Planning Ahead for Care

As a parent or caregiver, “Who will take care of my loved one with 22q and complex care needs in the future” is a common question.

It is always a great idea to plan for the future of your loved one, as best as possible, when you are able to do so. Here are some general tips to help.


  1. Have open, honest and developmentally appropriate conversations about wants and support needs with your loved one. Include, as appropriate, informal (e.g., family and friends) and formal (e.g., community support staff, medical professionals) supports (the “circle of care”) in the conversations.
    • Revisit and modify these advance care plans, as needed (e.g., as the “circle” changes over time).
  2. Educate yourself about who your loved one’s substitute decision maker is now, and who would be best to take on that role in the future.
  3. Educate yourself about community-based and government funding, supports, and services available to your loved one. Connect with local agencies, ask questions, and advocate for supports.
    • Revisit this periodically, as the supports and services change over time.
  4. Connect with a legal clinic that specializes in supporting people with disabilities and their families.

Reassure the individual with 22q that they will be cared for. Remind them who is in their circle of care.

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