The Aging of Persons With Mental Retardation and Developmental Disabilities

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The Aging of Persons With Mental Retardation and
Developmental Disabilities

• Karl Urban
• Manager of Policy Analysis and Support

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Objectives of Presentation

• Review why the aging of persons with mental
  retardation and developmental disabilities is an
  important issue for the Aging Network
• Review current literature and research on the
  issue
• Have a discussion of the key issues

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Why does this issue matter?

• A developing demographic reality
• Stakeholders in Austin have noticed
• Executive Order RP 42 on Aging Texas
• Promoting Independence Advisory Committee
• Texas Council for Developmental Disabilities
  Biennial Report
• Establishment of DADS creates opportunities to
  coordinate and integrate services across
  populations

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Demographics

• The mean age at death for persons with MR/DD rose
  from 19 in the 1930s to 66 years in 1993, an
  increase of 247
• There were an estimated 641,161 adults age 60 and
  older in 2000 in the US this group is projected
  to nearly double by 2030 when last of Baby
  Boomers reach age 60

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Stakeholder in Austin are starting to pay
attention

• Aging Texas Well Executive Order DADS shall
  review and/or comment on state policies including
  improving the provision of services and supports
  to persons with developmental disabilities and
  mental retardation who are aging
• Promoting Independence Advisory Committee 2006
  Plan As with the entire population,
  individuals with cognitive and/or physical
  disabilities continue to live longer. It is
  important that the state be prepared, and has a
  plan to provide services for this specific
  population with their different needs.
• Texas Council on Developmental Disabilities 2006
  Biennial Disability Policy Report will address

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Creation of DADS

• Merged services from
• Legacy Texas Department of Mental Health and
  Mental Retardation focused on persons with MR/DD
• Legacy Texas Department of Aging focused on
  persons who are aging
• Legacy Texas Department of Human Services focused
  on persons with physical disabilities
• Created with a functional philosophy and
  organizational structure
• With a vision of coordinating and integrating
  services across populations
• Access and Intake Division established with this
  purpose
• Real Choice grants focus on integration
• Older Americans Act does provide for services to
  some persons with MR/DD (discussed later)

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In WHCoA Testimony, Dr. Alan Factor noted that
infrastructure for collaboration already exists

• SUA must be represented on the state DD Council
• OAA allows for services for targeted clients
• RWJ funded grants to enable SUA to incorporate
  the disability community philosophy of
  self-determination and consumer direction in
  services
• NFCSP funded demonstrations that served older
  families with development disabilities
• CMS and AoA funded ADRCs as the single point of
  entry for all consumers needing long-term
  services and supports
• In addition, the TCDD funded a project for the
  Texas Aging Network to reach-out to the DD
  community

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The OAA

• Funds supportive services for older adults with
  severe disabilities and to meet the unique needs
  (including permanency planning) of older
  individuals with provide uncompensated care for
  the adult children with disabilities
• Requires SUAs to coordinate the nursing home
  ombudsman program with the protection and
  advocacy system for individuals with DD
• Allows disabled, dependent adults under age 60 to
  be served at congregate meal sites if they attend
  with an eligible parent or caregiver
• Enables AoA to fund multidisciplinary gerontology
  programs with an emphasis on disabilities
• Encourages SUAs and AAAs and state and community
  MR/DD agencies to jointly plan and develop
  services for older adults with MR/DD

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Research Methodology

• Review of literature
• Surveys of key stakeholders and agency experts
• Planned survey of local service managers
• AAA Directors
• MRA Directors
• State School Directors
• DADS Regional Directors
• Stakeholder/consumer input at TCoA and through DD
  Council focus groups

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What We Have Learned Thus Far?
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About DADS Populations

• About 2000 or 8 of those receiving
  Medicaid-funded MR/DD services are age 60
• Approximately 70 percent receive services in
  ICF-MR settings and 30 percent in community
• An unknown number receive GR-funded services
• The number of persons with MR/DD served by the
  Aging Network is not measured
• It is much more difficult to count the persons
  receiving legacy DHS services we know how old
  they are, but we dont have good data on how many
  of them may have an MR/DD diagnosis.
  Nevertheless

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Number of Persons with MR/DD Receiving DADS
Services and Not Receiving HCS
Based on diagnosis code, which are NOT
considered to be very accurate therefore, this
data should be interpreted as giving only a
general indication of services received by this
population.
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From literature review

• For some people with MR/DD, aging occurs earlier
  than in typical adults. The aging process can
  begin as early as 30 years of age
• Some of the problems of aging are magnified for
  people with MR/DD. In addition to common
  age-related health problems, they also have
  higher risk for
• gastrointestinal and esophageal disorders,
• hypothyroidsm,
• nonischemic heart problems, and
• epilepsy
• Adults with Down Syndrome generally have higher
  frequency of thyroid dysfunction, cardiac
  disorders and sensory impairments.

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From literature review

• In addition to the general lack of geriatricians
  and gerontologists, many physicians are not
  qualified to treat people with MR/DD
• There are accessibility issues in obtaining
  adequate medical care. Sometimes the exam and the
  equipment are intimidating. Other times, the
  equipment is simply not designed to accommodate
  physical limitations that can be part of MR/DD
• For example, DADS quality survey found that women
  with MR/DD do not visit the OB/GYN

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From literature review

• People with MR/DD tend to have smaller, weaker
  social networks
• People with MR/DD are at increased risk for abuse
  
• 60 of persons with MR/DD live with their
  families and in one-quarter of these households
  the primary caregiver is age 60 or older

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From literature review

• People with Downs Syndrome
• Grow old at a much younger age
• Have Alzheimer's Disease at higher rates than
  general population, develop it earlier with a
  shorter duration (on average 8 years), sometimes
  dramatically shorter (2 3 years)
• There is an increased risk for Alzheimers
  Disease among people with developmental or other
  disabilities in general (e.g., those with head
  injuries)

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Focus groups of 30 women with mental retardation
found

• negative perceptions of aging
• misconceptions and limited knowledge regarding
  age-related physical and psycho-social changes
• wanted more information regarding their bodies
• wanted explanations of health service procedures
• tended not to identify as disabled
• lacked info on health promoting behaviors
• engaged in high risk behaviors without
  understanding of consequences
• lacked information and autonomy regarding
  personal rights and empowerment in managing own
  health

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Survey Results

• Sent to members of the Promoting Independence
  Advisory Committee, Aging Texas Well Advisory
  Committee and statewide Guardianship Advisory
  Board
• 13 responses self-identified as being from
• 1 from aging perspective
• 5 from MR/DD perspective
• 6 from both
• Purpose was to get a general overview of the issue

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Do you know of any programs, in Texas or
elsewhere, that are designed to serve the needs
of people with MR, DD or other disabilities who
are aging?

• NFCSP
• State Schools and State Hospitals have programs
• Perhaps some targeted programs in mental
  retardation authorities
• Most representative response No

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What do you think are the most important issues
for the aging of persons with MR/DD?

• Aging caregivers
• Understanding the aging process
• Age-appropriate treatment and social activities
• Transition from active day habilitation to
  retirement activities
• Ability to age-in-place, with continuity of care
  for health concerns
• Overall system adequacy
• Quality of life, age-appropriate treatment
  and social activities. Having friends and
  meaningful relationships with other adults that
  may have the same interests. Finding activities
  that adapt to new disabilities that may be
  brought on by age such as hearing, seeing and
  memory.

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Do you know of any policies currently in place in
Texas that specifically make it difficult to
provide appropriate services to persons with
MR?DD?

• Active treatment requirement for ICFs/MR
• HCSs day programming
• Fragmentation of services and lack of system wide
  case management
• They do like attending the local senior center
  and playing bingo exactly like my own mother!
  And they dont care about learning how make a bed
  or clean the kitchen anymore they want to be
  retired! They also require more rest, so the 6
  hour out of the home rule in HCS doesnt work for
  them.

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What new types of services do you think will be
needed to respond to the needs of persons with
MR/DD who are aging?

• Improve guardianship services
• Coping skills and frustration tolerance skills
• Educate workforce, particularly home health
  agencies staff
• Several responses centered around need to keep
  individuals independent by providing the same
  types of traditional community services for
  persons with physical disabilities
• Funding measures should be put in place
  that help support them in their current placement
  for as long as possibleIf we dont like
  institutions like nursing homes, ICFs-MR make
  much better fiscal and philosophical sense.
  Least restrictive, more home-like and yet
  institutional enough to provide adequate staffing
  to meet medical and supervisory needs.

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Are there other comments you would like to make
about services for this population?

• Need for senior center, housing, transportation
  and drugs.
• We had better get a move on and address these
  issues. I am in the largest class in the world
  the with with the most population ever, 1957
  and I aint getting any younger. That means that
  the large group the shares my birth date is
  rapidly approaching senior citizen status and we
  will have a mighty big service crisis on our
  hands if we dont act now
• Its not just MR/DD!!!! People with identical
  disabilities acquired after age 21 have the same
  needs. And what about age-related disabilities.
  Lets not restrict the scope of this survey, that
  would produce a skewed, inaccurate picture

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Aging with disability may be an issue for persons
other than those with MR or DD. Do you know of
any special issues, programs, or policies that
would be important to aging with adult-onset
disabilities?

• Engage in meaningful activities
• TBI and stroke survivors may develop behavioral
  challenges
• Persons with mental illness have the same
  concerns
• I do not know of any services for
  individuals with closed-head injuries, stroke, or
  other adult onset disability. I frequently get
  placement calls that are very sad because people
  cannot find help for their loved ones with these
  diagnoses. They have even less to choose from
  than those with MR. Many end up in nursing
  homes--although they are chronologically too
  young to be there.

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The Arc Position Statement

• As they age, our constituents must be recognized
  as respected members of the community. Services
  to people who are older must accommodate the
  supports needed by this population.
• Our constituents who are growing older should
• Be afforded the same rights, dignity, respect,
  and opportunities as other older people in their
  communities.
• Have access to housing, health care, social
  services, transportation, and other services
  available to older Americans in their
  communities.
• Receive supports to live, work, play, and retire
  when, where, and how they prefer.
• Be free from the fear of inappropriate
  institutionalization due to age-associated
  decline or infirmity.
• Have access to pension plans that include the
  same payment provisions afforded other retirees
  or to alternative financial supports available to
  older persons who no longer work.

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The Arc Position Statement, continued

• Public policy considerations include
• Legislation and regulations affecting older
  Americans should refer distinctly to the
  eligibility of our aging constituents.
• Programs that support caregivers of older people
  with disabilities should include support of older
  parents who are the primary caregivers for their
  adult children.
• Federal and state resources should vigorously
  support research and best practices to meet the
  needs of older persons with disabilities.
• Professionals should be prepared to deal with the
  issues related specifically to our aging
  constituents.

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What are the key issues from your perspective?
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Day to day, is the issue of serving the MR/DD
population growing in importance in your world?

• Are individuals not served by MR/DD system ending
  up in the Aging Network?
• How many individuals with MR/DD are you serving
  under the Older Americans Act?

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Do you know of any programs, in Texas or
elsewhere, that are designed to serve the needs
of people with MR, DD or other disabilities who
are aging?

• Is anyone doing a particularly good job under the
  NFCSP?
• What do you believe are the barriers to more
  effective programs in the Aging Network for
  serving persons with MR-DD?
• What are the opportunities?

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What do you think are the most important issues
for the aging of persons with MR/DD?

• Stigma?
• Training?
• System capacity in either the Aging Network or
  MR-DD systems?
• Ability to coordinate and integrate with MR-DD
  system?

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Do you know of any policies currently in place in
Texas that specifically make it difficult to
provide appropriate services to persons with
MR?DD?

• What does DADS need to do to make it easier for
  you to more effectively serve persons with MR/DD?

What new types of services do you think will be
needed to respond to the needs of persons with
MR/DD who are aging?
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Are there other comments you would like to make
about services for this population?
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To provide further thoughts or to get a copy of
the presentation, contact me at

• Karl.urban_at_dads.state.tx.us
• 512.438.4347