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
Pamela Dautel, M.P.H.
Independent Living Research Utilization, The Institute for Rehabilitation
Karl Poonai, M.P.H.
Independent Living Research Utilization, The Institute for Rehabilitation
Jessica Sheer, Ph.D.
Center on Health and Disability Research, Medlantic Research Institute
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
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.
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
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
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
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.
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
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
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
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
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
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
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
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.
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
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.
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
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
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