Parents of disabled kids thread...

<p>LOVE reading of the successes on this thread.
Our DD will never get a 4 year degree. Maybe at some future point she coulD
Attend our local CC just for fun and enrichment.
I like to hear that those pesky IQ numbers dont always tell the whole story.
Our daughters last test i think was 65. Yes, she has significant deficits, especially in anything math.
But her everday vocabulary is pretty amazing and she surprises us sometimes when we’re all playing along on Jeopardy. So, i do try to not focus on that number.</p>

<p>My parent small victory today is a new app for my kindle fire that lets me EDIT word docs. I previously had only a viewer. Now, i can sit in front of TV, and in about a minute, edit a template and email to DD’s accesslink bus people a request for service for upcoming week. MUCH superior to phone wait and repeating info each time.
Im gonna see if i can show DD how to submit!
Celebrating anything that makes my crazy life a bit easier!</p>

<p>On my son’s IQ results, the different subtests have different scores by FIVE standard deviations. One was a percentila so low I didn’t realize it was possible to have a score that low, and another was 99+ percentile. The psychologist explained that neurotypicals usually have subtest scores that cluster.</p>

<p>I struggle with the question of whether my D will be successful in college. Her IQ was tested at 85, yet she is 3rd in her class. Sometimes I wish I didn’t know the number. We’ve had multiple testings over a long span of time. The educ psych is worried about her hitting a “ceiling” or working so hard she burns out. I’m worried about both of those things.</p>

<p>Her working memory tests <5%. Her challenges are with dyslexia, comprehension, analysis of literature, etc. Math and science are strong. I don’t want to limit her success, but I also don’t want to set her up for failure. </p>

<p>Srystress, good luck.</p>

<p>@sryrstress, be sure to work with the disabilities office at whichever college your D attends. They will work with you and her to come up with appropriate accommodations. Colleges want students to succeed!</p>

<p>How do you handle it if your child (disabled or not) wants to do something that is appropriate for most young adults but you don’t think your child can handle it for whatever reason? Do you tell your child no? Or do you allow/accept that your child will do it and then be there to help pick up the pieces if or when the child fails?</p>

<p>My son wants to go to a 4 year college upon high school graduation. A lot of people are telling us that he can maybe handle a community college and are discouraging a 4 year college. I am not sure where I land on it, other than I want him to be in the most challenging situation without setting himself up for failure (probably a spot most parents find themselves, no matter what the circumstances are.)</p>

<p>My theory is, if he can handle a community college, then shouldn’t he be able to handle a 4 year college? If we can find a 4 year school that is close to home and within our budget that will accept him, shouldn’t he be able to try? He doesn’t want a community college. If I tell him it is a community college or nothing, he would likely choose the nothing. Would I be denying him something he could have been successful at? And maybe sentencing him to a lifetime of struggling financially or us to a lifetime of him being dependent on us? He was denied disability the one time we applied, though we are getting ready to apply again and may be successful.</p>

<p>We sometimes get to the point where he is showing signs of maturity and self sufficiency, where I think AH, he gets it and will be fine. Then, the next day he “forgets” that he has a major paper due in English and blows that grade.</p>

<p>I am at a loss as to what to do with him, he is not fully disabled in the eyes of the state and he is not nearly as self sufficient and self motivated as other 16 year olds.</p>

<p>Failure is ok. </p>

<p>If you want to try a 4 year school, go ahead. Otherwise you are going to be wondering about the what ifs. </p>

<p>Many people have gone to community colleges and then have gone on to 4 year schools.</p>

<p>The thing about community college I have seen and experienced, I went to one decades ago so maybe my experience is too old, is you can take courses that are easier than courses at 4 year colleges at a community college. </p>

<p>Or… You can take the equivalent courses at a community college compared to 4 year colleges. </p>

<p>I am saying this again. It is ok to fail. Don’t make a big deal about failure. It is hard to succeed if a person is worried about failing. </p>

<p>If you fail, you fail. Try again or do something else.</p>

<p>

</p>

<p>Not necessarily, says this parent of a kid who could handle community college but not going away to a 4 year college.</p>

<p>We’re taking the middle road with our son - he is attending a four-year university, but it’s the tiny one in our town. He commutes from home (thank God he can drive - I know a couple of other young people with his illness who don’t). He takes only two classes at a time, also, which would be prohibitively expensive if he were living away from home.</p>

<p>Here’s a poll question:
Do parents with adult disabled children living at home charge them rent?</p>

<p>We never have but another parent got me thinking. Our DD receives SSI, reduced about $250 a month specifically because we provide room and board for het at no charge. She also earns a very small income from worksop and will now receive SSD on her dad’s retirement claim.
If we charged her rent, her SSI would increase. The plan suggested was to use the rental income to purchase life insurance to be paid to her trust on our deaths. This would augment the 1/2 of our estate she will receive. Other half to brother.
I could also envision piling that money up as downpayment for a private shared group home for her down the road.</p>

<p>Ideas?
If you do collect rent, is it required to be reported to IRS? Even from family in shared primary residence?
Also, we’d probably no longer be able to claim her as dependent on our return…</p>

<p>Im planning on a discussion with our tax person but i know there’s alot of great people here!</p>

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

<p><a href=“SSI Spotlight on Living Arrangements”>http://www.ssa.gov/ssi/spotlights/spot-living-arrangements.htm&lt;/a&gt;&lt;/p&gt;

<p>Hi dstark, been to that page, its a good explanation of why SSI is set for different living circumstances.
We know why our DD’s benefit is reduced. Wondering if we should push for the higher benefit by charging her rent and then using the “extra” for her future benefit in insurance/housing.
Not interested in pursuing anything unethical or illegal, just what she’s elible for. :)</p>

<p>We do charge our son rent - $540 a month. I use it to pay his college tuition.</p>

<p>The tricky part is that you’re really not supposed to save it for the future. If you put it in a savings account in your child’s name, it counts as part of his or her resources. If those resources go over $2,000, a person can lose SSI benefits. Kind of short-sighted IMO!</p>

<p>MaineLonghorn,</p>

<p>Does your son get more from ssi because he pays you rent?</p>

<p>Is the rent taxable?</p>

<p>Do you have a special needs trust set up?</p>

<p>ML- agreed, SSI recipient cant have>$2K in assets. Very clear on that.
If our DD began paying us rent, it would be a new expense for her, which would give her the higher SSI monthly amount ($721?). Hers is currently reduced due to her free room and board.</p>

<p>The rent she pays to us would then be our asset, no longer hers. Would be saved in our names.
But that wouldnt stop us from using it for her benefit, as i mentioned above. Would not effect her SSI.</p>

<p>Seems like you are gifting back to your son his rent money paid to you. Thats your (wonderful parent) choice.
But i dont think either of us is REQUIRED to use those rent payments for chilfren.</p>

<p>Am i missing something?</p>

<p>Oh, no, we’re not required to use the rent for our kids. It’s to defray the cost of them living with us.</p>

<p>dstark, he gets about $230 more a month (total of $721 from Feds and another $10 from Maine for some reason) since he pays us rent. I will ask our accountant about the taxes when we meet next month. Haven’t set up a trust yet. It’s too soon to tell if he will need to live with us indefinitely. We’re taking it one day at a time. He will get his bachelor’s degree in applied math before too long. His case manager just signed him up for vocational counseling - I hope it’s helpful.</p>

<p>MaineLonghorn, thanks.</p>

<p>I have never signed my daughter up for medicaid. I may sign her up this year. The woman dealing with my daughter’s case at SS wanted to be notified when my daughter signs up for medicaid. </p>

<p>Why?</p>

<p>dstark, do you have a special needs trust for your daughter?</p>

<p>Yes.</p>