RIIL Webcast No. 5
April 24, 2002
Presenters:  Peg Nosek and Carol Howland

LAUREL:  good afternoon.  This is Laurel Richards with ILRU.

We want to welcome you to our Webcast today which is going
to focus on research findings, and I want to let you know that
the presenters are Peg Nosek and Carol Howland for the Center
for Research for Women with Disabilities.

And it's a real pleasure to introduce Peg and Carol.

There is attention that some of us know about between
researchers and those of us who are either practitioners or who
are just rank and file consumers or both, many of us are both in
the independent living field where we see hundreds of
thousands of dollars going into research and we don't see real
visible evidence of the outcomes from that research.

And so we -- and we think to ourselves with a couple hundred
thousand dollars we can do an awful lot in our programs or do
an awful lot of training with that money and one of the reasons
for this series of webcasts on research was NIDRR's idea that
there needs to be a greater initiative to present to nonresearchers
research findings from the people who are actually doing the
research, and in this case, Peg and Carol and their team at
CROWD at the Baylor College of Medicine are doing extremely
pertinent research to the lives of people with disabilities,
primarily to women with disabilities, but there is a great deal of
overlap and spillage onto men as well.
So I want to without too much more pause to get right into the
presentation.

Just recognizing that this presentation is jointly sponsored by
RIIL, Research Information for Independent Living, and the
Research on and Training Center on Health and Wellness and of
course from CROWD and with support from NIDRR. So Peg
and Carol, I would like to turn it over to you right now.

PEG:  thank you very much Laurel.  It's a pleasure to work with
you on this project.

We at CROWD like to think that we're among the better ones
about letting everyone know what we're doing.

We are going to talked about health care and some of the
problems that people with disabilities have in accessing health
care.  You know, there is a lot of hurtles out there that we have
to jump over, as it were, to get the good kind of health care.

In other words, it's easy sometimes to get any kind of health
care, but to get the kind of health care that we really need and
the quality of health care that people without disabilities have
come to expect becomes something quite difficult for many
people in the disabled community.

We're going to focus today mostly on women, but what we're
going to say has a lot to do with men, in that we face many of
the same barriers, but women have some unique barriers and
we'll be discussing knows as we go along today.

So you know the problem.

I'm sure I'm speaking to the choir in terms of describing the
problem, but it really consists of several different stages.

The first and greatest challenge is in obtaining health care
coverage in the first place.

And then once you're able to get it and whether it's private or
government sponsored or a fee for service or managed care, it
doesn't matter, but it often doesn't cover your disability-related
needs and sometimes just getting in the door or up on the exam
table is a big problem.

And once you're in the door, it might be a problem to get
around, and maybe the doctor would even refuse to see you. 
We've heard many stories about that in our research.

And by the way, where are the laws that were passed to protect
us from all of these barriers?
What we at the Center for Research on Women with Disabilities
that we're going to be referring to from now on as CROWD.

And we're at the Baylor College of Medicine and we've received
a little tiny piece of those big bucks dollars that Laurel was
talking about to do some studies about the health and well-being
of women with disabilities.

And all of our studies over the last ten years, we've involved
more than 2,500 women so far.
We use personal interviews and we use survey questionnaires
and we also do some research on a big population database sets.
We're going to show with you today some of what we've
discovered.

In other words, we have listened to women in one on one
conversations and we've listened to thousands of women who
have answered our questionnaires.

So we're going to draw on that information and talk to you
about ten factors that we've identified that prevent many women
with disabilities from enjoying the benefits of quality health
care.

And we're going to group them into three different categories.

The first one is financial barriers.  The second one -- is second
group will be environmental inaccessibility, and the third group
will be problems with the health care system.

Then we're going to end with some recommendations about
what consumers can do about these problems and what
independent living centers can do about these problems, and I
think I misspoke myself.

The order is financial first and then problems with the health
care system and finally environmental inaccessibility.

So I'll hand it over to Carol now and Carol is going to talk about
some of the financial barriers.

CAROL:  first I'd also want to mention that we are researchers
here at CROWD, but first and foremost, we are consumers of
health care ourselves with chronic conditions and disabilities
and many of the problems that many of you have encountered,
we've had the same firsthand experiences and for those of you
that are going to be sending in questions, if you've also found
many trick that have worked well for you, we'd sure like to hear
them, too.

The first financial barrier which is really a stronger barrier for
women with disabilities and men with disabilities is
unemployment.

And really that is the most common employment status for
women with disabilities is to be unemployed.

A quarter of women with severe disabilities are employed full
time or part time compared to three-quarters of women without
disabilities.

Then compared to both men with disabilities and women
without disabilities, women are less likely to be in the
workforce if they have disabilities.

If they are, they earn less income.

They are less likely to have more than a high school education
which could give them a better paying job and they're less likely
to be eligible for vocational rehabilitation services.

If they do resolve vocational rehabilitation, then they are less
likely than men to become employed or even to have
employment as their VR goal.

So the main source of health insurance for most people, which
is employment, is not available to the majority of women with
severe disability.

Now, Peg will talk about another barrier.

PEG:  women with disabilities are significantly more likely to
be single.  You know, you wouldn't think that your marital
status would have anything to do with your health care, but it
really does, because many women depend on their husbands or
their partner's insurance through his or her workplace, and that's
how they get insurance and that's also how they get retirement
benefits.

If you're not married, you don't have the option of getting it
from anyone else.  You have to get it through your own efforts
and your own employment.

And as we know, being employed gives you oftentimes entrance
into better quality health insurance than if you're not employed.

Now, this business about being single -- you might be thinking,
oh, Peg, that ended a long time ago.  It's true, it's a fact and we
discovered it -- not the first to discover it, but we documented
from our survey that involved 1,000 women, we found that 48
percent of women -- this is also confirmed by the data from the
National Health Interview Survey.

We analyzed data there from 1994 to 1995 on the disability
panel and we got numbers that were very consistent with ours.
So the general consensus is that just under 50 percent of women
with more severe functional limitations were currently married.
More than 50 percent of women with disabilities who tend to
have more functional limitations are not married.

Now, that compared to 63 percent of women with no
limitations.

So if you can think the combined effect of being unemployed
and single makes access to private health insurance very
difficult.  Now we'll turn it over to Carol.

CAROL:  the third financial barrier is low income, which also
can be related both to being single and to unemployment and I
think we should title our talk maybe gaining health care access
through sex, because if I go like Peg was saying.  Anyway, I
didn't mean that.

LAUREL:  there goes the program.

CAROL:  you're going to have to start bleeping any time now.
Well, the same 1994 and 1995 National Health Interview
Survey found that women with functional limitations had
significantly lower earnings than women with no limitations,
and the more limitations she had, the more likely she was to live
in a household with a monthly income less than 1,000 dollars.
This was true of 39 percent of women with three or more
limitations, compared to only 16 percent with no limitations.

29 percent of women with limitations are living in households
below the poverty level and this is compared to only 9 percent
to women with no limitations living below the poverty level.
Given that, it's surprising that 56 percent, more than half of
women with three or more limitations got no income from
Social Security Disability Insurance or from Supplemental
Security Insurance or from any other government source.
So we have low income, unemployed, single and not even
getting SSDI or SSI, just to compound things.


PEG: Laurel, do you want to field any questions now?

LAUREL:  our question asker is Rachel Kosoy.  Rachel, do you
have any that have come in?  Because I've got one.

RACHEL:  I have one that came in that relates to what you've
talked about so far which refers to back to a detail.  Why are
women less likely than men to be eligible for vocational
rehabilitation services?

LAUREL:  good question.

PEG:  that hurts.  Shall I get on my soap box now or afterwards?

LAUREL:  oh, please.

PEG:  as you all know, I tend to levitate when I get up tight
about something and I'm real up tight about that.
It really is a harbinger of really outdated attitudes, this is
assumption that women with disabilities shouldn't work,
shouldn't have families, shouldn't be out and about, you know,
they should be at home where somebody can take care of them.
And the statistics show it.

The other reason, I think, is that until very recently, women just
didn't have access to the same kinds of vocationally oriented
services that men have always had as a matter of course, but I
think that really is just a reflection of the really sexist attitudes
that permeate society and that it is something we need to
overcome.

So we're doing our very, very best to train women with
disabilities to be assertive all the way through their education
and training and preparation for a career, you know, not just to
be settled with a plan that merely will allow them to achieve
solely living on their own.

If they want to have a family, if they want to have a career, it's
my opinion that vocational rehabilitation services should be
equally available to them as anyone else.

RACHEL: Peg, this is Rachel.  So are you saying then that
women are not actually applying for the services, or that they
are applying -- they want to get the services, but they're finding
that they are then not deemed eligible?

PEG:  well, I think it's a combination of those two factors.
There is simply not enough women coming up through the
pipes, as it were, to go into career paths that would be towards
an MBA in business or something or toward an advanced
degree or even towards a professional training curriculum of
some sort through a community college.

I mean, the women are just now starting to increase in their
numbers who are demanding that kind of training.  So, yes, it's a
problem -- a pipeline problem that women are just really getting
into that groove, and I would say 75 percent an attitude
problem.

As we all know, there are some rehabilitation counselors who
are very cooperative and they listen to the desires of their
clients, but there are others that are still pretty much dictating to
their clients on where they should go, where they would fit best,
where they would be most likely to succeed, and the statistics
show that more often than not, women are assigned an outcome
of a homemaker as opposed to paid employment type position.

CAROL:  and also many women are still trained for traditional
careers that may be physically demanding like nursing or
teaching small children, and even if these schools or hospitals
allow them to practice those jobs, they find that they're too
physically demanding and they're not able to and they end up
being a homemaker even though they may not actually be
providing the physical home making services in the home.

LAUREL:  I've got -- Peg and Carol -- just a real quick question
regarding SSDI and SSI.  Do you all have -- are there any
indicators as to why women are receiving it in such lower -- so
many fewer women are receiving it than men?

PEG:  yes, because at a population level, women with
disabilities are simply not tied in to the work credit that you
would get when you're working.

You know, you can't get SSDI until you've accumulated a
certain number of credits.  And because women with disabilities
are so out of the workforce, that they don't even have the chance
to build up those credits, and as I just mentioned, because they
are more likely to be single than married, then they can't cash in
on their husbands social security either.  So those are the two
primary reasons.

LAUREL:  thank you.

RACHEL:  okay, this is Rachel.  The other question that I have
is very interesting, but I'm going to hold it for a while because I
don't think you guys have gotten to the topic yet.  So I'm going
to hand it back to you.

PEG:  all right, we're going to start now talking about problems
with health insurance, and I'm sure we can all recite a litany of
that.

Now, the first issue, and we call this the fourth of our ten
barriers to accessing quality health care, is getting insurance in
the first place.

Because of high unemployment, because of poverty, because of
being single, and often because many women with disabilities,
particularly older ones, are living alone, these all -- all these
factors contribute to not being able to get any access to health
care at all that would be paid for by a third party.

So as we mentioned, they don't have the opportunity to earn
social security credits in order to get the benefits of social
security payments in many cases or to even be eligible for
medicare.

Now if you are familiar at all with healthy people 2010, that
came out a couple of years ago.  There was indicators of a
healthy nation and one of them indicated with the number of
people who are receiving health insurance and benefitting from
it.

And under some objectives in that particular goal about health
insurance, part of them relates specifically to people with
disabilities.

Now, when we analyze our data from the National Health
Interview Survey, which is a whole nationwide sample, we
found that we are really very far from achieving equity with the
general population.

In 1984, one out of every five noninstitutionalized adults did not
have any insurance.  They were completely uninsured.

Now, this rate increases when you talk about people of Hispanic
origin or other races.  It's closer there to about 50 percent.
That was in 1984.

Now, we did analysis of the 1994 census on the national level
and we found that private health insurance was available to only
47 percent of women with three or more functional limitations.
And that compares to 75 percent of women with no limitations.
So you would assume that if a woman doesn't have access to
private health coverage, we should have access through
medicaid or medicare.

On the contrary, of those who don't have any insurance at all,
any private insurance, only 34 percent received medicare or
medicaid.

So it's not safe to assume that just because the woman doesn't
have access to private health care, that she'll be picked up by a
government source because that certainly is not a safe
assumption.

Now, lack of financial resources forces many women with
disabilities to forego or delay getting health care until the
problem reaches crisis proportions and requires emergency
intervention.

There are many people who are covered one way or the other,
and it may be Medicaid, it may be a managed care plan, but the
plan or whatever it is, will not allow them to go see a specialist
or will not allow them to purchase any piece of equipment.

So there are many times when their disability-related needs are
not covered by the insurance coverage and they have to either
go without or wait until it becomes a crisis and then become a
patient in an emergency room or something of that nature.
Having to pay for it themselves is very, very difficult.

I think in almost all cases it is out of the question because by
definition these women generally do not have large sources of
income.  So there are problems when you're dealing with
Medicare or Medicaid.

There are even some physicians who refuse to treat patients who
have only Medicare or Medicaid as their health insurance
coverage.

Carol is going to talk a little bit more about this problem.

CAROL: Peg mentioned that there few women with disabilities
have private insurance and both simulated and national studies
that have been done have found that people with disabilities are
still turned down if they try to get an individual policy if they
have any chronic condition or disability, although some will
simply cover everything except the body parts that are involved
in the chronic condition or disability.

For some of us, I think maybe they might cover my eyebrows
and my ears if I tried to get such a policy, and nothing else
would be covered.  So I don't know why I would need the
insurance in the first place.

If the woman with the disability does get insurance from
whatever source, often essential disability-related services,
equipment, supplies and medications are denied or not covered.
These services that are needed to minimize the effects of the
disability or the functional limitations are very often denied
under managed care, but also even under fee for service, often
these services are very under reimbursed if they're paid at all.

Or if the services or equipment are approved, it's often for a
very limited time, and it's very ironic that, say, if you have
Cerebral Palsy, you cannot get coverage for physical therapy,
even though maybe you're getting weaker over the years or with
aging or having more contractures and functional limitations,
but if the same person with Cerebral Palsy goes out and breaks
her leg, she can then get physical therapy.

A lot of astute physical therapists are going to say we're going to
take the opportunity to take care of all of the other functional
problems that she could not get covered otherwise.  So it's pretty
ironic.

We all have to go out there and get injured if we want to get
some -- I'm not serious.  It's just the irony of it.

And most often the kinds of services most often denied are
physical therapy, occupational therapy, speech therapy and then
when you just can't stand it anymore, and going crazy, you can't
get mental health care either.

Just to give you an example from an interview study that was
done here at CROWD with 16 women with disabilities who
were in managed care, the doctor had prescribed hydrotherapy
for her physical therapy, but the plan would only approve some
very inappropriate rigorous exercise that was really
contraindicated for her.

So often the plan will approve some form of the service other
the therapy, but not the type that would be appropriate for the
person with the disability because the person approving the care
doesn't -- they don't really understand what's needed.

Also a class of equipment may be approved.  For example, a
wheelchair could be approved, but not the type that's needed or
prescribed.  So if a person needs a power chair or a light weight
manual chair, they may not be able to get that covered under the
plan.

In a local study that we did here in the Houston area of -- this is
men and women, not just women, half and half -- but with
severe enough disability requiring daily personal assistant
services, we found that 42 percent had no coverage of medical
equipment and supplies.

67 percent had no dental coverage, and teeth are connected to
the rest of your body, so, you know, you can end up with all
kinds of infections and problems from neglect of dental care
though that's not recognized.  That's a separate body part.

And a third had to pay full price for medications.

Now, this was in the early to mid 90's, and it's interesting that
the largest proportion of these people were not in a fee for
service individual private kind of plan.

They were either on Medicare, Medicaid or -- I'm sorry -- they
weren't in managed care.

They weren't even getting what they needed for fee for service
or in Medicare or Medicaid and we're seeing studies where it
can be worse under managed care.

Also, many people with disabilities require orphan drugs to
keep their condition managed or first generation drugs that are
just not covered by many insurance plans, and many of those
will only cover a low cost formulary drug in a certain category,
and anyone who has had experience with formularies knows
that's the drug that didn't work yesterday and still won't work
today and so if you want to get the drug that does work, you're
either paying a lot more out of pocket or you just have to go out
and get it on your own.

But I think we've all found that these different drugs in the same
category, they do not pharmacologically act in the same way.
But the drug plans in the managed care plans will still try to tell
people you have to take this drug or another one.

In a 1996 study of 930 persons with Multiple Sclerosis, and
three-quarters of them were women, we found that a higher
proportion of those in the HMO, compared to the fee for
service, had doctors advise them that they did not meet the
medical criteria for taking a new expensive drug, even though
this drug was the drug of choice and the most effective drug for
most people with MS.

And this was interferon.  So we know that obviously they had
set the bar up pretty high for who they were going to let take the
drug although most people with MS could have benefitted from
that.

Now, I will turn it over to Peg who will be talking about
specialists.

PEG:  oh, yes, don't we all love our specialists.

You know, it's a fact that women with disabilities are more
likely to be seeing specialists as their source of usual care, or
rather to say their usual source of care.

In other words, when they have a cold or they see (inaudible), or
they want some other kind of ordinary health care, they're going
to the specialists for those services.  Now, there are a lot of
reasons for that.

One is that until very, very recently, there just haven't been any
general practitioners or internists who really understand enough
about disabilities to be able to help the woman with all of her
needs, including her disability-related needs.

And many times, as I mentioned before, they may even refuse to
see them and refer them to a specialist for all of their ordinary
care.

But this is a whole notion of going to a specialist for primary
care is one that's not received very much -- it has really not been
well studied.

I'm anxious for the day when one of the funding agencies will
come out with a request for applications on this topic.

Because it could be a very serious problem.

I mean, when you're going to your rehabilitation physician or
your neurologist, or your rhuemetologist or pulmonologist for
depression or have a welcome exam, I'm sorry, but those types
usually cannot provide it.

It depends on how health specific your need is, but again, it
really is important to have a primary care physician, either a GP,
general practitioner, an internist or OB/GYN to do those kinds
of examinations and screening tests, et cetera, so that you are
getting the same kinds of well woman care that every other
woman has come to expect.

Now, another problem with going to see specialists is that the
health insurance plans, especially the managed care plans, now
put many restrictions on referrals to specialists, and there by
force women to go to primary care physicians who may or may
not be able to help them with a very specific disability-related
need.

You know, it's really a bit much to ask for a primary care
physician to be up on all the current research and guidelines for
practice for people with disabilities and the millions of disabling
conditions.

And other side, it's really not fair to expect a specialist to be
able to keep up all the current literature and new drugs and new
treatment guidelines for regular problems that every one needs
to go see a doctor for.

So it's really not a good situation all the way around, but we do
know that specialists are extremely valuable when you have a
rare condition or a condition that needs some very focused
treatment of a very specific nature.

Because in general, physicians wouldn't know what to
recommend for you.  And Carol is going to talk a little bit more
about that.

CAROL:  well, also when you're talking about specialists, you
have sub specials, too, and I think that's one of the problems
with doctor lists is that when someone gets referred to a
specialist, let's say they need a urologist, well that urologist may
not be up on the latest treatments or know how to deal with
someone who has MS-related neurological urology problems,
for instance, that the specialists tend to specialize them zest and
I think that that's not recognized.

So you can't see the specialist, who do you get to see?

A primary care provider who peg almost mentioned is probably
not going to know everything because nobody knows
everything, not even me.  (Laughter)

CAROL:  anyway, you all know that there are different fields
and you don't know everything about your field.

So the issue here is being able to go to a knowledgeable primary
care provider, and that's where the quality issue comes in.  We
have found in our studies that this is particularly true for women
when you talk about reproductive health.

We found that few women in our national study believed that
their doctor considered their disability when recommending a
contraceptive method.  And doctors may not receive
information in medical training about contra indications to
certain types of contraceptives because of the chronic condition
or disability.

To give you an example, IUD's (intrauterine device) are not
recommended to women for spinal cord injuries or conditions
that cause excess bleeding or bleeding disorders.

Anyway, women with disabilities that we interviewed revealed
many, many negative experiences that they had with doctor's
attitudes, assuming that they were not sexually active so not
giving them any counseling on things like contraception or
screening for sexually transmitted diseases.

Sometimes they assumed that they shouldn't get pregnant and if
the woman did get pregnant, often they would advise them to
terminate the pregnancy, so there was a lack of knowledge
there. And often a hysterectomy was recommended as a first
form of contraception.

Often the women themselves were so frustrated to having
manage things like men's tracing that she was the one that
brought up hysterectomy because she couldn't think of anything
else to do.

In a study by co-workers, internists and gynecologist that were
in training, these were resident physicians that were found to
have inadequate preparation for handling pregnancy related
health problems in women can spinal cord injury.

And now I will turn you back to Peg who is going to talk about
some environmental type of issues.

PEG:  all right, that's our next category, but let me ask Rachel
first, would you prefer that we stop here and take a few
questions?

RACHEL:  well, I have -- I'll throw in one question/comment
which might actually lead you in to this next section.  And it
comes from a woman who asks how about the issue of needing
personal assistants to undress, dress, and be transferred?  This
kind of assistance that might be necessary at a medical
appointment.

And she goes on to say that often it's hard to get a personal
assistant to accompany you to a medical visit because you don't
enough service hours to cover medical appointments and she
says that she's found that the medical staff is actually very inept
as providing this type of assistance, and therefore, what has
happened to her is she has needed to postpone appointments a
number of times.

PEG:  okay, that's a very good question.

You know, it's my opinion that the physician's office has the
obligation to meet all of your needs, and if you can alert them to
that before coming, I think that would help.

In my younger days, when I was a bit more rebellious shall we
say, I used to show up alone at all my doctor's appointments and
get the vi care just pleasure out of seeing them squirm.  I don't
do that very much anymore.

CAROL:  (Inaudible).

PEG: Carol!  My situation is even more complicated now
because as of last year I've been using a ventilator with a
tracheotomy.  That does lead us into the environmental
inaccessibility issues.

So maybe we'll go ahead now and finish up our last point and
then we can entertain some more questions.
Is that okay?

RACHEL:  that sounds like a good idea much

PEG:  okay, great.

Well, the next barrier, barrier no. 8 is low compliance with the
Americans with Disabilities Act. Yes, where is the ADA when
we need it, you know?

It's really a matter of compliance because the law is out there.
The law says and this applies to physicians specifically that they
cannot deny services, they cannot give unequal treatment and
they cannot give separate treatment to women with disabilities
solely because of their disability.

You know, it's one thing to give a referral to go see a specialist,
but it's quite another to say, well, I can't see you.  Like if you go
to an ob/gyn for an exam and they say we can't handle you here.
You need to go to the rehab center.

Well, not too many rehab centers offer those kind of services.
So it's not appropriate for them to refuse to see you.

You know, when we went into -- when we examined the data
from our national survey that we did, we found that 30 percent
of the women with disabilities had some experience in their life
time where a doctor refused to see them solely because of their
disability.

LAUREL:  good heavens.

PEG:  the ADA specifically prohibits the following four points: 
first is eligibility criteria that would tend to screen outpatients
with disabilities.

For example, women who were blind may be unable to be in
one part of a program or whatever and therefore they cannot
access any part of services.

That's not allowed under ADA.

The second is not by modifying practices and policies and
procedures to accommodate women with disabilities.

That's required under ADA given your specialty or your normal
practice.

All of your policies and practices should not screen out women
with disabilities or give them a lesser quality treatment.

The third is not using auxiliary aids and service es or an
alternative means of communication for patients with
disabilities and then they have the out clause, unless it's an
undue burden.

But for the most part, physicians' offices are required to provide
whatever auxiliary aids, service or alternative means of
communication that a woman with a disability might need in
order to get the maximum benefit from those services as any
other woman would.

And a fourth problem is when physicians don't remove
architectural and communication barriers that are structural in
nature.

They have to make modifications, they have to modify their
facility so that it does not screen out people with disabilities.
But again, there is an escape clause, only if it's readily
achievable.  

By the way, I want to thank Ellen Grabois who was doing a
study with us during our post fellowship with us on the
accessibility of primary care physicians' offices and she actually
went around and talked to physicians and people in physicians'
offices and she got 62 offices to actually send her back to the
completed instrument and what we found is that there really is
generally very good compliance.

I mean, most physicians are located in offices that are
architecturally accessible and they are making all due efforts to
treat people with disabilities, but the place where we found the
most need was in this area of policies and practices and
auxiliary services, et cetera.

There were quite a number of violations there. Now, ADA does
not give really very specific guidelines on once you're in the
office, issues of accessibility there.

In other words, there is no requirement under ADA that all
physicians have at least one elevated exam table, a table that can
go up and down. Wouldn't that be nice if they did? But it does
not require that.

If the physician makes a policy that they can employ their staff
to come and assist a woman to get up on the table.  In which
case, it's the woman's responsibility to train the staff at that
moment on how is the very best way to lift her without injuring
her and the way that's the most comfortable and practical for her
individually.

But it's the woman's responsibility to say to the nurses or the
aides or whoever it is at that time, this is how you should lift
me. But the doctor's office has an obligation to provide that
service.

So as we can see, ADA would be a very valuable tool, we just
really need to remember that it applies to the medical profession
just as much as it applies to the local McDonald's. 

So I'll turn it over now to Carol who is going to talk about
architectural inaccessibility.

CAROL:  well, as Peg mentioned, the ADA has eliminated
many of the barriers to parking and navigating and entering
medical facilities, but there are still many, many problems once
you get inside.  And actually the ADA isn't specific enough to
cover some of these things.

As Peg mentioned in Ellen Grabois' survey of doctor's offices,
she found that only 3 percent had offices that persons with
wheelchairs could not enter.

So you could get into the offices, and into the exam rooms, but
then the average exam room in a doctor's office is only 8 by 7
which levers little room for a wheelchair plus a personal
assistant or someone coming with you plus the nurse and the
doctor.

And I guess you can't really turn that chair around.  Once you're
in there forward, you're stuck.

Also typically during an exam, the nurse or doctor may ask for a
urine sample, but often there no accessible bathroom nearby or
it's occupied.

So now you can get into the room, but you can't pee, and as Peg
mentioned if you're a woman you can't jump onto the exam
table.  But most men can, and we're wondering how they do it.
In a local survey none of the men said they couldn't get onto the
exam table, but it was the main reason that women were not
going tort required or preventative exam services.

So if there are some men that want to tell us, maybe it's the
same thing as not asking for directions.  That is a sexist
comment, but I just really had to say it.

Now, if you go to a general hospital, there are often problems
getting a room with an accessible bathroom even if the hospital
has the number of accessible bathrooms required by the ADA.
Often the rooms with the accessible bathroom is not available
when you check in or you have to wait many hours until the
nondisabled patiently currently occupying the room moves out.
So sometimes the things that are covered by the ADA are on
paper, but not actually there.

And now Peg will talk about -- we're not going to talk about
equipment inaccessibility.

All right, we are going to give some recommendations for all of
you consumers and independent living centers out there.
We've given you this big list of problems and now what do you
do about it?

And the first strategy is just to not take no for an answer.
If they say no, you just keep on asking again and again and
again.  And actually, studies have found that 60 percent of
denied insurance claims, if contested, were later approved.
And then if they're turned down for the second time, then
another half or so were approved when you reapply again.
And just keep in mind that the people reviewing your claims,
especially initially, are often nonprofessionals.

They are often persons who are unfamiliar with your chronic
condition or disability.

So a letter from your doctor explaining and giving evidence for
medical necessity is often required and sufficient for approval,
particularly if the doctor can document how the requested
procedure or equipment will save the insurer money.

That's their bottom line.

So if you can show them that nod providing it is going cost
them real money soon, but doing that cost benefit analysis and
documents that is sometimes what you need to do to get
something approved.

And as Peg has said, don't allow the doctor's office to deny your
service.

Make sure you know your ADA rights and know them.  If you
are having trouble getting past the appointment desk, ask to
speak to the supervisor because if you go high enough up and
they will try to avoid legal complications and they will have
better luck getting what you need.

Now, Peg has some advice.

PEG:  the second recommendation is to be persistent. Now, it's
very much like what Carol was just saying, don't take no for an
answer, but really there are many times when it's not an issue of
yes or no.  It's just a matter of follow up or it's a matter of
getting your appointment scheduled or it's a matter of the doctor
following up on some information that he or she said they
would be sending to you.

As we all know, the medical profession these days is horribly
over worked and expected to do twice what they used to do in
half the amount of time and it's really an impossible situation
for them, but they will oil the squeaky wheel as it is.

If you were visiting for a checkup and your physician said that
you needed to learn more about pressure releases where you can
relieve the pressure on a potential pressure ulcer on a part of
your skin, well, for someone newly disabled and maybe didn't
get the best rehab care, or didn't get any rehab carat all, which is
all too common, then you show up with that kind of a problem
and a general practitioner's office and then not really know what
to do about it.

So getting more information is important for their -- certainly
for their well-being, and then if the physician doesn't follow up
on sending the information, it really is up to the individual
consumer to literally nag until they get what they need.

So persistence is certainly a virtue.

CAROL:  and that persistence is always a challenge when you
have a 104 degree fever and you're too sick, but that's another
story.

Okay, it's very helpful to alert medical professionals to your
needs in advance.

Now, this isn't required under the ADA, but it's just helpful to
get what you need because you can't assume that they know
what you need.

They may think that they know and then it's not what you need.
So, for instance, if you're going to need assistance in dressing
and undressing and getting on the table, it's a good idea when
you make the appointment to let them know that so that they
will then be prepared to have somebody -- some extra people in
the room to help with those kinds of things.

And for example, if you simply say that you are hearing
impaired or deaf, they might hire a sign language interpreter
automatically, but what if you don't sign?  If you use another
means of communication, then it's best to let them know that.

And also as we mentioned, if you need help on getting on a
standard exam table and they don't have the elevating kind, you
can ask them how they would specifically accomplish this and
let them know how you need to be lifted and what your needs
are.

Also it's a good idea to find out if you're going to have
procedures done, what positions are going to be needed for that
because if you have some limitations in positioning, it would be
best to allow the doctor to prepare alternative positions or if you
know of some positions that have worked for you in the past
that for instance you don't have spasticity, and if you have had
that you know what works to prevent it or reduce it, you might
want to let the doctor know that in advance.

Also let them know if you've had (inaudible) in the past if you're
someone with a high level spinal cord injury, and especially let
them know of procedures that have caused that in the past so
that they can either avoid or prepare for those.

And also don't be a martyr, don't suffer in silence.

If you know that is the positions are likely to be very painful for
you, you can do it but it's going to hurt like mad, don't just do it
any way.

Do not accept it if they say you'll just have to put up with this
for a while.  That's not acceptable.

You can leave and just don't have it done because sometimes
people think well they just have to put up with the pain.

Some procedures are painful, but if it's just a matter of having to
have your knees or hips bent in an uncomfortable position, often
there is another way to do that.

Now Peg has some other preparations.

PEG:  you know, it never occurred to me until we were doing
these studies that you could ask for a topical anesthesia or a
topical number before they take the blood gases.  You know, I
never knew you could ask for that. Now I know that you can
demand it. So the list goes on.

Okay, the next piece of advice is to be prepared.

Now, there are two ways that you could be prepared, and that is
first look up your health problems on the internet.

In other words, surf around and find as much information as you
can before going to see the physician.

Now, there are some websites that are very good for that.
There is one called webmd, it's www.webmd.com, and on that
website you can -- there is a window where you can type in the
name of any condition.

You can even do an alphabetic search and get all kind of
information from a very simple language explanation of what
the condition is and what the treatment for it is, all the way to
references that are pulled that are much more academic and
clinically oriented.

There is another website called www.4woman.gov.

Now, that is run by the office for women in the Department of
Health and Human Services, the national department, and it
offers considerable valuable information for women of all
kinds, including a link to other sources of information for
women with disabilities.

And then finally another source would be the research and
training center network that is in various parts of the United
States, it's funded by the National Institute for Disability and
Rehabilitation Research, and is one of the sponsors of this
webcast series.

The website where you would get information about those --
these rehabilitation research and training centers is located at the
following website, it's www.ncddr.org, and that stands for the
National Center for the Dissemination of Disability Research,
www.ncddr.org and you can dial up there all the research and
training centers.

You know, if you have a question about blindness, you can dial
up and see if the blindness RTC as we call them has information
that you need.

If you have a neuro muscular disorder -- I know I personally
have found the Research and Training Center on Neuromuscular
Disorders to be a great source of information that is located at
the University of California.

So in other words, there is lots of resources out there for you to
get information about your particular health problems, and the
second piece of advice about being prepared is to have your
questions in advance.

What I do before I go into any doctor's office is I go down every
body part before going on system and say what's the problem?
And what is the question and I literally write it down and I bring
that paper into the office with me.

I check off after everything has been addressed to my
satisfaction.

So admittedly, many times it's written on the back of a scrap
piece of paper that I find lying out in the waiting room, but it
doesn't matter, the important thing that you have your list of
questions ready, you're knowledgeable about your condition and
about your question and you're ready to be an equal partner with
the physician in your health care.

We've got a couple more -- we're going to move onto questions.
So I'll turn it over to Carol.

CAROL:  as Peg just mentioned, it's very important to be a
partner with your health care provider, which means
emphasizing in all your communications working together
toward your treatment goals and treating the provider as a
consultant rather than an authority figure our all knowing God.

So you don't want to start out negative, and even though that's
your experience in the past, so give him the benefit of the doubt.
I hate doctors and my mother made me come here, that's not an
effective way getting a partner, and you may actually have a
positive experience this time.

And now Peg has a few words.

PEG:  this is what we call empowerment medicine.  We're
trying to empower consumers to be those equal partners, and we
are because we are the experts of our own bodies.  We know
what it feels like.

Nobody else does.

Okay, the next recommendation is to participate actively in
decision-making about your health.

Now, this recommendation speaks to the problem that
unfortunately a lot of women have and that is being very timid
and understanding that they have to take orders from authorities
and physicians are generally viewed as authorities, so they
oftentimes don't contest something that they may have a doubt
about or be afraid of or have a question about.

So participating actively in decision-making, again, goes back to
being well prepared so that you're informed, but it really puts
you at an equal level with the physician.

So it really is a physician's power and we're really trying hard to
educate women with disabilities to be able to maintain that
position of power.

And there are many times when you really want to defer to the
physician and just say you're the expert, this is what I'm paying
you for, I really would like to know your choice of treatment or
something like that.

So there are times when you want to defer, but in general, it is
always good to be actively involved in that decision-making
process.

CAROL:  and if you don't understand the doctor's explanation,
ask for clarification.  Ask could you explain that in another way,
or if you need time to digest the information, ask if they have
any literature that you can take home.

Also nurses are well trained in health education and it's often
helpful to ask the nurse for further explanation. They can often
bring it down to more concrete, practical terms.

Okay, the next one is look up issues discussed during your exam
on the internet.  Now, after you finished the appointment and
you're kind of on your way home and mulling over what was
recommended to you or what the physician had to say, there
may be questions that come up later or you may have a lot of
fear or a negative reaction to something that you learned during
that visit and I've always found that the best thing is to try to get
more information about it and all those resources that I
mentioned to you earlier are good for looking up these kind of
questions.

CAROL:  lastly, as Peg said, you know your body better than
anyone, and you can describe what has worked or not worked
for you in the past.

Don't hesitate to bring articles or things you found over the
internet and ask about whether a treatment would be suitable for
you, and make sure that you tell your provider about any
alternative therapies such as herbs that you can using because
these can interact with your prescription medications.
They can affect the dose that's prescribed and some of them can
cause bleeding during surgery.  So make sure you let the doctor
know about those.

PEG:  okay, so those are our recommendations.

Now, on the handouts that are posted or will be within the next
week or two, you'll find much of the information that we
presented today in an article there called the Top 10 Barriers to
Accessing Quality Health Care for Women with Disabilities.
And Carol's cute little sub title. You want to read it?

RACHEL:  I can read it to you.  This is Rachel.
It says "I Can Get My Wheelchair Through the Front Door, Can
I Get this Body Part into That Machine?"

PEG:  yeah, that's Carol.  That's not me.  I didn't say that.

CAROL: Peg doesn't have anybody parts she can't get into the
machine.

RACHEL:  well, I'm sure lots of women who are listening are
nodding their heads and laughing because we know lots of
stories.

CAROL:  they must have their own versions.

PEG:  okay, back on task here, so you are going to find shortly a
list of Websites that have to do specifically with women with
disabilities, and we're in the process of revising our own
website.

We're going to make it a whole lot more user friendly and tons
and tons of information that we've uncovered recently and we're
going to be putting up on our website.  So I encourage you to
access that.

Our website is going to be to -- it's on the string when you
dialed into this Webcast.

It was a Webcast there as well, www.bcm.tmc.tmu.CROWD.

Now, also if you want to use this Webcast as a teaching module
or a small group module for a group that you're holding, a
support group of any kind. 

I know that many of the CIL's are having women's support
groups, please feel free to use this material to educate the
consumers that you work with.

And we would be happy to answer specific questions about this
material if the answers don't become clear through other
searching on the web.

But let me conclude and say that these ten barriers represent a
mix of things that we really cannot easily change and other
things that we might be able to change.

I think taking the interrelated problems of unemployment,
opportunities for marriage, lack of health insurance, that would
require a large scale multifaceted approach, but there are things
we can tackle.

We should all dedicate ourselves to developing strategies for
convincing health insurance programs to make their policies
more accommodating to the needs of people with disabilities.
We should also develop strategies to convince medical
practitioners to comply with both the letter and the spirit of the
ADA.

We can develop training modules as I just mentioned using this
Webcast as one that could be integrated into your general
services that are offered, that can also be referred to your
physicians.

But most importantly, I think, we need to develop strategies and
actually carry out programs that will train women with
disabilities to be their own advocates for good health care.
With that I'd like to open it up for questions now.

RACHEL:  okay, this is Rachel.  And along those lines, I had
somebody e-mail in a resource that relates directly to what
you're saying.  And if people have questions about the
Americans with Disabilities Act and also if people want
material that they could take to their doctors explaining what the
doctors are supposed to be doing under the ADA, then they can
call or there is also an e-mail address here -- I mean an internet
site address here.

You can contact your regional resource center on the Americans
with Disabilities Act.  And there is an 800 number.  It's
800-949-4232.

And if you call that number, a number of the people who answer
the phone are women with disabilities.  This came from one of
them and there is also a central internet site that could link you
to your regional resource center, and that website is
http://adata.org.

LAUREL:  is there a www in there?

RACHEL:  no, the http://adata.org.

And I'm find full of the time because I think we have at most 15
minutes left if that much.  I want to make sure to get in this
question which might bring about some additional conversation.
This comes from someone who said they are familiar with Peg
Nosek's work and is on the National Advisory Board on
Medical Rehabilitation Research, and she's interested in issues
regarding cognitive impairments and access to health care.

So this comes from a woman who has an acquired brain injury
and has had extreme difficulty coordinating her own care
because of the brain injury as well as because providers, family
and other potential supporters don't provide assistance or don't
believe that she needs assistance because she, quote, looks fine.

And she also says that another barrier has been that a case
worker for a, quote, traumatic brain injury, such as through the
statewide head injury program is not available to her because
her injury is an acquired injury.

She wanted to know are there other people out there
experiencing similar access problems and do the presenters have
some suggestions for her.

CAROL:  okay, well, I encourage any woman out there listening
or any man who knows a woman with the same problems to
write in to the message board.

But certainly she brings up many different issues there.
One is the incredible discrimination that is faced by women who
have invisible disabilities.

If you can't see that something is amiss, then it's so hard to
convince people that what you're saying is a legitimate need.
It's a battle that has to be fought.

Now, the other question would be the difference between a
cognitive impairment that makes it difficult to understand
versus a cognitive impairment that makes it difficult to plan and
carry out.

Those two do not necessarily go together.

Now, for people with intellectual disabilities, such as mental
retardation, autism, et cetera, those problems might be remedied
again by an advocate that may be available through a different
system.

You know, through the db system, (the developmental disability
system) to assign an advocate or enable to person to develop a
circle of support involving family, friends, neighbors, et cetera,
in other words to have someone -- one person -- that you can
count onto help you coordinate your care.

But I think what this individual was asking is more about
problems to do with scheduling and follow through and
prescriptions and all of these really very complicated things that
the medical profession expects us to be able to do.

Now, in response to that I have, I have a suggestion and Carol
has a few comments I think.

I would suggest to make the nurse of the primary care provider,
hoping that this woman has one, to make that nurse her very
best friend.

In other words, bring her chocolate, bring her something nice on
nurse's day, whenever that might be or whenever, but make her
a personal relationship with that person so that they really get
invested in your well-being.

And ask your doctor specifically to help you make the kinds of
connections that need to be made for your care.  If there needs
to be an appointment made with a specialist, I know in my
physician's office they hand you a piece of paper and they say
call this number and make an appointment.

Well, it's okay to ask the nurse to make that appointment for you
or to help you with a reminder.  There may be other things that
they can do to help outside of the office visit.

So all you need to do is ask and feel it out to see if that would
be a good person you might be able to work with.  Carol, did
you have something to add to that?

CAROL:  regarding the case worker that she was not eligible
for, it's unfortunate in our health care system that eligibility is
different for all different kinds of social services and they're not
consistent and the same with medical services, but what I was
thinking is if she could find the type of case worker that she
would be eligible for that may be from a different service, but if
she could final a hospital social worker that knows how to
navigate that system and find out what she would be eligible
under, because then that person would be able to coordinate all
of the different services and things.

Because it was just really odd to me that it was because of the
nature of her brain injury that she doesn't qualify.

So there has to be another category that she would qualify
under, but I can't say what it would be not knowing more about
her.

RACHEL:  okay, thanks.  All right, and that leads a little into
the last question that I'll put out there today, and this goes back
to something you were talking about much earlier, and I think
it's a good question because there is common misconception
that if you have a disability then surely you're going to be
eligible to get public health care benefits.

So could you quickly review the eligibility requirements to get
onto public health insurance?

PEG:  oh, I would advise someone with that question to dial up
the website for Social Security and for other -- I'm trying to
think -- oh, Railroad Retirement is one, the Native American
Health Service, there are several others.

Oh, the military, dial up the va, their website and I'm certain that
there would be a button to push to get information about
eligibility for medical care, but I do know with the VA, certainly
it's not just the person who is a veteran that can get the health
services, that family members are also eligible under many
circumstances.

So, eligibility criteria is so diverse for all of those.

I think probably the question was specific to SSDI, and SSI, and
-- well, SSDI is tied to employment.

You have to have built up a certain number of credits with the
Social Security Administration in order to be eligible for SSDI
and you also have to have your disability meet certain
requirements.

And it has a lot to do with your capacity and potential for work.
So it's very specific and very complicated for many of them.
The SSI, Supplemental Security Income, which is also
administered by the Social Security Administration is a pot of
money that's reserved for people who have very low earning and
essentially no assets to draw on for under the ages of 65 or for
some persons over the age of 65.

So SSI has its own set of eligibility requirements.

But one important thing is it does require that you have almost
no money available to you at all.

So it's very difficult for the government type health care plan.

For example, many, many women are living with their families.
The family has resources, and they may do some kind of work
but not earn a whole lot of money at it and they may be
homemakers and they may care for chirp and that doesn't pay a
lot.

So they don't have a lot of resources, but they have too much
SSI, but not enough for SSDI.

So it's a real catch-22 for many women and I think that 34
percent figure of all the uninsured of all the women is really a
very sad case when you have no recourse whatsoever.

LAUREL: Peg, it's sobering is what it is.

PEG:  very sobering.

CAROL:  I just wanted to add that the persistence rule is what
you mainly need to get SSDI and that particularly since the
Reagan administration, they virtually turned down everybody on
the first application because they wanted to discourage people
from applying for it.

And just to give you an example, I was taking a disability law
class, and the person teaching class used to be a disability
attorney and then became a judge, and he showed actual cases
of people that have been turned down and we're talking
everything from someone with multiple chronic conditions and
that was virtually home bound and with no legs and one arm
and this person was not considered disabled.

The second time around she did get it, so you reapply, and they
may also move a lot so you have to keep sending the same
papers to different offices, but a large proportion of one that is
are turned down on application do get approved through the
administrative court system, though sometimes that just depends
on who you get for a judge and you better not be in Texas.
Because they don't think you should be able to get it.

PEG:  you know, funny thing for me, too, if any of you who are
tuning in to this webcast know me personally or have seen
pictures, you know that I've had a severe disability all my life
but I've never been acknowledged as being disabled.

It wasn't until I started using a ventilator 24 hours day that I was
finally labeled as a person with a disability in the eyes of my
employer and in the eyes of Social Security because they figured
at that point I wouldn't be able to work.

So, please, don't tell them I'm doing this Webcast.

CAROL:  they told her she had been working full time so she
could keep on working.

PEG:  I guess I'm having an able bodied moment.

RACHEL:  in any case, we're very glad you did the Webcast
and if people do have -- before I turn it over to Laurel, if people
have additional questions, since the time is running out, if you
look on the web page, how you got into this Webcast, there is a
link there for the message board, and you can post additional
questions or suggestions or comments on that message board
and I see actually that one is already posted there.

PEG: Carol and I will be checking that message board for those
questions every day for the next month.

So if you have a question, please try to get it in within the next
month or you could also e-mail us here at CROWD.

LAUREL: Peg and Carol, thank you for the presentation, and
regarding resource theys are available to folks, I must say that
the CROWD website is an excellent resource for all kinds of
materials.

Some that are available there, some you have for essentially
postalening and handling costs.

Our regarding ADA, our ADA website at ILRU is first rate and
has excellent information, and should be checked out.

The Research and Training Center on Health and Wellness has a
website that has a lot of information and the section called
Health Information is growing and is -- contains information for
folks who would like to have additional information on a variety
of health, wellness, quality of life concerns.

Then finally, I want to remind you of the database that's
available through RIIL.

All kinds of resource materials or abstracts, research find, or
abstracts, and it's just an excellent resource for more
information on this and other subjects.

In closing, I want again to acknowledge the support of NIDRR
for initiatives such as this where those of us who have stakes in
the research outcomes are provided opportunities to learn more
about that research, and people like Carol and Peg and other
researchers who are doing work that makes a difference to our
lives, this opportunity to hear from you two has been wonderful.

Although, as has been pointed out, you all are extremely
effective in disseminating information to a broad range of
audiences.

I'd also like to express our appreciation to the RIIL Project, and
our colleagues at University of Kansas, the Research and
Training Center on Independent Living there.

Our colleagues at the Research and Training Center on Health
and Wellness, and want to remind you that the discussion forum
or discussion group is available now and to please continue to
post questions there.

In addition, this session will be archived and the audio will be
available, the transcript will be available as well as the -- all the
handouts that are associated with this presentation.

You can check back, oh, in the next couple of days for the
address, the web address for that archive.

So again, the last thing in closing is to thank our web team.

It consists of folks inside and outside ILRU.
Our outside group are the technicians, Rob Dickehuth, who
makes the webcast audio and video possible, and then also
Marie Bryant who is probably the best captioner -- realtime
captioner that we have available.

And then our own team of Marj Gordon, Sharon Finney, Rachel
Kosoy, Dawn Heinsohn and Mark Richards.

Thank you for joining us today and please wap for additional
and upcoming sessions.

Peg and Carol thank you both very, very much and good
afternoon.