor is difficult for any patient, but can present more of an obstacle for people with mobility impairments due to the need to arrange transportation, personal assistance, and other supports.  One man described his frustration with his managed care plan, “My problem is trying to find the right person.  You're supposed to call around, call your Medical Assistance or Health Pass worker, they'll call them and tell the doctor to write a note, and then send a note back to us and all that.  You don't know whom to really contact because when you contact one person they send you to somebody else.  That's the hassle, not knowing who to contact or what routes to take as far as that situation.  To me that's a big hassle.”   Another man added,  “It’s like yes, okay, you want this, okay, fine, call for this or go here for this referral, go there for that referral, not understanding that we're disabled.
 

Arthritis:  The most frequent concern people who have arthritis expressed was lack of coverage for alternative medicine, such as homeopathy, chiropractic care, and holistic healers.  People without disabilities share this concern, but people with arthritis experience this lack more acutely.  One woman explained, I am on a total alternative regimen.  I have seven doctors and I have to keep them all coordinated.  I paid out of my own pocket for the natural healing.  The insurance paid for the joint replacements.  If there were more attention to prevention, maybe I wouldn't have had to do that.  When I go to regular doctors, I feel like I'm putting my life in the hands of barbarians.  When I go to the natural healer, she worked with me.”

Another woman continued, “Insurance companies don't recognize that people with arthritis are lacking in some nutrients. They need extra proteins or sugars to strengthen them.  Yet, a lot is preventative, it will prevent us from getting worse and save on medical bills.  Sometimes it prevents progression and sometimes keeps you from developing other problems.  We as disabled people need more nutrients and supplements that are not covered.  Maybe sometime it will be.”

Another participant stated, “There are supplements that help you not get Candida or yeast infections and it's not covered.  The less prednizone you take the better you are, but if you need prednizone you need other supplements that insurance doesn't cover.

People with arthritis expressed the desire for psychological therapy and/or counseling to help them cope with their disabilities.  The intermittent nature of the disability, fatigue, pain, and diminished independence can make living with these disabilities difficult.  A woman explains, “If you have a drug problem you can get therapy, but there's no therapy to cover what happens when you have a disability, how it effects your job or your family.”

MS: People in the MS groups share the concern about lack of psychiatric coverage with people in the arthritis focus groups.  “My insurance made me switch from Health Division to a company called Value Behavioral Health Services. I would have to get approved for so many visits. It would take forever for my therapist to get paid, and I felt bad because I wasn't going to pay much above what I was responsible for. I didn't think I should have to. That was why I was paying health insurance premiums. To this day, I don't know if she's ever gotten paid in full what she's owed.”

People with MS also were concerned about the amount of paperwork necessary to receive their health care services.  This is especially ironic because managed care systems generally reduce paperwork over a fee-for-service system.  Again, paperwork can be a nuisance for any patient, but poses a real barrier for people with disabilities, who may have difficulty completing the required documentation due to physical or cognitive limitations.  One woman with MS explained, “Like every day, I have to prove that I'm disabled.  I get two hours of personal assistance and he wanted to know my doctor's name and phone number, my son's name and phone number. Why do I have to keep providing all this information?  Sometimes it's hard to pull it up right now.  I try to laugh and keep a good attitude but sometimes I get angry when I have to answer things quickly. Or, they'll treat me like I'm retarded and they have the answers and I don't.  I am not retarded but I am not always as quick as they think I should be.”  Another woman continued, “I had to go to one of those urgent care clinics and the paperwork to get reimbursed for that one visit took me probably half-an-hour to do. My handwriting is bad. I do it slowly, and I had to fill those forms out by hand. That's why it took me half-an-hour to do that paperwork. That really bugged me because that's a problem that I have.”

Another woman with MS summarized the problem: “I think for anyone who has a serious illness, especially one like we have where we're just exhausted at the end of the day and have flair-ups where it really affects mobility and communication, that sort of thing - one of the big issues is all the paperwork and things like you went through with the appeal. The more streamlined it gets to actually have it and file for it, the better.”

Differences between the Medicaid and private insurance groups:  While focus groups in Washington DC, Philadelphia, and Phoenix expressed similar concerns, the Washington DC participants differed markedly in their overall experiences with their health care system.  These participants were all employees of the Federal Government and could choose from dozens of health care plans.   In marked contrast to the Medicaid recipients from Philadelphia and Phoenix, the DC participants were largely satisfied with the care they were receiving.  They mentioned the efficient processing of supplies and equipment, the easy referral process, and most importantly, flexibility and freedom of choice in selecting physicians.  Some participants mentioned difficulty in identifying a physician who understood their impairment, identifying an accessible doctor’s office, and concerns about long-term health.  Some participants also mentioned initial inconveniences to obtain coverage approval for therapy and DME before things went well.  However, they ultimately expressed positive sentiments about their health care.  These participants strongly recommended avoiding HMO’s in favor of a more flexible managed care system.

Discussion

Approximately 54 million people in the United States have a disability.  The rate of disability increases with age, with lower extremity mobility impairments being most common (US Department of Health and Human Services, 2000).  Since 1900, the percentage of Americans 65 years of age and older has more than tripled, and the absolute number has increased from 3.1 million to 32.1 million (AARP, 1991) and increases in age and disability are expected to continue.  Survival rates of people with impairments at birth and traumatic injuries later in life, along with significant advances in medicine and treatment enable people with severe disabilities to live normal life spans (Brandt & Pope, 1997). Managed care organizations and medical service providers must respond to the needs of the changing population.

Focus group members faced barriers to health care which can be divided into four broad categories: access to the physical environment, knowledge and sensitivity of the physician about the impairment, service coverage, and negotiating the health care system.  We also postulate that race and socio-economic status have a significant impact on participants’ experiences with the health care system.  We will discuss each of these topics in turn.

Physical Access: Participants in the focus groups mentioned physical access as a major problem.  Significant numbers of people with mobility impairments use wheelchairs and require examining rooms large enough to maneuver a wheelchair, widened doorways, and modified bathrooms.  Even people with mobility impairments who do not use wheelchairs require ramped entrances, lightweight office doors, and bathrooms modified with raised toilet seats and grab bars.  Power examination tables and ex-ray machines which can be raised or lowered to enable the individual to position him or herself as independently as possible are essential for a thorough and complete medical examination, as well as the comfort of both the patient and the physician.

Title III of the Americans with Disabilities Act (Americans with Disabilities Act, 42 U.S.C. pp 12101-12213 (1990), which was passed in 1990, requires that places of public accommodation, including physicians’ offices, be accessible to individuals with disabilities where readily achievable, or “cheap and easy.”  The concept of “readily achievable” allows access modifications to be phased in over time, so that modifications deemed as too expensive at any given time can be phased in over a period of years. Costs of purchasing such equipment or modifying doctor’s offices can be reduced with tax credits and other incentives. (Footnote: Small businesses with gross receipts of up to $1,000,000, or up to 30 full-time employees, may take a tax credit of 50 percent of any amount over $250 and under $5,000 spent to comply with the ADA.  Any private employer can take a tax deduction of up to $15,000 for costs of removing structural barriers in its facilities or vehicles (Golden, Kilb, & Mayerson, 1991).

Medical practitioners have made significant strides to provide access to people with disabilities over the ten years since the ADA was passed.  Increasingly sophisticated facilities and equipment have emerged to help patients with disabilities get adequate medical attention (Price, 1996), but the experiences of focus group members indicate persistent problems.  Medicaid programs should insure that their providers address physical and programmatic access.  Managed care organizations should stress the importance of physical access to their medical providers and, at the very lease, include information on physical access in their marketing materials to members.

Knowledge, sensitivity, and respect:  Establishing a positive and trusting relationship with a primary care doctor is of paramount importance to focus group members.  People without significant disabilities are also concerned about this issue, but people with mobility impairments often need more frequent contact with their physician to deal with complicated and ongoing health care concerns.  Primary care physicians typically receive very little formal training in addressing patients’ concerns about their limitations in physical functioning (Hoenig, 1993) and have limited knowledge about the interaction between the patient’s health and disability (Welner, 1999), so the notion of mutual respect is crucial. 

Although knowledge about the impairment was an important factor, focus group members thought that finding medical professionals that took the time to listen to their concerns was even more critical.  These patients have lived with their disability and have their own valid insights as to what is best.  Focus group members who had the freedom to select their physicians often conducted personal interviews with doctors and based their selection on interpersonal communication.  They wanted to select physicians who listened to their concerns, responded to their needs and took the time to understand how the disability affects their daily life.

While many participants described positive relationships with their physicians, others felt that their physicians were not knowledgeable and experienced in treating disabled persons.  People with CP complained about doctors’ communicating with assistants or case managers, rather than taking time to communicate directly with the patient. They also wished that doctors would cooperate with them to overcome problems in administering tests caused by spasticity.  Focus group members felt that primary care doctors did not know what to do if they could not “cure” an ailment.  They suggested including materials in medical school curricula to train physicians to listen and respect people with disabilities. 

One of the components of a positive relationship with a PCP was the doctor’s willingness to refer the patient to a specialist when needed.  Focus group members did not expect their PCP’s to understand all aspects of their disability.  Rather, they expected the PCP to have basic knowledge and the willingness to refer them to a specialist for more specialized treatment.  In some managed care arrangements, the PCP acts as a gatekeeper to the health care system and monitors utilization of rehabilitation and specialty care.  The physician has the incentive to make minimal referrals to specialists and rehabilitation (Salcido, 1998). 

Focus group members felt they needed referrals for specialty care, rehabilitation, and equipment at higher rates than other patients, and wanted to find doctors that would be willing to make such referrals.

Coverage Issues. Unequivocally, the biggest disadvantage faced by focus group members was coverage restrictions. People with arthritis and MS were most concerned about coverage for prescription drugs such as Zoloft, to deal with depression, which can accompany these disabilities.   Focus group participants also believed that plans sometimes cover only the generic form of a drug when one is available.  This may be true for some drugs for some Medicaid programs, but it is not generally the case for private sector HMOs (Palsbo, Jones & Hatch, 1999).  Focus group members also stressed the importance of rehabilitation therapy, such as physical or occupational therapy, to prevent loss of function and control spasticity.  Many HMO’s and preferred provider organizations are dictating across the board post-injury limits of 30 and 60 days on the number of inpatient days for people with paraplegia and quadriplegia, respectively.  Given these limitations, outpatient rehabilitation, referral to specialists for bowel and bladder management, and DME are essential (Williams, 1996). 

The Focus group members with SCI were most concerned about coverage of equipment, such as wheelchairs, and supplies, including catheters and blue pads.  Arthritis patients expressed an interest in coverage of pain management specialists, alternative medicine, and water therapy for atrophied muscles. In many instances, they felt that alternative medicine methods prevented the need for more costly corrective procedures and treatments. Focus group members in all groups were concerned that coverage for rehabilitation is nearly always limited to restorative therapy and does not pay for therapy to maintain or prevent loss of physical function.  More generous use of therapy could help many people with disabilities maintain a higher level of independence and work productivity, and prevent a slow loss of function over time.

Managed care organizations need to be more open to approving specialty care, rehabilitation, DME, and other non-routine services for people with mobility impairments.  Decisions should be based upon the doctor’s recommendation and considered on a case-by-case basis.

Health plans should allow people with complex, chronic conditions to use a specialist as a primary care physician.  Focus group members, especially those with MS, felt that the PCP approval requirement presented an unnecessary roadblock to receiving specialty care.  They resented the requirement of getting a referral  for specialty care they knew they needed.  Whether specialists are willing and have the training to provide primary and preventive care, such as pap smears and mammograms, is a question that needs to be answered.  One study found that only 40 percent of Physical Medicine and Rehabilitation (PM&R) physicians were willing to assume PCP responsibilities Francisco, Chae, & DeLisa, 1995).

Navigating the System: A related issue is negotiating the managed care system—getting what you need when you need it.  Focus group members were not aware of their rights in using a managed care system, how to appeal a decision, or to whom to go to get special approval or discuss problems.  A case management method has been shown to be effective in assisting people with disabilities to navigate managed care systems.  For example, the Texas Star Plus Program in Houston assigns a case manager to all its SSI/Medicaid recipients with disabilities. This individual is responsible for case coordination, trouble-shooting, and assisting with complaint resolution.  Some focus group members may have benefited from a similar approach.

Conclusion

As increasing numbers of people experience disability, medical practitioners and managed care organizations must increase their attention to serving this population.  There are several advantages to managed care, including cost containment, service coordination, and low-cost prescription benefits.  However, there are some significant barriers.

Many of the barriers identified in this study such as lack of physician knowledge and sensitivity to disability, inaccessible doctors’ offices, and lack of adjustable medical equipment, will require only a relatively modest commitment of financial resources to address.  We recommend that training materials and curricula be developed to address these issues.  We also recommend that case management be offered to people with chronic long term or complex conditions.  More information about the health plan’s grievance and appeals process should be provided. The appeals process should be streamlined, particularly for time-sensitive coverage decisions.

There appear to be serious access problems in the Phoenix and Philadelphia focus groups where poverty, minority status, and disability intersect.  It is difficult to determine whether these differences stem from differences in Medicaid and employer coverage, the choices offered to members of the DC focus group, or race and SES.  Further research is needed to clarify these relationships.  Research is also needed to examine the impact of socio-economic status on access to health care for people with disabilities using managed care programs.

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Support for this Web cast is provided by the National Institute for Disability and Rehabilitation Research (NIDRR) as part of its initiative to promote greater use of disability research findings by consumers, their families, service providers, and other non-researcher stakeholders.  Specific NIDRR project support comes from RIIL (Research Information for Independent Living), RRTC on Managed Health Care & Disability, and RTC on Health & Wellness. NIDRR is part of the U.S. Department of Education, and no endorsement of the opinions expressed as part of this Web cast by the Department should be inferred.