Family Caregivers Of Children And Adults With Mental Retardation/DD

Sharon Davis
The Arc of the United States
Who Are the Older Caregivers?
Parents, grandparents, other relatives, friends
Grandparents caring for grandchildren with disabilities
Two generation elderly families (older parents caring for adult children over 60)
People caring for older parents as well as son/daughter with a developmental disability (three generation families)
How Many People Are We Talking About?
Approximately 480,000 adults with developmental disabilities live with a parent(s) over age 60.
At least 47,000 people with DD live with a sibling.
2.1 million children live with grandparents with no parent present.  A significant number have disabilities.
Up to 1/2 of older families caring for a family member are unknown to either the aging or DD service system.
Examples of Caregivers
A 92 year old widow who lives with her 62 year old son with DD on a rural homestead
A grandmother in her 70s who is the sole source of support for her grandson age 16 with cerebral palsy
A 65 year old widower who is the primary caregiver for his 28 year old son with Down syndrome
A sister 72 who cares for her sister with mental retardation who is 67

What Are the Challenges in Providing Assistance to Older Caregivers?
Reluctance of some elderly families to become associated with the DD system
Failure to anticipate that their son or daughter with a disability will outlive them
Strong interdependency between carers and their son or daughter with a disability
Inability of elderly carers to reflect on their own aging and plan for themselves or for their offspring
Lack of coordination between services and needs of families
What Are Families' Needs?
Services for immediate needs, such as respite, housekeeping, transportation
Help with obtaining financial supports and determination of eligibility
Help with obtaining financial planning information, such as entitlements, guardianship, trusts
Help with negotiating the service system and advocacy for obtaining services

What Are Families' Needs? (cont.)
Assistance with obtaining Medicaid and working out problems with social services agencies
Help with making decisions about their lives or the life of the person for whom they are caring
Why Are Some Families Reluctant to Seek Help?
They don't want unnecessary intrusions into their lives.
They worry that their son or daughter will be taken away from them.
Many older carers have not had services available to them.  Years ago, the only service option was the institution.  Schools excluded most children.
Why Are Some Families Reluctant to Seek Help? 
They have had past negative experiences with the disabilities service system.
They have difficulties talking with service providers.
Agencies often function in a complex and impersonal fashion.
How Do Caregiver Issues Differ for Families Caring for a Person with DD vs. Families Caring for Aging Parent?
Caregiving is lifelong duration.
Caregivers are unlikely to outlive the family member with a disability.
Families must plan for the future of the person they are caring for who will outlive them.

How Do Caregiver Issues Differ? (cont.)
Families are often reluctant to acknowledge the inevitability of their own passing and do not make future plans for their family member.
A crisis means an aging or a DD agency is called on to assist the family.
Both the aging system and the DD system can help families.
Why Should Aging Agencies Help Families Caring for an Individual with DD?
Such older persons are a natural constituency of the aging network.
Under the Older Americans Act, aging agencies have an obligation to aid this population.
Many of these caregivers have provided lifelong care that might otherwise have been state responsibility, and now need aid in their own lives.  

Why Should Aging Agencies Help? (cont.)
By not helping, the problem can eventually become more costly for the community.
Emergency care may be expensive, difficult to find and require extensive staff resources.