# Presentation: 237423

## National Family Caregiver Support Program

- Older Carers with a Child or Adult with a Developmental Disability at Home
- Matthew P. Janicki, Ph.D.

## Developmental Disabilities

- Conditions originating at birth, infancy, early childhood, or during developmental period
- Posing hindrance to typical growth and development – impairing social, vocational & economic functioning
- Lifelong nature – expected to last through to old age
- Categorical vs. functional perspective

## Intellectual Disabilities

- Below normative intellectual functioning, due to cognitive impairment (organic or functional) present since birth or infancy
- Vary in degree and co-impairment
- Compensation by training, education, remediation, habilitation, supports for    life activities

## Dementia vs. ID

- Intellectual disabilities involve undeveloped or underdeveloped mental or intellectual skills and abilities
- Dementia is a widespread _loss_ of mental or intellectual skills and abilities from previous level of ability
- _Key_ – behavioral presentation may be similar, but it’s the _loss_ from previous level of function that differentiates the two

## Older Population –Adults w/ID

- Currently about 75% of all older adults with intellectual disabilities are in the 40-to-60 age group.
- Expectations are that the 60+ age group will increase _threefold_ over the next 20 years.

## Persons with DD Living with Family Carers

- 	Estimates are that there are some 480,000 adults age 60+ living with family
- 	Some 665,000 are age 41–59 and their parents are 60+
- 	Source: Braddock (1999)

## Parents of an Adult with DD at Home

- 	age group of household head
- 60+
- 		   41-59
- 		     <41
- Source: Fujiura (1998)

- 	average age of DD household member
- 		38.4 years
- 21.9 years
- 13.6 years

## Family Data AAA Outreach Study

- Of primary (ID) carer families in NYS
- 63% caring for member age 35-44
- 33% caring for member age 45-64
- 3%  caring for member age 65 and older
- Of 294 (ID) families found during outreach
-  45.9.1% were unknown to the “system”
-  55.3% of carers were mothers
-  68.4% of carers were age 60+
-  22.6% of carers were age 75+
- (Janicki et al., 1998, J. Aging & Social Policy, 10, 13-36)

## Demographics of Older Adults

- “Rule of thumb” estimates are that for every 1000 older adults – _age 60+_ - there are 4 to 5 adults with an intellectual or developmental disability
- Estimates are that there are some 140,000 adults with ID/DD affected by _dementia_ in the United States

## Some Facts

- Some 1.9 million persons with developmental disabilities are estimated to live at home or with a family caregiver
- Some 25% of these caregivers are age 60 or older
- A significant portion of in-home supports are being provided by family caregivers who will be aging beyond their capacity to provide care over the next 10 to 20 years

## 	Ageing and Intellectual Disabilities – Improving Longevity and Promoting Healthy Ageing

**The WHO Reports**

## Aging Needs – The WHO

- Helping adults with motor impairments affected by aging
- Improving and increasing geriatric assessment capacities
- Aiding older families
- Health promotion and enhancing accessibility
- End-of-life supports
- Elder and older age housing

## Differences Between These Families and Other Carers

- _Complexity_ of the problems that such families or households often face
- _Vagaries_ of financial resources—that is, the unreliability or unpredictability of public funds underpinning any support effort
- Household _composition_ and carer relationships
- The kind of _help_ these families need to face the inevitable end of their caregiving role

## Carers of Persons with ID/DD

- _Younger Age Carers (<70)_
- Parents or grandparents in their 60s
- Third age issues
- _Primary focus on helping carers plan_ for s/d (financial & transition planning, social-vocational programs, housing)
- Challenge: Supports for planful transition for s/d

- _Older Age Carers (70+)_
- Parents or grandparents in their 70s-90s
- Fourth age issues
- _Primary focus on carers_ _own needs_
- 	(health, housing, & social supports issues)
- Secondary focus on s/d
- Challenge: Avoiding precipitous housing for s/d

## Community Supports

- Supporting at-home care
- Physical barrier removal
- Help with transportation
- Access to senior services
- Counsel on financial aid & benefits
- Medical/health services  intermediation

## Older Parents Want . . .

- To maintain independence
- Reticent to be drawn into disability system – fear of re-institutionalization
- Help defined on their own terms
- To ask for help when feel it is needed
- Help for self – then help for son or daughter

## Supporting Families and Carers

- Most adults with disabilities live with parents or other carers – the “two generation elderly family”
- Such families are “perpetual parents”
- Parents/carers may need help . . .
- Aid with dementia care and frailty
- Transition planning
- Supports for the person with disability

## State/Provider Structure

- State ID/DD agency
- Private Providers
- Parent based voluntary agencies (e.g., the Arcs)
- Board based not-for-profits
- Quasi-government providers
- Agencies provide:
- Housing
- Case coordination
- Adult day care and day activity services
- Employment supports
- Health care and assessments

## Opportunities for Collaboration

- Local coalitions
- Interagency agreements
- Interagency information and referral
- Sharing resources
- Adult day services
- Transportation
- Housing
- Case coordination/management

## Supporting Older Carers

**Older families are an important resource** for someone with a lifelong disability - they need to be supported to “keep it together”
**Older families are aging** - they will need supports for their own aging and help with their caring responsibilities
**It’s more productive to have the aging and disabilities agencies work together** – partnering to do outreach, case work and provide services is more economical, efficient, and helpful

## Resources

- Websites
- www.arc.org
- www.uic.edu/orgs/rrtcamr
- Technical materials
*Help for Caring – for older people caring for an adult with a developmental disability   *(NYS DDPC, 155 Washington Avenue, Albany, NY 12223)