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Parenting an Adult Child with Disabilities: Legal Guardianship, Medicaid and SSI

I'm Ben's unofficial and unpaid administrative assistant. I keep his files and medical records and stay in touch with therapists, doctors, teachers and equipment providers. 

When Ben reached 17 and a half, I started the paperwork for him to transition to adulthood. His care manager encouraged me to get the forms filed on time, otherwise, we could run into problems later.

The information below is based on my experience. Yours may be different; every family has its own unique situation. Conduct your research, ask questions and if you need to consult an attorney, please do so. My story is not meant to serve as legal advice.

Here's what I did:

1. File for legal guardianship. 

Each state has its own set of rules for legal guardianship. We filed in Mecklenburg County in North Carolina and it was an easy process. I filled out forms online six months before Ben turned 18. I went to the courthouse with the forms, signed additional documents and paid a fee, around $150. 

North Carolina: Guardianship and Alternatives to Guardianship

Ben was assigned a Guardian ad Litem, an attorney for Ben to protect his rights. They also scheduled a date for the virtual hearing. The fee for the attorney's services was waived.

North Carolina: Guardian ad Litem

The Guardian ad Litem scheduled a date to meet Ben at our home. He came by at the appointed time, asked us questions and met Ben. 

At the virtual hearing, Ryan and I were both in attendance with a family judge, the Guardian ad Litem and a court recorder. Now that pandemic restrictions have decreased, it's possible families need to go to the courthouse for the hearing.

The folks involved with family court are familiar with the process. They make it easy for us. I found them gentle, caring and helpful.

In North Carolina, only one person can become the legal guardian. Ryan was fine with me taking on the role. 

Each state has a different way of determining legal guardianship. Find out what the rules are in your state and discuss them with family members beforehand.

There was a point in the hearing when it was clear Ben's rights were being taken away. He was declared incompetent. It was an emotional moment. Even now as I write this, I feel a twinge in my heart. 

Some families choose not to assign a legal guardian and it can cause problems with financial documents, medical records and more, says our former care manager. Please consult with an attorney if you're unsure about what works best for your family. 

Once the process is complete, the courts will send several copies of the official legal guardianship document. Doctors and other entities will need a copy for your child's records. I keep a scanned version on my phone to show if needed, and I also keep one on my computer to easily attach to emails. 

2. Apply for Supplemental Security Income. When your child turns 18, they're eligible to apply for SSI through the Social Security Administration. This is based on their disability and the adult child's income and not on the parents' income. 

This is a federal program and not connected to the state. You may apply for SSI online. As with any of these processes, the more organized you are with your child's records, the easier it's going to be to complete the application.

Once you have all the information needed, a phone interview will be scheduled. You will review much of what you've already sent in and possibly share bank information for future payments.

I recommend applying on your child's 18th birthday or closely thereafter. If you apply before they turn 18, your income will be included in the application for the time before they turn 18. It's more of a hassle and a mistake I made. I applied 3 days before Ben turned 18, thinking I was getting a jump on the process. It caused more issues. In this case, I wish I had been late to the game.

There are attorneys who will walk you through this process if you want help.

3. Understand the Medicaid system. I once had a parent call me in a panic about how their adult child would receive medical insurance after they aged out from being on their parent's plan. In most states, if your child qualifies for SSI, Medicaid is included as one of the benefits.

Medicaid and SSI

Again, I recommend asking these questions about SSI and Medicaid well before your child reaches 18. A simple Google search may shed light on what works in your state. Take notes and pull out what you need when the time comes. 

"Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges.


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