Wednesday, October 8, 2014

People with intellectual disability grow old alone: Study

By Louise Kinross

On Monday I got home just as D’Arcy and Ben were walking up the 26 steps to our house.

Ben, who had just got off his bus, was wearing his black and brown Tim Horton’s uniform—including a button-down shirt and visor—and D’Arcy was waiting for him as he climbed each stair. They got to the landing and Ben sped up with his characteristically lopsided gait, the result of a surgery that left one leg shorter than the other.

I was flooded with happiness.

I knew how lucky we were that Ben had two co-op placements in his last year of high school, and the human and transportation supports to make them happen.

But the moment was bittersweet. I quickly reminded myself that these supports will evaporate next year. When Ben leaves high school, he'll experience what families of children with significant disabilities refer to as "falling off the cliff."

And the findings of a large, longitudinal Irish study released last week paint a grim picture for people with intellectual disability decades later, in their middle to old age.

The research—the first in the world—compares the physical and mental health of 753 people with intellectual disability over the age of 40 with the general population over a three year period.

I was particularly interested in the findings on relationships in the study, which is called the Intellectual Disability Supplement to The Irish Longitudinal Study on Aging (you can download it here).

In contrast with the typical aging population, researchers found older people with intellectual disability are generally alone—single, without children, and living in a different area than other family, which makes seeing family difficult.

Three-quarters say paid staff are their most important “social partners”—read “friends.” Just over half have friends outside their home. For respondents with severe intellectual disability, more than two-thirds have no contact with family. Researchers found lack of friends and reliance on staff was just as problematic for older people living in community group homes as it was for those in larger, more traditional institutions. Respondents said they were most likely to confide in paid staff, well ahead of siblings and friends.

“Our findings show that movement to the community does not necessarily equate with community integration,” says principal investigator Mary McCarron of Trinity College Dublin, echoing a theme in this earlier BLOOM post. “Unless the community is truly organized and resourced to support aging people with intellectual disability…their experience may instead be one of social isolation, loneliness and new forms of institutionalization,” Professor McCarron said.

Almost two-thirds of older people with intellectual disability in the Irish study have trouble getting into the community, or don’t go out at all—with “need someone’s assistance” as the main reason they're stuck inside.

Researchers note that “living in the community” for older people with intellectual disability bears little resemblance to life in the same neighbourhood for the general aging population.

While older people with intellectual disabilities had significantly lower rates of high blood pressure and heart attack than the regular population, a majority were overweight, engaged in little physical activity and had osteoporosis.

Compared to a 33 per cent employment rate for the general aging population, only 6.5 per cent of older people with intellectual disability were employed at the three-year mark of the study. About 80 per cent attended a day program.

At the beginning of the study, 32 per cent reported never having attended school. At the three-year mark, over 80 per cent said they had trouble reading, writing, doing simple math and using money. More than 60 per cent could not read their own name.

The researchers note that for the first time in history, people with intellectual disability are growing old in considerable numbers.

I'm grateful that such a large, rigorous study is shining a light on this marginalized population.

But its results cast a shadow on my hopes for Ben's future.

Watching Ben climb the stairs with his dad on Monday I was happy that he had a co-op placement at Tim Horton’s, that he was wearing the standard button-down shirt despite his sensory aversion, and that son and dad were so pleased to see each other.

Ben prefers it when his dad waits at the end of the bus ride. Sometimes when I pick him up he’ll pretend to snap his fingers in a gesture of “darn.”

“I know,” I’ll say. “I’m your second favourite.”

I recognize we’re incredibly lucky that we have one more year for Ben in the school system, and that he is doing co-op five days a week: two days at Tim Horton’s and three days at Variety Village, the adapted gym. He has an assistant who goes with him. This allows D’Arcy and I to work regular hours.  

But at 21 our children lose the learning stimulation, routine and social connections of school, with nothing to replace them. Hiring workers to support your adult child can be extremely expensive. And you may be starting at ground zero to organize activities that are meaningful for your child.

We have a small group of workers, family and friends who met last weekend as a follow-up to a life-plan day we did with Ben, where we looked at his goals for the future and how we can support him. I hope we can come up with a mix of activities for him when he graduates that may include part-time work and a day program. People like my son deserve a better future.

I'm not convinced that the Irish study will result in richer lives for the seniors studied. I don't think the average person is concerned with, or willing to invest in, the happiness of people with disabilities. How can we change that?


Is the study just an Irish one or does it follow people from different countries? This is the dreaded question, Louise, one that I hold in the back of my mind as for us, it must be answered within the next three years. No one I know has an answer, or a satisfactory one. I think we're all winging it -- trying to figure out what our children with intellectual disabilities will do all day and how we will give them a good quality of life. Ugh.

Hi Elizabeth -- It's based on a population sample in Ireland, but it's the first study in the world to compare the two aging populations (those with and without ID) in a longitudinal study.

So good to hear from you. Time is passing too fast!

This study sheds light on the dark concern I have for my daughter's future. She is currently in a fantastic transitional program where she has real friends, but this support ends at 21. Unless we (their parents and my husband and I) make a concerted effort to organize some meaningful activity program for our kids after they leave transition, they will be entirely isolated. We haven't any day programs in our county to occupy their time.

There is a movement to create "meaningful days" for our young (and older) adults with disabilities who cannot create their own, but the onus on the parents is overwhelming. What I appreciate about this study is that it points this fact out, if subtly. The reality of modern medical technology is that many more people than ever before are going to be supporting the needs of aging people with disabilities...I hope it is received as a wake-up call that we need to do a better job as a society of embracing all our members.