< TITLE>Future Perspectives: Meeting the Common Challenges of Aging with a Disability
CODI: Cornucopia of Disability Information

Future Perspectives: Meeting the Common Challenges of Aging with a Disability

Future Perspectives: Meeting the Common Challenges of Aging with a Disability

Kenneth Brummel-Smith M.D.
Director, Geriatric Evaluation and Management Program
Portland Veterans Affairs Medical Center
Associate Professor of Medicine and Family Medicine
Oregon Health Sciences University

Joan L. Headley, M.A.
Executive Director, International Polio Network
St. Louis, Missouri

Susan Blatt, M.A., C.C.C.
Executive Director, Stroke Association of Southern California


A Crisis in Health Care

Brummel-Smith: I'm going to make some brief comments to respond to some of
the issues that were raised yesterday in the question period about the
provision of care and some of the difficulties we face. There is a Chinese
character, or letter, for the word crisis which is made of two separate
characters combined. One of those characters is danger, the other is
opportunity. Although there is definitely a health care crisis in this
country -- I believe a crisis is facing us as well with regard to disability
and rehabilitation -- and there is much danger in that, there is also a great

The danger is that the present medical model used in most of our health care
system doesn't fit the needs of most people who have disabilities, either
older people who are aging and acquire disability or younger people who are
born with or develop a disability and then age. But the opportunity is that
this new growth of advocacy and knowledge enables us to make the shift that
now is needed. We need a "paradigm" shift, as it is called; a paradigm is a
way of thinking about reality, because, as you probably know, there is no
such thing as reality. We actually create reality. We create it by the way we
think about it and describe it. If we want to describe that we "catch"
something that causes a disease, and then we take a medicine and it takes
away that disease, that's a form of reality we choose to believe.

Or we can choose to believe that there are relationships between a person's
psychological and social state and their physical state that interact
together and create health or disease. The combination of knowledge about the
biopsycho-social approach, aging, and knowledge about disability offers us
the best chance to make that shift. So I'd like to take a few minutes to
describe the inherent dangers and the conflicts in the present belief system.

First, if we look at things from a purely personal level, a lot of conflicts
and dangers face us. One is that there are more older people than ever
before, there are going to be even more in the future, and the rate of
dependency is rising. We need to face the fact that the standard medical
model is not going to be able to deal with that. People with disabilities are
living longer than ever before, but the effect of aging on those persons is
basically unknown, and we are just beginning to study that. There is a group
of people who have never existed before: adult children with pretty
significant disabilities who are now taking care of their elderly parents.
It really lends a whole new meaning to the words "sandwiched generation."
Inherent in the prior discussions of the sandwiched generation was the
implicit statement that the daughter who was providing care for her older
mother was able-bodied. We have a different situation now.

Another issue: What is the duty of society to protect vulnerable persons and
yet also promote individuals' making their own choices and being autonomous?
We have seen some very interesting dilemmas develop regarding nursing home
placement for elders with cognitive disabilities. On what side of the
argument should we fall to promote autonomous decision making?  Where should
the role of the family be involved in that? And on the other side, are we
letting go of a need to protect vulnerable persons?

Dangers at the Societal Level

What about dangers at the societal level? One potential danger is that the
number of people with disability -- both older persons with disabilities and
those aging with a disability -- is rising, but access to rehabilitation is
being curtailed. So while we are seeing an increasing understanding of the
functional approach, as Dr. Siebens mentioned yesterday, at the same time
attempts are being made by third-party payers and other people to try to
limit expenditures on rehabilitation.

Medicare already is trying to limit expenditures on rehabilitation. You may
be familiar with the three-hour rule which stated that in order to receive
reimbursement from Medicare for inpatient rehabilitation, the person had to
go through three hours of therapy per day. They weren't thinking of Dr. Perry
when they did this, in terms of one or two minutes' work and one minute off.
They just came up with three hours, no one knows how.  My guess is they said,
"Oh, let's see, we've got PT and OT and speech pathology, three."  At least
one study has shown that the institution of the three-hour rule did not
increase people's functional abilities, and actually increased costs.

Another big question is the emergence of managed care systems.  We know that
in some HMOs the range of rehabilitation services is already being curtailed.
We need to look very carefully at what will be the impact of going to a
national managed competition system. My personal bias is that a managed
competition system will not work. It's a nice idea, but we really need a
national health plan. That is the only way that we will be able to have any
type of unified, coordinated coverage.

Still another concern is that age is being used as a way of limiting access
to rehabilitation. People are using age-defined criteria. Now I am not
inherently against age-defined criteria; they may be useful in many
circumstances if other aspects are also taken into account. The best criteria
for deciding whether to provide rehabilitation should be assessments that
show whether a person might benefit.

Rehabilitation is now being co-opted by many people for many different
reasons, often by for-profit companies. During the question period yesterday,
somebody asked, "What are DRGs?"  DRG stands for "Diagnosis Related Groups,"
and they're how Medicare decides on payment to a hospital for a particular
person's illness or admission. It is based, obviously, on a diagnosis. You
have a stroke, the hospital gets so many dollars. This system is for payment
for acute care.

The DRG system has replaced the old payment system, which was called
retrospective payment. Under retrospective payment, I did as a doctor what I
thought was right, hopefully in concert with the patient, and then we billed
Medicare for it.  Naturally, Medicare had concerns about retrospective
payment because doctors' decisions aren't always valid, and it is difficult
to limit payments "after the fact."  So prospective payment was instituted,
where you know in advance what you'll be paid. However, DRGs are based on
diagnoses, not on function, and function is what really determines outcomes.
Function, not diagnosis, determines disability.

At the provider level there are other dangers. The need for rehabilitation is
great, but knowledge about rehabilitation is very limited. Most geriatric
physicians and primary care physicians know little about rehabilitation, and
unfortunately most rehabilitation physicians don't know much about
geriatrics. So there is a need to work together.

Opportunities for the Future

Even though we are faced with these conflicts, there are great opportunities
ahead. People who have early life disabilities are very strong advocates and
know a lot about how to cope with health care systems. They have much to
teach older people who are now just beginning to deal with these things.
Older people, on the other hand, have dealt with something nobody else has
dealt with -- how is it to live 60, 70, 80, 88 years?  They, in turn, can
teach disabled people about the adjustments that are specific to aging. The
negative attitudes toward disability, I find, are not that dissimilar from
the negative attitudes about age. Ageism and disabilitism combine to work
against the person, but they also serve to call forth the need for change in
our view of health.


Concerns of the Polio Community 

Headley: When I asked people within the polio community what they consider
the most important priorities for the future, everybody agreed on three
things. One, we still need to identify the cause of post-polio, identify risk
factors, and document successful treatment programs. When I asked the
researchers with polio what the need was, their basic comment was that we
need more research dollars.  When I asked researchers without polio, they
said that we still do not know the natural history in polio survivors and we
need more research, particularly regarding muscle function and motor unit
viability in polio survivors.

Changes in society that are not directly related to health care may also
help. Perhaps we will see what I call the "acute care dividend." It's like
the peace dividend. The peace dividend says, We don't have to worry about the
Soviet Union any more, so let's take all that money we were throwing into the
military and start looking at other ways of spending it. Maybe we'll get an
acute care dividend.  Six percent of the Medicare population used 60% of all
Medicare dollars, and they have a 50% one-year mortality rate.  So most of
the money spent on Medicare is spent in the last six months of life.

We need to realize that the high-tech intensive care model of medicine is not
working; it doesn't satisfy people's long-term needs. We need to start
limiting that kind of care and instead shift into functionally oriented,
independence-oriented, autonomy-based, decision-making kinds of medicine. And
that's where disability and geriatrics both have a way of working together to
teach the health care system to do it right.

Clinicians or health professionals with polio said that we need to study
polio problems because they offer a unique opportunity to study aging of the
nervous system. They feel very strongly that there are lessons to be learned
from polio which would be important in understanding aging, other
neurological diseases, or other people with neurological problems as they
age. One person felt that we need to stop accepting the misinformation given
out by medical professionals -- specifically, that these problems are due
just to aging.

Health professionals without polio said that we need to think realistically
about polio survivors' continuing need to conserve energy and to protect
their joints. For some polio survivors, there will be an increased need for
ventilators, so they will need durable medical equipment and the means to pay
for it. As polio survivors age, or as their aging parents who are their
caregivers die, personal assistance services or attendant care will become
very important. Some clinicians mentioned that there would be a greater need
for maintenance physical therapy as well as for comfort physical therapy.
Lastly, several mentioned a great need for attention to major pain problems
of polio survivors.

Polio Survivors Speak Up

When I talked to polio survivors themselves, and these people identified
themselves as advocates, they said that they needed their opinions to be
respected more by the medical profession.  Some said, "We need to educate our
spouses as to our needs."  Their spouses probably would say that we need to
educate polio survivors about their needs, because it obviously goes both
ways. I think there is a need for us to connect with minorities such as
African-American, Asian-American, or Hispanic polio survivors. We need to get
polio information into medical schools.

Borrowing from the work of Dr. Maynard, I looked separately at the responses
of three different groups of polio survivors: passers, minimizers, and
identifiers. Maynard has classified as passers those whose disability is so
mild it can easily be hidden in casual social interaction; they could pass
for non-disabled. Minimizers have a moderate disability that is readily
recognized by other people. Identifiers are significantly disabled by acute
polio; they generally need wheelchairs and may also use repiratory equipment
(see Maynard, 1991).

A few people who are passers -- people who could pass as nondisabled -- said
that we should stop trying to help people cope with new disability. It is
very individual. What we really need is more research dollars so that we can
get a cure. We need to inform and advise polio survivors concerning the
benefits of continuing to work for income, or work to pay for insurance,
against the dangers of continuing to work and accelerating their post-polio
syndrome. We need better and more information and sensitivity to assist those
polio survivors who are having problems but who do not look disabled.

Minimizers said that there is a real need for polio survivors to accept
things that cannot be changed and to recognize that there are some physicians
out there who do understand and are trying to help. We still need to educate
people that this is not a recurrence. We need to examine alcohol abuse in
polio survivors. We need respect as patients and as people from the medical
community; we need medical professionals to learn from survivors who have
tried things that work and to look at alternative self-help approaches. We
need to increase disability civil rights awareness.

Identifiers said we need better health care service which does not exclude
pre-existing disease, does purchase needed equipment, and controls increasing
costs of medication and insurance. There is a definite need for personal
assistance services or attendant care. We need better bracing, both for backs
and for legs. We need better communication between primary care physicians
and the post-polio specialists. We need to educate family, friends, and
co-workers that we may not be able to perform the same duties with the same
vigor.  Lastly, we need to remain as independent as possible for as long as

Conflicts Over Terminology

One of the real needs I see is the need to agree on terminology. A lot of the
conflict between physicians and polio survivors involves terminology. They go
to a doctor and the doctor will say, "You don't have it," and then from
talking to people in the support group, they think they have it. I think part
of the problem is that there is real misconception as to what the "it" is. My
hope is that the medical profession has started to agree, and when they do
agree on definitions, then we can transfer the knowledge to polio survivors.

When definitions come up in our group in St. Louis, someone will say to a
physician, "How many people who come to you have post-polio syndrome?" The
physician will say, "About 70%, but I'll treat you anyway!" I think that's
another way of looking at it. If labeling your disease is important, then you
wait for his diagnosis of post-polio syndrome and treatment. On the other
hand, if you have a pain and it's not post-polio syndrome, he's going to
treat you anyway.

I will just mention why that is important. In a clinic where there was a
change of physicians, nine out of ten people who went back for their annual
check-up were told that they didn't have post-polio syndrome when the
previous physician had told them that they did. That obviously causes some
real problems.  We have made some gains.

At one of the first conferences that I went to several years ago, I went out
for a coffee break and the next speaker was out reading the newspaper. After
the coffee break he started his talk, and basically what he said was the
opposite of what the previous speaker had said; but he didn't even know about
this because he hadn't been listening. So there are some communication
problems among professionals. One time I sat next to a physician who was a
polio survivor and while another doctor was listing information, he leaned
over and said, Where are his resources or where are his references or where
is the peer review? At that time, there weren't a lot of them. Now when you
listen to Dr. Maynard, for example, he can cite references; there is a
greater body of knowledge. We are increasing that body of knowledge.


Concerns of the Stroke Community

Blatt: When Margaret Campbell asked me to talk today about the concerns of
the stroke community, my very first thought was that I would like to open a
door and bring stroke out of the closet. Stroke is one of the most overlooked
disabilities in this country today. I have now learned that post-polio
syndrome comes right along with it. Stroke is the third cause of death in
this country behind heart disease and cancer. It is the number one cause of
adult disability. Yet most people know very little about it. About 30 years
ago, both my grandparents, within a year of each other, had strokes. At the
time, I was living in the Midwest and they lived back East. About all I ever
heard was that my grandmother was in a nursing home and had some trouble
talking and that my grandfather had hardening of the arteries. I am sorry to
say that in many ways, knowledge is not a lot greater today for the general
public in terms of understanding stroke.  When people have heart disease or
heart attacks, they often are able to have by-pass surgery. People with
cancer many times have the option of chemotherapy, of radiation, or possibly

However, as we have learned over the last day and a half, when a stroke
strikes -- that's a word that is used very often: our brochure pictures it as
a sort of lightning bolt -- in that one second, life is changed, not just for
the stroke survivor but for the family as well. My mother had Alzheimer's
disease, and I was very involved in the Alzheimer's Board for about ten
years. I worked for the Stroke Association probably for two or three months
before one day it dawned on me that my father had died of a stroke. The
difference is he died from a stroke, and the people in this room today are
living with a stroke.

Some Immediate Needs

Wanting more research is good; however, we need to think about causes and
cures. But we have to live today, and anything that is a barrier to a polio
survivor living right now is something that we need to address. If you are
involved with the ADA [Americans with Disabilities Act], you know there are
still architectural barriers. We have the law, but it's certainly not
completely enforced, and I think that's very important.

There are attitudinal barriers that need to be addressed.  Access to
equipment -- I already mentioned that. As we age, some of the other issues --
attitudinal, architectural -- are not just polio problems; they're related to
all disabilities. As polio survivors we need to form coalitions with our
other colleagues with disabilities to address some of those issues. We have a
long history and we have some experience in doing so.

Finally, the post-polio movement has been a consumer-driven movement, a
grass-roots movement. Polio survivors should all be involved. I am so glad
that we're involved in this meeting and that polio survivors had a lot of
input on this conference. If you polio survivors out there haven't gotten
involved, your thoughts and your feelings are valid and they're very
important and we need to hear from you, so that we can continue to address
the needs of polio survivors for the future. Thank you.

Sudden Role Reversals

Many life style changes occur. Things unfortunately don't go back to normal.
One of the things that happens is role reversal. Suddenly the spouse is
thrust into the role of doing not only their own duties, but also those of
the stroke survivor; maybe they're dealing with finances that they know
nothing about, they're doing the laundry, they're doing dishes, they're
cleaning the house, all those kinds of things that they're not used to. There
is a lot of stress involved.

Adult children suddenly become parents to their parents and make major
decisions. For a lot of people, there are physical disabilities. They're in a
wheelchair, they can't drive, they need a walker. People have speech problems
and maybe they cannot communicate; they have difficulty understanding. If the
stroke survivor was the breadwinner, there is immediate loss of income at a
time when you need that income. You have to pay hospital bills, possibly you
need to pay for a skilled nursing facility, for help in the home, for an
electric bed, for wheelchairs; the list goes on and on. There is loss of a
job, there is loss of sexual identity, loss of desirability. At a time when
they need them most, there is a loss of friends.  People want to go out to
their favorite restaurant and it's not handicapped accessible; so all of a
sudden you don't get called to join them. When people have speech problems,
in many cases the visitor, the friend, doesn't know what to do. Should I
finish the sentence, should I sit and wait? And if you as family members or
stroke survivors don't give them guidelines, they become uncomfortable, and
don't come around any more.

Changes for the 90s
I was asked to talk about what changes I'd like to see in the 90s, in the
area of stroke. If somebody in this audience would promise me another job,
I'd like to be out of a job [as director of the Stroke Association of
Southern California].  That's what I would like to see. Obviously, this
starts with education. People need to know what are the risk factors for
stroke. How can you change your life style so you won't have a stroke? What
are the signals? We all know that if you have chest pains, supposedly you are
having a heart attack and you need to call 911. People don't know what the
signals for a stroke are.

The public also needs to be educated about the stroke survivor. When they see
John in the wheelchair, that's still John; or Mary who maybe can't speak very
well is still Mary.  They don't need to be scared when they see someone with
a stroke. Dealing with Alzheimer's for years, I had a very hard time
understanding why stroke is in the closet. I think part of it has to do with
the fact that it affects the brain. My mother with Alzheimer's didn't know
she had problems. We as a family knew. The stroke survivor has been affected
and it scares other people, to think that something can happen to their brain
that is not going to allow them to walk or to speak. So people need to be

If you check the papers every day, you see many references to support groups.
You could probably find a support group for somebody with purple hair and
three toes on the left foot. But there is a reason for this. Support groups
provide a very important resource. They put you in a situation with other
people who have the same problem, who can share, who understand what you are
going through, and can hopefully offer positive suggestions. This really
helps with the coping skills that Dr. Kemp was talking about. I would like to
see so many support groups that the stroke survivor and the caregiver as well
have the option of attending one that is very close to them.

We need all kinds of support groups. There is such a need for caregiver
support groups. We need support groups for adult children, for teenage
children, for young children, for single stroke patients, who have different
needs than somebody who is married and has someone to drive them around. As
Joan [Headley] was saying, there is a big need, especially in the Los Angeles
area, for groups for our culturally diverse population. And we don't have

The Need for Respite Care

The other need is in the area of respite care. As we discussed in the
caregiver workshop yesterday, caregivers are no good to the persons they love
if they end up sick. They have to have a break. The Alzheimer's Association
has a book called The Thirty-Six Hour Day. I think that applies in many cases
to stroke families. It is a very long day and you need a break.  We have some
people here today from the Long Beach Stroke Activity Center and from the
Organization for After Stroke Resources that have excellent stroke activity
centers. I wish I could clone them and put them all over town. There are
adult day care centers. But there is a great need for respite care. I would
love to have somebody give us a million dollars so we could give people
scholarships to pay for help in their home or to have people go to day care

The last thing is the area of community resources. We're trying this year to
get a grant to put a book together on community resources. The high schools,
the adult programs, junior colleges, Y's, senior centers have programs; they
have adaptive PE, adaptive swimming, those kinds of things that are out there
that people need to know about. We have each year what we call a Walk 'N'
Wheel-a-thon, which is our big fund raiser. In association with this, out on
the baseball field, we have an educational expo where we have experts in
stroke rehab. We have representatives from product companies, from hospitals,
from home health agencies; more importantly, from community resources so you
can find out what is available.

We have a big challenge as we try to fulfill these needs that are out there
in the community. Hopefully all of us can work together, open that door, and
let stroke out of the closet.



Dr. Margaret Campbell: Thank you, one and all. Beautifully done. I'm going to
ask everyone on the panel to respond to a three-part question and then open
it up to all of you. The parts have to do with what models we are going to
use to implement all that we have been talking about. How do those models
affect research and service delivery? First, what models are available that
will help us make this shift in terms of our resources and in terms of our
thinking in both medicine and medical rehabilitation, and perhaps disability
and rehabilitation in general?

Second, what research needs to be done? I'm particularly struck by June
Kailes' appeal yesterday, and also Joan Headley's. We need longitudinal
studies, which are elegant and which everyone loves to do. But we also need
the research now.  As June said, we need to make use of all the anecdotal
information out there that we already know. How can we shorten the interval
of time in the research process?

The third part of my question asks: How can we meet some of the service needs
of both polio and stroke survivors more effectively; needs for in-home health
services, for respite care, and for long-term care?

In summary: How can we work together more effectively, under what kind of
structure, to meet the needs for better models, for better research that
doesn't take so long, and for better service? What kinds of cooperative
arrangements do we need among disability associations, academic researchers,
and clinicians? What role can the government play to bring these groups
together more effectively?

Brummel-Smith: I don't think we need new models. I think we have the models.
The model I like is that we must get away from the idea that the physician
knows best. A team of people working together knows best. As Maria Huxley
says, "Nobody knows best; we all know differently." It's a misconception of
reality that the physician knows best. We need to realize that groups of
people working together, including the consumer or survivor, will come up
with ideas that would never have been generated by a physician alone.

We need to use survivors' experience to guide where the research should go.
For instance, why do so many walkers end up inside closets? It's because
nobody ever really asked the people for whom these walkers were prescribed,
"Do they work for you or not?" The reason people love shopping carts is that
they work. So why not ask, "How does this shopping cart work differently than
the way a walker works?"

The third question, about what we can do more effectively, is the hardest
one. I'm impressed by one thing that June Kailes said yesterday. That is, a
small group of people created the Americans with Disabilities Act. This was
not 30,000 people in the streets. This was a relatively small group of people
who said, We have a vision of what we want and what we think is right, and
we're willing to act on it until it finally happens. You have no idea how
your politicians are affected by receiving ten letters, much less 300. You
hold tremendous power. If you let people know in specific, friendly terms,
they respond much better. Say, Here's what I need, and here's what I want you
to do. Don't get into blaming, because that turns people's ears off. Educate
yourself, talk to other people, and let politicians know about where and how
you would like to see your health care dollars spent.

Headley: One thing that I can add, from a polio point of view, has to do with
rehabilitation and health care and our needs for the future. Part of what we
do is to work with people who use ventilators. At one conference I moderated
a panel where the audience was made up of respiratory therapists and
trainers. The first person to speak on the panel had been on a ventilator for
several years and through rehabilitation was just taken off the ventilator.
The moment she said that she was taken off a ventilator, there was
spontaneous applause.

The next person was a child on the ventilator for quite a period of time.
When they finally diagnosed her disease, they took her off the ventilator
during the day. Again, there was spontaneous applause. A polio survivor who
had used an iron lung told how she got out of it. They applauded.

The next speaker was a woman with muscular dystrophy.  She couldn't move her
hands. She had a tracheostomy, and when she said she used the ventilator 24
hours a day, there obviously was no room for applause.

My point concerns the perception of medical people as to what is normal and
what I need to use and what I need in order to have a good life. I think
sometimes medical people's perception is different. When we start talking
about managed care and the quality of life, where do we draw the line, and
who is involved and who is not involved in drawing the line?  I think that is
an important issue.

Campbell: May I just ask you specifically, how would Rancho Los Amigos
Medical Center collaborate with your association to do some of the kinds of
research that is needed? And how could we do that more effectively? You gave
a whole list of needs, the kind of research and services we need. How can we
better bring that about? And similarly, how do you bring about the kind of
partnership between survivors and providers that you advocate?

Headley: Fred, do you have anything that you'd like comment on or add?

Dr. Frederick Maynard: The one thought I have is that when the research
community has developed some preliminary ideas, they should reach out to
organizations such as yours to include them in a discussion of those ideas,
then proceed with those that have practical value to the consumer. I think
that's the whole idea of what has been called the PAR (Participatory Action
Research) approach. But there is no reason why you can't approach a
disability group and specifically invite them or a small group of their
members to participate with you in the design.

Headley: Which is what I assumed that you had already done with this

Campbell: With this conference, yes. We very much did reach out to involve
consumers. However, as Dr. Brummel-Smith pointed out, we did not do it
originally with this study. In the future, with the new studies we are
proposing, we have incorporated a participatory action approach to research
design and dissemination. But I was also thinking of joining together to
raise money for research, and to determine the kinds of research that get
funded. The idea is to go beyond the advisory role to include consumers in
the actual decision-making process, as we did for the planning of this
conference . . . . Susan, your turn.

Blatt: Well, I'm sort of a do-gooder; I'm not a researcher.  But I was very
much impressed by the planning committee for this conference, because it did
just what we're talking about.  It had polio survivors, it had stroke
survivors, and Margaret [Campbell] made sure that their input was considered
equally as important as the professionals'. As a non-profit organization, one
of the needs that the Stroke Association must address is educating the
professional. It's very hard because people don't remember seeing our
brochures. It is a constant effort to let professionals know that we exist,
that there are people who need help, that there are ways to help them.

Campbell: It's time for you all to ask your questions . . .  This is for you,
Susan Blatt. "What can clinicians do to encourage reluctant patients to
become involved in support groups? Many of my patients with recent onset CVA
are too inhibited or afraid to go."

Blatt: That happens very often. I know many people in my parents' generation
don't feel comfortable going to groups.  They feel that you shouldn't air
your dirty laundry, that you're supposed to cope by yourself. It helps if a
family member, perhaps an adult child, is willing to go with them. As we also
discussed in the caregiver session yesterday, culturally there are many
different types of views when it comes to this. And so, very often we do have
to work at getting the person there.  We are trying to develop a program of
home hospital visitation. If a doctor or family member feels that it would be
helpful, a home visit would be made.  Maybe the home visitor can encourage
the stroke survivor to come to the group. It's also very important that
people be encouraged to go two, three, maybe even four times, not to give up
on the first try.

Campbell: "How many doctors who came to the conference are outside the field
of general medicine?" I'm not sure what that means, but let's just start with
the first part. At the presenter level, we had Dr. Brummel-Smith, Dr.
Maynard, Dr.  Siebens, Dr. Perry; Dr. Namerow yesterday gave a workshop on
pain, Dr. Ettinger gave a workshop on osteoporosis, Dr.  Mosqueda gave a
workshop on how to get better health care. Do we have any physicians in the
audience? We have Dr. Fay Anderson, Dr. Barres, and this gentleman here; so a
handful.  A very strategic question. We worked hard to get doctors to attend.
A related question: "Why don't we have doctors whose specialty is stroke or
polio survivorship? Is it not as economically rewarding?"

Brummel-Smith: I think we do have some doctors who deal with stroke and polio
as part of their specialty, that is, physical medicine and rehabilitation
doctors. I think, though, the answer is somewhat economic. Just as an
example, I know of a class of doctors who can make $5,000 in 15 minutes. They
are called ophthalmologists and they do cataract surgery. Why should such a
person's skill and expertise be paid at that rate, when a general physician
who spends an hour talking to a patient about coping, or an hour doing an
intensive muscular evaluation, would be paid maybe $100? It's wrong. That's
why the national health plan has to pass.

Managed care systems basically keep the medical system the same; they just
try to change the way that we pay and distribute it. I personally think
physicians should not be paid according to what it is they do, but how
they're doing it. If you provide good medical care, which includes attention
to functional issues, biopsycho-social issues, you ought to be paid according
to how much time you spent. Should you be paid more than a mechanic? Yes, I
think it's perfectly reasonable for a physician to get more than the $60 an
hour that my mechanic gets. But the problem is that it needs to be
distributed in a fair and equitable way. It's not happening in our present

Campbell: I might just add that in Sweden, doctors are paid by the hour, on
an average of about 42 hours a week. Next question: "Have you considered
whether any polio survivors that you are in touch with are interested in
holistic medicine? Do you have any ideas for research needed in that area?"
Headley: Many polio survivors who have gone to traditional clinics have felt
that their needs have not been met. A lot of polio survivors are using
alternative therapies and are also looking into the holistic approach. I get
many calls and many letters from polio survivors asking me to tell others
what has worked for them. That presents some problems, if it's not in the
medical literature. It's touchy at times. I put such letters in a file and
wait to hear from others. If you hear of an alternative therapy and we
haven't published anything about it, I probably have some information about
the therapy, but have judged that it's something I cannot publish at the

Brummel-Smith: I want to expand on the last question, too.  There are other
physicians who know about these problems.  Often it's a personal desire and
expertise and commitment; Dr.  Perry, for instance. And sometimes it's
actually within the realm of the physician's specialty; you must learn about
rehabilitation and aging, for instance, in geriatrics. Our goal in medical
training is to make sure that all primary care physicians -- internists and
family physicians -- will receive training in geriatrics and rehabilitation.

As to the second point -- what one person can do in terms of writing -- I'll
give you a personal example. When I was asked to serve on the board of
physicians that wrote the first certification exam for geriatrics, I had
written and spoken on geriatric rehabilitation and so I naturally had this
desire to put rehabilitation questions in the test. The amazing thing was
that hardly anybody who had taken geriatric fellowships got the answers
right, and neither did the internists and family physicians who had taken
care of old people for years.  The response among the entire geriatric
education community was, We need to be doing a lot more in rehabilitation
education. Just because one person put some questions on a test, it was
accepted as being "what you should know." And now this whole system of belief
has been created, that you have to provide rehabilitation training as part of
your geriatrics fellowship. So you can do a lot.
Second, consider the terms "holistic" and "alternative" medicine. What we
think of as "traditional" medicine means American Western medicine for the
last 120 years. Less than 200 years ago blood-letting was common. Traditional
medicine is actually acupuncture and massage, which have been available for
over 5,000 years. Hence, modern Western medicine is alternative.

People usually use healers other than medical doctors because they feel they
need them.

Ian McWhinney, the head of family practice in Canada, said, "If medicine does
not provide society what it wants, society will go about getting it some
other way." And what has happened is that society has said, Look, I've been
helped by homeopathy, for example. How come you never study it? And so now
the National Institutes of Health has created a special sub-institute on
"alternative medicine." They're studying it.

Why did it happen? Because consumers said, We want this studied. And I also
agree you have to be very careful, because the restrictions on trade among
those types of providers are much less stringent than on doctors. One of the
good things about restriction of trade is it keeps quack doctors from passing
out unproven potions for curing cancer. That is absolutely wrong and people
ought to be put in jail if they do that. Some of the traditional medicines
don't have such restrictions, and so we have to try to understand the
evidence that these things work. But the fact is, there is a lot of anecdotal
evidence and it's being funded to be studied more.


Concerns of the Polio Community

Maynard F (1991).  Recognizing typical coping styles of polio survivors can
improve re-rehabilitation.  American Journal of Physical Medicine and
Rehabilitation, 70:70-72.

Concerns of the Stroke Community


American Heart Association, 3550 Wilshire Blvd., Suite 500, Los Angeles, CA
90010. (213) 385-4231.

Courage Stroke Network, 3915 Golden Valley Rd., Golden Valley, MN 55422.
(800) 553-6321.

National Stroke Association, 300 E. Hampden Ave., Suite 240, Englewood, CO
80110-2654. (800) 787-6537.

Stroke Association of Southern California, 2001 S. Barrington Ave., Suite
308, Los Angeles, CA 90025. (310) 575-1699.


Josephs A (1992). Stroke: An owner's manual. Amadeus Press, P.O. Box 13011,
Long Beach, CA 90803.