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Victoria Liska's latest battle involves convincing Medicaid to pay for the art therapy that provides her brother with his only outlet for communication. Her brother is non-verbal, but Victoria understands his thoughts and feelings through the "colors" and "the force of the images" he paints.

Siblings -- at any age -- often take on the role of advocating for a brother or sister with a developmental disability, to get access to opportunities that others take for granted. As children, that advocacy may involve sensitizing peers about people who seem "different." As they get older, brothers and sisters of people with developmental disabilities share, and often take over many of their parents' responsibilities. Brothers and sisters experience the same frustration that many parents feel as they attempt to navigate "the system" of schools, support services and government entitlements. Yet siblings often have to take a different approach to their role as advocates. In some instances, parents, because of stigma, have downplayed or denied the disability. This leaves brothers and sisters with a need to get accurate information about their sibling's condition before they can begin to advocate effectively. Also, because siblings are peers, their relationships are often more intimate than those between parents and children. Siblings understand certain needs that parents sometimes miss; his artistic voice is a side of her brother that Victoria's parents never saw.

A sibling will often enable a brother or sister to live a more independent life than parents thought possible. Whereas parents tend to overprotect a child with a disability, siblings are apt to encourage community involvement and independent living. As peers, siblings have a unique view on the strengths and weaknesses of a loved one.

Siblings note both the ups and downs of advocating for their family member. Life can become a balancing act, as when they have to negotiate caring for their brother or sister, an aging parent, and their own children and spouse. Sisters tend to play exceptionally demanding caregiving roles. Both brothers and sisters often feel they have to compromise their plans for their own lives; they cannot make decisions about where and how to live without taking their brother or sister into account. Siblings often feel isolated from others their own age because of the sense that peers cannot relate to their unique responsibility. As a result it is very important for siblings of people with developmental disabilities to seek out others who can understand.

Still, many sibling-advocates feel that having a brother or sister with a developmental disability has helped them to learn that a person's value should not be measured in IQ tests. Through having a family member with a disability, they have developed a greater respect for everybody's differences and learned to focus on strengths, not weaknesses.


Tips from those who have been there....

Educate service providers about your needs as a sibling. An increasing number of health care providers and social service agencies are including siblings when they think about "the family." If they don't, remind them that you are involved in your brother or sister's care.
Attend meetings about your sibling's future, including IEP meetings, transitional planning meetings, and clinic visits. Your presence shows service providers that you are involved.
Work with your parents and other family members to complete a life care plan for your sibling. This is a nonlegal but crucial document that lists everything that future caregivers will need to know about your sibling, including medical history, community involvement, and financial and housing arrangements.
Encourage parents and other family members to be up front about what expectations they have for future caregivers. Talk about what individual family members' roles and responsibilities will be with your parents, and, if possible, with your sibling. As obvious as this point sounds, an astonishing number of parents fail to have these conversations.
Choose your battles carefully and learn how best to work with service providers to get the right care for your loved one. "My parents were reticent about fighting the system. You have to be pleasantly pushy," says Victoria Liska.
Stay up to date on future care planning issues such as supplemental needs trusts and guardianship.
Join a sibling support group and talk to others who share similar experiences, and check out some of the resources available for siblings:
AHRC's Sibling Services provides an Adult Sibling Support group facilitated by Victoria Liska as well as individual counseling and support groups for kids and adults. Contact Randall Martin, Ph.D. for more information: (212) 780-2592. You can also visit AHRC's Siblings Services on the web at www.ahrcnyc.org/sibinfo.html
The Sibling Support Project of Children's Hospital and Regional Medical Center in Seattle, WA provides materials for siblings, including a guide to starting sib groups. Contact Donald Meyer, Director, at (206) 368-4911 or check out their website: www.chmc.org/departmt/sibsupp/aboutsiblingsupportproject.htm

How parents can help....

As parents go through the future care planning process, they can make the future less stressful for their children with and without disabilities. The first step is to begin to plan. Very often parents put off future care planning. They resist thinking about their own deaths because they are paralyzed by the fear of putting the care of their disabled child in someone else's hands, even if that someone else is another one of their children. Again and again Clearinghouse staff hear parents worry that "nobody is going to care for my child the way I do."

However, when parents delay decisions about future plans until it's too late, these decisions are often left up to siblings after a parent's death. Siblings are often unprepared for these responsibilities. Parents often "just assume" a nondisabled sibling will step in, without realizing that the sibling may not have the first clue what to do or may have other plans. For instance, some parents indefinitely delay setting up future housing arrangements. When parents pass away, the responsibility to find secure housing for the person with the disability often falls on siblings' shoulders. Siblings who ordinarily do not fulfill this role are often uncomfortable making major decisions like this for a brother or sister with a disability.

The resulting problems can make the transition even more difficult for a person with a disability who is already dealing with the loss of a parent.