Eleanor Lives Next Door

/ June 29, 2018

By Donna Goodaker

About the Author

For more than 20 years, Donna has been the executive director at Progress Inc., a Nashville nonprofit providing a continuum of supports for adults with intellectual and other disabilities to allow the most independent life possible. Lon- time Nashville resident and mother to two grown sons, she believes in kindness, fair play, art, travel, friendship and cats.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vumc.org.

Eleanor is about to move in next door to you or maybe she lives there already.  Let me introduce you.

She’s 26 (or 35 or 62 or some other age). She loves flowers but not gardening, adventure movies but not romances, football but not basketball, hamburgers but not carrots, going to work but not getting up early, and walking but not swimming.  Or maybe the opposite of all that.  She’s going to split the rent with a housemate.  Her mom will come over and bring lunch almost every Sunday.  Eleanor also has an intellectual disability.

What is intellectual disability?

Intellectual disability: This is the language we use to refer to what used to be called mental retardation.  “Mental retardation” were words we used to use to describe a clinical or diagnostic condition.  It was fine until it wasn’t. Too easily turned into words spoken to demean, bully and disenfranchise, we don’t use those words to describe or talk to people anymore. Ever.

Intellectual disability describes a person’s intellectual process, which, for different reasons, is more limited than the typical range of intellectual functioning.  That’s all.  The words aren’t scary, but they might invite a little anxiety if you aren’t familiar with individuals with an intellectual disability.

The American Association on Intellectual and Developmental Disabilities defines intellectual disability as a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18.

Why is Eleanor going to live next door? Don’t people who have intellectual disability live somewhere else, like an institution or a facility? 

So, yes and no.  In the not-so-distant past, many Eleanors lived in institutions.  Institutions provided an alternative for families who often were doing the best they could but who couldn’t meet the physical, medical or behavioral needs of a child or sibling. Years ago, institutions seemed an efficient way to provide needed services.  But, they didn’t work out so well.  Even setting aside longstanding systemic neglect and abuse eventually uncovered in some institutions, forced isolation is simply bad for human beings. And many individuals with disabilities who were living in institutions made it clear, through lawsuits, that they didn’t like living in institutions. Learning occurs with experience in the world, with risk, with opportunity, with failure, with success, with variety, with choice-making, with great teachers, family, and friends.

There’s been a gradual progression, starting as early as the 1970s, from less institutional living to more community living.  At first, community living still looked somewhat institutional; large congregate settings, called intermediate care facilities, where people with intellectual disabilities lived together, and staff made all the decisions.  People ate together, went to church together, went to the movie together, went to the park together — whether they all wanted to or not.  There continue to be some intermediate care facilities in our state, but current practice encourages much greater community involvement and as much individual choice-making as possible.  Still, this kind of setting is unlikely to be found next door to anyone who lives in a typical neighborhood.

What about a group home or something?

So, yes and no.  Group homes were “best practice” for a long time.  Group living offers advantages.  Group homes are almost always in neighborhoods.  Group homes can offer the feeling of family.  People often forge strong friendships with housemates. However, achieving compatibility can be difficult between two people, much less four people or even more. People living in group homes may still have to do most things together because of limitations on vehicles and the number of staff in the home and other regulations.  While the house is likely to be in a neighborhood, it often stands out as something-different-is-going-on-in-there because of the obviously larger number of adults with disabilities and unrelated staff people going in and out.

If not a group home, then what?

The most recent and person-centered living arrangements are currently called supported living or community living supports.  Different sources of funding use different names for their programs, but this won’t matter to you as Eleanor’s next-door neighbor.

Not every person who has intellectual disability needs support to live independently, but some do.  Those supports, most often in the form of direct support professionals, may not be needed every hour of every day, but some people do need support all the time.  The difference between supported living/community living supports and the way most other people live in their homes is the staff part.  If someone has difficulty being successful and independent on their own, there is likely to be paid staff who also live in the home, or they will be there occasionally, or they may come in shifts, with someone there all the time.  They fill the gaps between someone’s current abilities and their ability to be fully independent. Depending on the individual, this can be help with cooking, with bathing, medication management, or numerous other tasks of daily living.

The notable thing about supported living and community living support is that it’s regular.  Typical. “Normal.”  It’s where somebody with intellectual disability lives.  A house in a neighborhood.  An apartment in a complex, small or large. A condo. A townhome. Next door to you.

Back to Eleanor

Because Eleanor’s full complement of characteristics includes intellectual disability, she’s different intellectually than most of your other neighbors.  It’s OK to recognize that. Actually, it’s important to know that.  If you aren’t the kind of person who really gets to know and socially embrace all of your neighbors, there’s no expectation you will treat Eleanor differently.  (But as you probably do say “good morning” or “how are you today?” to other neighbors, Eleanor would probably like it if you spoke to her, too.)  If you are the kind of neighbor who knows and socially embraces all of your neighbors, there’s no expectation you will treat Eleanor differently.  She hopes.

I asked my friend Donna to write this post because almost anytime I talk to someone about my son being in supported living, the person will say, “Where does he live?” and I will say, “In a condo in Franklin.” And then the person will ask if it’s a special-needs condo complex or if it’s some kind of “facility.” I then explain that he lives in a condo complex that has all kinds of “typical” people, nothing special needs about it, nor is it any kind of facility. Just a regular, ol’ condo in our hometown. And he has staff 24 hours a day to help him live the kind of life he wants to live, doing the things he likes to do—just like the rest of us.

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