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					The Gift of Time:
The Intersection of Aging
and Lifelong Disabilities
 Conference on Independent Living, June 10, 2010

          Edward F. Ansello, Ph.D.
          Virginia Center on Aging
     Virginia Commonwealth University
eansello@vcu.edu (804) 828-1525 www.vcu.edu/vcoa
Things are seldom as easy as
you’ve been told
Nor as difficult as you’d feared


                  The Chronicles of Ed
    Overview
   Gift of Time: The Phenomenal 20th
    Century
   New reality of aging with lifelong
    disabilities; major reasons and
    consequences
   Common links between systems:
    invisibility, strained resources,
    inadequate geriatric triangulation, family
    caregivers
   Differences between currently older (50+)
    and younger adults with ID/DD
    Overview
   Challenges and Opportunities
   Common focus: Family caregivers
    need the “Three Rs”
   Intersystem coalitions in practice
   Keys to making coalitions work
     The Future Ain’t
     What It Used To Be
   Increased life expectancy is affecting
    both lifelong and late-onset disabilities
   Our “consumers” are drawing us toward
    intersection
   We don’t want a crash
   We want to work smarter not harder
        Unprecedented Changes in
        “The Way It Used to Be”
   Wide broadcast of the “gift of time”
     Decreased mortality across later life

     Increased numbers with disabilities in later life, but

      prevalence may be down
     Prolonged survival with late-onset disabilities

     Increased survival with lifelong disabilities




   Human development and the process of individuation
           A Snapshot
   The number of older (60+) adults with lifelong,
    developmental disabilities is growing, accounting
    for at least 1 in 100 today. “The DD Umbrella”
   Most older adults with intellectual disabilities live in
    the community with their families
   Two-generation geriatric families are becoming the
    norm for currently older adults with developmental
    disabilities
An Appraisal of the Status Quo
•   Chronic care by families is a value
    common to the fields of aging and
    disabilities, lifelong and late-onset
•   Older parents caring for aging children
    are being “discovered” by the Area
    Agencies on Aging (AAAs)
•   Plans for continuation of care tend to be
    absent or need assistance
     An Appraisal of the Status Quo

   These families tend to value their independence,
    underutilize existing resources, and fail to make
    permanency plans
   The aging and developmental disabilities systems
    of researchers, educators, and providers have little
    history of meaningful interaction
   There are examples of intersystem cooperation
    that may serve, wholly or in part, as models
Common Links
   The thrust in both aging and disabilities is
    toward more and more local arenas of
    operation
   Human services agencies regularly face
    shortages in good economic times and in bad
   Client “invisibility”
   Inadequate geriatric triangulation
   Family caregivers
   Client health/well being
Common Obstructions
   Misunderstandings across
    networks/disciplines
   Network/discipline jargon
   “Regulations” (e.g., liability !!)
   Funding requirements
   Fear of losing (defending “turf”)
The Two-generation Geriatric
Family Comes of Age

   Four-generational families
   Two-way assistance with lifelong
    and late-onset disabilities
   Impact of family caregivers on
    longevity of care recipients
   Common need for health promotion
    for caregiver and care recipient
    National Survey of State Units on Aging
    and Developmental Disabilities
    Regarding Their Hot Button” Issues


•   Fragmented services, especially among
    the developmental disabilities (DD)
•   Aging with DD is a non-issue
•   Reactive rather than proactive practices
    by agencies—those who make noise….
Life Expectancies of Invisible
Older Adults Have Increased

   CDC study finds median life expectancy of
    adults with Down syndrome grew from 25 yrs
    in 1983 to 49 in 1997 Yang et al.,The Lancet, 23 Mar 02
       Increase is 8 times national average
   Adults with non-Down intellectual disabilities
    or with other developmental disabilities now
    have life expectancies close to mainstream
    population
   Contributing factors include family caregiving
    and medications for common mid-life
    conditions
Shortage of Geriatrically Trained
Physicians,Nurses, Pharmacists
   There are some 700,000 licensed
    physicians in the United States
   Some 7,000 have “Certificates of Added
    Qualifications” (CAQs) in geriatrics
   There are critical shortages in the
    numbers of geriatric nurses, from R.N.
    to nurse assistant levels
   There are few with triangular expertise,
    i.e., aging, medical specialty, lifelong
    disabilities
The Gift of Time: Challenges
   Two-generation geriatric issues
   Fear of the unknown
   Transitions in care across longer life course
   Living beyond the training mode
   Permanency planning
   Meaningful retirement
    •   Common need for assisted autonomy
The Gift of Time: Opportunities
   A fuller life for our children
   Multi-directional care (between generations
       and between service systems)
   Help for family caregivers
   Grassroots initiatives
   Coalitions (inter-system and inter-segment)
   Best practices
    • Common need for creative approaches
Why Haven’t We Worked Together?
Barriers to Intersystem Cooperation

   Differences in perceived benefits
   Tree versus forest mentality
   Restrictive mental geography
   Shortage of crossed-trained personnel
   Absence of clear-cut goals
   Lack of a non-threatening (neutral)
    broker
For the disabilities system,
    aging is a success.
For the aging network,
    disabilities is a failure.
Why Should We Work Together?
Benefits of Intersystem Cooperation

   Broader range of options for individual,
    caregiver, planner, and provider
   Reinforced self-care
   Cost-effective resource sharing
   Reciprocal (often no-cost) cross-training
   Preparation and skills development for
    future needs, benefiting all involved
One to the Tenth Power
Is Still One

The Wisdom of Connections:
•   Creative marginality
•   Foremast lookout
•   Advocacy in “hard times”
    (It’s always hard times)
    Coalitions: An Answer
   Coalitions between advocacy groups and
    agencies, and between agencies across
    systems (aging, ID/DD, late-onset, health,
    social services, religious, recreation) can
    improve services, produce savings, and
    reinforce families and people with
    disabilities.
   Coalitions are time-limited
   Coalitions can be laboratories for public
    policy development
    Maintaining Health with Lifelong
    Disabilities across a New Life Expectancy:
    The Individual
   Lifelong health a new issue
   Exercise and fitness
   Health knowledge by individuals
   Behavioral adaptation to functional losses
   Improved assistive technology
   Well-being and spirituality
•    Need for advocacy and to learn from
    late-onset
Family Caregivers Need
  Recognition
  Reinforcement

  Reliable resource
     The Overlooked Caregiver:
     Putting Life on Hold

   Parent’s focus has been on his or her child
       Marriage may be affected; “age-less” mentality
   Perennial parenting (caregiving) wherever the
    child is living
       At home or away
   Postponed mid-life self-analysis
       A key for one’s own continued growth
   Use the energy that overcame obstacles
       Focus inward
    Family Caregivers Tend To:
   See themselves as ageless
   Take great pride in their independence
    and self-sufficiency
   Keep to themselves how much they do
   Be under-appreciated for their role in
    long term care
   Fail to make realistic plans for
    continuity of care
Family Caregivers Need:
Recognition
   Family caregivers provide the overwhelming
    majority of chronic care to individuals with
    disabilities, whether life-long or late-onset
   Family caregiving is one of the main
    contributors to the increased longevity of
    persons with lifelong, developmental
    disabilities and the well being of adults with
    late-onset disabilities
Family Caregivers Need:
Recognition
   Family caregivers are the unrecognized core
    of the long-term care system
   Family caregivers save governments (local,
    state, federal) billions of dollars in chronic
    care costs
   Recognition is the least tangible of the needs
    of family caregivers, but it sets in motion
    ways of meeting the other needs of
    reinforcement and reliable resource
Family Caregivers Need:
Reinforcement

   Family caregivers need added skills and
    knowledge to continue doing what they
    want most, to be left alone
        Family Caregivers Need:
        Reinforcement
   Family caregivers need training on matters
    related to aging with developmental
    disabilities or aging with late-onset, such as
       Conditions and impairments
       Self-health
       Environmental press
       Community resources
       Advocacy
       Probate, entitlements, and special needs trusts
Family Caregivers Need:
Reinforcement
   Often, family caregivers have
    postponed their own “mid-life crises”
    and other recognitions of their own
    aging. As a result, permanency planning
    (“futures planning”) is not common
Family Caregivers Need:
Reinforcement
   It would be fiscally prudent to
    strengthen the capacities of family
    caregivers to continue their caregiving
   For policy makers, potential avenues of
    strengthening family caregivers include:
       Caregiving stipends or grants
       Tax deductions
       Tax credits
       Service credit banking
Family Caregivers Need:
Reliable Resource
   Family caregivers need information that
    is:
       On various topics (health, insurance,
        government programs, services, etc.)
       Coordinated, rather than scattered among
        various locations
       Reliable, coming from a source that is likely
        to be there when needed
Family Caregivers Need:
Reliable Resource
   Aging and disabilities agencies
    overestimate the likelihood that family
    caregivers desire and will take direct
    services from them
Barriers to Intersystem
Cooperation
   Little or no history of interaction
   Differences in perceived benefits
   Tree versus forest mentality
   Restrictive mental geography
   Shortage of crossed-trained personnel
   Absence of clear-cut goals
   Lack of a non-threatening (neutral)
    broker
Creating the Climate for
Partnerships
   Several previous projects brought
    aging, lifelong disabilities, and other
    systems together for cross-training on
    priorities, funding streams, practices,
    resources
   Partners III enabled local partnerships
    to field-test a model for collaboration
    suggested by these experiences and to
    report feedback and improvements
Potential Roles for Academics
   Neutral broker
   Convening site
   Trainer
   Source of interns/ practicum students
   Evaluator of outcomes; researcher
   Developer of aging with disabilities curriculum
   Innovator
    Potential Benefits for
    Academics
   Real world focus
   Academe-community partnerships
   Intern/practicum sites for students
   External advocates for the gerontology
    unit
   Grant or project development
   Cutting edge subject matter; FTEs
    Model Projects Led by Academic
    Gerontologists
   The Oneida-Lewis (NY) Coalition
    (Lucchino)
   The Florida Project: ADDIE and FLAG
    (Sherman and Bloom)
   The Texas Project (Stone)
   North Carolina Task Force’s Blueprint
    (Baumhover and Folts)
   The Partners Projects in Maryland and
    Virginia
     (Ansello et al.)
       Oneida-Lewis Coalition’s Processes
   Facilitator from local college’s institute on gerontology
   Core group of people who would remain stable within the
    coalition, including consumers, service providers,
    administrators, representatives from public and private
    agencies
   Prospective coalition members received information on
    reason for meeting, short concept paper describing needs
    and proposed goal
   First meeting at local college (neutral site)
     Oneida-Lewis Coalition’s Processes
   Coalition members refined goal and outcomes and
    created subcommittees to address them
   Planning strategy includes planning in stages of 1,
    3, and 5 years
   Coalition had own mailbox and letterhead, and
    was administratively separate from any
    organization that provides direct services
   Coalition continued from the mid-1980s until 2001,
    when it considered its goals to be met
       The Texas Project
The model involves four strategies:
  1.   Coalition building
  2.   Community awareness, identifying
       community resources and gaps
  3.   Interagency cross-training
  4.   Needs assessments of older adults with DD
       and their families

  (Stone, 2000)
      The Florida Model
Rationale:
For service systems to assume a proactive stance to
  aid families:
     Models of service collaboration between aging and
      developmental disabilities service networks must be
      constructed
     Elderly parent caregivers must be identified, their
      needs assessed, participation in service planning
      invited, and supported assistance offered

  (Sherman & Bloom, 2000)
      The Florida Model
   Sought to identify existing capacities of the local service
    systems, as well as the needs of the individuals, and to
    plan collaboratively for services
   Marked the first time in Florida that the aging and
    developmental disabilities service systems worked in
    concert
   Borrowed from attributes of models in Ohio, New York,
    Illinois, Maryland, and Virginia, all of which include some
    degree of grassroots control and incorporate some form of
    collaboration, outreach, and capacity building

(Sherman & Bloom, 2000)
 Project FLAGS          (Florida Local Action Group)

Objectives included:
  1.   Cross-training
  2.   Coordinate strategies to bring older adults with
       disabilities into aging network programs while
       retaining disabilities services
  3.   Identify older adults with DD, whether served or
       not, who could benefit from aging services
  4.   Recruit mentors for older adults with DD to
       facilitate their transition into senior programs
  (Sherman & Bloom, 2000)
 Partners I, II, III in Maryland
 and Virginia: 1986-1997
Identified the key elements of effective
   intersystem cooperation as (1) formal
   mechanisms for collaboration at local
   and state levels, (2) diverse outreach
   strategies by local coalition acting as a
   virtual organization, and (3) capacity-
   building opportunities for staff,
   caregivers, and consumers
Identified central roles for neutral brokers
      Partners III Project: The
      Integrated Model of Services

   Assembled best practices from several
    previous projects
   Created and field-tested with AoA support
     a model for cooperation between the aging
     and developmental disabilities systems
   Evaluated results in urban, suburban,
     and rural settings: Evidence-Based
 Partners III Project: The
 Integrated Model of Services


1.   Collaboration
2.   Outreach
3.   Capacity Building
     Ansello, Coogle & Wood, 1997)
Integrated Model of Service
1.       Collaboration
           Statewide Mechanisms
             Memoranda of Understanding/Agreement
             Professional/Consumer Advocacy Council
              (PCAC)
           Area Planning and Services Committee
            (APSC)

         = essential element
The Area Planning and
Services Committee (APSC)
   The key to partnering, for “all politics is
    local” and effectiveness can be seen
   A new entity, the agent for
    collaboration and any visible
    collaborative activities
   Broad participatory membership going
    beyond the two primary partners-to-be
   Not “owned” by any “side” or any
    special interest
Integrated Model of Service
2.   Outreach
        Resource fair
        Home visitor survey
        Focus groups
        Telephone surveys
Integrated Model of Service
3.   Capacity Building
        Cross-Training of Staffs
        Training in Self-Care and Advocacy
         for Consumers and Informal
         Caregivers
        Integration of Older Adults with
         Developmental Disabilities into
         Community Services
        Internships across Systems
 Capacity Building:
 Internships Across Systems

1.   Broker the mini-internships
2.   Set eligibility for participation
3.   Have would-be interns set goals
4.   Specify internship’s length of time
5.   Reciprocate in hosting
6.   Multiply exposures across segments
        Keys to Intersystem Coalition
        Building: (1) Starting
Spark              a champion or zealot
Specific problem   issue(s) to be
                      addressed
Incentive          perceived benefits
Neutral broker     non-threatening
                      matchmaker
Focus              clear cause or purpose
       Keys to Intersystem Coalition
       Building: (2) Succeeding

Objectives   achievable through specific
                tasks and activities
Approvals    top-down and bottom-up
                sanctions
Ownership    members must see the coalition
                as “theirs” and attend
Fit          compatibility with other like-
                minded individuals and groups
        Keys to Intersystem Coalition
        Building: (3) Continuing

Resources       modest but adequate funding
                  or pool of in-kind
Real Members    must be more than just people
                  appointed because they fit a
                  category
Executive       agency heads commit to the
 involvement      coalition, preferably in writing
Channeling      members convey content back
                  to their agencies, reinforcing
                  partnership (minutes, e-mail)
Area Planning and Services Committee
(APSC) in Metro Richmond

   Established in 2003, evolving from two-year
    single county MR task force
   Good mix of organizational members, with
    written commitments; meets monthly all year
   Doctoral student intern, summer 2004,
    helped with initial surveys of APSC
    members/registrants
   Every gets one vote, in theory and in practice
Collaborative Initiatives
   Friendship Café for adults with lifelong
    disabilities
   Healthy Cooking DVD
   Health Baseline Screening Protocol
   Annual conferences
   Training workshops
       Down and dementia; arthritis and co-
        morbidities; healthy heart; exercise
    Aging with Health Needs Series Presents:
Learn & Live with a Healthy Heart
                   November 7, 2008
                   8:30am—3:00pm
                Box Lunch, Exercise tools
                    and Prizes Included
               Deep Run Recreation Center
                  9910 Ridgefield Parkway
                    Richmond, VA 23233
                     County of Henrico
                   Registration fee $15.00
   Sponsored by the Area Planning and Services Committee
              on Aging with Lifelong Disabilities
        Forging New Alliances:
   Within the developmental disabilities
       Autism
       Cerebral palsy
       Epilepsy
       Head trauma
       Mental illness
       Mental retardation/intellectual disabilities
       Orthopedic handicaps
       Etc.
Forging New Alliances:
   With late-onset disabilities
       Alzheimer’s and other dementia
       Blindness/visual impairments
       Communication disorders
       Deafness/hearing impairments
       Parkinson’s
       Etc.
Forging New Alliances:
Next Steps
   With advocates against lifestyle
    contributors to disabilities
       Criminal violence
       Drug abuse
       Drunk driving (e.g., MADD)
       HIV-AIDS
       Poor prenatal care
       Etc.
BONUS: Some Best Practices
and Resources
1.   Health promotion
2.   Health (Physical and Mental)
     Assessment
3.   Cash and counseling
4.   Permanency planning
5.   Caregivers reinforcement
6.   Retirement planning
1. Health Promotion
   Dawna Torres Mughal, PhD, Dietetics
    Program, Gannon University, Erie, PA
    16546 mughal@gannon.edu
   James Rimmer, PhD, The National
    Center on Physical Activity and
    Disability, University of Illinois at
    Chicago 60607 website: www.ncpad.org
2. Health Assessment
   C. Michael Henderson, MD, Dept of Internal
    Medicine, Univ of Rochester School of
    Medicine and Dentistry, Rochester, NY 14642
    chender3@rochester.rr.com

   Sally-Ann Cooper, MD, Dept of Psychological
    Medicine, University of Glasgow, Academic
    Centre, Gartnavel Royal Hospital, Glasgow,
    Scotland G12 0XH
    SACooper@clinmed.gla.ac.uk
3. Cash and Counseling
   Lori Simon-Rusinowitz, PhD, Center on
    Aging, University of Maryland, College
    Park, MD 20742
    LS119@umail.umd.edu
    website: www.umd.edu/AGING
   Home and Community Based Services
    Resource Network website:
    www.hcbs.org
 4. Permanency Planning and
Support

   Christine Bigby, PhD, School of Social Work &
    Social Policy, LaTrobe University, Bundoora,
    Victoria, 3083, Australia
    C.Bigby@latrobe.edu.au
   National Academy of Elder Law Attorneys
    website: www.naela.com
   Family Caregiver Alliance, 690 Market St., San
    Francisco, CA 94104 (415) 434-3388 website:
    www.caregiver.org
5. Caregivers Reinforcement
   Family Caregiver Alliance, 690 Market
    St., San Francisco, CA 94104 (415) 434-
    3388 website: www.caregiver.org
   TheArcLink, information on providers,
    advocacy, opinions, state-specific
    services, etc: www.TheArcLink.org
6. Retirement Planning
   Harvey Sterns, PhD, Institute for Life-
    Span Development and Gerontology,
    University of Akron, Ohio 44325 (330)
    972-7243 hsterns@uakron.edu
   Resources on the Web and Toll-free

• Aging-related topics/conditions, National Institute on Aging:
  1-800-222-2225
• Health resources and information from federal and state
  governments: http://www.healthfinder.gov
• International Assoc. for the Scientific Study of Intellectual
  Disabilities (IASSID): www.iassid.org
• National Center on Physical Activity and Disability:
  www.ncpad.org
• Research on health, nutrition, exercise, etc from the New
  England Journal of Medicine: http://www.nejm.org/content
• Trends in health & aging: www.cdc.gov/nchs/agingact.htm
• Virginia Center on Aging: www.vcu.edu/vcoa

				
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