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 Universityeansello@vcu.edu (804) 828-1525 www.vcu.edu/vcoa

Things are seldom as easy as you’ve been toldNor 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 lifeDecreased mortality across later life Increased numbers with disabilities in later Increased numbers with disabilities in later

life, but prevalence may be downlife, but prevalence may be down Prolonged survival with late-onset disabilitiesProlonged survival with late-onset disabilities Increased survival with lifelong disabilitiesIncreased survival with lifelong disabilities

Human development and the process of Human development and the process of individuationindividuation

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 The Two-generation Geriatric Family Comes of Geriatric Family Comes of AgeAge

Four-generational familiesFour-generational families Two-way assistance with lifelong Two-way assistance with lifelong

and late-onset disabilitiesand late-onset disabilities Impact of family caregivers on Impact of family caregivers on

longevity of care recipientslongevity of care recipients Common need for health Common need for health

promotion for caregiver and care promotion for caregiver and care recipientrecipient

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 ProjectThe model involves four strategies:

1. Coalition building2. Community awareness, identifying

community resources and gaps3. Interagency cross-training4. 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-training2. 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. Collaboration2. Outreach3. 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-internships2. Set eligibility for participation3. Have would-be interns set goals4. 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 zealotSpecific problem issue(s) to be

addressedIncentive perceived benefitsNeutral broker non-threatening

matchmakerFocus clear cause or purpose

Keys to Intersystem Coalition Building: (2) Succeeding

Objectives achievable through specific tasks and

activitiesApprovals top-down and bottom-up

sanctionsOwnership 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, 20088:30am—3:00pm

Box Lunch, Exercise tools and Prizes Included

Deep Run Recreation Center9910 Ridgefield Parkway

Richmond, VA 23233County of Henrico

Registration fee $15.00Sponsored 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 promotion2. Health (Physical and Mental)

Assessment3. Cash and counseling4. Permanency planning5. Caregivers reinforcement6. 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.eduwebsite: 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, AustraliaC.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