Disability Issues Series

1
Disability Issues Series
Wellness in the Context of Disability
Lecture One Enhancing Physicians Knowledge
about Those Who Live with Disabilities Part C
Promoting Independence
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Primary Care Promoting the Independent Living
Model

• Support from physicians is essential if an
  individual with a disability is to successfully
  manage their disability in the community.
• A physician must understand and support the
  concept of independent living and convey it to a
  person with a severe disability and their family.

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Independence Defined

• Independence the degree of control one has over
  ones life.
• Independent living measured by the
  responsibility one can assume with adequate
  support.
• Independent living a choice

4
Primary Care Helping Patients Achieve
Independence

• Choice is a very important idea among people
  who live with long-term disabilities.

• Introduce the idea of independent living long
  before a transition takes place.

For patients who desire it, learning to
live independently is a step-by step process that
involves physical, environmental, and social
challenges and many frustrations.
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Primary Care Prescribing Services and Technology

• You will be asked to verify continued need and
• advocate for services and assistive devices.
• You are key to determining the number of hours
  awarded for personal care assistance by the
  state.
• Be specific and detailed in your analysis of
  what is needed and why it is needed to avoid
  unnecessary delays.

6
Federal Financial Assistance for Living Expenses

• Social Security Administration helps cover
• basic living expenses
• Social Security Disability Insurance Program
  (SSDI)
• benefits based on work history and average
  earnings
• of the insured worker.
• Supplemental Security Income (SSI)
• Benefits based on a documented disability,
  inability
• to work, and personal income and assets.

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Federal Aid for Health Care

• Federal health financing programs
• MediCare Most people eligible for SSDI are
  eligible for Medicare.
• Medicaid (called MediCal in California) Most
  people eligible for SSI are eligible for
  Medicaid.
• Medicaid plays an important role for the
• disabled poor, particularly children.

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Disability and Poverty

• Publicly financed health coverage does not fill
• the gaps in health insurance for many disabled
• persons.
• Low income and lack of adequate medical
• insurance affect a majority of disabled people
• 60- annual income of 25,000 or less 44-
  earn 15,000 a year or less 44- mortgage
  foreclosures due to disability

Meyer, JA et al. Kaiser Commission on Medicaid
and the Uninsured, pgs. 10-18, 1999.NOD/Harris
Survey, Louis Harris Associates, Inc., p.135,
1994.
9
Underutilized Resources for the Disabled

• Nationwide no more than 13 of disabled
• people use major services available to them
• Department of Rehabilitation
• Independent Living Programs
• Department of Social Services In-Home-
  Supportive Services

RRTC/NMD Quality of Life Survey (unpublished
results).
10
Separation and Independence

• Pursuing independence is a major life
• transition.
• Factors that make separation difficult
• Continuing need for treatment
• Looking younger than ones age
• Parental overprotection
• Comfortable home setting
• Limited physical freedom.

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Encourage Your Patient to Take Charge

• Patients from adolescence onward should be
• made aware of their treatment choices and
• encouraged to participate in decisions.
• Individuals with disabilities who need
• assistance from others should be encouraged
• to learn self-care skills as an important way to
• enhance self-esteem and autonomy.

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Personal Care Assistance

• Personal care assistance is the key to living
• independently.
• Personal assistance is defined as one person
• assisting another with tasks that the individual
• would normally do him or herself if he or she
• did not have a disability.

Litvak, S. et al. 1987.
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Separation from Family Personal Care Assistance

• The issue of personal care assistance is a
• source of fear and concern when leaving
• aging parents
• They never trained me in how to prepare for
  that, and it was a fear everybody had, but we
  never discussed it

Interviewee, RRTC/NMD Quality of Life Survey,
unpublished results.
14
Managing Personal Care Assistance

• Having personal care assistance is as essential
  as having air to breathe. It is very difficult to
  find good ones. It is the single most difficult
  thing that I have to do in my life. Its part of
  survival. We cant live one day without an
  attendant. The experience is like running a small
  business. I have my job, and I have my business.
  My business is trying to live.

Interviewee, RRTC/NMD Quality of Life Survey,
unpublished results.
15
Funding Personal Care Assistance

• There are three modes of service delivery
• available to pay for personal care assistance
• Services are paid for by a service agency such
  as IHSS, an insurance settlement, or
  out-of-pocket
• Family or friends provide the service on a
  non-paid basis
• Combination of paid and non-paid services is
  used (volunteer, exchange of services).

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Personal Care Assistance

• A physician must verify that a PCA is needed
• and prescribe a level of care.
• 63 of respondents to the RRTC/NMD Quality
• of Life survey use private funds to pay for a
• PCA.
• This is an area where hidden costs arise and
  often are overlooked.

17
Personal Care Assistance

• In-Home-Supportive Services (IHSS) pays a
• PCA the minimum wage for a maximum of 283
• hours a month.
• IHSS does not allocate extra time for training
• new PCAs or additional service if needs
• suddenly change.

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Civil Rights Legislation ADA

• Individuals with disabilities are protected from
• discrimination by the Americans with
• Disabilities Act (ADA) of 1990.
• Disability is defined as a physical or mental
• impairment that substantially limits one or
• more major life activities.
• The ADA protects people with orthopedic,
• visual, speech, and hearing impairments.

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Compliance with the ADA

• A person with a disability may not be denied
• services by a medical provider.
• People with disabilities have a legal right to
• accessible public services at hospitals and
• the offices of health care providers.
• ADA Accessibility Guidelines apply to newly
• built medical facilities and those being
• renovated.

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Civil Rights Legislation IDEA

• Individuals With Disabilities Education Act
• (IDEA) guarantees the right to a free and
• appropriate education for all handicapped
• children in the least restrictive environment.
• Help parents be aware of their childs rights.
• Early integration aids independent living later.

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Civil Rights Legislation IDEA

• We have learned there is a strong correlation
  between the integration of disabled students into
  the regular classroom and future successful
  outcomes for these students in terms of
  employment and independent living. --Judith
  Heumann, Assistant Secretary for Special,
  Education and Rehabilitation Services, Dept of
  Education

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Conclusion

• Please remember that people can and do adapt to
  their disabilities and need access to the same
  health care as everyone else. You can use your
  expertise to partner with a disabled person to
  open their eyes to all the possibilities.
• Life is bigger than disability.

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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