Advances in medicine and expanded support services have allowed many individuals with disabilities to live longer than ever before. As a result, an increasing number of siblings will replace their parents in caring for and supporting special needs adults.
While many resources exist for the parents of adult children with disabilities, new resources specifically designed for adult siblings can be found as well.
Perhaps the most important search for the adult sibling of a disabled individual is for the right support and information. Connecting with others locally who are dealing with similar practical and legal complexities can help. In the Bay Area, Parents and Caregivers of Adult Children with Disabilities (PACDD) offers a siblings-only support group that meets in person on a monthly basis. The group discusses both practical issues and personal concerns of those involved in the care and support of a brother or sister with a disability.
PACDD also offers a wealth of online resources and information for any adult closely involved with helping a special needs individual.
Another key consideration is advance planning for medical care. Many adult siblings will have more peace of mind knowing that their disabled brother’s or sister’s wishes and values will be taken into consideration when critical or end-of-life medical decisions must be made. The Coalition of Compassionate Care of California (CCCC) has created a workbook called “Thinking Ahead,” which includes illustrations, stories and worksheets to help anyone discuss medical care and end-of-life wishes with a disabled adult.
Finally, a letter of intent is an essential guide for adult siblings in a support role. If the letter of intent already exists, a review of the letter can be a good place to start a discussion about the future with parents, other adult siblings and any other parties closely involved.
If the letter does not exist, the Vanderbilt Kennedy Center has created a tip sheet called “Adult Siblings of Individuals with Disabilities” that includes a basic overview of the letter of intent.