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Parents of disabled kids thread...

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Replies to: Parents of disabled kids thread...

  • jym626jym626 Registered User Posts: 57,384 Senior Member
    You think its going to the Supreme Court, @BunsenBurner?
  • cptofthehousecptofthehouse Registered User Posts: 27,961 Senior Member
    I do volunteer work at a housing unit that has a lot of intellectually disabled adults. Most of them do not have anyone to oversee their care other than the paid staff and volunteers. Those whose parents have died do not have other family members active in their lives. The incidences of misfortunes and troubles that happen to these individuals is very high. The turnover is high with many getting moved to nursing homes and jails. That was always my fear about having a disabled adult child which is why I spend some of my time there. It’s as I expected and feared. When the parents are gone, life takes a sad trajectory downward for those who cannot live independently.

    The model here can work with just a bit more commitment in staffing and more involved family members. More money and more supervised job opportunities would make a big difference too. The shortfall isn’t hopelessly far fetched. But for now, it isn’t working all that well.
  • SOSConcernSOSConcern Registered User Posts: 3,835 Senior Member
    @cptofthehouse I have a friend whose SIL was disabled - the parents didn't involve the siblings enough, and didn't have a real plan for when they passed. I know nurses that work at some of these local community homes, and this gal did go to one of these homes - brother and SIL/other family keep close ties.

    It just depends - as will all facilities and experiences there is a range of care and caring people.
  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,325 Super Moderator
    I'm trying to keep my son's siblings well-informed about their brother. My middle child has told me he will do whatever he needs to in order to care for his big brother one of these days. I'm glad we've got the 529 ABLE account started - there is already $7,500 in it after just a couple of years. I think he will have a good amount of money before his dad and I pass.

    We know we are fortunate that he lives in such a good facility. They give him rides to and from work (two days a week). They administer meds and check in on him often. I know it helps that his dad and I stay so involved, though. For example, it took a LOT of "encouragement" on my part to get his case manager to find affordable dental care for him. I don't think that would have happened if I hadn't insisted on it. :(
  • dragonmomdragonmom Registered User Posts: 5,984 Senior Member
    You are a wonder!
  • musicmommusicmom Registered User Posts: 2,513 Senior Member
    Yes. I knew I wasnt imagining just how awful Aetna is.
    I've had nothing but trouble since my employer moved to Aetna jan 1.
    Lots of in perfectly processed claims. EOBs that have at least one error, incorrect denials.

  • psych_psych_ Registered User Posts: 1,583 Senior Member
    @momsquad , how is your D doing?
  • momsquadmomsquad Registered User Posts: 1,148 Senior Member
    @psych_ , Thanks for asking! It's been 2 years since I posted here and I've learned a great deal in that time. I'm so grateful for the recommendation to seek out information from NAMI.org, they were the single most helpful source of information on this journey.

    My daughter is doing well, considering what she has endured. She has not relapsed in two years and tapered off of her antipsychotic medication six months ago. The psychiatrist has yet to suggest a diagnosis for her, as she doesn't quite fit any DSM label. Looking back, her symptoms started after she was prescribed Adderall so we suspect it may have contributed to the psychosis.

    She has worked in a temporary part-time job at a public school for the past year and loves it. She has plans to attend graduate school for a Master's in clinical counseling but it's been difficult to account for the 'lost year' after her psychotic episode. She does not want to mention her experience on applications. One ray of light is that California is considering a bill to allow peer counselors to acquire certification. This would allow reimbursement through MediCal, and hopefully open up more jobs for people with past mental health and substance abuse challenges.

    Our biggest disappointment has been our inability to find quality psychiatric care and rational medication management. This article in the New Yorker is an excellent description of the problems many people face once they begin visiting a psychiatrist:
    https://www.newyorker.com/magazine/2019/04/08/the-challenge-of-going-off-psychiatric-drugs
  • Redacted1Redacted1 Registered User Posts: 62 Junior Member
    Man, ya’ll don’t get enough credit. Good luck with everything. This thread half breaks my heart.

    I could only imagine what you all go though, and how difficult, challenging, and humbling that must be.

    I constantly thank my lucky stars that I am as lucky as I am.

    Best of luck again.
  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,325 Super Moderator
    Maybe other parents already know this, but I thought I would share. If you have an adult child who was certified as disabled before the age of 22, he or she is entitled to receive a total of 75% of your SS monthly benefits! That means our son will get at least twice as he's getting now, once DH starts collecting at age 70 (five years from now).
  • siemomsiemom Registered User Posts: 459 Member
    edited April 15
    @momsquad - thank you so much for sharing that article! DH and I had long discussion after reading...our DS has been on meds since age 7. Every time he tapers off, symptoms return and then he's on another cocktail. Stable now at almost 27 but can only work PT, lives w/ us, and has never had a relationship. Lots to think about.
    BTW - he had a psychotic break after 2 days on adderall. Fortunately resolved quickly once adderall was stopped.
  • bajammbajamm Registered User Posts: 1,581 Senior Member
    We moved from Iowa to California about 15 months ago for H's job. Our son came with us, he was 19 at the time and is now almost 21. He is on the autism scale, though is higher functioning than many.

    It has taken this long for us to really settle into services for him, though we seem to have finally gotten going. He now has a job coach through Vocational Rehabilitation that has been sending him to several interviews a week. We also met with a regional center case manager yesterday who will get him a bus pass, expand what the voc rehab person can do with jobs and employment and she will also try to get independent living skills support for him.

    My question is should we try to get him on disability? We had applied in Iowa when he was a minor, were denied and appealed several times, hired a lawyer and saw a judge who ultimately denied it. The lawyer did not get paid since we did not win.

    The case manager yesterday suggested trying again as an adult this time. She did say we would probably be turned down the first time again.

    My main concern is that he has shown that he can sort of handle community college classes. He has just 14 or so hours to finish an AAS degree. That is different from an AA degree, the extra A stands for applied and the math/science requirements are a lot easier. He barely has a 2.0 average with several D minuses and one F on his transcript. His having the 2.0ish GPA at CC is one main reason his disability was denied in Iowa.

    He had to quit CC to move with us and has not moved towards figuring out how to finish it here.

    Is it worth trying again to get disability?

  • HImomHImom Registered User Posts: 34,234 Senior Member
    Are there doctors who state in their records and will testify that your son is disabled? That would help, I believe. Having him declared disabled can help him get and keep some income and also medical coverage under Medicare. If you can review why the judge and decision went against your son and how to convince them that your son is indeed disabled, there seems to be not much to lose.
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