@MaineLonghorn-
Thanks for you’re wishes, We need all we can get!
Amazing how wrong Medicaid can get things. Your son is lucky that you wont accept such nonesense.
I really like those cards. They are simple but inspiring.
In our state, Massachusetts, the hospitals have financial counseling offices with direct lines to Medicaid, and it is fairly easy to deal with challenges similar to what you describe. One of my kids had a similar experience in CA but had to go to a community health center or insurance office.
In any case, I would like to believe you will not have a hard time restoring Medicaid if it is lost. I highly recommend getting that in person help.
This is the story of parents of adult kids with disabilities, isn’t it? Always waiting for the other shoe to drop.
We’re in the same boat. Son is at away at college, after his gap decade. We hope the third time is the charm and he seems to be doing OK, but those previous calls to come and get him are never far from my mind.
My son’s case manager helped him appeal Medicaid’s decision. She said it was about a five-minute hearing. The agency providing the services stated how important it was for my son and then the state ruled against him. So I’m hoping an attorney will have more luck. I do have a DHHS Constituent Services phone number, so I will try that, too.
Wow.
These last three posts just hit me so hard.
We all have slightly different situations of course.
But doesn’t matter what the agency’s name is, in what state the person with special needs lives in, it is clear as mud.
In my darker moments, I think “they” intentionally make it so.
Just to keep us confused and on guard waiting for that second shoe.
Ok, sun trying to come out here in NJ. Time to keep on fighting
This is more personal than I like to be, but I am coming up on my 5 year mark of breast cancer treatment and my docs are probably going to stop my meds (due to the effect on my bones). My kid with medical issues is doing well but my kid with psych. issues (bp1) is not. I just get so anxious about ever leaving them behind. I am hoping that I am truly a “survivor.” If anyone else is dealing with this kind of thing, feel free to PM me.
Hugs, @compmom. I worry about leaving my son behind, too - something could strike at any time.
A happy update, at least - the state rep I contacted about my son’s denial of services filed a complaint with the DHS Commissioner’s office. The representative told me that DHHS would contact me directly. Well, the next thing I knew, the service provider called me to say the state reversed their decision and my son will get services! The woman said she was really happy, because she knew my son needed the assistance. But really?!?!? You have to jump through hoops to get people help? This isn’t a “shades of gray” case. About as black and white as it gets. Ack.
Glad it worked but sorry about how you had to do to get there. I always think about the people not savvy enough to keep going.
@compmom - I cant imagine the stress you must be handling.
I truly hope your health continues in the right direction.
@MaineLonghorn -
I get your frustration. It shouldn’t have to be but it IS so awful.
Every. Single. Thing. is a big, long, unnecessary fight.
My therapist listens to my tales of fighting for services for our daughter and worrying what will happen when we’re gone.
She says if she had a special needs child she would have to figure out a way to live forever.
I’m working on that.
I is frustrating and scary not knowing who will provide for our disabled or special needs loved ones once we are gone. I hope everyone can live long and healthy lives.
I was told I’d likely die soon about 20 years ago — fortunately the experts were wrong so far about that.
My loved ones don’t qualify for any fed services but fortunately we were able to get D qualified as a medical dependent on H’s medical insurance as long as he or I live.
I just hope we have saved enough to cover all our expenses and all of us for the rest of all our lives.
@HImom maintaining health insurance is another big worry. Let’s hope thatpreexisting conditions don’t ever become an obstacle again.
My kid with bipolar 1 seems a little, um, manic and is giving up her shared apartment to move into my small one bedroom. This kid has not lived with me in 5 years. I am a little apprehensive, because she gets combative. She needs a refuge. I wish I still had my house!
@compmom so glad you are doing well, but sorry that your DD is not. My dear friend whose son (a good friend of one of mine) has BP1 is concerned he is spiraling into a manic phase as he stopped taking his meds. I can only imagine how tough it will be to have her with you in a small space if she is not doing well. Perhaps she sees your homes as safe space? Sending hugs and wishes for good health - both physical and mental.
Yes, a safe space, and only wish I had more to offer. I am clearing out a tiny extra room and hoping she can feel comfy in it until she is ready to move on.
@compmom how were the holidays with your daughter at home?
I have been stewing about what’s to become of my son once I can no longer have him live with me, either I am in some sort of senior housing or nursing home or I have died. I think my husband, at 9 years older than me, has been having the same thoughts.
It was a surprise to us when our daughter and her husband brought up this subject when they were here visiting over Christmas.
She is in her last year of med school and he is finishing a master’s degree this spring. They will finally be starting their professional lifes this summer. We went out for lunch once without my son this past week. He has a part time job at walmart and was at work, so it organically gave us a chance to talk. D said that she and SIL have had several long conversations and have agreed that they will look after S when we no longer can. They want to buy a duplex or have a mother in law type apartment on their house once she is done with residency and have him live there, so he is as independent as possible, yet still has family around to keep an eye on him.
He is so much on the bubble, it is hard to know what he will be able to do or not do. He does drive, though he is terrible with money, so he will likely never own his own car or be able to budget for car insurance. He remembers to pay me the rent I charge him to live with us but doesn’t always remember to save back enough money for gas to get to work. He spends his money on junk food and stupid stuff, then can not pay for his one and only medication co-pay.
It was a relief that D offered that instead of me having to ask her.
bajmm that is wonderful that your daughter and husband offered this. My older daughter made a similar assurance over the holidays, in a private conversation with me. I am waiting for a test that tells me my risk of cancer recurrence in the next 5 years, so that was a reminder to me that at some point, whether in 5 or 25 years, someone will have to be there for my middle one.
Since my West Coast daughter was visiting over the holidays, and my apartment is so small, my younger one has delayed moving in. She spent a lot of time here but still has her own apartment for another month. She just texted me that she wants to move in this week.
I’m hoping it will be helpful for her.
I am caring for my mother with dementia almost daily but my daughter is a priority over that so if I have to reduce stress, I will hire someone to at least do my mother’s colostomy.
Ten years ago I had this kind of linear picture that my daughter’s bp1, once medicated, would kind of improve gradually and steadily over the years. But it is so up and down, literally, daily and over the years. I have finally really really absorbed the idea that it won’t go away. Believe it or not it has taken me that long. LIthium is great but it’s not a miracle cure.
Hope all is well after all the holiday activity, for everyone here.
My middle child has told me more than once that he will look after his brother when the time comes. It is reassuring!
Yes, I keep thinking my son is going to improve long term, and then he takes a turn for the worse. It is hard to accept.
Both my kids have long term chronic health conditions (sadly D’s haven’t improved much over the past 20+ years). D has never been able to hold a full time job but S has. I’m glad S is financially very self-sufficient and doesn’t seem to resent that we provide 100% of D’s support.
Fortunately both kids are able to manage their finances and live independently.
My crystal ball is cloudy but I believe we have enough income and assets to support the three or four of us for the rest of our lives, and that is comforting.
So far they’ve not received any govt assistance other than D being able to remain on our family health plan as a disabled dependent.
My S received a letter today saying that he was approved for SSI and to come in on Wednesday with his pay check stubs since last July to determine a back payment and a family member to be his payee. I will go with him.
They want my income information. I am wondering why they need my information? I do not work, my H does. Do I need to take in H’s info?
I don’t have any experience with this but found this, which may pertain to your situation.
The Supplemental Security Income (SSI) program provides means-tested cash payments to youths with severe disabilities. To determine program eligibility and payment amounts for children, the Social Security Administration (SSA) attributes part of parental income to the child using a process called deeming. Because parental deeming ends at age 18, many youths with severe disabilities who were not income-eligible for SSI as minors can become income-eligible as adults.