What You Need to Know When Your Disabled Child Turns 18

Making Education Decisions for Your Adult Disabled Child

Under the Individuals with Disabilities Education Act of 2004 (IDEA), a special education student is entitled to a Free and Appropriate Public Education until age 21. However, at age 18, the educational rights transfer from the parent to the student.

This means that at age 18, your child with disabilities will be the one making decisions with the IEP team.

Sometimes a child with a severe disability is unable to make decisions related to their IEP. Parents may worry that they need Guardianship over their child to make these decisions.

There is a protection under South Carolina Law called the Adult Students with Disabilities Educational Rights Consent Act (S.C. Code §59-33-310-370) that provides protections for parents and students without requiring parents to go through the costly, often unnecessary, Guardianship process.

The Adult Students with Disabilities Educational Rights Consent Act provides that students can have a parent or an adult that they trust support the student in making decisions regarding the student's IEP. This is called supportive decision making, which can be very helpful.

If the student has capacity, they can also delegate their right to make educational decisions by executing a Power of Attorney or using a form from the Department of Education. A Power of Attorney designates a trusted adult to make educational decisions for them.

However, it is very important that students are a part of their IEP team and participate as much as possible in team decisions and discussions. Self-advocacy is a very important skill to develop early.

If the student does not have the capacity to designate an adult to help or does not have the ability to communicate their wishes, interests, or preferences in the IEP process, there is another option.

The parent or guardian can get a letter from the student's doctor, nurse practitioner, psychologist, or psychiatrist that states that the student is not able to communicate, with or without reasonable accommodations, the student's wishes, interests, or preferences regarding their IEP. The medical professional who completes the letter cannot be an employee of the school district.

This letter must be submitted to the school's special education department up to 60 calendar days before the student's 18th birthday or 65 business days before an eligibility meeting.

After the parent submits the letter to the school's special education department, the school must notify the student in writing within 10 days of receipt that this certification has been filed and the student has the opportunity to appeal this letter. The school cannot challenge or appeal this letter.

The person who is the educational representative has the same authority as the student would have to participate, make decisions, and request the educational record of the student.

Important

Depending on the severity of your child's disability there are other considerations that you need to make related to their care.

Your child after age 18, if they have capacity, can sign a HIPAA Release form to allow their doctors and medical providers to share confidential medical information with you.

If they have capacity, they could also execute a Healthcare Power of Attorney. This document has a built-in HIPAA Release and allows a person to name an agent who can make medical decisions for them when they are unable to do so themselves.

If your child does not have the capacity to execute a Health Care Power of Attorney, there is a law in South Carolina called the Adult Healthcare Consent Act (SC Code § 44-66-30). This law gives a list of priorities for who can make medical decisions for a person who is unable to give informed consent. This law can be very useful in avoiding a Guardianship action.

If the only income your child receives is SSI, you can remain in place as the Representative Payee for these benefits. You should know that the Social Security Administration will do an Age 18 Redetermination. This is a medical review to see if benefits should be stopped. You have only 10 days to appeal any unfavorable decision and ask that benefits remain in place to keep them. If you miss the 10-day deadline, you can still appeal within 60 days, but benefits may stop.

Supportive Decision-Making is Key

Transitioning to adulthood is difficult for all children, but can be especially challenging for disabled children and their parents.

Supportive decision-making means finding supports to help a person with a disability understand, make, and communicate their own choices.

It is important that your adult child be involved as much as possible in decisions related to their care, treatment, and education. Self-advocacy is a skill that everyone needs in their life, and it is important for young adults to make choices and learn how to make good choices on their own.

Everyone is different and will require different levels of support to make decisions.