by Philip B. Stafford, Bloomington, IN
The longevity revolution, sometimes called the “age wave,” has certainly been in the news lately, and with good reason. Never before in our history have so many people lived such long lives. There are certainly important public policy implications surrounding the aging of the population worldwide. One implication is, unfortunately, off the radar: Adults with developmental disabilities are also part of the age wave! They are living longer than ever before.
For adults with developmental disabilities, the longevity revolution provides the opportunity for a full and meaningful life course equivalent to their peers and their siblings. For elderly parents this can, however, be a surprise. Many elderly parents of children with developmental disabilities were told early on, and have lived their lives under the assumption that, they would outlive their child with a disability. As a consequence, far too few parents of a child aging with a disability have engaged in “futures planning.” Without planning, the death or frailty of an elder parent can lead to a less-than-smooth transition for an adult child with dependencies. Emergency admissions to nursing homes and group homes are not only expensive, they put an extreme burden on an adult with a disability who has been living comfortably, securely, and even independently.
A recent study of aging families in Indiana provides some insights, lessons and “take aways” in seven areas for families trying to remain strong over the long haul (Stafford & Pappas, 2009). Below are each of the areas, common types of responses from aging families, and what might be learned from their experiences.
It’s not just about the family. It’s about the community. “I gave up my social life at night; she’s my life, she’s my project I guess. I feel that (she) is my responsibility, our responsibility, until we can no longer take care of her. That’s just the way I feel.” As laudable as this sentiment might be, it’s perhaps useful to expand our notion of family to include neighborhood and community. It’s important to start “cultivating” community early on so when that day comes the broader family can play a role. Here’s a take away provided by another parent pursuing that very strategy: “He volunteers at the fire station. Being such a public place, everybody knows him and [he has] ‘joined’ all the families that have a connection with fire and police. He is so well known in the community, it makes a huge difference in my sense that he will be fine after we are gone.” And there’s a “take away” for policymakers too: Public policy and programs that determine eligibility solely on the “functional capacity” of the adult with a disability miss the point. It is the overall relationship between the family and community that determines successful family functioning.
You have to learn how to use formal services and systems, and expect frustrations. As one family noted, “[We’ve] had these services for a year or more. The girls [from the agency] don’t stay too long. That’s the only problem, the frequency of turnover. I assume the pay is not that great and they find something better and quit. Everyone has been nice, except the first one or two were inexperienced.” The take away: Don’t expect formal services to solve every problem. But don’t be a patsy, either. Learn to be assertive. As one parent said, “Dealing with the state can be frustrating, but I also talk a lot and get myself in the door if I have to.”
Don’t assume you’ll live forever. “When the time comes that our health starts to fail, then that’s when we’re going to have to start looking outside of our family or for services so that we make sure that she’s taken care of. Until that happens we haven’t worried about it too much,” observed a parent. The take away: Don’t forget to consider the role your adult child might want to play in helping you as you age. From one family we heard regarding their daughter with a disability, “She stays home doing chores, dishwasher and laundry since I have been laid up.”
Assess your support system realistically. The experience of this family is not all that unusual: “We have a very nuclear family. It is just the three of us, and our daughter is in Illinois. I have friends but no one would know what to do. It’s pretty much the three of us and we are trying to manage as best we can. My husband went to the emergency room at midnight and I took [my son] with me. I think I could ask someone working with him to stay with him or take him home in an emergency, but that would involve money or something.” The take away: If your support system is thin, give the community a chance to care. One family has done the following: “Making sure everyone [in town] knows him — that’s my protection when I’m dead. They’ve got to know, they’ve got to care.”
Isolation is not healthy for either party. This family knows the stressors of isolation: “[I] sometimes worry that everything for [my daughter] is work and in her room. I wish she had more social life outside of the workshop. Basically all she has is pretty much church and bowling related. She needs a friendship outside the house. Everything that she does Momma and Daddy has to do it. She gets sick of Momma and Daddy sometimes. We go to every party that she goes to.” The take away: Think creatively about blending formal and informal sources of help, as one family did: “Our sitter is our daughter’s mother-in-law, and they have been family friends for a long time. We certainly trust her. At that point when we needed somebody, she was raising dogs and she went through and got certification so she could sit with [our daughter] and she has been doing it for six or seven years. It means a lot to have somebody. We call her directly [and don’t have to go through the system].”
Be future oriented, and don’t assume the other children will step up. One parent observed when thinking about future supports, “I’ve not really thought about it. They have all said that they don’t want him to go to a group home.” The takeaway: Don’t assume. Have a conversation as this family did: “The issue came up especially when we went through the legal guardian process. There was a lot of things we took for granted. Until we asked the boys we didn’t know how they felt about it. We assumed that they would be ready to take her in, but they said no, with their family life it would be more difficult for them than what we anticipated it would be.That was kind of upsetting to begin with, but when you think about responsibilities these days, you can’t really. It could be when the time comes it may change.”
Accept that there are risks in life. “He does his own showering, but I lay clothes out for him because he would wear shorts in November.” It is true that adults with developmental disabilities will make errors in judgment (as we all do at times), but it’s worthwhile to focus “risk reduction” on those issues that are serious ones. Allowing people to make decisions and receive feedback from a caring community can lead to greater independence, which can, ironically, be scary for a parent — any parent! The take away: If you have developed effective community ties, go ahead and rely on the community when you can, as the following quote demonstrates: “If there is a ball game, I will take him out there and he will find a ride home ‘cause he can’t ride his bike out there. He knows everybody and pretty much everybody knows him.”
It’s true, aging ain’t for sissies. Keeping the family strong, however small it may be, can be a challenge over many decades. Sticking with it is hard, but brings its own share of rewards. Strong family ties, even in small families, play a critical role. But extending ties, especially in small families, is an important part of the formula for success in the face of overwhelming stress. As one family member said, “All of a sudden some things just aren’t as important anymore. I don’t need to be quite so controlling. You’ve got to trust. In the long run, [he has his] brother and they have always been very close. [Jane and Joe, community members] have demonstrated they like [my son] — they consider him in their family.”
Stafford, P. & Pappas, V. (2009). Family supports: Issues and ideas – Final report to the Indiana Family and Social Services Administration (unpublished). Bloomington: Indiana Institute on Disability and Community.
Editor’s note: Philip B. Stafford is Director of the Center on Aging and Community, Indiana Institute on Disability and Community, Indiana University, Bloomington. He may be reached at 812-855-6508 or Stafford@indiana.edu for further information about the Indiana study of aging families. Reprinted with permission from Impact: Feature Issue on Aging and People with Intellectual and Developmental Disabilities (Winter 2010) published by the Institute on Community Integration at the University of Minnesota. The entire issue is available online at: http://ici.umn.edu/products/impact/231/default.html or by calling 612-624-4512.