David Heitz is a writer who spent 13 years looking after and advocating for his father with Pick's Disease, who died last year. David is a member of the American Society of Journalists and Authors.
Being a typically-developing sibling to a person with special needs is tough—and many of these siblings end up as caregivers later as adults. Yet, we don't hear much about their struggles.
In fact, according to the Sibling Support Project, a nonprofit organization dedicated to helping the 6 million caregiving brothers and sisters of people with special needs, “Many educational, healthcare, and social service agencies profess a desire to offer family-centered services, but continue to overlook the family members who will have the longest-lasting relationship with the person who has the special needs—the sisters and brothers."
With this in mind, the project has produced a report, “What Siblings Would Like Parents and Service Providers to Know." Here is a selection of some of their findings:
“The Right to One's Own Life." The hard and fast number one rule for caregivers is that they must take care of themselves in order to properly care for others. This is true for all types of caregivers, not just those caring for their parents. The paper reports, “'Nothing about us without us'— a phrase popular with self-advocates who have disabilities—applies to siblings as well."
A study published in 2009 in Intellectual and Development Disabilities showed that while these caregivers generally think their health is better than most, in fact they were more likely to suffer from “arthritis, high blood pressure, obesity, and activity limitations." Older caregivers in the study also acknowledged they had psychological problems.
“Acknowledging Siblings' Concerns." Once a parent passes away and a sibling obtains legal guardianship of a special needs person, they are able to be “in the loop" about their brother's or sister's care, and sometimes only then are their own concerns heard as well. This is a flawed approach. Siblings' insights are important not only from the unique vantage point of a sibling, but because as the person who often ultimately will take over the care of the special needs person, affirming their concerns are in the best interests of the caregiver and the patient. Engaging siblings sooner in caregiving and decision making provides better long-term consistency of care.
Another study in Intellectual and Developmental Disabilities showed that these sibling caregivers badly desire “workshops training on how to assume caregiving responsibility, financial support, and printed material on making future plans."
What many sibling caregivers worry about most is anything but selfish. In fact, they worry most about their own deaths, particularly if they are the older child, and who will care for the special needs person next. This is a concern worth airing, hearing, and addressing.
“Opportunities to Meet Peers." Just as people who care for their elderly parents join condition-specific support groups for caregivers of Alzheimer's, Parkinson's, frontotemporal degeneration and the like, siblings can join condition-specific support groups for caregivers, but also sibling caregiver online support groups such as SibNet and SibTeen. Such groups are scarce in comparison to parent-to-parent support groups for those caring for a developmentally disabled child. “Brothers and sisters—like parents—like to know that they are not alone with their unique joys and concerns," according to the report.
“Include Siblings in the Definition of Family." While this seems obvious, if enough service providers actually were doing this there would not be such a staggering lack of support for siblings who are caregivers. “When brothers and sisters receive the considerations and services they deserve, agencies can claim to offer 'family-centered'—instead of 'patient-centered'—services," the report argues.
“Include Brothers and Sisters on Advisory Boards and in Policies Regarding Families." This makes sense for so many reasons, not the least of which is the fact that nobody knows someone like their sibling. It's what leads to tension between siblings, particularly among those who like to “push buttons." But it also can lead to beneficial ideas and solutions for disabled people that nobody else might consider.
The report concludes, “As one sister wrote, 'We will become caregivers for our siblings when our parents no longer can. Anyone interested in the welfare of people with disabilities ought to be interested in us."
For the full list of recommendations, read the report on the Sibling Support Project website.