Tell us how you are today?


@AnnieNorCal - we know you’re good people. Having loved ones with this illness does not make us bad people. And yes, you belong here. Don’t ever doubt that.

I’m sorry this is so much but don’t lose hope. The situation you are in right now is going to change. Nothing stays the same. I will have hopeful thoughts for you.



Thanks to all of you for reading and I do feel better, putting it all out there. My family is so heartbroken and I work on keeping my feelings to a minimum, it just makes everyone feel worse or brings out the emotions we are all having. We live in a constant state of grief. My youngest daughter has not done well with the situation
My girls are both married and trying to cope with their own lives. As you all understand the ambiguous grief of never having a normal life, I know I’m not alone and there are others out there maybe someone else who reads this and doesn’t post. Maybe it helps you to know you are not alone. Peace to you all AnnieNorCal


The benefits specialist at the local mental health center completed and submitted the application.


Nope, we live in Texas and the only people eligible for Medicaid are parents of children and those on disability.


He was diagnosed at 19. We live in TX where the state leadership does everything to keep those who need it from getting help. Need I say more?


I thought Medicaid was federally funded for the poor and needy? But I don’t live there and never tried to get it there…

“Texas Medicaid is a federal-and-state-funded health insurance program that provides health insurance coverage to low-income Texas residents”.


The state where I live is the same as Texas: no Medicaid expansion and same eligibility requirements as Texas. Causing the most harm possible to the most vulnerable and ill people


I am so sorry that it is still like that. We moved our family from TX to NY and it feels as if we are in a different country when it comes to servces for cognitive and emotional disabilities. I hope you are able to find services!


Hi, I had a decent time with my son today, he made an easy dinner, with my supervision at his apt. and we ate together, took a short walk with our dogs. Not bad, but I always get a sad, sinking, empty feeling when I leave his apt. I don’t know why I feel so bad when I leave him, I see him everyday but that depressed feeling when I leave him is always there. Hope it gets better with more time.


You might consider talking to an attorney re: SSI benefits to see if there is anything different that could be submitted in an appeal. Perhaps your local NAMI could suggest a reliable attorney if you don’t know of one otherwise. The attorney we used for SSI application does not get paid until benefits are awarded and that payment is a % of the backpay (back-dated to the date of disability). So I figure it is a win-win.


@banana1 @Hereandhere I wish there was a “sad face” emoji re: the battles we face to get needed care.


Sad face emoji
It’s applicable in so many posts.


My 36 year old son lives in Texas, is diagnosed on ssdi and receives ssi which qualifies him for medicaid. After 2 years of being disabled he qualified for Medicare. Medicaid pays for his Medicare premiums and copays. He does have to pay for the co-pays on his Part D prescriptions.

If someone is already paying for insurance on their behalf, they won’t qualify for Medicaid from what I understand.


That is not quite correct. My son is on my insurance, and also is on Medicaid. If the person has other insurance, Medicaid must be the SECONDARY insurance. I got him on Medicaid so that he could receive certain services.


Thanks so much Vallpen!


Yes Vallpen. Once our son was getting SSI, he was also automatically on Medicaid. Medicaid was granted as secondary to our “family plan” insurance.

I’m not sure how it works once our son turns 26 and is no longer able to be on the family plan. I think I read somewhere that his disability changes things, and he might be allowed to stay on our private insurance after he turns 26?

With the 2 insurances, we are extremely fortunate to not have to pay anything for the monthly injections. I think their retail cost is upwards of $3000 per month. It’s nuts.


@Vallpen and @Day-by-Day

Could it be Medicare they don’t receive if they have other primary insurance?

I know I did have to apply for QMB status for my son.


Medicare is linked to SSDI, right? My son got sick before he ever had a chance to contribute enough to Social Security to earn “credits”. As far as I know, our son will never be eligible for SSDI, unless he can tap into ours (his parents) once we start collecting SS. I think there’s something about being disabled before age 22 that allows tapping in later on…

Moral of the story is I don’t know.


Okay, that’s true - I am getting fuzzy on the details. I think you are correct there has to be enough work credits somewhere.

I just remembered that my older son had Medicare and his own insurance for his kidney transplant, so you can have both.


Hope, I’ve been following the conversation about the challenges people are having getting financial and medical benefits in Texas. It’s just incredible, especially when you add that issue to the ridiculousness you and your husband had to experience trying to get helpful and safe interventions for your son.

I just shake my head to the horribleness of it all.