Giving Compass' Take:

• Caregivers that are also family members can find it challenging to be well-versed in family and financial planning. Grantmakers in Aging offer solutions that funders can support. 

• Are you aware of the organizations that can help with family planning when you need a caregiver for a family member? What are ways that family members can feel supported when they work as caregivers?

• Besides future planning problems, informal caregivers can face many emotional challenges.

Until the last part of the twentieth century, most people with intellectual and developmental disabilities (I/DD)—diagnoses were typically confined to institutions. Families that had a son or daughter with these disabilities were commonly advised to put them in state hospitals or other facilities rather than raising them at home. Institutions were often brutal and abusive, and did not allow people to learn, participate in their communities, or make choices about their lives.

Today, about 75% of adults with I/DD live with their parents or other family members. This is an important step toward full inclusion for people with disabilities, but it also places the primary caregiving responsibility on parents and other unpaid family members. These families need encouragement and support to plan for what will happen as people with I/DD—and their caregivers—age.

In the U.S. today, there are nearly one million households in which an adult with I/DD is living with caregivers 60 or older. Nationwide, half of caregivers are older than 50, and 10% are 75 or older. Older caregivers spend more hours providing care than younger caregivers.

Thirty-nine percent of caregivers cite lack of information regarding future planning and the steps involved as the greatest barrier to establishing such a plan. Aging caregivers must be supported and encouraged to plan. Planning resources and services must meet the needs of all families, including families from diverse racial, ethnic, and socioeconomic backgrounds.

What are the current programs that are helping?

  • Tailored Resources
  • Implementing Intensive, In-Person Future Planning Training
  • Engaging Siblings as Partners in Planning
  • Addressing Financial Planning

What are trending topics around the issue?

  • Training Professionals to Encourage Future Planning
  • Collaborating with Community Leaders
  • Expanding Financial Options for Families

Read more about the challenges facing caregivers and families at Grantmakers in Aging.