Disability Issues Series

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Disability Issues Series
Wellness in the Context of Disability
Lecture One Enhancing Physicians Knowledge
about Those Who Live with Disabilities Part B
Primary Care, Health and Well-being
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Primary Care Health and Well-being

• World Health Organization Health is a state of
  physical, mental, and social well-being.

Community integration is the measure of
successful rehabilitation.
Primary Care for People with Disabilities Health
should be pursued in a context that includes
lifestyle and social issues.
Mausner, JS et al. Epidemiology An Introductory
Text, p.26. Philadelphia, WB
Saunders, 1985.
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Primary Care of Disabled Women

• Primary care for many, if not most, people with
  long-term physical disabilities is not the same
  as primary care for non-disabled people.
• Two-thirds of women with disabilities fail to
  receive routine preventive and health maintenance
  services from their healthcare providers.

Nosek, MA and Howland, CA. Breast and Cervical
Cancer Screening Among Women with
Disabilities. Arch Phys Med Rehab 78Suppl.
5-39,1997.
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Barriers to Receiving Primary Care
Why disabled women say they fail to receive
primary care services

• Medical offices are not set up to meet
  
  
  the needs of people
  with disabilities.
• Health care providers make incorrect
  assumptions about the lives their patients
  actually lead.

Nosek, MA and Howland, CA. Breast and Cervical
Cancer Screening Among Women with
Disabilities. Arch Phys Med Rehab 78Suppl.
5-39,1997.
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Standards of Primary Care

• Current standards of primary care include acute
  care and disease screenings.
• For people with long-term disabilities,
  particularly women, minimum standards of
  preventive care often are not achieved.

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Primary Care of People with NMD

• 1100 men and women with NMD were asked
• If you use a wheelchair, are you examined on an
  examination table? 56 said No (n437)
• If you are moved to a table, do you receive
  adequate assistance? 43 said No (n892)

Abresch, RT and Seyden, NK. RRTC/NMD Quality of
Life Survey (unpublished results).
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Primary Care Reproductive Health

• 31 of women with mobility or self-care
  limitations are denied medical services because
  of their disability.
• Barriers to reproductive health exams include
  architectural difficulties, inadequate equipment,
  and untrained staff.

Nosek, MA et al. 1997 National Study on Women
with Disabilities. Center for Research on Women
with Disabilities, Houston, TX. Nosek, MA et
al. Barriers to Reproductive Health Maintenance
Among Women with Disabilities. Journal of
Womens Health 4 505-518, 1995.
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Sexual Activity Among Disabled Women

• 94 of women with disabilities are sexually
  active.
• Rate of STDs is the same among disabled women
  and women without disabilities.
• Disabled women often are not given pelvic or
  breast exams.

Nosek, MA et al. 1997 National Study on Women
with Disabilities. Center for Research on Women
with Disabilities, Houston, TX.Nosek, MA and
Howland, CA. Breast and Cervical Cancer Screening
Among Women with Disabilities. Arch Phys Med
Rehab 78Suppl. 5-39,1997.
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Barriers to Receiving Mammograms
136 disabled woman reported that they

• Physically were unable to get into the
  required position
• Had not been informed by their doctor that
  they needed a mammogram
• Believed their risk for breast cancer was very
  low.

Nosek, MA and Howland, CA. Breast and Cervical
Cancer Screening Among Women with Disabilities.
Arch Phys Med Rehab 78Suppl. 5-39,1997.
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Primary Care Cooperative Problem Solving

• Medical offices, exam tables, and all services
  and equipment must be accessible to patients
  with functional limitations.
• Ask the patient what method of transfer works
  best for them.
• Consider making a home visit.

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Primary Care The Exam Table
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Primary Care Weighing a Disabled Patient

• Is your office equipped to weigh a person in a
  wheelchair?
• If not, do you refer your patient to a more
  specialized practice for primary care?

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Wheelchair Platform Scale
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Sling Scale
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Primary Care Medical and Technical Know-how

• You will be asked to write prescriptions for
  life support and medical supplies, medicine, and
  assistive devices.
• Individuals with severe disabilities require
• more technical support than other
  patients.
• Both low- and high-tech tools are required.

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Primary Care Matching People with Technology
When prescribing technical tools consider

• The environment in which it will be used
• Level of support necessary to use it
• Preference and capability of the recipient
• Available funding.

Scherer, MJ. Living in a State of Stuck How
Technology Impacts the Lives of People with
Disabilities, pp. 115-137, 1996.
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Primary Care Ventilation
Any plan to make use of a ventilator in the
community must consider

• Availability of personal care
• Effective back-up plans
• Feasibility of adequate repair and maintenance.

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Primary Care Ventilation

• Be aware of symptoms that may indicate a
  serious, life threatening ventilation problem

Excessive sleepiness
Change in sleep patterns
When in doubt, refer your patient to a
pulmonologist.
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Primary Care Ventilation
You can help both the individual with a
disability and their family understand that it is
possible to incorporate the use of ventilation
into the normal daily routine of living with a
disability.
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Primary Care Lifestyle

• Family issues that arise out of living with a
  disabled family member correlate directly to the
  health of the disabled family member.
• Address the health risk directly
• Refer your patients to other professionals
• Advocate for appropriate support services.

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Physical Abuse

• Prevalence 62 of disabled women
• Abusers typically a spouse or live-in partner
  also attendants, healthcare workers.
• Environmental barriers such as lack of
  accessible transportation or attendant services
  prevent disabled women from seeking medical
  attention.

Young, ME et al. Prevalence of Abuse of Women
with Physical Disabilities. Arch Phys Med Rehab
78Suppl 34-38, Dec 1997.
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Preventing Abuse Steps to Take

• Talk to your patient directly and
  privately
• Ask if attendants or family ever withhold
  prescribed devices or medications or if they
  refuse to assist in daily activities
• Assess the degree of danger to the patient
  if the abuse is reported or if it continues.

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Preventing Abuse Steps to Take

• Help your patient develop a safety plan
• Document the incident
• Plan for follow-up care
• Provide resource information.

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Family Life Disabled Parents Can Be Successful
Parents
Planning a pregnancy and parenting are areas of
special concern for disabled people, but not
always for the reasons you might think. Like
most prospective parents, disabled people worry
if they will be up to the job. Disabled parents
often face negative judgments from others.
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Family Life Successful Parenting
I remember the head nurse in the hospital
frankly saying she thought it was a real mistake
that we were having a child. As disabled folks,
we were never going to be able to take care of
this. Wed probably have to put the child up for
adoption. --Interviewee, RRTC/NMD
Quality of Life Survey.
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Primary Care Children with Disabilities
Family members are the major influence on a
disabled childs sense of self-acceptance

• Provide leadership in helping parents promote
  self-reliance and appropriate expectations
• Be aware of community services to which you
  can direct parents and their disabled children.

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Primary Care Children with Disabilities

• Emphasize the importance of physical fitness
  and community involvement
• I realized that I could indeed travel. Travel
  has become a major theme in my life. I was in
  the Guinness Book of Records as the most traveled
  disabled person, and I have been to every country
  in the world except Iraq and Somalia, and Ill go
  there when I can, except not this week.

Interviewee, RRTC/NMD Quality of Life Survey,
unpublished results.
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Primary Care Redefined

• Primary care for disabled people would ideally
  come from a specialist, such as a physiatrist.
• Primary care for a person with severe physical
  disabilities must be redefined and broadened in
  order to provide the necessary basic level of
  care that maintains health and quality of life.

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Credits
Project Manager Kathryn Devereaux, PhDWritten
by Nancy Seyden, MS and Kathryn Devereaux,
PhD Videography Kathryn Devereaux, PhD Video
Editing Scott Hildebrand and Melissa
Eitzel Video Compression Scott
Hildebrand Video-Web Integration Eli
Richmond This work was supported by US Dept. of
Education National Institute on Disability and
Rehabilitation Research Grant H133B980008
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Buffering Lecture 1, Part C