People with intellectual and developmental disabilities (I/DD) are living longer and often expected to outlive parents who have provided for them and made all decisions concerning their care. When this happens, responsibility for the individual’s well-being falls upon a sibling or other designated family member. Although it’s hoped that families establish an advanced plan for care of the individual, frequently there is no plan in place.
Some siblings have grown up with this inevitability in mind, some even step in before it’s time if they can assist with advocacy in order to help their parents. They gladly take on some of the tasks knowing the individual will be loved, safe, and lead as happy a life as is possible.
Ideally, aging parents will begin legacy planning well in advance allowing each family member to express their feelings and wishes concerning the care of the individual with I/DD. Solutions are not always straightforward, but working within a well structured, but flexible plan make transitions much easier when the time comes.
Certainly, it’s different to be caregiver of a sibling. Family members may be raising their own children, some may have had limited contact with the individual and don’t have a level of understanding about their disability. Or, the siblings may have been separated for long periods of time if they lived outside the home. The expectation that a sibling is available to assume the role of sole caregiver can create strain within family relationships.
“I’m prepared to become my sister’s legal guardian one day, and whether or not I become her caregiver one day, I just want to know that she’ll be happy, healthy, and loved. I want her to live a life she’s excited about, and I want to do everything I can to make sure she never feels alone. I want the freedom to make a five year plan for myself, make commitments and set goals, and become who and what I need to be for myself and for her because I can’t imagine myself without her. I want us to get older together. It’s something I look forward to.” -Sofia Barrett-Ibarria (What to Expect When You Become a Sibling’s Sole Caregiver)
At Opengate, we are here to listen to all concerns. Facing new challenges together with parents and all family members, we hope to make seamless transitions for their aging children. Our staff is trained to assist families in creating not only a Life Plan for their I/DD child, but also help them create advanced directives for the time when they are no longer able to make decisions regarding the care of their child.
In the meantime, if you are reading this and have concerns, or need to talk about your situation, our Chief Operating Officer, Deborah Mayo is available to discuss your issues. She can be reached at 914-277-5350, ext. 1113 or email DeborahM@opengateinc.org
*photo credit Pixabay