My wife and I have cared for our son for 22 years since his injury at age 8. We live in pa and the state support provides aides that come to our home and help with his laundry shaving and drive one of my cars into town for shopping or just coffee at dunkin doughnuts.
The support agency has long lists of home care agencies but does not support group home listings.
He was away from home in a group living arrangement but decided that he did not like that environment and we (reluctantly) agreed to move him back home.
My wife and I are not going to live forever and at some point he will need to move away again. I am hoping folks on this site can offer suggestions
Is he mostly independent? Because then he can get into low-income federal subsidized housing and section 8 state housing. It’s for anyone who’s low-income and disabled. And then if he has SSI he can to hire a helper to come every day. Many people at my house and have helpers come in as needed, this one lady had helpers about 3 times a day she was a paraplegic.
Anyway just call those agencies and see which one has the soonest opening
He has tremors that make it very difficult for him to feed himself, and he
cannot open a gallon of milk and pour himself a glass.
I will investigate Section 8 housing… he has services for care at home
for ~40 hours per week, and folks come over each day and help feed him,
shave, cut fingernails… stuff like that.
I don’t think he needs 24 hour per day care, but if left completely alone
he may wander off so… some supervision is needed.
He was in three different “group homes” with 24/7 care… but decided he did
not like that so we were forced to bring him home.
I am now retired… and he needs to move on to a different living situation.
At some point this will happen, as I won’t live forever.
Bill I’d also look into “interfaith volunteer caregivers” they can do things like help him find friends, help entertain and support him like by playing a boardgame with him, just talking, helping him pick a movie…many things they help with grocery shopping, visits to the doctor, they’ve helped me a lot and they’re just wanting to do it out of the goodness of their hearts
if they’re not in your area, try to find something similar…it can be tricky…health and human services sometimes know, also aging and disability resource center.
and the management where I live helps with social “problems” that can come up, like if he wanders off…and one time a neighbor was worried about me an called the police, and they just politely checked on me…they’re very kind around here…and that worked out too. there’s hope out there Aloha
Hey Bill,
I apologise for taking so long to respond to your post as I’ve not been well for a few days and although I started this post a few days ago, I have only today been able to complete my response.
Having worked with people with disabilities for many years both within clients homes and supported accommodation facilities, I have a clear understanding of some of the pressures you and your family are faced with. Now admittedly I’m in another country and the systems and supports available will be different, but some of the processes to assist with the transition can be seen as universal.
There may be skills that your son is able to do for self and others where assistance will be needed. Rather than looking at your situation as a whole, which can be hugely overwhelming, it may be easier to break the ‘whole’ down into steps. In my role as a Living Skills Teacher we had a questionnaire known as a Skills Assessment list, that established what our clients could do, what areas needed to be looked at as a priority and what areas the client may simply need ‘some’ support in. Then we set about developing a program around those specific needs. When I say ‘developing’ a program, this is not a big process. But rather than having a ‘one size fits all’ program, we would tailor the teaching to meet a specific need. For example if you son has some cooking skills, then teaching him how to boil a pot of water safely can be very demeaning, so taking the skills the client already has into account makes the whole process much smoother. We found it to be much easier to support the client to develop those skills needed within the home environment prior to them moving out. In doing this it recognises the abilities clients have, it concentrates the supports around areas needed and it builds confidence in self. This process in developing skills for independent living within the home environment also builds a level of self respect which can be a huge stumbling block for some people. Moving directly from home to a supported environment can be very confronting. Nobody likes change and a direct change without an adaptation period or skill development exaggerates that change MASSIVELY. So a slowly, slowly approach can be much more beneficial than a sudden change in circumstances.
By doing a Skills Assessment, areas that the client can do tasks in, can be congratulated and we all like praise. This can boost self worth and confidence. New areas of skill development identified, learning new skills can also boost confidence. The boost in confidence can make to process of moving to a more independent environment less daunting for everybody involved.
If this is the sort of information you are interested in please let me know and I’ll find you a copy of a Skills Assessment and forward it on to you as a tool for you to use. If this isn’t the sort of information you need then again let us know and I’ll see what I can find.
I am 45 and lived with my parents for 20 years until I entered a rehabilitation facility. Speaking as a person who has been in that situation, your son is still your son. He didn’t choose to be dependent. Forgive me if I don’t understand but speaking as a survivor, find a care facility.
