“My son is going to turn 18 next week. I’m just trying to look ahead to the future. His sisters are in college, so we are always discussing with them the family needs, but we don’t want to put it all on their shoulders for when my husband and I are no longer around.”
It doesn’t need to be fancy!
If you don’t have a future support plan in place yet, don’t worry. It doesn’t have to be formal. You can write your plan in a simple notebook this afternoon. What really matters is that you start it!
Start small and start with what you know.
Here are some tips for getting started:
1. Involve the person receiving support in the planning process
Assist them, if needed, in identifying what supports need to be in place, and what role friends and family members will have in either sharing in their future care or securing other services to provide the necessary support. Sometimes these conversations with family members can be sensitive. If it feels too difficult, consider asking for the support and guidance from an advanced care planning facilitator, someone who can help everyone feel safe, heard and supported.
2. Identify a backup care partner
Speak with the family member with a disability or have a family meeting and identify someone to be the backup care partner. Having a legal Power of Attorney, one for healthcare decisions and one for financial decisions, is advised. However, even without a power of attorney, it is important that everyone in the person’s circle of support understands who will step in to help if the current primary care partner is no longer able to provide support.
3. Start with a vision of a good life
What does a good life look life for your family member who has a disability? Ensure ‘the vision’ focuses on the wishes of that person for the life they want. Explore and gather information with them about what contributes to them feeling happy, content, and fulfilled. Then organize that information into a one-page profile or a person-centered description.
To make this information clear and useful try exploring these kinds of questions:
- Who are the most important people in this person’s life? How often do they see them and what do they do when they’re together?
- What would make a good day for the person? What would make it a bad day?
- What does the person usually do each day or week that they would miss if they didn’t do?
- What makes the person stressed, unhappy or upset and how would others know? What could others do to help?
- What are some of the things the person can’t do without, the possessions they value and treasure?
- What are some of the cultural beliefs, values, or traditions that are important to your family member?
- What’s important to them now and in the future?
4. Start making a list of care partner duties
Sometimes caregivers don’t realize all the things they do to support a person. Start outlining the details of your family member’s day-to-day routines and what support they may need throughout the day.
Do they have a medical condition? Write it down, along with contact information for healthcare professionals.
Do they follow a particular diet? List the foods they can and cannot eat as well as foods they like and dislike.
Do they take prescription medications? Keep an updated list of drugs and dosages and include any tips for administering them.
Do they experience chronic depression or irritability and confusion at nighttime? Describe their emotional health and what good support looks like at these times.
Do they need help with cooking, cleaning, doing dishes, laundry, and paying bills? Describe how they like to be helped and when.
Do they have the ability to bathe and clean up after using the bathroom? Describe how they prefer to be assisted if they require help.
What is their physical activity level? Describe the activities they enjoy and what is needed to help them to be healthy and happy.
5. Begin early!
It’s never too early to start planning for future supports for your disabled family member. The plan can be updated as their wants, needs and interests change.
6. Build relationships outside of the family home
Building a network of caring relationships around someone with a disability can help your family member to have continued connection, belonging, safety and security. As relationships grow, one of these trusted partners may be willing to take on the role of healthcare power of attorney or other form of support in the future.
7. Some things to include in a caregiver succession plan are:
- Future living arrangements
- Care partner responsibilities
- Legal considerations (e.g., guardianship, power of attorney and property management)
- Financial considerations (securing a financial future for your disabled family member including employment, trusts, benefits)
- Making sure whoever will be involved in future care arrangements is informed of all the support agencies or networks currently in place
- What good support looks like as defined by the disabled family member. Remember to consider how to support the person through this time of transition
These can be difficult conversations to have and decisions to make. It is ok to ask for help!
Planning for the care of your loved one in the future can feel overwhelming. And you do not have to do it alone. Ask your regional center or area agency on aging for information about future care planning. H S A can also help support you by providing an advance care planning facilitator to support your family through this process.
If you are in a support role you may be interested in our upcoming training program, Person-Centered Approaches to Healthcare Decision Making click here to learn more or contact [email protected] to discuss your planning needs.