When we're gone what happens to our ...

[BusynMember]

Copa I am learning that each state is different. I believe California has more resources than most other states. I cant guide you in the right direction for sure. But I can give suggestions. First try Aging and Disabilities as your son is deemed disabled. Cant hurt. Try Social Services and your states Disability office. There are lists somewhere for group homes. The group homes do offer privacy, your own room. I would talk to a Disability lawyer lf you want to build your own place.

I am sorry I cant offer more suggestions.

 

[Smithmom]

Copa,
Group homes have rules and that's the problem for our behavioral kids. As I recall your son uses and active use eliminates group homes. Group homes for recovering addicts might be called sober living houses or step- down programs. You would typically find these through rehab programs. The rehab would refer them. In my area Oxford House has a number of homes. You can look them up online and they have a list of their homes and vacancies. But that's just one group.

Mental health group homes are different. Obviously many in mental health group homes have a history of addiction. But a recent history of use would probably eliminate the possibility of this kind of placement. Like any disability, mental health group homes have a range of illness. Your son would have to find a group home he's comfortable with. That is, he might not be comfortable with unstable psychotics for example.

In my town there is a private step-down facility for those leaving a mental health hospital. It is technically an inpatient facility but a step to independence and employment with social services to help. I believe it is meant to be 3 to 6 months.

Dual diagnosis is one of the most complex, and common, issues in housing for the disabled in my experience. Addiction usually has to be treated and stabilized before mental health housing options are available. There are no easy answers. But the definition of group home is just unrelated people living in the same home. What is a religious community? A commune? A college dorm? A frat/ sorority house? A homeless shelter? The next question is when does your state decide that some kind of license is necessary.

One thing I figured out some years ago is that your state licensing board lists can be gold. Whether its licensed child care providers, licensed addiction facilities or licensed group homes the state has a list. These are online. You need to figure out the acronyms and what each column means. But once you have the list you can go through and find the places you never knew about. Yes, I have been this desperate.

 

[Smithmom]

Employment for the disabled

My autistic son is working and we've been very blessed. The state provides a job coach. The high school signed him up with voc rehab about 2 years before graduation. Can't say they were much help then but he was on their books. A HS job training program, albeit with a lot, lot of pushing from me found him a job. With that success, at grad voc rehab provided a job coach for 3 mo. Based on that success he was approved for state funded job coach through fed funds... I forget all the wording now but could dig it up if someone wants it. This funding not only provides the coach but if he were to need it a "job finder". In fact, my son is a state employee and most employees are temps so he has to re-apply for his job annually, do the I-9, etc. The job finder does all this.

SWOT there are two very large, well, huge nationally recognized, hospitals near me. At rush hour there are ambulances that deliver employees to work at these facilities. Yes, even severely physically disabled people can work and lead productive lives. But it takes open minded employers. I suspect that this would be impossible in a rural area.

Elsi,
My question is... For a social person how does home self-employment become as rewarding as working in an office? For those of us who are loners it's perfect. But for people who need social interaction, the chat around the watercooler, is it the path to a full, rewarding life?

 

[Copabanana]

Smithmom. Every single *reasonable living situation my son has lost because of his pot, and because he was unwilling to conform to rules. We were the last in a long line. He refuses to accept that what he does affects others negatively and others have a right to request that he change, in order to remain close to them.

He will push the limit, and then he is out.

The kind of compromising that each of us does to keep a job or to live with others, he is unwilling to do. People who do not know him well or close will insist that he is wonderful and marvelous, cultured, verbal and well-educated. But when he is pushed, he falls apart. He feels he cannot and should not give up his weed. It is essential to his life. And everything else is secondary. He had a very good situation in a sober living home. Nothing at all was asked of him. Except sobriety. He complied to a point, until he was thrown out. There were other treatment programs before that. He sees no earthly reason why he would stop using substances. None. To him, everybody else is wrong.

I try to not even think about how far he would be willing to fall, because we are in that situation now. The degradation he has accepted is mindboggling to me. Who knows how much worse this can get? But I feel certain that we have to go down this road now while I am still alive. There exists at least a chance that when forced to choose, with everything stripped away, family, friends, home, maybe there is a chance he will choose in his best interest. As long as I enable him there is no chance at all that he will do so. I have proven that.

Thank you for the information and the support.

 

[Smithmom]

SWOT
My son has been in over 30 group home settings. Never has he been in a place that had individual rooms. He has had his own room on many occasions because there was a vacancy. He always got the room to himself on those occasions because he is so hard on roommates. I can only think of one of these that was built to be a group home. They were all single family homes being used as group homes. This is my experience in 2 states anyway.

 

[Smithmom]

Copa
I can't say anything you haven't said to yourself. My addict son is the same but with "hard" drugs. My son won't admit that he has a problem. With mine there's one difference. That's that I know he has a problem with, for lack of better terminology, contamination phobia.

What we both know is that without the addiction they would be able to find and maintain their own housing. But there's nothing we can do to get them into treatment.

 

[BusynMember]

Smithsmom, wow.

I have never actually been in a group home so maybe I misunderstood and there are roommates which make things much less comfortable. I only hope and pray that you find the right place for you beloved son. You both deserve it.

 

[Elsi]

Elsi,
My question is... For a social person how does home self-employment become as rewarding as working in an office? For those of us who are loners it's perfect. But for people who need social interaction, the chat around the watercooler, is it the path to a full, rewarding life?

That’s a great point Smithmom. I suppose it depends on what someone is looking for in employment. Challenge and intellectual stimulation? Earning your own money? A sense of accomplishment? Social interaction? If social interaction is the primary goal, and face to face is important to you, you’re right working from home may not suffice. But I will say I do get a lot of interaction in my job via phone and web/video conference. Sometimes too much! I have clients I’ve worked with for years that I’ve gotten to know quite well. With today’s technology it just opens up a lot of new and different opportunities for some people who may not be physically able to function in a traditional workplace or who don’t want to. But you’re right, if part of what you are looking for is developing face to face relationships with chit chat over lunch etc you won’t have that.

 

[Elsi]

I hope all of you are able to find lifelong solutions that work for your kids. It’s a tough conundrum.

The kind of compromising that each of us does to keep a job or to live with others, he is unwilling to do. People who do not know him well or close will insist that he is wonderful and marvelous, cultured, verbal and well-educated. But when he is pushed, he falls apart.

Copa, you could be describing C here. Sigh.

 

[Tired out]

SWOT, Give up on my "disabled" son?? I don't know how you could possibly interpret that out of my post. I won't even give up on my younger difficult pita son.
Anyone who had dealt with aides or agency's know that is a joke (at least in our state). There is a huge shortage of aides. We haven't had an aide since October. There are 3 agencies here and they can't get aides. People aren't going to work for 10/hr when McDonalds is paying 14. Now aides I HAVE given up on. Thanks to an aide he had summer 2017 he had a shearing wound, basically the aide pulled him back in hi commode chair , rather than lifting him an inch to reposition him and she cause a shearing wound on his upper thigh (remember he only weighs 80 lbs, not much to reposition), thanks to another aide we got bed bugs (may have brought them from another client, like the other one that brought fleas!!) .
As for group homes..I've gone, I've seen, my skin has crawled and I left.
I "retired" the year after he was born, it became apparent very quickly that appropriate daycare wasn't available. I am with him at home. When he is at work (shop) ( 3-5 hours/week) there are people who look out for him and attend to his needs. They are a terrific team. There are a couple of other guys there that are somewhat similar to him cognitively BUT physically they had muscular dystrophy and their bodies are deteriorating. both are now physically in worse shape than my son.
Working from home.. Yes he has all the tools here, Macbook Pro 32" screen, wacom tablet, Adobe suite. he sells some on Amazon.
He is a fabulous human.

I read something on here about..If I won the lottery..
If we won the lottery we would start a residence for differently abled adults. Just for 4 adults. I have a complete plan in mind BUT it takes money.

 

[Elsi]

Yes he has all the tools here, Macbook Pro 32" screen, wacom tablet, Adobe suite. he sells some on Amazon.
He is a fabulous human.

I’ll bet he is! Does he want the social interaction of working outside the home or is working from home stimulating enough for him? What kinds of things is he selling on Amazon? And what kind of work does he dream of doing?

 

[BusynMember]

Oh, hon. I never meant you should give up. I dont think any of us are CAPABLE of giving up, certainly not a hero Mom like yourself. Sometimes the meaning of a post gets misinterpreted and I am so sorry if I posted something that you felt meant you should give up!!!

I truly meant your son has so much to offer rhe world! I hope he gets everything great in life in spite of his disability! I am so sorry about all your bad experiences .That should NEVER be allowed!!

I am also truly shocked any McDonakds pays $14 an hour where you live! Here they make 9! Insanity. Health Care workers should make much more than they do, certainly more than flipping burgers

 

[Tired out]

Elsi, He likes the interaction of being with people. he is a very social person. For example..right now he is on his ps4 in a chatroom with 4 other guys (ages 28,32,36 and 42) . Funny to hear some of their discussions, sometimes they get very heated. they all bonded over a certain game may years ago and they still hang together on-line. Being at home for work all the time would not be good for him. He goes for physical therapy and massage on the days he doesn't go to workshop. His pt group is a young crowd, he has been going to them since 2009! The therapist he started with there then is now the boss (he is 38) there are other younger therapists (my son's age) and he has great relationship with them. For him it is a social interaction as much as therapeutical one.

We always said he should be a political analyst.
He listens to the news and commentaries and cuts right through the bull.

he likes to design t-shirts, pop sockets, that is what he sells on Amazon. Not a lot of money in it but there is satisfaction.

 

[Elsi]

Tired I hope he finds a way to get some work out of the house then! If he’s good at design he might try contacting some small or midsize ad or design agencies in your area to see if they use contract workers. A lot of them have a small number of full time staffers but then maintain a stable of contractors they reach out to for overflow work or certain kinds of projects. That may lead to other opportunities later on, which could be a mix at at home and office-based work. I’ve worked with a couple agencies locally and there are creative meetings and such, and one always offers me the option of coming in to work in their space if I want to. (I don’t want to.) for straight freelancers, there are also co-working places now where you share space with other professionals. There are some geared specifically for creative professionals. Of course, you have to be bringing in enough income to justify renting the space, but more social freelancers seem to really like the feeling of having ‘colleagues’ around them and the networking potential. You find flexible groups of creatives (designers, writers, programmers, PR people) that share client referrals and combine talents for different kinds of projects.

My sister has MS and has a strong connection to her online gaming community also. I know those bonds can be very real and important, especially for those with limited mobility. She’s been playing with the same group for years now.

 

[Copabanana]

We always said he should be a political analyst.

You know I do not know what is your son's disability but a very famous political analyst writer, the most highly regarded in the country I think, or nearly so and surely the most brilliant was named Charles Krautheimer. When he was in medical school, I think it was then, he had a diving accident and became paraplegic. He finished school somehow and he became a psychiatrist.

Eventually he entered journalism, both print and TV. He was affiliated with Fox News.

He married and had children. And had the most fulfilled of lives, it seems.

I do not know what his family background was.

In this day and age with the availability of communication mediums, like blogs and podcasts and self-publishing, there is really no limit in how one decides to define themselves in terms of the spoken or written word.

Nor are there significant limits in terms of education. Not only is there one to one assistance provided in physical classrooms, in the form of aides and whatever adaptive supports are required, there are online universities through the Phd. I am taking two courses online now. In one at a rabbinical college everybody in the class meets on zoom. The other is a foreign language course that meets entirely online.

I have taken studio art classes online.

The Department of Rehabilitation would potentially pay all costs for school if he wanted this. They would probably pay for and support him for any goal he had that was reasonable. Particularly if he had a advocate to help him through the process.

Your son seems like he is living a very fulfilling life. He sounds content with himself which is everything. I am not saying that he should not aspire and attain, but it sounds like he has a strong base of friendships, support, strong interests, and most importantly, healthy self-regard. You must be extremely proud of him.

 

[Smithmom]

Tired out... I know the problem of finding aides exists everywhere. It is slightly less of a problem for institutions like nursing homes. I'll throw out a couple of thoughts. But first I think the key is what you and your son have to offer beyond a meager salary. And I wouldn't at all say that you should be looking for someone who might look for a fast food job. Not that it is your job to find aides but the reality is that the agency isn't doing it. So there are a lot of people finding their own aides and having them sign up with the agency. I see classified ads by parents frequently. Often on care.com for example. Keep in mind that the agency still has to do the fingerprint and background check. You're just steering people to them. I would word the ad to offer an opportunity for experience working with the disabled, to offer a medical experience reference, a job coaching experience or anything else you can offer. Other places I would call and advertise:
Nursing/ nurse's aides schools
Any kind of college for that matter
Religious organizations, churches, etc
Unemployed/ networking groups (an older person might be with you for a longer term)
A parent support group of disabled kids
A nanny support group

I don't know what you've tried but job sharing, a morning person and an evening person seems common. Maybe offer free room and board in exchange for extra hours?

I agree that the key to the long term for you and I may start with finding compatible roommates.

 

[Smithmom]

Tiredout
I think we are both thinking that our sons would be best with others with similar disabilities. But I wonder if we aren't limiting their options. Perhaps personalities and shared interests should be more important.

A memory came to me.. A French movie that I borrowed from my library years ago. About a wealthy totally physically disabled man who hired a seemingly inappropriate man as his aide. Very touching as I remember and perhaps a lesson to us about opening our minds to others. I need to watch it again. Q

 

[Copabanana]

A French movie that I borrowed from my library years ago. About a wealthy totally physically disabled man who hired a seemingly inappropriate man as his aide.

smithmom. If you find the movie or remember the name could you share it, please?

I was thinking this yesterday, the general idea, but was hesitant to express it, because of the risk. In my own life I have received kindness in the most unexpected of places, and risk where I was most assured of safety.

 

[Smithmom]

The Intouchables.

Were there no risk in life.. But agencies do background checks and fingerprinting.

 

[BusynMember]

My dads SO of years had an adult daughter who was completely disabled and wheel chair bound. Now this woman was also extremely wealthy so maybe this option is not open to most but she put help wanted ads in the news and got full time helpers for her daughter and I know she paid them extremely well. She did not use an agency.

Her daughter was difficult to please so even with the high salary, many quit and she was always looking for the next one but her daughter always had SOMEBODY with her and she was able ti live independently from her mother and have her own places and do things of her own choosing.

I think her mother did reference checks.