Your Child’s Benefits

Health Insurance Portability and Accountability Act (HIPAA)

As a parent or a guardian of a child with a disability, you are used to taking care of all of your child’s medical issues. You schedule the appointments, you take your child to the appointments, you discuss medical concerns with your child’s doctor, you make decisions about medications, and you handle the medical bills and insurance paperwork related to your child’s care. Did you know that when your child turns 18, you are not allowed to do that anymore? This is because of a law called Health Insurance Portability and Accountability Act (HIPAA). The law was designed to protect the privacy of people’s medical information.

For some parents, not doing all of that work will be a relief, but for others, it may be very difficult to let go of those responsibilities. Is your child ready to take on the responsibility and management of their own medical care and decisions? This is something you should discuss with your child’s doctor before your child turns 18. Your child may be able to sign a release form that will let you continue managing your child’s medical care, but if your child is not able to do that, you will need to consider other options. Ask your child’s doctor what is needed.

HIPAA also gives protection to people with disabilities and medical conditions from insurance companies that discriminate against disabled persons by not giving them medical coverage. As of 2010, your work-related or private insurance policy cannot deny your child coverage (if under 18 years old) because of their disability, often called a pre-existing condition. In 2014, insurance companies will not be able to deny anyone (of any age) medical coverage because of a pre-existing condition.

Overview of Benefits

Your child may be getting benefits from the federal or state government, or both, because of their disability. If so, some of these benefits may change when your child turns 18 years old. It is important for you and your child to understand these changes and how they will affect you.

Cash Benefits

The Social Security Administration has 2 programs that pay cash benefits to people with disabilities:

SSI is a cash benefits program for people with disabilities who have little or no income or assets. It is meant to meet basic needs for food, clothing, and shelter. SSI pays up to $698 per month, depending on income and assets. People on SSI have an asset limit of $2,000. Some children are not eligible for SSI until they turn 18, because their parents have too much income or too many assets. The rules for how income is counted change when your child turns 18. Your child may become eligible for SSI then. For more information about SSI, read DB101’s SSI article.

Social Security Disability Insurance (SSDI) is also called “SSD” or “disability” or “disability insurance benefit.” SSDI is like an insurance policy. When you work, a tax, called FICA, is deducted from your paycheck, and that is how you pay into this insurance policy. If you become disabled, you can get cash benefits from SSDI. Or, if you have a child with a disability, that child can get SSDI cash benefits as an adult based on the parent’s Social Security earnings record when the parent retires or dies. There are no income or asset limits for SSDI. For more information, read DB101’s SSDI section.

Health Care Benefits

Your child might be covered under health care benefits programs through the state of California, such as Medi-Cal. A child may also have health coverage on a parent’s health insurance plan (from the parent’s work, for example).

Medi-Cal is a health care program for Californians with low incomes and limited resources. In California, children who get SSI qualify for Medi-Cal. DB101 discusses Medi-Cal and related programs on the Medi-Cal page.

If your child is covered on your health insurance policy through work or through a private policy, your child’s coverage may change when your child turns 18, depending on whether or not your child remains your dependent. Different policies may have different definitions of who counts as a dependent. Check with your insurance company or your employer's human resources department to find out their definition of a dependent.

Dependent children who have a disability can remain covered under their parent’s plan, regardless of how old the children are.

Under the Affordable Care Act (ACA) of 2010, insurance companies must allow children to stay on their parents’ insurance policies until the children are 26, regardless of disability.