Susan's Blog

Friday, December 1, 2017

All that’s gold may not glitter

The name, or the concept, of “group home” is not pretty. I’ve heard people say, “we need a new term for group home.” The term falls from the lips like something dry and dusty. It’s a dead end. Ugly.

If a group home is run well, though, it is beautiful. Look below at a typical monthly calendar from Nat’s group home. What you should notice is that the activities are not necessarily blockbuster Disney-level exciting things. But this does not matter. AT ALL. What matters is that they follow this monthly calendar pretty much without fail. The manager gets it to us right at the beginning of the month so that the families can plan around it. The families let the manager know which weekend events their guy can go to. The golden nugget here is that there is communication among all involved.

The activities are not glamorous, but neither are my family’s. A lot of it is just operations of daily living. The things they do are just what a home might do, night by night, just living a life together. Sometimes it’s food shopping — whomever of the housemates wants to go. Sometimes it’s just a movie on tv. Sometimes it’s baking. Sometimes, though, it’s a trip to Dave&Buster’s or Sky Zone. Is your Netflix binge so much more uplifting?

In addition to the group activities, every individual in the home has one night a week that is one-to-one with the same staffer every time. This builds a relationship and a structure, around all the other structure written into the calendar. Nat goes with P once a week to his music class at the Teen Center, and P hangs out at the Teen Center, shoots hoops, listens to music. Nat is happy, P seems happy. I go and greet P and watch Nat practice. P brings me the meds Nat will need for the weekend — I must sign for them. It is all very official and yet very very natural and personal.

When I first heard about this weekly one-to-one, I thought grimly, “Big deal. That’s not much!” But now I see the beauty of it is that it is actually always done. Other poorly-run group homes may sometimes have the opportunity for more one-to-one, but is there a plan? Is it predictable? I think that we all know how important predictability is to our guys. And to us. Because if you know where your guy is most of the time, that is a lot of security right there.

Yes, in the group home the television is always on. Oh, how parents hate that. But I think the TV on is fine. Like it or not, the television is now the hearth, the way the radio used to be for people before TV. The way the fire was before that.  In our home it is not the television that is always on, it is our laptops. It really just depends on your social class or your own preference.

Group homes go out in an ugly van. For many, the group home van has symbolized all that you don’t want for your guy as an adult. It’s gray and it seems so dead-end. Right?

Well, think again. The van fits all of them like it does your soccer family, and it makes it easier for anyone who is having mobility issues to get in and out comfortably. It’s not a BMW X5 or a Volvo or even a CRV. Nope, it’s an old Toyota minivan.

So. What. It means they are out in the world, comfortably, dependably.

A big part of autism adulthood is getting past how things look. The guys may not be cute little boys. Maybe they don’t dress well, maybe they don’t have dental plans. If you are an upper or middle class family in America, you are used to “nice things.”

If you’re upper middle class you may be used to prettier cars, houses, vacations.  But now, in adulthood, in a group home, the guys are in a staffed home together and that in itself is very expensive. The staff live on a shoestring. They work other jobs. But here’s the beautiful thing: most of the staff has been the same for Nat’s entire first year there. I know who will be on when. I have an idea of his day-to-day life.

So no, the money just isn’t there for the shiny things. Group homes are not shiny. Not all that pretty.

And yet to me, dig deeper and you will see that even though something doesn’t glitter, it may still be gold. This monthly calendar — its very existence, and the fact that I know it will be followed — this is as shiny and beautiful as a trip to Bermuda.

December Recreation Calendar

Sunday Monday Tuesday Wednesday Thursday Friday Saturday









Decorate for Christmas & make ornaments for tree







Bowling League

Dunkin Donuts









NatB 1:1






Ice Bar in Fanueil Hall




Flaming Grill








Dunkin Donuts






Bake Night


NatB 1:1












NatB Concert

Party afterwards at NatB’s house








Bowling League

Dunkin Donuts




Holiday party at [nearby] group home @ 6pm




Families’ Gift Exchange








Dave and Busters


Hot Cocoa &Cookies/ Watch Christmas Movies






Bowling League

Dunkin Donuts






Make Pizza










NEW Years Eve


Chinese Food



ALL ACTIVITIES ARE EXPECTED TO BE COMPLETED! Please inform the manager immediately if this is not the case. Thank you- Management


Great piece, Susan. So happy this is working for Nst.

— added by Shelly Senator on Friday, December 1, 2017 at 10:31 am

Beautifully written and so true!!!

I work for a small provider, 3 group homes serving 12 Individuals total. I’ve been working here for 6 years, and I feel blessed to be part of a family that loves and cares for each other. Prior to working in this business, I was so fearful about my son’s future. He has autism and just the thought of him living in an institution made me anxious, depressed, and sick on my stomach. All I could think about was the typical old asylum horror movies I’d seen over the years and come hell or high water that wasn’t happening to my son! The future seemed so bleak and hopeless to me.
In 2010, after being sued by the DOJ, Georgia began the process of closing our state mental hospitals and the “group home concept of community living ” for DD/ID adults became the law. Two years later, I found myself working for a provider of DD residential services. I can’t even put into words how much working here has eased my fears concerning my son’s future. It took all those fears completely away!! Developmentally disabled adults have a right to live their own lives to the best of their ability in the community. They deserve to be treated with respect and dignity in the community the same as any other adult.
Here in Georgia we serve over 9,000 ID/DD adults on the community medicaid waiver, with over 10,000 on the waiting list for services. Average wait time for an ID adult to get into a group home is 7 years.
If Medicaid is capped, like many in government want, what will happen to the waiting list?
(I pray that nothing I have said here is offensive to anyone. If so, please forgive me because I sure don’t want to offend people. That is not my intention at all.)

WOW! Excellent writing, Susan! I will be printing this, our residential managers will love it! Thank you! Thank you!

— added by Win on Friday, December 1, 2017 at 11:29 am

Winnie! Thank you so much! I can’t imagine how this could possibly offend! Comment any time, as much as you want.

— added by Susan Senator on Friday, December 1, 2017 at 12:07 pm

Thank you for this heartfelt piece from the parent perspective – and for honoring the group home providers who do a good job! We have been from group home, to Shared Living, and are now back to the group home. We’ve learned a lot about appreciating the structure and support that this can provide our son, who needs it! Many thanks to you, Susan.

— added by Janice on Friday, December 1, 2017 at 3:09 pm


Simply thank you. Many providers work incredibly hard and too often folks can not see the joy in our daily work. Your post is much appreciated my husband and I have been trying to provide top quality services for almost 40 years. These days it is so much more common to hear the daily criticism versus all that goes right.

Very kind piece for our community, and we can always use more kindness.


— added by Rita Gardner on Saturday, December 2, 2017 at 10:59 am

Thank you for this Susan! As I begin to navigate transition with Justin these posts are solace that a place outside our home has its merits. Appreciate the perspective!

— added by kim mccafferty on Friday, December 8, 2017 at 10:52 am

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