A Researcher's Advice to Families of Adults with Disabilities: Plan ... Plan ... Plan

by Nicole Bruce

Your Eldercare Consultants, CJE’s team of geriatric care managers, are often called by family caregivers to help navigate the evolving needs of their older parents. But sometimes, the situation can be reversed. With February’s Jewish Disability Awareness Month on the horizon, we’re reminded of a startling statistic: Over 71% of adults with intellectual and/or developmental disabilities (IDD) live with their families, and of those roughly 3.5 million individuals, 24% live with caregivers aged 60 or older*.

In light of policy changes directly affecting long-term and community supports for this vulnerable population, we touched base with Tamar Heller, Ph.D., who is well-known for her expertise on this issue. She has been an invaluable resource to CJE’s Linkages program, which assists older adults caring for adult children with disabilities. We asked Heller to address a few questions for families at the initial planning stage.

Q: Why is planning for the future so important for families of individuals with disabilities?
A: There are many reasons why planning for the future of an individual with disabilities is so important, and why families with aging caregivers are so anxious about it. Most people don’t really want to think about their own mortality, or about what it’s going to be like when they become more frail. Certainly, there are also many fears that no one will love their child like they do, and they don’t want to burden their other children or family members. However, siblings often become the primary caregivers, and communicating intentions for financial, healthcare, residential, and social arrangements with other family members as well as the individual with disabilities is important.

Q: Planning for the future can be a long and challenging process. As a family, what are some things we can do to make the transition easier?
A: Meet as a family to initiate a conversation about the future even if you might not be ready to make decisions yet. If possible, speak with the person with a disability first to understand what he or she wants in life. Also, ask all family members what they envision for the future. Many family caregivers report that they are the sole providers of social and recreational support to their family member with disabilities. Planning ahead can expand the “network of care” so that the person with disabilities is not only dependent on family members, particularly aging parents.

Q: Is there a checklist of items we should discuss together?
A: Limited access to financial and legal information and a lack of understanding about local health and human services can make planning ahead a challenging undertaking for many families. Legalities can vary from state to state, but a general guideline is to:

  • Ask your family member with a disability what he or she would like for the future.
  • Ask other members of the family (parents, siblings, aunts or uncles, etc.) what they envision for the future.
  • Identify a health care proxy agent and have a health care proxy form signed for your family member with a disability.
  • Appoint a successor caregiver or multiple caregivers sharing the responsibility.
  • Identify the eligibility requirements for services your family member with a disability currently receives.
  • Explore residential options and secure a future residence for your family member with a disability.
  • Create a will, stipulating a Special Needs Trust, if applicable. Tell all family and friends in the care network about the trust so they are aware of assets to be left behind.
  • Discuss supported decision-making options, including power of attorney, partial or full guardianship, or financial counseling for your family member with a disability.
  • Develop a Letter of Intent detailing your family member with a disability’s wishes for the future.

Q: What is a Letter of Intent?
A: While it’s not a will, a Letter of Intent details the optimal and acceptable conditions of living for the family member with a disability and can be a road map for families as they plan for the future. It should be updated yearly, and can include such information as:

  • Emergency information.
  • Expressing wishes for the future.
  • Deciding where to live.
  • Financing the future.
  • Employment, retirement and daily activities.
  • Supporting daily and major life decisions.
  • Making social connections.
  • Healthcare and wellness.

To find out more about Linkages, call the Linkages Line at 773.508.1106 or email Linkages@cje.net. See the calendar for details about our annual Policy, Advocacy and You event on February 25.

Our team of geriatric care managers, Your Eldercare Consultants, is an excellent resource for older adults with children with disabilities and for families exploring options during life’s transitions. They are available for consultation about all of your caregiving needs. Visit them at YourEldercareConsultants.com or call 773.508.1015.

Tamar Heller, Ph.D. Distinguished Professor, heads the Department of Disability and Human Development, University of Illinois at Chicago and its University Center of Excellence in Developmental Disabilities. She also directs the Rehabilitation Research and Training Center (RRTC) on Developmental Disabilities and Health, is Co- Principal Investigator of the RRTC on Community Living Disability Policy and the Family Support RTC, and co-founded the national Sibling Leadership Network. Her research interests include life transitions faced by individuals with a disability and their families and later life family caregiving. Please go to http://www.rrtcadd.org/blog/ files/category-families.html for more information on the Rehabilitation Research and Training Center on Developmental Disabilities and Health and for additional resources on families and disabilities.

*Braddock et al., 2015; Fujiura, 2012; Larsen et al., 2001.