Future Planning & IDD

Future planning can be an emotional and difficult experience, but it’s important to prepare for life changes and how they’ll be managed. It can give you and your care recipient peace of mind, make transitions smoother, and ensure they live the life they want. Some examples of transitions include:

• Your care recipient moving into an adult assisted living facility

• Your aging care recipient requiring a higher level of care and transitioning to a care facility

• Someone else taking over as primary caregiver

• A caregiver or parent no longer being able to provide care

Make It Person-Centered!

Involve your care recipient as much as possible. Consider interests, values, and preferences. If needed, use communication aids to ensure they can express themselves.

Who To Involve

While your care recipient’s wishes should be at the center, others likely need to be
involved, like:

• Parents.

• Siblings. Consider if one of them would be willing and able to become the primary caregiver if something happened to you.

• Extended family members, like grandparents, who are involved in your care recipient’s life.
  Significant others & close friends.

• Legal decision makers, like Power of Attorney (POA) or legal guardians (if these apply to your care recipient). Consider whether you need to create a suitable plan for your care recipient’s preferences.

• Others, like health care providers, legal and financial professionals, social workers, or therapists. These individuals might be able to provide insight into future care needs or plans that should be made.

Expert Tip

If possible, plan for transitions to happen when caregivers (or others) are available to support during and after the transition. This can help prevent the person with IDD having to navigate a
difficult change without proper emotional support in place.

What To Include

Keep this plan in a safe, easily-accessed place. You can use a binder or digital
version, and make copies or backups. For more information and ideas, review the
learning activity titled “Emergency Planning Workbook”.

• Your care recipient’s name and information. You can also include current information, like where they currently live and their likes and dislikes.

• Names and contact information of family members, providers, and other supports.

• Information about aids or devices your care recipient uses.

• Legal, financial, and health-related documents. Write down their locations or make copies.

• Dividers, labels, or folders to keep different sections and plans organized and clear.

• Housing

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• Legal Planning & Decision-Making

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• Finances

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• Daily Care

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• Meaningful Activities

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Consider This

Sometimes you need a last-minute option for temporary care. It’s good to have a list of places where your care recipient can access care. This can include:

• Respite care.

• Adult day programs.

• Friends, family, or neighbors.

• Make plans and discuss them with these people ahead of time to ensure they’re ok with your plan.

Some Tips for Planning

• You don’t have to do it all at once! Work on the plan step-by-step. It doesn’t have to be perfect and can change over time.

• Start the conversation early.

• Ask for help from other caregivers about their future planning experience, or ask the healthcare team about community resources or specialists who can help.

• Use a resource locator, like this one, to find future planning professionals and resources.