Social Security and Special Needs Young Adults

social security benefits

My 26 year old son is a higher functioning individual on the autism spectrum disorder. I read an article in 2003 that was filled with a lot of information about special needs trust, power of attorneys, guardianship and Social Security. The focus was on when he/she turns the magical age of 18.

I figured out the Special Needs Attorney was the first step. All the legal stuff was worked out before the magic birthday, and the day after we signed it. Our lawyer stressed the importance of applying for and receiving Social Security for him. This piece was a mystery. All I knew was that I needed to go down to the local office and apply.

Although incredibly naive back then, I didn’t just walk in with him. I called and scheduled an appointment. Yes, you can, and I encourage you to do that. I lucked out with the phone coordinator and intake case worker.

This gem of a person then informed me of all the “real” paperwork that really is needed. Here is what she told me.

Bring ALL and I mean ALL of his/her medical documents. If you don’t have them GET THEM from every Mental Health Professional that they ever saw. Bring all the school records. Make sure you have test scores, evaluations and diagnosis. So all of those I.E.P.s that you have…save them. You will need them. Copy everything. DO NOT and I REPEAT DO NOT give them the originals.

Social Security will send your son/daughter to their designated specialist. Afterwards call Social Security and request to send all of their reports to your doctor because they won’t send them to you. Don’t take no for an answer and follow up and be a pain in the butt.

We chose to have power of attorneys rather than guardianship. I figured those documents were gold. NOT so. Social Security has its own rules. The intake case worker, another gem said the only way, and I mean the only way you can speak to Social Security on behalf of your disabled adult child is to be the Beneficiary Payee. I say thank you for having this designation almost everyday.

You want to be able to maximize the amount of money your adult child can receive. The same case worker said you need to show that he is contributing his “fair share” towards the household expenses and or rent. It’s a financial formula. I was horrified! I can’t do that.

Then he proceeded to explain how it works. I urge you to talk with a Social Security expert to give you the ins and outs before you go down and apply. The gem case worker is a rare find.

Many disabled individuals get denied on the first try, be prepared. I encourage you to appeal with a Disability Lawyer. They will get the job done. You do NOT have to pay the lawyer. They get a percentage of the Social Security award once it goes through.

Keep a binder of everything special needs. Make sections for I.E.P., evaluations, test scores, Social Security paperwork etc. This is your bible. Believe me when I tell you it is invaluable.

Social Security is a safety net for your adult disabled child. Do not be intimidated by them or the process. I am my son’s voice, his advocate because he cannot advocate for himself. Remember, you are too.

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About Sharon Roth-Lichtenfeld

Sharon Roth-Lichtenfeld an ICF Certified Professional Life Coach bringing many years of expert professional experience along with many years of personal knowledge and understanding of loss, grief and forever changes. She is the Co-Creator of Afterwards and the signature Afterwards Program. Afterwards is the next step and is the critical link from being supported through therapy and support groups to actually gaining the ability to flourish after the first year of a major life transition. To learn more visit

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