Understanding the Barriers to Future Care Planning

“I want him to live where he will be safe and loved,” shared an elderly mother regarding her 55-year old son who has an intellectual/developmental disability.

She spoke from her heart at a community listening session on Future Care Planning that I facilitated recently to learn about the future care planning needs of family carers who are supporting adult children with intellectual/ developmental disabilities.

This expression of love, worry, and overwhelm is one I hear frequently from parents and siblings who are supporting adult family members with intellectual/ developmental disabilities and wanting to prepare for the future.

Parents are keenly aware of the need to future care planning or at the very least have preferences for what they would like to occur when they are no longer able to provide care for a family member. However, they voiced a range of barriers to this process.

Two over-arching themes emerged as barriers to future care planning:

1. Concerns about available, age-appropriate, person-centered services.

  • Parents expressed concern that service providers did not fully understand how to personalize supports to meet the needs of a family member. Parents and siblings often have so much information about what matters to a family member and best ways to support them. This information is rarely shared in a way that can assist service providers and other care partners to get to know someone well.
  • Others expressed concern about the growing complexity of care that is needed to support their adult children who are starting to experience age-related health conditions of their own. “I wish I could get help in finding a physician who knows about the health needs of older people with Down Syndrome and Dementia.”
  • Some parents seek new and innovative activities as alternatives to traditional day programs that may not address the needs or interests of older people.

2. Sense of overwhelm, lack of information and mutual dependency

“He’s lived in this home with me since he was an infant,”

“I’m worried. I’m scared. I don’t know what to do. I don’t know where to go from here. I don’t know about tomorrow.”

Many parents said they don’t know where to start. They seek resources, information, and facilitated guidance through the steps of future care planning, and advance care planning for themselves and for their loved ones.

“I’ve spent my whole life providing for her care. I can’t imagine anyone else being able to care for her in the way that I do. And then, what will I do with myself if that is no longer my role?”

Conversations about future care planning can be difficult.
Three ways to make it easier:

  1. Understand the fears and challenges aging care partners are facing
  2. Work with an experienced facilitator who can be a neutral party when navigating family dynamics
  3. Educate yourself about the steps and process and available resources.

If you would like to learn about future care planning and build your skills for starting these conversations in a thoughtful and purposeful way consider joining Person Centered Approaches to Healthcare Decision Making