I have some good news, to start with. I was able to go to Barnes & Noble last weekend, and flip through the American Girl: McKenna books to investigate the portrayal of Josie. To my utter relief, her wheelchair is not the main point of her characterization. She is characterized instead as confident and smart, adjectives McKenna herself uses. Josie has named her wheelchair Lightning (after the horse she hasn’t ridden yet, but has in her imagination), and handles disability with gentle, yet true humor. (The specific disability given, if I remember correctly, is in fact cerebral palsy). And even though McKenna does react by not wanting to work with someone who is “different,” it’s largely because she’s never been close to anyone with a disability before. The book infers Josie will help change this. So–great news! 🙂
Also, a slight correction: In an earlier post, I mentioned that Addy Walker was American Girl’s first and so far only African-American heroine. Recently, though, Addy was joined by Cecile Rey, an African-American girl from 1850s New Orleans, whose family is not only free, but wealthy. How refreshing.
As you can see, I’m focusing on some good news I’ve found recently in the disability world. But there is one part of that world I have never seen as potentially “good,” and that is the phenomenon of the group home. My disability’s mildness is such that the possibility of being put in such a place was and is my worst nightmare. But as it has been pointed out, some group homes are real homes, and some people with disabilities–ones who truly need their services–enjoy living in them. So this week, I began to do research with this question in mind: Do good group homes or assisted living placements exist?
My research indicates that yes, good group homes and assisted living does exist. By no means does sending an adult with a disability to a group home automatically mean he or she will be isolated and abused, although that certainly does happen, and we will examine that later in the post. Group homes are–as unfortunate as this sometimes seems–good places for certain people, who actually need, and more importantly, want them.
Some of the best examples I have seen are the Aspire program of Illinois and the Spectrum for Living program of New Jersey. Aspire works with children and adults with disabilities and their families, and their services do include residential choices for adults. These range from apartment living for those with the mildest disabilities, with help from staff as needed, to a group house of two to seven people, to cottages for people with the most severe disabilities, where twenty-four-hour care is provided. These choices, of course, mean that no one is “dumped” into one particular place and forced to stay there, getting care or supervision he or she does not want or need. Aspire also includes vocational and employment programs, recreation, and access to certain activities, like music and computer training, that many people with disabilities would not get in such a setting.
Aspire has a photo gallery of its many group homes; I have to say I was impressed. They are in fact actual houses, not blocks of institution-like buildings, around western Chicago.
Spectrum for Living of New Jersey is quite similar, although their housing options are only described as “barrier free” and not as specific as Aspire’s. Their website includes a recreation calendar for residents and a photo gallery, as well. Residents are allowed to set up and decorate their own space as they see fit, and twenty-four-hour care is provided “to the most medically intensive residents.”
So, “group home” doesn’t have to mean “isolating institution.” In fact, as an online article from the Jewish Daily Forward says, “Parents of adults with disabilities increasingly turn to group homes” because otherwise, they may end up caring for their child with a disability well into the parents’ own old age, which can be detrimental for all involved. In fact, the same article mentions an adult man with a disability who was left alone in his parents’ home after their deaths, water and electricity turned off for lack of payment. Another parent describes her twenty-two-year-old son’s experience in a group home in Boca Raton: “He loves it…he was a different kid when he was home…he’d get frustrated and bored.”
So if a group home provides a sense of community and real activities for a person with a disability, then that’s positive. But for anyone reading this considering group home placement for a person with a disability, I urge you to watch for these red flags:
- “Kid.” The mother I just quoted referred to her son as a “kid.” Twenty-two is not a kid, nor is it appropriate to refer to someone of that age as one, especially someone with a disability. If the staff refers to your loved one with a disability in childlike or condescending terms, or acts in such a way, get out of there.
- Take a very close look at any employment opportunities offered. Are they real jobs, or simply menial? Aspire, for instance, mentions a “sheltered workshop” as an employment option for those with severe disabilities. Let the buyer beware. Sheltered workshops are often quite isolating, and as I covered in a post last month, some of these workshops only pay people with disabilities sub-minimum, “compensatory” wages.
- Activities: Do you have a choice in what to participate in? I could not tell from the Spectrum for Living’s recreational calendar if this was in fact the case. But if you see that the whole group is expected to act in lockstep all the time, do a double take. Disability does not equal “no individuality,” and supervision does not mean telling someone exactly what he or she can and cannot do with his or her own time.
- Independence and interdependence levels: Are there opportunities within the group placement for someone to become more independent and interdependent, but naturally, rather than through regimented therapies? Or are the residents expected to be as needy as possible, in the name of the staff having control?
- Abuse: Yes, it does happen, such as in several state-sponsored institutions in Texas, with names like Mexia State Supported Living Center, Corpus Christi State Supported Living Center…are we seeing a pattern here? If any reference to the state or government is anywhere in the group home’s name: buyer beware. Do your homework; check for any and all allegations of physical, verbal, mental, psychological, or other abuse. Also watch for suspicious rules, like no visitors, or visitors only on certain days and at certain times.
Finally, remember: Group home placement is an option. It is not THE option, and for many people with disabilities, it is or would be inappropriate. It is the equivalent of a sequestered special ed classroom–as in, not the least restrictive environment. So, be sure you really need one before you go down that road. And if you have to go down said road, make sure you check out the “accommodations” on your mental car’s route first.