Parents of disabled kids thread...

<p>@dstark, that is so sad. We are still shocked that DS got approved the first time! He’s even getting two lump sum payments that will pay off his one small college loan. I have no idea how these rulings are made - throwing darts, maybe?</p>

<p>The person who approved ssi for my daughter told my wife that if you can work at a check stand for several hours at a 7-11 you don’t get ssi. That may just be his take. </p>

<p>I don’t know if the young woman can work at a 7-11. I think it would be very very difficult for her. (I have known her for 15 years). There would be days where she just couldn’t work.</p>

<p>I have my fingers crossed that she will get ssi. She also has an appointment next month with an employment agency that specializes on the disabled.</p>

<p>This young woman has a very good attitude. </p>

<p>MaineLonghorn, that’s great that your son was approved the first time. Two lump sum payments…awesome! Makes me wonder if the young woman could get a lump sum too. You can’t have more than $2,000 in assets, but paying off debt, never thought about that. </p>

<p>I don’t have a child applying for SSI, but as a taxpayer, when I become enraged at someone gaming the system, I remind myself that at least deserving people will get benefits. They both p&$$ me off, but deserving people not getting it is worse than the crooks. </p>

<p>I am not a doctor; I can only imagine the medical issues she has. There’s a special ring of hell reserved for those whose gaming the system indirectly lead to her denial of benefits. </p>

<p>“They both p&$$ me off, but deserving people not getting it is worse than the crooks”
Absolutely. This is a concept many people can’t grasp or don’t care to grasp. Now I have to censure myself so I don’t get in trouble. :)</p>

<p>There are many people that are not getting the benefits they are entitled to receive. When we were talking to some counselors, they were shocked that my daughter was getting ssi at age 18. There are a lot of people that just don’t know.</p>

<p>I was talking to a swimmer at the special olympics summer games and he told me he was denied ssi. When I first started talking to him, I thought, what are you doing here? You seem fine. You look good. After about two minutes, with the repetition in what he said and the obsession on whatever, it became apparent. He is not fine.</p>

<p>The job market is terrible for the disabled. The job market went to heck in 2007 and has not come back for the disabled.</p>

<p>The housing market is terrible for the disabled in Marin County too. There isn’t enough housing. Finances from the government and charities are stretched. Some of the people that work in the field are a little shady. (the pay is not a living wage).</p>

<p>I don’t know what I am going to do about housing for my daughter. I have to spend less or save more so my daughter is covered for the next 60+ years…which is very annoying. :)</p>

<p>I’m sure some people wonder why my son is getting SSI. But as dstark said, spend some time with him and you’ll understand. He does pretty well if there is ZERO stress, but that is a rare occurrence, even if you work in 7-11.</p>

<p>@dstark, it is difficult to comment without getting political, but I think it’s safe to to say that it is a shame that someone who has worked hard all his life, paid his taxes, and done whatever he could for his family has to worry about his child’s housing after his death. </p>

<p>IxnayBob,</p>

<p>Thanks.</p>

<p>MaineLonghorn, that is a good example.</p>

<p>My daughter knows a lot but…</p>

<p>I was driving my daughter to swimming practice and I asked her where she wanted to go to lunch after swimming practice.</p>

<p>She said, “Don’t ask me now. I am concentrating on swimming”.</p>

<p>To all sharing their family’s experiences on this thread: while this may not be your primary purpose, I thank you for posting your perspectives. I like to think that stating these truths may help your kids and adults by increasing understanding. No one should feel like others sit in judgment of things they could not possibly comprehend or be aware of, as it is personal information. You are helping me remember this every time I have an encounter that doesn’t quite add up, something I strive to do. </p>

<p>Wondering how to keep good options available to your loved one/s for 60 years is huge, never mind the rest of it. </p>

<p>I have a question that I hope won’t enrage anyone. How do you think about SSI and SDI money for a child? Not a young adult or older teen, but lets say 10-15 years old. I spend a lot of time on the paperwork, and I’d ather spend it on the kids. I’d love to think it buys services, or the time and resources a family needs to access services, but I worry all they are accessing is the pills I am prescribing. </p>

<p>As far as ssi goes, I don’t get what you are saying shrinkrap. Are the kids disabled or not? Do the parents meet the income and resource restrictions? I am not sure why the pills play a part. </p>

<p><a href=“Understanding SSI - SSI for Children”>http://www.ssa.gov/ssi/text-child-ussi.htm&lt;/a&gt;&lt;/p&gt;

<p><a href=“SSI Spotlight on Deeming Parental Income and Resources”>http://www.ssa.gov/ssi/spotlights/spot-deeming.htm&lt;/a&gt;&lt;/p&gt;

<p>I read the links, although quickly. I will read them again. </p>

<p>I need help understanding what I am doing and why. I fill out the paperwork, and a family may or may not get money. What is the idea behind the money?</p>

<p>Let’s say it is a 12 year old with ADHD, oppositional defiant disorder, and a learning disability. I gog forms regarding a boy in that situation, and was asked to fill out the paperwork again. In the interim I learn the family is struggling without his check. </p>

<p>I asked, but don’t know the details of the struggle, but would love him to have in home behavioral interventions or respite for the parents. </p>

<p>Mother works, but probably in agriculture without the right “papers”. She does not speak English. Father cannot work as he has his own issues. It might help to have him home with the kids, but I might pick someone else. </p>

<p>I know they can use the money for rent, but do you think is that the intention? </p>

<p>I mention the pills because I am the person to fill out the forms, and besides the forms, that is the gist of the service I provide. I wonder if I should be encouraging them to use the money for more, or is that none of my business. </p>

<p>“I know they can use the money for rent, but do you think is that the intention?”</p>

<p>Yes it is. The money is for necessities. I would consider rent a necessity.</p>

<p>If you read the income and resource restrictions, I think you will feel better about ssi.</p>

<p><a href=“Understanding SSI - SSI Income”>http://www.ssa.gov/ssi/text-income-ussi.htm&lt;/a&gt;&lt;/p&gt;

<p><a href=“Understanding SSI - SSI Resources”>http://www.ssa.gov/ssi/text-resources-ussi.htm&lt;/a&gt;&lt;/p&gt;

<p>You can own a home and a car… And 2,000 to $3,000. </p>

<p>The income restrictions are many. </p>

<p>Nobody is getting wealthy on ssi.</p>

<p>Okay, thanks. And for the record, I know they won’t get wealthy with the money. But I want the kids (there are twins) to meet their potential with no forces in play to keep them “sick”. Might sound terrible but it concerns me, and I want to put my concerns to rest. </p>

<p>Consider them rested!</p>

<p>"But I want the kids (there are twins) to meet their potential with no forces in play to keep them “sick”. "</p>

<p>I love that. </p>

<p>We are using the SSI for DS’s college tuition and two sessions of equine therapy a month (insurance won’t pay for it since he already has a regular therapist). That’s about all it pays for. Besides the lump sum paying off his college loan. Our income didn’t count since he is older than 18. We do well, but we still have his two younger siblings to worry about. He should be independent by this point, but he’s not. Considering his diagnosis, we are lucky that he is doing as well as he is, so I am not complaining!</p>

<p>SSI for a minor child can absolutely be used for that child’s share of necessities (food, rent, clothes), but it can also be used for anything that benefits that child, such as extracurricular activities, childcare assistance, or any other intervention or material good (e.g., augmentative communication device, assistive tech if appropriate and not covered by a public entity). My guess is a family such as described above might not be cognizant of resources such as behavioral intervention or respite (unless in the DD system-- case manager should be guiding them???). Or, they may need the SSI money to cover basics. That said, often no one is designated to help parents piece together an intervention plan that makes sense, should they desire that type of input. They may get some help at school and some outside help for meds or therapy, much needed. </p>

<p>Often, less-sophisticated families (especially if there is a language barrier) might not be able to figure out the maze of other services that could help them and their child. Even some activity in the child’s area of strength or interest, animal therapy (such as horse therapy), social groups a la Social Thinking SV, etc. Kristi Brandt describes this as looking at a child’s life and piecing together a therapeutic plan, considering every aspect of life in terms of the necessary elements for that child to thrive. (school, therapy, deep pressure activities for some kids, some outside time, Big Brother/sister program, friendly college student tutor, etc.) Some of these activities are free, but the idea is developing a schedule that can help the child regulate and learn the skills needed to thrive/enjoy life. Parents stressed financially in terms of covering the basics (including rent, etc.) might not have the cognitive reserve to even think about this, and if they do, might need support thinking about resources that makes sense for their family. Any SSI money left over can go to any item or activity. I have seen many families do this.</p>

<p>Thanks for your replies!</p>

<p>I see them at County Mental Health and they have a mental health worker who helps with those things. I don’t think she is “looking at a child’s life and piecing together a therapeutic plan, considering every aspect of life in terms of the necessary elements for that child to thrive” (I might have to try to think that way), but she helped them become clients of regional center, and they have had in-home behavioral interventions in the past. She advocates for them with the school, but their school district is fairly notorious. It is she that is helping with the SSI. She brings them to and from appointments. The county has been known to pay kids soccer registration and for uniforms. </p>

<p>Lovely story in the Times today about a wedding.
<a href=“A Couple Gaining Independence, and Finding a Bond - The New York Times”>http://www.nytimes.com/2014/10/05/us/a-couple-gaining-independence-and-finding-a-bond.html&lt;/a&gt;&lt;/p&gt;

<p>That IS a cool story. I’m thinking I might know “the birth mother”. </p>

<p>Oldmom4896, awesome story . Super uplifting. Thanks for posting it. </p>