Independence Equals Inclusion: The View Through A Mother’s Eyes

By Jo Ann Simons, Ruderman Family Foundation Disabilities Advisor and CEO Cardinal Cushing Centers

He gets up with an alarm clock. Actually, it takes two of them for him to get up.  He goes to bed pretty late, especially on days when he is not working.

It takes him a bit to get going in the morning and if he doesn’t have time to make a real breakfast, he either pops something in the microwave or grabs something at the nearby supermarket.

Had a roommate once. Prefers to live alone.

After work, he might pick up something for dinner, take in a quick round of golf, go fishing, work out or play video games.   He might even do laundry or a bit of cleaning.  Mostly, he leaves it to the housekeeper who comes each week.

He likes to eat dinner after 7 p.m. and eat in front of the TV. Most evenings, he and a couple of buddies watch TV together and they gather at each others homes.  Snacks and soda round out the evening.

His refrigerator is stocked with food…and beer.

He goes to bed when he feels like it and never before 10 p.m. On nights when there is no work and no morning commitments, he might hit the bed at 1 a.m.

He showers every day when he decides.  He shaves when he feel likes it. He drinks as much diet soda as he wants.

He went to a community college and works his dream job on a golf course. Free lunch, free golf and a nice hourly wage.  He has an intellectual disability and a couple of times a week,  someone comes by to help him with his on- line banking or help him process what might be on his mind.  They might try out a new recipe, figure out a new bus route or schedule health care.

Someone else helps him send defibrillator reports to his cardiac team, monitor his CPAP use and help with his hearing aid maintenance.

Forty years ago, someone like Jon might live in an institution.  Today, many people like Jon live in group homes.

My son, Jon, lives in his own home because a home by any other name is not inclusion.

— Jo Ann Simons

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Filed under Disabilities rights, Disabilities Trends, Down syndrome, Uncategorized

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