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11-16-11
Transcription provided by: Caption First, Inc.
>> Dr. Monesterio: The title of this deck is access to
Michael Karin disabled minority populations. First, for some
definitions in the World Health Organization, the definition of
health, it's a state of complete physical, mental, and social
well-being. It's part of everyday life. It's really not the
object of living but part of it. It's considered a positive
concept emphasizing social and personal resources and physical
capacities.
Within that health definition, the term disability is -- means
the physical or mental impairment that limits one or more major
life activities of that individual. There needs to be a record
of the impairment. It's also being regarded as having that
impairment. It's developed by the World Health Organization, the
international classification of functioning disability. It
provides a unified language in framework for the description of
health. The ICF puts the notions of health and disability in a
new light, bringing them both together. It acknowledges that
every person can experience decreases in their health, and
thereby experience some degree of disability at any time during
their lifetime and it mainstreams the experience of disability
as a universal human experience.
Within the definition of disability from the ICF, it serves
as an umbrella for impairments, activity limitations, or
participation restrictions. Impairments are problems in body
function or structure that to -- to some extent affect a person's
ability to engage independently in some aspect of day to day
life. This shifts the focus from cause to impact, so it's really
role-oriented. It places the health conditions on equal footing
rather allowing them to be compared using a common metric. The
ICF really tries to combine the medical and social models in
order to provide a coherent view of health from a biological,
social, and individual perspective. The ICF measures the impact
of the environment on the person's functioning by documenting it
in a contextual or extrinsic factors. So, who's to say, well in
the U.S., fifty-four million Americans, or one in five people,
are living with at least one disability. Most Americans will
experience a disability as some time during the course of their
lives. The most common descriptions of disability are
musculoskeletal or ontological pain, but also certainly within
the different disease types and structures there are different
disabilities.
And so every one of us, at some point, may experience a
disability at some point in our life whether it's from disease,
pain, complication. Because of that, really, there is this
impetus to improve health and wellness in persons with
disabilities.
People with disabilities still have daily healthcare needs.
These goals are to get and stay healthy. They need to be able to
obtain the healthcare they need when they need it just like
everybody else, and people with disabilities need healthcare
professionals to understand and to be able to communicate and
respect them, not only as people, but as a person with a
disability. So -- and we need to be able to treat all of their
healthcare needs, not just their disabilities so somebody who
comes to a clinic with a disability still needs preventive care,
still needs immunizations, still needs surveillance medicine.
So the goal is to change that -- to improve that we need to --
there has to be an increase in understand nationwide that people
with disabilities lead normal, long, productive lives. Health
professionals have to have the -- give the patients the tools to
screen, diagnose, and treat the whole person with disability
with dignity. There has to be increased awareness among people
with disabilities of the steps they can take to develop and
maintain a healthy lifestyle and a relationship with a medical
care professional, and that accessibility to the healthcare and
supports need to be improved.
So it -- everybody has a potential to have a disability.
People with disabilities have the same challenges as those who
come with -- with people who don't have disabilities for their
health and well-being, specifically the -- having the tools and
knowledge -- knowledgeable healthcare professionals to help them
lead healthy lives. So what do they need?
Their structure of their life, they need accommodations and
supports. They need access to healthcare, need to be engaged in
wellness activities and they have to be able to get that
supportive care from their friends and families as well.
So when we look at quality of life measures, only twenty
point four percent of people with disabilities their health to
be excellent or very good, versus sixty percent of people
without a disability. Disability doesn't really imply illness.
Some disabilities lower the threshold to an array of secondary
conditions that can really negatively impact quality of life.
Eighty-seven percent of people with a disability report at least
one secondary condition as opposed to fifty percent more or less
of the people without a disability.
So, secondary conditions are physical, mental, or cognitive,
emotional, or psychosocial consequences to which persons with
disabilities are more susceptible by virtue with their
underlying condition, and the secondary conditions can cause
adverse outcomes in health, wellness, community participation,
and quality of life. The secondary condition can be varied. One
of the more common is depression and fatigue but certainly
medical complications, hypertension, urinary tract infections,
fractures, in particular for patients who don't walk, weight
gain, skin issues, and respiratory problems, all can impact
quality of life.
A lot of these secondary conditions, particularly those
acquired conditions can be prevented. It's a combination of
health maintenance practices, removal of environments and
barriers, and improved access to effective medical care. But
some others are inevitable and associated with the disease
process but may be able to manage but not necessarily prevented
and anticipated by medical care.
Having said that, still, there are many people with
disabilities who consider themselves healthy and well, which
enhances their quality of life. Maintenance of a healthy
lifestyle enables people with disabilities to continue to learn,
work, and live actively in their communities. Health risks and
disparities associated with disability can make achievement of
good health more difficult, so we want obviously to get rid of
those as much as we can. It really requires a provider who
understands that people with disabilities can be healthy,
active, and assertive participants in the management of their
medical care.
If they don't have sufficient knowledge and awareness of
disability by the public, then healthcare and wellness service
providers, educators, administrators, the media, and others, and
that ability to communicate to the general public that people
with disabilities can lead normal lives is -- suffers. There's
much less ability to do that. Even within the population of
people with disabilities, it's -- they find that twenty-five
percent of people found that they had difficulty finding a
doctor who really understands their disability.
So, as healthcare professionals and people who interface with
people with disabilities, particularly from the medical care,
really have to be able to respond not only to the disability but
to do the whole person. What's seen is, when you don't respond
to the whole person, you're just thinking about the disability,
you're less likely to do things like preventive care. Terrible
examples, seventy-four percent of women with disabilities over
nineteen report receiving a pap smear versus seventy-eight
percent of women without a disability, and then fifty-five
percent of women with disabilities ages forty and above report
receiving a mammogram compared to sixty-one percent of women
without a disability, so there's clearly a lack of basic
preventive care in some of these patients.
To compound the problem, in minority populations, there's a
lower amount of insured patients and those are defined as didn't
have any health insurance, Medicare, Medicaid, state children's
health insurance programs, or state sponsored programs to help
with their -- cover their medical costs.
Compared to nondisabled women, women with disabilities are
among the most frequent consumers of medical services despite
that they get less preventive care, they are there more. But
they're using the services for more non-medical services, social
security benefits, wheelchair transport, and personnel
assistance services. And the fact that you need medical
certification for -- to be labeled as disabled.
Lots of times within healthcare and wellness centers, so
there is -- there just aren't the accessible services, you know,
examples, women with disabilities who are wheelchair bound have
trouble getting into -- up structures in gynecology clinics where
they can be put on the table. There is no lifting help. So
really, we need systems to make use of an enhance of access.
It's not just medical care. A majority of services have been
done of gyms and workout facilities where it's clearly obvious
that they're not wheelchair accessible.
So there -- we just touched on the physical and architectural
barriers are there, wheelchair accessibility, lifts,
communication barriers for the hard of hearing, and there's
attitude barriers of healthcare workers and the front office
personnel. There are social and economic policy barriers
affected by the insurance coverage. So really, after all I've
said, in all of those barriers, to setup an accessibility
training program that then would help both the support staff and
the professional staff.
And obviously there are -- the ADA requires accessible
healthcare, reasonable accommodations, so changes that can be
readily achievable and they're not presenting undue hardship on
the facility. That can be defined different ways so sometimes --
if it is a hardship, it means that the building will not be
accessible. Practitioners of facilities need to learn about and
provide specific accommodations for people with a full range of
disabilities which can be arduous.
But despite that, really, people with disabilities require
the same quality of healthcare services and preventative care as
any patient but appear to be underserved and receive less than
quality care. So when we define health as the absence of
disability or chronic illness, it really negatively affects
these people with disabilities.
We really need to avoid stereotypes. People with disabilities
can lead full and productive lives with a high quality of life,
*** relationships, parenting, and be active in their
communities.
So really advanced access planning, so if, for the case
managers and the people trying to setup the care and the timing
of these services, they really have to listen to their patients
and to their clients with disabilities to understand their
background and their functional needs. Maybe people with
disabilities really understand their disability and their needs
and they're experts in their own condition. They may -- they'll
tell you a lot of times what they need and what they want, but
you also have the flipside of people with a nuancive disability
really don't understand the disability, don't have that same
expertise, and will require much more training to become more
independent.
So the model accounts for the disability and marginalized
minority constituency. So, in fact, there's a -- it generates -
you really have to be -- pay attention to within that model, have
to address a full range of barriers, including environmental,
architectural, logistical, societal, and cultural really to
impact the healthcare -- the disabled individual as much as their
biological impairment.
Appropriate care at the onset of the disability can also
prevent unnecessary hospital visits, mismanagement, and then
ideally, secondary conditions that can be prevented.
Many times a team approach works best with complex health
needs. Usually it's much more accessible in children's
healthcare where they'll be multispecialty clinics which are
much more rare in adult healthcare, but even within that model
the primary care physician can act, or a case manager can act as
a gatekeeper to prevent unnecessary referral to specialists and
to make sure that all of the caregivers are communicating with
each other. So ahead of time, it's important to try to check
accessibility when referring patients for a diagnostic study in
specialty clinics and making sure that not only they have the
appropriate insurance coverage but asking the questions. Is your
facility accessible? Can they get up on the examination table?
It's those kinds of things.
So you really have to talk to the patient and your client,
not -- not the caretaker necessarily. You have to ask how can I
help you, try to -- and respect that answer. Patients will and
clients will tell you if you ask them and you let them
communicate, what their needs are. Try to ensure that
educational materials are accessible. Allow sufficient time for
an exam. Many times with a patient with a disability it takes
longer to perform a history and physical than somebody without a
disability. And use people's first language. Refer to the
individual first rather than through disability. It's not
uncommon to hear medical professionals say the CP kid or a CP
child rather than a child with cerebral palsy.
Some specific examples to disability sets: for the visually
impaired it's important to identify yourself and who else might
be in the room with you when you walk into the exam room. You
want to speak naturally in a conversational tone and speed. You
can use words that refer to vision during the course of the
conversation and if you regard somebody -- to guide somebody, you
allow them to take your arm above the elbow and walk in front of
them. Never grab or push them.
For the blind or visually impaired, provide a reading material
in auditory format on a computer disc, in brail or large print
possibly.
For patients with hearing impairment, ask them how to best
communicate from the onset. Provide an interpreter and
particularly for important or medical issues, the interpreter
probably should not be somebody who doesn't -- is not able to
communicate in medical language, so -- so the patient shouldn't
be charged for their interpreter. Fellow members or children
shouldn't really be pressured to interpret. You can provide
written educational for them as well. You look at the person
you're speaking to rather than an interpreter and don't block
your face particularly for the patients who can lip read. Just
like in visually impaired, speak using a natural conversational
tone.
For patients in a -- who are in a wheelchair, you try to place
yourself at eye level, so you sit in front of the patient to
facilitate conversations. It can be patronizes if you're tapping
or patting patients who are below your eye level. You have to
provide access to exam areas as we talked about earlier and
provide assistance as necessary for a complete exam even if it
requires more time which it will. It's -- many patients and
people with wheelchairs find it rude to be pushed in the chair,
particularly if they don't ask for it. Sometimes they'll go to
their point of taking off the handles on the chair. Really try
to have adjustable exam tables in your facility if possible.
Patient with speech impairments, you want to be respectful.
Never assume that a person has a cognitive disability just
because she has a disability or a difficulty speaking. It's very
common to misjudge a person's intelligence based on their speech
pattern or lack of. You want to listen when they're speaking.
Many times they'll take longer to complete a sentence. You don't
need to correct them but you need to let them finish the
sentence and try not to interrupt them. If you don't understand,
don't pretend that you did. You want to ask them to repeat it or
write it down before you respond.
So, questions for the caretakers and the patients themselves
or the case managers to ask, you want to know if the facility is
accessible before you get there. Are accessible entrances
clearly marked? Are exam rooms accessible? Can you use -- can you
get a wheelchair in and out of a room? You want to know -- make
sure, again, we've covered all parts of a history just as you
would with an able bodied patient. You want to have them do a
*** history which is also typically neglected due to
stereotypes. Are the medical and nonmedical staff trained to be
respectful and assist effectively? Is there adequate time within
their schedule? A typical follow-up, ten to fifteen minutes
appointment may not be appropriate for a patient with a
disability. It may require a half an hour or forty-five minutes
for an appointment and they are -- they have telephones for
communication relays and interpretation.
Some resources for the patients and caregivers, the ADA,
there's a fairly efficient guide to culturally competent care,
removing barriers to healthcare, tips and strategies to promote
accessible communication, and then some other references.
Thank you very much.