<p>MJSMOM, I’m very happy that you posted re: SSI vs SSDI. I think many are confused between the two, including some posting on this thread. As a parent of a special needs 23 yr old who receives SSI, I think that we understand it.
Much better though to have an expert like you post accurately.</p>
<p>Agree with dstark completely. Our DD wants to work as do most of her special needs peers. Our DD is a wonderful human being with great social skills and a warm personality. Unfortunately, those are not sufficient job skills in and of themselves.
Now, if she had some money handling ability (which she does NOT) she might make a go of running a cash register…
The SSI she gets comes with Medicaid which covers her expensive medications.
We are grateful for that.</p>
<p>She has social and athletic and recreational programs in her life. She needs to gain more life skills like riding the train (does not drive and probably never will), knowing how long a lunch break is, etc. and perhaps there will be a job of some type for her at some point.
How’s that for hopeful?</p>
<p>^^That sounds realistically hopeful, musicmom. With strong social skills and loving support, it seems that there would be plenty of jobs that she’d be qualified for. There are so many customer service jobs that seem as if all the worker needs is a pleasing and caring personality…and many come across as cold, uncaring, and completely lacking in people skills. Hopefully the job market will soon improve and there will be opportunities available for your daughter.</p>
<p>I think thats great musicmom.
Riding the bus/ train has challenges all its own.
Last year the daughter with special needs was going from her high school program which was held at the community college, to her after school program at the ymca in another neighborhood. An aide from the high school program was supposed to make sure the students got on the right city bus, but he wasn’t available one day.</p>
<p>She got on another bus & convinced a kid that was in the same program to get on that bus also.
It took her a while to figure out it wasnt the right bus, and when she did, she got right off, taking her friend with her. ( she is quite persuasive)</p>
<p>Luckily she had a cell phone & was able to call her mom to tell her what happened.
Unfortunately, she had gotten off in a really sketchy part of town, where even the businesses didn’t look like a safe place to wait.</p>
<p>Her poor mom not only had to go pick up the kids ( the boy was non verbal), but she was harangued by the parent of the boy who was furious that the girl had gotten him to go with her.
Seems to me her concern may have been better directed at the school program that did not supervise them as required, but she was understandably upset.</p>
<p>Our nation generally doesn’t have much support in place once folks with special needs are 18 or older. They can sometimes get compensated trainers, if some fights for them. They can also get Medicaid if they qualify and some secured it for them. There is a great shortage of semi and sheltered living situations where they can be as independent and productive as possible with some support.</p>
<p>Musicmom, of course I love your post. What is the job market like for people like your daughter where you live? </p>
<p>Emeraldkity4, brought up something that leads to one of the biggest problems which is safety. Reading your post and Emeraldkity4’s post it sounds like your daughter is similar to mine. My daughter loves people. Loves them and trusts them. There is no way my daughter
can protect herself. Riding on a bus can be dangerous for her. </p>
<p>We looked at some housing for my daughter. Since it could take years for her to get housing, we decided to start looking. The place we looked at was the best financial option for us because it would cost us nothing but donations. My daughter did not like it. It is an enclosed community. There are very little dealings with the outside world. I didn’t like it either. My daughter rides her bike to work. She walks to the store by herself. This housing would be a step back. She wouldn’t be dealing with the real world.
Another choice is more independent living with support from an organization. The organization supplies the housing with govt support and I believe some from us. Or two… Same organization, but we supply the housing. This gives us control over who lives with her.
Of course housing is expensive here but we may go forward with that option.</p>
<p>Well, considering how few options there are, many dont feel there are any viable alternatives. </p>
<p>High cost of real estate in HI is a major barrier to all people having a place of their own. It is not unsommon for a 2-bedroom place to run $2K/month + utilities.</p>
<p>Our neighbor across the street is in his 70s. He and his W (same age) live with their adult S (age 40s) and special needs S (also in his 40s). A few houses from them, there is a woman of similar age who is a recent widow. Her adult S (divorced and 40-50s) lives with them, his 2 boys did too until they went off to college and we lost track of them. The adult D (also 40s) lived with them with her H and her 3 kids until she determined her kids were being abused and moved out. I haven’t been inside but believe it is only a 3 bedroom place. The widow confided it isn’t how she imagined her golden years.</p>
<p>I also knew a pharmaceutical rep who had 17 people living in the same house as her. When there are fires and they indicate the number of people displaced and number of bedrooms, it can be quite high density.</p>
<p>Maybe because of living with an extended family it works. It is traumatic when a special needs person lives with a parent and the parent dies and the special needs person has to move. Death of a parent and moving right after is hard for anybody.</p>
<p>It’s good when there are choices. A relative had an adult S with mental health issues which emerged in college. Treatment was unsuccessful. The parents feared outliving the needy S because he was hard to manage and his sib had an independent life of his own. After the mom died the S was very difficult for the ailing 80+ dad. They both eventually died within months of one another. </p>
<p>For them, money wasn’t an issue, but it was what they ended up doing. We wonder if the widower would have had a happier last few years if he hadn’t been sole caregiver of a demanding S. he couldn’t see upsetting the routine they had established. </p>
<p>My friend who is working to set up an adult group home is unique and has the skills and resources to succeed.</p>
<p>emeraldkity4, Oh my. I wish I hadn’t read your post right before bedtime. It may keep me up worrying. That wrong bus, bad neighborhood story is the classic safety concern for most parents and more so with special needs kids. Our DD also has a cell phone which is comforting when her bus to work is delayed bringing her home and I can hear her voice.
When she decides she’s ‘too busy’ to pickup, it drives me insane.</p>
<p>dstark- some of DD’s friends work very PT at Trader Joe’s (a lovely small grocery), CVS, Harmon’s pharmacy, a small local day care, etc. None of them have significant ‘real’ jobs. Sigh.</p>
<p>Housing, oh no. I’ll have to worry about that tomorrow.</p>
<p>I appreciate the kind posts here on this thread. Makes me feel less alone, really.</p>
<p>Ross, Safeway, McDonalds and even WalMart have been known to hire some special needs folks–very part-time but a JOB. It’s tough enough for most young people to get a job, but if you throw in special needs, it’s that much more challenging. </p>
<p>We are hoping that in spite of Ds ongoing stamina issues, she has acquired a useful enough skill set that she can have a REAL JOB. Stamina is an unwritten requirement of most jobs.</p>
<p>I know safety is a huge concern, especially when kids are impulsive.
But most people are good- and can help if they have good instincts about who to ask.</p>
<p>My own D, has some mild differences, but the ones I was most concerned about was her stubbornness, and her anxiety, which made her more likely to try and take care of things without asking for help.
She went to rural southern India by herself, after high school, and I am not sure how she came home in one piece. But she did.:)</p>
<p>There is a full timer at a Safeway. I also know a few special needs people who are getting 20 hours. We have Trader Joes, and a CVS near us. There is also a Safeway that isn’t far. We are going to try all those. If we can get several hours at two places we will take that too. Most special needs people seem to be in day programs that keep them busy. This means they can’t or don’t work. Instead they paint, quilt, work with animals, farm etc. </p>
<p>Musimom, does your daughter have an advocate? Somebody that will try to get her a job? In a day program? Etc…</p>
<p>My daughter has people looking out for her. When she turns 22 she does lose some support.</p>
<p>Emeraldkity4, wow. That must have been nerve wracking. I am trying to relax now. I am doing a good job of it too. What your daughter did would throw me over the edge.</p>
<p>Himom, stamina is a big issue. We think 20 hours a week of working would be close to the max for my kid.</p>
<p>It *was *pretty nerve wracking especially since she didn’t check in often.( and had her wallet & phone stolen soon after she arrived. She bought another, but since you needed a new sim card in each region, she didn’t bother, so I couldn’t usually reach her)</p>
<p>She did call me when changing trains, usually at 11:30 pm here. She was participating in volunteer projects she had arranged in the States, but after doing that for several months, she decided she wanted more time to travel. She did have a traveling partner though, a European woman who had been on the same project. But when I would call the places they were supposedly staying, no one spoke English. Lots of phone tag.</p>
<p>I thought I was brave letting S who had missed 1/2 of SR year due to health issues go with marching band to Australia. You’re much braver than I. Somehow didn’t worry when same kiddo went to Thailand alone 4 years later. D has t done any solo travel yet. She’s very social and so far enjoys company.</p>
<p>My D will work like a demon for brief spurts and then crash and burn. She is getting better at pacing herself but still tends toward crashing and burning. <sigh>. She’s never yet held any full time job and not sure if or when that will happen. Am glad we will be able to get her health insurance when she ages off H’s policy at 26, even if she hasn’t gotten a full time job.</sigh></p>
<p>Well the thing about being a parent is that once they are an adult, they are the deciders. You are just along for the ride!
It was worth it though. She had an amazing experience and became more fully herself.</p>