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The Aging of Persons With Mental Retardation and Developmental Disabilities

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Texas Council for Developmental Disabilities Biennial Report ... Legacy Texas Department of Aging focused on persons who are aging ... – PowerPoint PPT presentation

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Title: The Aging of Persons With Mental Retardation and Developmental Disabilities


1
The Aging of Persons With Mental Retardation and
Developmental Disabilities
  • Karl Urban
  • Manager of Policy Analysis and Support

2
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

3
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

4
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

5
(No Transcript)
6
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

7
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)

8
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

9
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

10
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

11
What We Have Learned Thus Far?
12
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

13
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.
14
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.

15
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

16
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

17
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)

18
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

19
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

20
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

21
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.

22
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.

23
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.

24
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

25
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.

26
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.

27
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.

28
What are the key issues from your perspective?
29
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?

30
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?

31
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?

32
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?
33
Are there other comments you would like to make
about services for this population?
34
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
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