Worry Worry
October 8, 2007 by Kristina Chew, PhD
Filed under Health
19-year-old Max Hollen, who has autism and epilepsy, has been missing from his group home since yesterday afternoon. Update: Hollen was found by Monday morning, Oct. 8.
Two employees of the Rainer School at Buckley, Washingston, have been arrested after videos shot by undercover KIRO 7 Eyewitness News shows that disabled students at a school run by the Department of Social and Health Services were allegedly slapped, struck in the face, and otherwise mistreated.
An 11-year-old boy with Asperger’s syndrome was “brutally attacked” after stepping off the school bus in Templeton, Massachusetts. Authorities are planning to press charges against two girls and three girls who filmed the incident, as reported by WCVB today.
A parent has to worry: What will it be like when, if, Charlie lives in a group home—and school itself does not seem so safe? How will the staff be trained? How will I know what is going on and what I ought to do?
It is one of our biggest worries, isnt it?
My son is in boarding school. I have after 18 months found a group home for him for when has to leave soon.
Various incidents have happened over the years, but all i can say is they can happen anywhere, as you know even in a day school.
My son is non verbal so it is even harder to assatain what happends.
Hopefully as more is understood about autism, the training will continue to improve. And as parents we are more on the ball these days.
The fear is palpable, Kristina. I’m sorry.
It isn’t a fix but I think there is some solace in knowing we’re not the first to be unable to protect our children from potentially serious situations. I have no choice but to send my young daughter off with my ex even when I’m pretty sure he’s not stable. Single mothers whose exes are not only unstable but mean, addicted, or deeply irresponsible know the fear even better.
If you have to, you find ways. You find ways of mitigating and finding information where you can and stepping back where you can’t. How much does that help the kids? Apart from having a less freaked-out mother, I’m not sure, except that eventually, maybe, they’ll know you love them and did all you could for them.
No sorry needed! Charlie understands to stay in the driveway and one adapts and gets a different sense of things. I think these are long-term concerns for many parents and good areas to consider in thinking about staff training and supervision, and facilities.
Casdok, will the group home be near where you live?
Thankfully yes! So i will beable to pop in and check up on him! And i will!
His boarding school is 3.5 hours away, the group home will be half an hour! Also meaning he will beable to come home more often.
I believe this is a rotten-apples to rotten-apples comparison.
My wife works at an assisted living facility for the elderly. This facility is run by a for-profit corporation. My wife is the only college educated non-management employee at her location. These positions are the “resident assistants (RA)”. The hands-on people. My wife is management-incorrect by asking and canvassing the hourly rate of the employees. It is sub-standard for the area, and yes, my wife is the only RA employee that doesn’t need a “green card” or speaks English as a first language.
All employees need to pass minimum requirements for licensing once, and after those only corporate “CYA” meetings. Most of the janitorial/cooking employees live at the local half-way house, can only work certain number of hours, and must be back at the half-way house by a certain time or be in violation of their parole.
The unemployment rate in the area is 2% which by every industry is considered a “labor shortage” market. Licensing regulations require 3 RA on duty. Inspections are done on weekdays. My wife works week-ends, there have only been 2 RAs for the past 8 weeks, sometimes only one.
The resident’s pay very well for these services (ahem).
My wife has observed that the residence that fair the best are the ones that routinely, meaning more then twice a month, get visits from friends/family.
Yes, we are scared to death about our son’s future without us.
I used to hear about these things in well-spouse groups, too. And I heard what Cliff says — active management and participation is crucial.
Many of the spouses I knew came to see the assisted-living places as a form of reliable-as-it-gets respite care. They still did all the care management and supervision, they still had to do a lot of advocacy and fighting, there were plenty of staff worries, and the expense was huge, but they got to sleep at night, often undisturbed. Their homes became reasonably tranquil. And that was an enormous help.
“Their homes became reasonably tranquil. And that was an enormous help.”
Amy,
What if the point is not the need for respite, which is a real issue in some instances, but the question of what happens when WE are old, disabled or dead?
Unfortunately, professional “caring” is not the same as caring, and like others, this keeps me up at night sometimes. I can do what I can with my daughter, but at some point she is going to be, to a greater or lesser degree, dependent on the kindness of strangers–and what will that be like?
My daughter is 10. Is there anyone out there with older kids or adult children who has practical suggestions?
Having lived with two elderly in-laws last year, I was very struck by overlaps in issues of their care and of Charlie’s. In both cases, the need for advocacy and honesty about needs, condition, diagnosis was essential—Jim and I have been able to do our best by Charlie by striving to be as honest and discerning of where he is as we can. It was much harder to do this with my in-laws, both of whom are not able to make more and more decisions for themselves—-are not able to judge their physical and mental state, for one thing.
It’s very scary, especially since the boy is my son’s age.
But part of it (for me at least) is that I have to trust God that He will care for my son, even when I can’t be there.
I thank God that this incident was videotaped. Authorities will know for certain who did this disgraceful thing. And the parents of these children will not be able to deny it either.
Scary.
I hate to say that this is a totally appropriate fear. I have worked in group homes, ans was appalled at some of the things I saw going on. I eventually got out of the “direct care” field because I just couldn’t take it, and nobody seemed to give a crap to change it.
Reality is, within a company, it is the direct care workers that deal with the clients on a daily basis. Clients depend on them to meet their basic needs. They are also the lowest paid in the company, with a turnover rate that is incredible.
The company I work for now, is very prestigious, ans very well known throughout the TBI (traumatic brain injury) community. Even with all of that, we still hire direct care workers who are less than desirable. Matter of fact, the only reason we’ve ever turned anyone away is if they had been convicted of abuse in the past. Convicted.
It’s sad, but on the business side, it does boil down to the almighty dollar. Try getting a quality, experienced, or degreed person to work for $7-$8/hour without weekends or holidays. These people do need to get paid more, but companies should stop settling for illiterate dropouts with drug histories and such (not saying that all workers are like this, just speaking from my experiences) to care for our loved ones.
There are the rare direct care workers that “care”, are literate, and drug-free and I am happy to be married to one.
m~d, unfortunately, even in human services when you have kind, multiply-degreed people available, the pay is not much better. I know social workers on food stamps. And people do burn out within years. There is tremendous need — so much that my sense is that the people who do demand, and command, professional salaries are resented. We have very few child psychiatrists here, the need is great, and there are just not enough appointments available, even for those with great insurance. They are not going to work themselves to exhaustion for no money the way the social workers do.
Regan, the way that most people I know of deal with the problem of “what happens when I can’t be there because I’m dead or disabled” has to do with insurance, family, carefully made wills and trusts, and hope. Because in the end that’s really all you can do; there’s a limit to what you can do from beyond the grave.
My own worries have only to do with about the next 15 years or so; if something happens to me, my ex will have my daughter’s care, even if he’s not really able to take care of her (or himself). Our families are small and scattered, our parents are getting on. So there is an insurance trust that allows him to live with her in the house, pays bills if he can’t work, pays for household staff, and pays for healthcare for both of them. Trustees and advisors have been carefully chosen. My daughter and I are part of a small, tight Jewish community, and I’ve arranged things so that they’re likely to look out for her, keep her connected, show her models of successful professional/educational life, and attend to her education. I am well-connected with the local human-services establishment and I trust those people to make good recommendations for good-enough, understanding household staff (who can be paid a premium thanks to the insurance trust). My school friends would also, I think, help out.
Of course, my ex could reject all of this. Nothing I can do about that, and in the worst case she would grow up isolated, taking care of her father and watching his breakdowns in a home dominated by his mental illness, with little or no training in looking to her own future.
There is really only so much you can do. Money can sometimes help if it’s carefully controlled. A combination of money, savvy, and a devoted family member is probably the best you can do. In practice, plan the best you can, and then put aside fantasies of future grief as best you can, because they cannot help.
When I think of my son’s future, the song “yesterday,all my troubles seemed so far away, now it seems they’re only here to stay” comes in my mind. Yesterday was before the diagnosis and my troubles, my greatest trouble, is his future. I’ll try to prepare him as good as I can for his unfair battle in life, but there are no guarantees that he will live an indepentent life, or, more fundamentally, be happy and safe. I guess we should deal with problems the way the arise and just hope for the best. However, the question “what will happen to him after I’m gone” is definetely a trouble that is here to stay.
Hi Kristina!
This is TOTALLY off thread, but I’m responding to a message from you from last April! My film is called “The Ghost at the Banquet” and there’s clips uploaded to youtube. It’s now done, actually!
Sorry I took so long to respond and apologize for not responding to this article.
Great to hear from you again! I’ll check out your videos—thank you.