right arrow
Examples: Monday, today, last week, Mar 26, 3/26/04
STUDENT GUEST OF THE WEEK: Ethan is a burgeoning tech enthusiast who got accepted into Harvard, Yale, Princeton, Duke, Brown. This week he's answering your questions on how to best craft your application and narrow down your college search/decision process. ASK HIM ANYTHING!
Concerned about how to pay for college amid COVID-19 economic changes? Join us for a webinar on Thu, Apr. 9 at 5pm ET. REGISTER NOW and let us know what questions you have and want answered.
Most of the decisions are in by now. Connect with fellow students and share support for those who didn't get the best news.

Parents of disabled kids thread...

13536373941

Replies to: Parents of disabled kids thread...

  • DeniseCDeniseC 1085 replies91 threads Senior Member
    @pickledginger We are able to keep our kid on our health insurance past age 26 because of a mental health disability. It takes a letter from his psychiatrist. I found it by poring line by line through the insurance policy.
    · Reply · Share
  • musicmommusicmom 2470 replies89 threads Senior Member
    I was able to continue medical coverage for our intellectually disabled daughter past age 26.
    This was on my employer provided self funded plan. I dont believe they were required to continue her coverage but did after documents from her psychiatrist.

    She became eligible for Medicare at age 28, with Medicaid as secondary. This has been fine for her needs.

    I retired last year and doubt she could be continued onto my retiree coverage (my DH is covered).
    So we're happly for the Medicare/Medicaid.
    · Reply · Share
  • MaineLonghornMaineLonghorn 40395 replies2207 threads Super Moderator
    SO thankful for Medicaid!!! We can get my son all the help he needs and it doesn't cost us or him a penny. I'm sure his care has cost hundreds of thousands of dollars by now.
    · Reply · Share
  • HImomHImom 35422 replies396 threads Senior Member
    edited February 18
    We have never tried applying our loved one for Medicaid or Medicare and are happy with our current coverage as a disabled dependent. If H and I both die, she will have to find coverage somehow, so maybe that would be Medicaid.

    Our coverage is only an extra $10 or so/month to have her on H’s policy as a family member. Her claims far exceed that.
    edited February 18
    · Reply · Share
  • bristleconebristlecone 38 replies0 threads Junior Member
    (aka momsquad, had to make a new account after login update and I like my new name better!)

    Our daughter qualified for an extension of insurance coverage but they require us to reapply every year. The form was one page and was approved with surprisingly little effort.

    She had a psychotic episode in 2017 followed by a roller coaster recovery with bouts of depression and fatigue. She tapered off of her antipsychotic medication last year, against the recommendation of her psychiatrist, and has had a steady improvement in mood and concentration. She still takes a mood stabilizer and antidepressant with no plan to discontinue them soon.

    She’s working part time and taking classes towards a Master’s in clinical counseling. No way she could afford an apartment of her own, and I think living at home provides needed stability. We get along well, though she should be contributing much more effort to housework etc.I’m slowly learning to let go and not be hyper vigilant about symptoms.

    One surprising source of comfort for me has been to follow notable psychiatrists on Twitter. Two of my favorites are @allenfrancesMD and @psychunseen (Joe Pierre). They discuss various aspects of mental illness and treatments. Allen Frances believes ECT is underused and has a good success rate when other treatments fail. I never felt we had adequate communication or support from psychiatrists/therapists through this ordeal. The NAMI 12 week course was a much needed resource when we needed it most.
    · Reply · Share
  • DeniseCDeniseC 1085 replies91 threads Senior Member
    @bristlecone /momsquad. It’s so nice to hear your update. Continued best wishes.
    · Reply · Share
  • MaineLonghornMaineLonghorn 40395 replies2207 threads Super Moderator
    The NAMI course is 8 weeks now. I’m teaching it in our town. I like how they’ve updated the material.
    · Reply · Share
  • compmomcompmom 11339 replies80 threads Senior Member
    My kid came to me last night and said she has decided not to discontinue Lithium and is stopping Lamictal, to which she was transferring. She is willing to endure nausea for stability. Her "head" did not feel right and she had only decreased the Lithium modestly. She realizes this is not a great time for her to make this change after some drama at work, new college course, and roommate drama that drove her out.

    I wish I had a real home to provide. I sold my house due to a divorce in 2014 and have been moving around in small seasonal apartments, because the housing market here is in crisis. I do winter and summer rentals. This is not a stabilizing situation for her. I am looking for a more stable situation. Rents $2000- $2800 for two for the most part. But better than paying for two separate rents. I feel terrible about this.
    · Reply · Share
  • compmomcompmom 11339 replies80 threads Senior Member
    edited February 19
    Is there a rundown of the NAMI curriculum somewhere? I have been reading books for so many years I am afraid I will be bored. But from what all of you are saying, maybe I should look into it. I really can't talk to anyone at all. Small town, judgmental family, friends with their own problems.
    edited February 19
    · Reply · Share
  • morkatmommorkatmom 64 replies10 threads Junior Member
    Definitely find a Family to Family class. Yeah you probably know more than the majority of the people in the class, but you can share your knowledge and you absolutely will pick up something new. It isn't just learning about mental health diagnoses, meds, therapies etc. but also about how to take care of yourself so you can help your loved one. On a practical note, they brought in speakers and talked about navigating the system re: housing, medicaid, ABLE accounts etc. I wish they had devoted much more time to that aspect to be honest since that's the part that is so overwhelming and cumbersome to me personally. Sometimes it helps just to know you aren't alone and that is a very big thing. I can tell you my D's psychiatrist sat in on the class a while ago and even he learned something.
    You're supposed to commit to the full 8 weeks of classes, and they're free so you're not wasting any money to learn something you already know. I went to the 12 week class and found it to be a little repetitive, in fact I blew off one of the classes because it was summer and a beautiful day, so I'm glad they knocked it down to 8 weeks. They give you a binder with the curriculum in it so you know what to expect each week.
    I found it to be a good use of my time.
    · Reply · Share
  • MaineLonghornMaineLonghorn 40395 replies2207 threads Super Moderator
    @morkatmom thanks for that summary and review of the class. I like the shorter version, also.

    As much as I've learned about mental illness and the system, I still get something out of the class every time I teach it! I had to cancel class last night due to snow, and I was bummed.
    · Reply · Share
  • compmomcompmom 11339 replies80 threads Senior Member
    Lots of acting out here. Very difficult. Not in the mood for Family to Family right now.
    · Reply · Share
  • bristleconebristlecone 38 replies0 threads Junior Member
    @compmom, any chance your daughter might be willing to attend the peer to peer group meeting? Our NAMI chapter offered the parent to parent and peer to peer on the same night so we could go together. My daughter liked the group, and the leaders were also peers. It was helpful to have some semblance of socialization during a very lonely time. Hope tomorrow is a better day.
    · Reply · Share
  • DeniseCDeniseC 1085 replies91 threads Senior Member
    @compmom I’m sorry to hear about the failed med change. I hope the lithium ramp up helps. But were there events/happenings before she decreased lithium that indicated it wasn’t working well enough? Can the nausea be combatted with how she takes the lithium (with food, timing, extended release)?

    It’s not fun to be around for the acting out. It’s the disease, not the daughter and you are a great mom for providing a home for her during the tough times.
    · Reply · Share
  • compmomcompmom 11339 replies80 threads Senior Member
    edited February 20
    Thanks. She has tried lots of water, food, extended release, differing timing. I suggested maybe getting it compounded and even taking tiny amounts all day. I want her to go to a hospital bp clinic where they specialize and have a lot of innovative things going on, but it is hard to get her to agree or go.

    I don't really feel like I am providing a home in my smallish apartment. I looked at a two bedroom last weekend and cancelled at the last minute (due to cost), which she said "destabilized" her, so I am feeling terrible. Now she is combative and says she is moving out even though nothing has changed except her brain. It is hard not to feel like I ruined something even though I know in my head that I did not destabilize her, but she was already destabilized.

    If I had stuck with the apartment, we would be moving in in three weeks. I wish I could roll the tape back.

    I am in the middle of some important decisions about further cancer and osteoporosis treatment, have to move by May, and luckily my elderly mother is stable.

    I just want to help my kid but everything seems to hurt her. She needs space but also needs help, two contradictory needs that are hard to navigate.

    edited February 20
    · Reply · Share
  • DeniseCDeniseC 1085 replies91 threads Senior Member
    Know that there would have been objections about moving and the 2 bedroom place too. All the contortions will not make bipolar go away.

    Would a call to the clinic give you suggestions on how to ‘meet her where she is’ or just plain get her there?
    · Reply · Share
  • compmomcompmom 11339 replies80 threads Senior Member
    At 28 she has privacy rights. I can talk in generalities. I do not have a medical proxy for her. I am going to try to contact them.

    The probability that signing the lease might also have caused a problem is the reason I didn't sign it. Things are too unstable. This is one of those times when you kind of pray for hospital.
    · Reply · Share
  • compmomcompmom 11339 replies80 threads Senior Member
    edited February 20
    She is allowing me to talk to her doctor. She has left, I don't know where she spent the night, and just called and is agitated and says she cannot live with me. This is all because I changed my mind about an expensive apartment. She says she cannot talk at all so I have to discuss it with her doctor. I don't know how others seem to have so much control over what happens. I have to just wait for bad things to happen. I'll talk to her doctor but I truly believe that approving her to go down on Lithium drastically was malpractice.

    When she was 17 she lived on the streets and in the woods. to avoid the "comfort" and "safety" of home. She came back and started Lithium and things have been relatively stable for 10 years.

    I'll stop posting about this and get to the phone with MD.
    edited February 20
    · Reply · Share
  • MaineLonghornMaineLonghorn 40395 replies2207 threads Super Moderator
    @compmom, you will be in my thoughts.


    EVERY time the doctor reduces my son's lithium dosage, he destabilizes. I'm going to insist we not play with it in the future.
    · Reply · Share
  • compmomcompmom 11339 replies80 threads Senior Member
    Psychiatrist called. Psychiatrist tried to get my D into the hospital she usually uses but her brand new insurance is not taken there. So now daughter's in the ER.

    Her MD has LIthium below therapeutic level and has not raised it. MD also raised SSRI. This alone could cause agitation. She stopped Lamictal which had not gone beyond very low dose.

    My daughter isn't answering her phone so I can't do anything but sit her and fret. could try and find her at local ER's but she probably won't let me in.
    · Reply · Share
Sign In or Register to comment.

Recent Activity