Disabled Adult Child Benefits/Childhood Disability Benefits

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I'm already on SSI. A year after that I found out I was misdiagnosed and have Autism Spectrum Disorder.

I've never been able to hold down a job. Most were a few days, if even that.

Recently found out about Disabled Adult Child Benefits also known as Childhood Disability Benefits. Which would basically be like collecting SSDI from a retired or deceased parent's earnings. Anyone that has ever had to live on SSI knows that would help out a lot financially.

Problem is you had to been disabled before age 22 else it gets complicated trying to prove you were.

Considering that Autism Spectrum Disorder clearly does not begin after age 22, I've never had a work history of Substantial Gainful Activity, and have some documents from school showing I was having these same issues, my primary care provider and therapist fully agree that this has been a life long disability that I've been dealing with and have written letters for me saying so.

What I'm wondering is if anyone here has ever had to go through this and if they've had any luck with it? After having called the Social Security Administration a few times I'm aware of how much of a mess it is to deal with them and that this may end up being a long process where I'll be running in circles every time I speak to them.

My daughter went through something similar, applying for "disabled adult child" coverage on my medical benefits plan from work. She was supposed to max out by age if she wasn't enrolled in full-time tertiary education. We spent a very long time jumping through hoops to get her approved, even though she has a permanent disability recognised by the government in addition to being on the spectrum. She has reviews every two years. I'm not sure how / why they think her permanent disability and / or her autism might suddenly go away ... but that's bureaucracy for ya.

Wow every 2 years. Luckily mine is every 3 years, which isn't much better.

My Continuing Disability Review was last year and I ended up waiting 11 months to hear back from them. Had to send them my CDR forms 3 times because for whatever reason they kept asking for them again. Luckily I typed them out so I just had to print and mail them again.

I have no idea how they think something is going to magically change in 2-3 years. These are Social Security employees we are talking about though, even medical professionals have enough difficulty understanding Autism Spectrum Disorder.

These people at Social Security will mail you vague letters that have nothing to do with what you called about and you end up having to call them to make sure there isn't now a problem. As you can tell I'm quite annoyed with them at this point.

I helped our daughter get disability when she was 20, I had documentation of her struggles from childhood... letters from teachers, doctor visits, anything I could find to show how she struggled all her life. I kept all the documentation together and only gave the social security workers copies of them, even though they asked me to leave the files and folders with them. They will lose your records and you will never get them back. I got POA for our daughter for health care as well as being her legal power of attorney. this came in useful and allows me to access and keep documentation of her health and other struggles as she gets older. She willingly signs hippa agreements to allow me access, and I am lucky enough to have a great relationship with her, so we can work together. I continually follwed up notices to call and leave messages with workers assigned to her case. Did she need more documentation, did they need anything from me to help with processing her case, What was still in need of to finish the application and get it heard. We were turned down, assigned from worker to worker, I had to travel to various offices, take daughter to an independent medical advisor/ consultant for a second/ third opinion when the opinions of her previous counselors was not enough, etc etc. I did not just let that case sit, I actively and politely followed up on everything, made copies of everything in her files, had the copies notarized or otherwise documented when asked for, made copies of every form I filled out and notes about who I talked to on what date, kept every scrap of correspondence, printed copies of emails, and eventually we were accepted for minimum support. I was made the payee for her disability and keep everything documented. Now that her father has retired, she is on SSA as part of his work record entitles her to a little more. I still have to report every year how I have spent her money, and have had to fill out forms every year for many years before they seem to have accepted that her "condition" disability , is permanent and that she won't be "cured" of it. Don't give up, be concerned, polite, and patient. The government offices are under a lot of stress and many workers are at home trying to keep up with overloads in applications. It is very distressing, the whole process, and I still have anxiety attacks every time a letter appears in the mail. We rely on the support to provide for her needs. I don't know what will happen to her when we die. It is a parent's worst worry, I think, when we have disabled offspring... what will happen to them when we are gone?

I'm not American but I can relate to what you're both saying.

Yes I've also had to be very proactive in keeping records and helping her navigate the bureaucratic process, although I ask that she participate and keep track of everything that's filed. It's very unsettling that they expect young adults to complete such complicated paperwork which invariably involves my tax information, or financial details that she wouldn't know on her own.

In addition to being approved as a Disabled Adult Dependent on my medical benefits (work-related), she is also in receipt of government subsidy money for persons with disabilities. That was even more of a nightmare to accomplish. It involved two years of documentation and meetings, culminating in a legal tribunal to rule whether her "permanent disability" was indeed a permanent disability (?!) They expected her to hire legal counsel without me, and to attend the tribunal on her own, despite the fact that her disability documentation cited weak self-advocacy skills and an anxiety disorder (PTSD).

On top of this, her father then sued her for back-payment of child support because he claimed she wasn't really disabled. Another lawsuit. From her own father. It's pitiful that the court even entertained such a claim despite hundreds of pages of medical documentation, and recognition of a "permanent disability" from the national government.

Long story short, but she won the tribunal and beat her father in court.

And they wonder why these kids are stressed?

Thanks Kitty. That means a lot to me.

I'm sorry you're still struggling with these issues pertaining to your sister. There are a lot of things I might suggest but they may sound confusing or complicated, and I don't want you to feel overwhelmed with information. The main thing I might suggest is that you get your medical records about Cerebral Palsy from your doctor. I'm sure they have it on record somewhere in your file? If not, can you ask your doctor to write new documentation for you, or even order the tests again?

I don't know if that costs money to do. I hope not.

To prove your Dyslexia and your learning disability, can you ask your doctor about getting a new assessment for your files? Does your doctor know about the problems you're having with your sister, and with getting practical support for your needs? I think they need to know.

I hope you can arrange to have an Occupational Therapist work with you. They are people who come to your home to see what changes need to be made for you to live comfortably, and manage everyday tasks. They would even give you advice on how to deal with your cat, or brush your teeth without the problems you experience. A Social Worker could also help to mediate between you and your sister.

It's shameful when our own families hurt us in this manner.

I wish you all the best.