You may play a role in the daily life of a family that includes an adult with intellectual or developmental disabilities (I/DD). The person may live at home with an aging caregiver, not be enrolled in public benefits, or be going through a difficult transition. You may be wondering whether you should get involved and how you should start.
Often families need encouragement to face the idea that parents may not be able to provide support throughout the life of a person with I/DD. Trusted family members and friends may be a vital resource in starting the conversation and in providing guidance throughout the future planning process.
More often, you will be able to talk with the family before an urgent need arises. Your role may be in supporting the person with I/DD, their family, and friends by discussing the importance of future planning, and letting them know that planning is possible. Future planning is not a one-time event; it’s ongoing.
Tips on how to play a role in future planning discussions:
- Encourage the family and person with I/DD to talk to other people and build a support network. Learn how other families have created future plans.
- Contact a chapter of The Arc. Many chapters offer informational workshops or can help you navigate the process in your state. Please note that chapters of The Arc vary in size and in the services they provide.
- Think about the person’s and family’s future needs and wishes.
- Let the family know what role you are willing to play in the future. This could be anything from serving as a health care agent to including the person with I/DD in holiday meals and other family gatherings.
- Contact The Arc’s national office through our online form or at 202-617-3268 for more help.
Learn more about how you can support the person with I/DD if there is an urgent need. For example, if a parent or primary caregiver is unexpectedly hospitalized or passes away.