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Parents of disabled kids thread...

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Replies to: Parents of disabled kids thread...

  • dstarkdstark 33322 replies919 threads Senior Member
    Yeah! I agree with you!
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  • frazzled2thecorefrazzled2thecore 1097 replies1 threads Senior Member
    edited August 2014
    musicmom -

    No concrete suggestions here, although your plan to meet with a counselor at planned parenthood who has experience with this population sounds like a good one to me. I would ask around in your area to see if there is more than one person claiming expertise and interview a few people before settling on one counselor if this is financially feasible.

    So much to consider, including whether your D is used to being alone with young men without supervision, the types of media she has been exposed to that might encourage different types of unrealistic or unsavory expectations, whether she is rule-bound enough to follow literal directions to postpone sex or use contraceptives, or whether she wants to have a child.

    As I mentioned in another post, the questionnaire that we fill out does ask if our S would be interested in having a romantic relationship (although avoids any mention of contraception) so I am guessing that there is a pool of expertise somewhere, and that this comes up outside of the context of a disabled adult being sexually abused. I am aware that there are clients at S's day program that talk about boyfriends and girlfriends, so I would guess that there are supervisors in these types of programs with experience in these matters. You might want to ask around at your D's workshop and get a heads up on how they routinely handle this type of thing and then be proactive if there is any aspect that does not sit well with you.

    There is some literature on autism and sexuality that seems to address the needs of individuals whose biggest issues are missing social cues, but who do not have intellectual impairment. This might be helpful to you even if your D is not on the spectrum and has some intellectual impairment, keeping in mind that overlap with your situation would be partial, since this type of literature is generally good at spelling out an entire continuum of behaviors and possible expectations.

    Dealing with our non-verbal S's adult sexuality has meant a continuation of dealing with public nudity and masturbation or attempts to grope women, including staff, strangers, and female friends of his siblings. Luckily, most of the worst seems under control for now, and he is compliant with attempts to re-direct. He is never in an unsupervised situation, though, not even when he showers or bathes since there is concern about seizures. He does wash and dress himself under supervision. He has both male and female staff.

    We and his agency have worked with behaviorists when behaviors have escalated and female staff have been given strict guidelines on the type of touching that is permissible, and what to do if he attempts inappropriate physical contact. (As an aside, when he was younger and we tried sensory integration therapy, there was a huge concern on our part that some of the therapy seemed to have the potential for sexual arousal.) And, there is always the worry that he could be abused by staff or another client, but this does not seem at all likely in his current situation.

    edited August 2014
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  • musicmommusicmom 2461 replies89 threads Senior Member
    Frazzled, thanks for your thoughtful response. I appreciate your sharing some info on your son, it's so helpful to learn how others are coping even though each situation is unique.

    We are fortunate that our D is able to remain on my employer health coverage because of her disability. So, she has really good coverage in addition to her Medicaid coverage. She has ongoing weekly counseling already that has been excellent in addressing her focusing issues, life skills, socialization issues. The planned parenthood educator has been recommended through her primary care who is a developmental specialist so I'm feeling pretty comfortable. I will still interview her though, just my MO.

    Our daughter has never been alone with a male friend, I am unsure of her ability to know and stand firm for what she wants as opposed to going along. She wants to "have a boyfriend" but to her that probably means holding hands and slow dancing. Doubt she is feeling more at this point.

    Again, thanks. And best to your family.
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  • Dad_of_3Dad_of_3 1964 replies103 threads Senior Member
    Didn't see the thread till just now. Based on how I reacted for a temporary physical injury to one of my kids, I truly believe I would have just fallen apart in the situations mentioned here. I just wish you all the best.
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  • bajammbajamm 1691 replies19 threads Senior Member
    I also just found this thread, I am not on nearly as much as I would like to be. I have a 16 yo son that is mildly disabled. He does not qualify for SSI or a disability check, but he does have an IEP and is in special ed at the high school. He has a dx of pervasive developmental delay, and has been delayed in almost every respect.

    He *may* graduate high school on time, though his GPA won't be the best. He may be able to get a drivers license. He did pass the learner's permit just before his 16th birthday, Iowans are allowed to get a learners permit at 14. He badly wants to take drivers ed now, though I probably won't let him until next summer, when he has more practice and can take it without being in his other classes. He will be a junior in high school this year.

    While I am glad that he will likely get a regular high school diploma, I worry that he won't be able to handle college (if he can even get in with his GPA) and I worry about how he will support himself in years to come if he does not have a college degree and does not qualify for a disability check.

    He has shown a big interest in photography. Our local community college offers a year long diploma course in photography. I hope he can be accepted there, handle it well enough and maybe build a career out of it, though he'd need help with the business side of it.

    What do people do that are kind of on the bubble? The best they can do is a minimum wage job with no governmental benefits? How can they afford to live? (and maybe this has been answered, I have not read all of the posts yet).
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  • dstarkdstark 33322 replies919 threads Senior Member
    "What do people do that are kind of on the bubble? The best they can do is a minimum wage job with no governmental benefits? How can they afford to live? (and maybe this has been answered, I have not read all of the posts yet)."

    I know 3 disabled young people that were turned down for ssi. I dont get it. They can receive food stamps.

    Around here, Safeway, the supermarket chain, hires many mildly disabled people and gives them lots of hours. I think they pay more than minimum wage and employees receive health insurance.

    Bajamm, hopefully there are companies near you that do this. If he doesnt receive employer backed health care..in many states, ACA can help your son.

    There are organizations that help with employment. Has this been discussed at your iep meetings?
    Organizations like this...
    http://www.arcnj.org/programs/project_hire.html

    Housing...I dont know what happens to those on the bubble.
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  • musicmommusicmom 2461 replies89 threads Senior Member
    I think it's almost more challenging for kids with mild disabilities.

    Don't know if it's specific by state.....I know that our DD did not qualify for SSI until she turned 18.
    Before that, our income made her ineligible. After 18, only her very limited income counted in the evaluation.

    Are there vocational rehab services that could help him determine possible jobs other than min wage jobs?
    In nj, the state runs the Div of Vocational Rehab Services, they offer assessments, placements and follow ups after placements. Good luck.



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  • ShrinkrapShrinkrap 11539 replies251 threads Senior Member
    Bajaam, dstark, with regard to it seems to matter what disabilities are listed, and who fills out the forms.
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  • bajammbajamm 1691 replies19 threads Senior Member
    Thanks for the responses, I will check out the vocational services available, though not sure how to pay for those. And, I will check out the link dstark shared.

    It has been a couple of years since we applied for disability. (Maybe we should try again, not sure). We were turned down outright, so it would not matter whose income we were (or were not) counting. We asked for an appeal and go the appeal, we were again denied. S's counselor talked on the phone with them several times. We sent in the detailed paperwork from an evaluation at the Center for Disabilities and Development at the University of Iowa. We sent in reports from his special ed teacher and copies of his IEP. I am not sure what else to send in.

    And, it may be that he is capable of working full time. I just don't know what kind of job that will be without any sort of college education and that he will earn enough at a lower skill level job. And add to that managing his personal finances, cooking, cleaning, all of that. He already does a decent job of doing his laundry, though I know he would forget to eat if I didn't remind him. (he is 6'3" and about 120 lbs. and that is with me nagging him to eat). It is not that he can not do any of his own personal stuff, it is just that he gets overwhelmed easily. If he has a long day at work, or am important project to do, the other stuff will slide, then he won't be able to do it because the piles of dirty dishes, laundry, etc, is so huge he won't know where to start.

    Maybe I should talk with his doctor about applying again.
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  • frazzled2thecorefrazzled2thecore 1097 replies1 threads Senior Member
    @bajamm - Would it be possible to keep your S in school to age 21 or whenever educational entitlements run out in your state? This is routine for students who are not on the college track, and I have heard of this happening with occasional students headed for four year colleges as well. Of course, if your S will not buy into this, or programs are impossible to find or create, this would be off the table.

    I have heard of some mildly disabled young adults in this area getting help through vocational rehab services, sometimes after dropping out of college or community college.

    Have you checked with your local ARC to see what might (including advocacy services) be available?



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  • ShrinkrapShrinkrap 11539 replies251 threads Senior Member
    edited August 2014
    What kind of special ed makes a difference. A Special Day class signals much more impairme t than just an IEP with accommodations.

    A lot of kids I see with IEP's in SDC's have mild DD's AND a psych diagnosis. If there is a psych diagnosis, it might help to have a child psychiatrist take a look at the previous application....IF she knows your child and wants to advocate. I am not going to lie; I often fill out these forms and do not feel good about it.

    "...and that he will earn enough at a lower skill level job. And add to that managing his personal finances, cooking, cleaning, all of that"....


    FWIW, I have the same concerns about my VERY bright D, who graduated from a top school, and I am not kidding.
    edited August 2014
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  • bajammbajamm 1691 replies19 threads Senior Member
    S has an IEP with accommodations and sees a special ed teacher one hour a day. He is mainstreamed most of the day. I always thought that English, reading and writing were his weaker subjects (he was 2+ years behind in reading in 6th grade, though he has somewhat caught up) and that is what his IEP is for. Some of his accommodations are the right to ask the teacher for pre written notes, so that he can just listen in class instead of trying to listen and write at the same time. But, he took geometry this past year and did not do well at all. The geometry teacher passed him for the math credit but would not let him go on to Algebra 2, so he is taking consumer math this year instead.

    He also almost failed biology this year. His biology teacher was at the last IEP meeting and said that chemistry probably was not a good idea, S would not be able to handle it, so he is taking earth science as his last required science class.

    He will have a new special ed teacher this year, I will ask her for help in what local agencies would be appropriate to ask for help for post high school employment.

    S does see a pediatric psych doc. There is a major shortage of them in Iowa and there is one available to us just one day a month because he moves around the state to other clinics. I will likely ask him to do a new evaluation (it has been awhile) and then ask his opinion on filing new disability application.
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  • ShrinkrapShrinkrap 11539 replies251 threads Senior Member
    edited August 2014
    Yikes! Don't say you heard it from me! If your ped psych is pressed for time, I wouldn't be sure a "re-eval" is the best use of her time. The way I see it, working with kids is an ongoing eval. It never ends. Assuming you are given time to think that way.

    I just meant IF your child has a psychiatric diagnosis ( a mood disorder, an anxiety disorder, a dksruptive behavior disorder; doesn't seem so from your description) , it should be included on the ssi application, and the psy doc can review tbe application to see if it captures his limitations.

    Good link below! It was here kn CC that I got a better understanding of SSI vs SDI!
    edited August 2014
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  • oldmom4896oldmom4896 3928 replies292 threads Senior Member
    I don't know if this is helpful but here's a description of the appeals process for SSI and SSDI.
    http://www.nolo.com/legal-encyclopedia/social-security-disability-appeal-levels-32398.html

    It's my understanding that many more cases are approved on appeal than in the original application, but I'm not sure which level(s) of appeal.
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  • bajammbajamm 1691 replies19 threads Senior Member
    Thanks, oldmom.

    And, shrinkrap, the idea for a reeval was all mine, I will own it. It just has been several years since his first dx and it was not this doc that did it. Maybe a better statement from me is this: I wonder if a re-evaluation would be beneficial since it has been several years, the first was done by a different doc, and S has gone through puberty in the mean time.

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  • ShrinkrapShrinkrap 11539 replies251 threads Senior Member
    O:-)
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  • musicmommusicmom 2461 replies89 threads Senior Member
    My comments might be state specific, but worth looking into:
    Our school district is REQUIRED to conduct a reevaluation every 3 years, at district expense, unless the parent waives it.

    The vocational services provided through our state DVRS are at no cost to the applicant.

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  • ShrinkrapShrinkrap 11539 replies251 threads Senior Member
    edited August 2014
    "Our school district is REQUIRED to conduct a reevaluation every 3 years, at district expense, "

    But that is "psychological", and focuses on academic impairmrnt, not " psychiatric" . School districts can classify as "seriously emotionally disturbed" but they generally don't make "psychiatric" diagnosis. For the purposes of SDI or SSI, sometimes kids are dually diagnosed, and most files have to access their mental health benefits, or county mental health services for assessments.
    edited August 2014
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  • musicmommusicmom 2461 replies89 threads Senior Member
    Thanks for that correction, shrinkrap.

    I'm apparently mushing all the various evals and assessments our DD has had from age 3-21.
    Sorry about that.
    Yes, for SSI at age 18, we had to submit psychiatrist report as well as testing results from the developmental disabilities clinic at our medical center.
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  • frazzled2thecorefrazzled2thecore 1097 replies1 threads Senior Member
    edited August 2014
    In our state (PA) , a re-eval is done every three years for iep purposes.

    It does not have to include a psychiatrist's report.

    Our non-verbal S gets his adult benefits because of his MR diagnosis, even though he is also taking medication prescribed by a psychiatrist. His measured IQ has hovered around 20 for the past decade or so, although he scores higher on some adaptive scales, sometimes on par with those considered to have moderate impairments.

    Autism or PDD does not currently bring benefits such as SSI without either MR, or mental illness diagnosed by a psychiatrist at a level that would preclude unemployment or underemployment.

    I would make every effort to take full advantage of special education entitlements, since these are almost always more comprehensive than adult entitlements for higher-functioning individuals, at least in the short run after aging out of school.
    edited August 2014
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