Impact Feature Issue on Aging and People with Intellectual and Developmental Disabilities

No single topic is more worrisome for siblings than the future well-being of their brothers and sisters who have disabilities. Their concerns are obvious for anyone who cares to listen: Their brothers and sisters with disabilities are now routinely outliving their parents, many of their parents are reluctant to plan for the future, and waitlists for Home and Community-Based Services are as commonplace as they are obscene.

In May of 2009, I invited adult siblings -- ages 50 and older -- to be a part of an informal online survey about the concerns they have about their siblings who are also aging and the roles they play. The results, I am sorry to report, are not optimistic. However, I hope they will serve as a wake-up call for parents, policymakers, and service providers who are concerned about older Americans with disabilities and their families. Below are excerpts from the survey:

Q: My guess is that you have given some thought to the days to come for you and your sibling who has a disability. When you look into the crystal ball and imagine the not-too-distant future, what do you see?

• About five years ago, Beverly was showing changes in her behavior, mood and memory. I had her evaluated for Alzheimer's disease. I was shocked and saddened when we received the diagnosis. I was not aware that people with Down syndrome are more likely to get early-onset Alzheimer's than not. It was something that I was not prepared for. From that point on we were on a new road in Bev's life journey. Knowing that Bev has Alzheimer's and seeing the changes that have occurred already, I know that the road ahead is going to be very rough.
• Fear. I am also aging and am tired of watching for red flags in his life. My three children have offered to help, but we all know that is not realistic. They all work and have their own families. I do not want to leave to them what was left to me.
• If I stay healthy, Tom will always have a home if he should decline in his ability to take care of himself. If not, others will have to step up. Who that will be, I do not know.
• I see me leading my own life without the restrictions of Mary's care. But doing so means that Mary might live in a facility where her care needs may not be met, and her life wouldn't be as full as it is now. It's sad to think of her not being active and getting the attention she does now.
• I see us going from crisis to crisis and possibly having to move all three of our brothers again.
• I think that she will be living out a longer life than people with Down syndrome used to have, and for that I am very glad indeed!
• I'm hoping to find a stable, safe, and stimulating place for him to live with others who have similar interests so we both can get on with "living our best lives."

 Q: Are there issues regarding your and your sib's future that you find yourself thinking about as you cut the lawn or drive to work?

• I think about the fairness to my husband after all these years of raising children to still have an adult/child living with us -- and my own children. They're starting their adult lives with the possibility of having their aunt to take care of.
• I worry that I am going to die and there will be no one to look after him, and that the responsibility will fall on my husband or children, who don't deserve the added responsibility (but then again, neither do I!).
• What worries me most is if something happens to my sister and I would have to take over the care for our three brothers. I just don't know how I could take care of all of them by myself. I don't know that my marriage would survive that. Hell, I don't know if I would survive that.
• I wonder why so many people seem to think that Tom is so wonderfully independent that they never need to do anything, offer help, take him to a ball game, or even ask. Where is everybody?
• Other family members (nieces, etc.) disapprove of my sister's and my decision to place Patty in a group home. I worry that Patty will outlive us as longevity runs in the family and she is seven years younger than I am.
• I have been overwhelmed this past year and am seeing a social worker to help me deal with letting go of being the perfect sister. I do not want to be the first-responder any more.
• I would like to leave the area for the opposite coast but I am concerned about her not having an advocate. I am also concerned about the grief -- hers and mine -- that would ensue and her inability to deal with my absence.
• Yes, I fear his being alive when I am gone, needing all kinds of care, and his resisting because that is what he does when he is scared or in pain.
• I am constantly thinking of Bev and her future. My first concern is making sure she is happy and that all of her needs are being met. But at the same time I know that I have long-range planning to do, which involves possible long-term health care and eventually her death. This is so hard for me to fathom and difficult to do without much family input.
• I worry that he's not getting enough stimulating and interesting things to do outside of his part-time job. I worry that he's bothering the neighbors too much. I'm concerned that he might be depressed, although he insists he's a "happy person" by nature.
• I wish we could count on our needs being met by appropriate funding and how nice it would be if services were there when you need them, not so difficult to find and easy to take advantage of. It's sad to have to worry about money when it comes to her care.

 Q: Are there "hopeful signs" as you think about your sibling's future?

• The most hopeful sign I have is my sister's behavior: As years go by living with me, she's more comfortable and more secure. She shows that with more smiles and attempting to use her voice more often. I hope that her life is happier as she ages and forgets the hard times in her past when she was in a bad group home.
• He loves people and seems to adapt to new activities quite well. When things change in the future, as life goes on, I think he'll manage to adapt and latch on to whatever is new for him.
• "Hopeful signs" are his financial cushion that was afforded by my mother's thoughtful planning that allowed his trust to be funded at the time of her death.
• The hopeful sign is that my other sibs and I work well as a team in a time of crisis or need.
• My sister is in a terrific group home right now. She can get around by herself on public transportation, she has wonderful, caring friends and housemates, and the staff is great with her. I can't imagine a better living situation, and it gives me hope that, if we need to find another place for her down the line, there are other good places out there.
• Tom has been a trailblazer his whole life: He was among the first with Down syndrome to receive early intervention, go to a public school, be employed in the community and live independently. Will we be first with Alzheimer's, too, teaching the community about the needs of those who are aging? It makes me tired to think about it.  

 Q: What should service providers know about your thoughts regarding life with an aging sibling who has a disability?

• My relationship with Tom is birth to death. He tells me everything. He never lies. And I am never, ever going to rest until you are doing your job properly and he is safe, healthy, and not lonely.
• I would like them to know that most siblings will have to take over the parent's job -- but they won't have the authority of a parent in the disabled sibling's eyes as well as the eyes of many providers. This is both frustrating and scary.
• They should know that we need as much support as parents. We need info and resources. We are usually coming into this without the years of experience about the system. Many sibs are taking on the responsibilities of supporting our sibs at the same time we are helping our aging parents and raising our own kids.
• I've always been Loren's second mom as I'm ten years older than he is. Our mother had serious mental and health issues so I tried to parent him and provide perspective and stability for him. I guess what service providers should know, or remember, is that many people with disabilities come from widely divergent situations and there are many complex backgrounds interwoven into the mix. The person is not just definable by their disability; they are also defined by the environment they were lucky or unlucky enough to land into in the first place.
• In general, service providers should understand some sibling-guardians will be as involved as parents in caring for their siblings -- but some may not because of commitments to their own families or professional lives. This isn't necessarily a bad thing for the siblings who have the disability because many times typical siblings will give them more responsibility and autonomy than parents will.
• Service providers should understand that having a sib with a disability is a life-altering event. They should know that although many of us are preoccupied with that consequence, we are still people who want to achieve, prosper and try to be happy. Even though we are not parents, we tend to be very responsible. But we need help from agencies who can provider high quality, trustworthy, uninterrupted services for our brothers and sisters. 

Brothers and sisters will be in the lives of family members who have disabilities longer than anyone. Theirs is a relationship easily in excess of 65 years. They will likely be the primary advocates for siblings who have disabilities when their parents are no longer around. And as these responses eloquently attest, these brothers and sisters desperately need parents and service providers who understand their unique concerns -- as well as information and support to help their sibs have dignified lives living and working in the community.