Apply for Social Security Supplemental Income (SSI) for your child by age 18 and, if possible, before age 22, when it becomes more difficult to qualify. SSI provides a cash benefit ($794 per month as of Jan. 2021) and provides access to publicly-funded mental health and disability services. To qualify, a child must have a chronic “physical or mental condition(s) that very seriously limits his or her activities.” This disability must make it unlikely he or she will be self-supporting. If your child resides at a residential treatment center or is 18 or older, family income does not figure into eligibility calculations. However, your child must have less than $2,000 financial assets. You can apply for SSI with the help of an attorney specializing in Social Security or do it yourself online at www.ssa.gov.

Apply for Social Security Disability Insurance (SSDI) if your child, teen, or young adult has a chronic disabling condition and has a disabled or retired parent. SSDI provides a higher monthly benefit (over $2,400 per month on average) because it is based on the Social Security (FICA) payments made by the retired or disabled parent. You can apply for SSDI with the help of an attorney or do it yourself online at www.ssa.gov.

Apply for Medicaid medical benefits for your adult child. Generally, those who qualify for SSI also qualify for Medicaid in Illinois. Even if your adult child doesn’t qualify for SSI, he or she may be able to get Medicaid, based on income. Medicaid covers most medications and hospitalization costs, as well as some physician services. If your child is covered through your family health insurance policy, Medicaid becomes the secondary insurer. This means your child has access to a wide array of medical providers, including those who do not take Medicaid alone. Like SSI and SSDI, Medicaid opens the door to many services.

Apply to have your adult child named a “disabled dependent” on your health insurance policy during the year that your child will turn 26 if your policy is covered under the Affordable Care Act (ACA), or at age 18 if your policy is grandfathered under ACA. This designation keeps your child covered by your policy as long as he or she is unmarried—potentially for life. This can eliminate the cost of a separate policy for a child at age 26, and can cover your adult child within a single family deductable. You will need to send your insurer a physician’s letter stating that your child is at least 50 percent disabled, or fill out forms provided by your insurer. You can also include any special education records, psychiatric evaluations, hospitalization and medical records to support your request. Call your insurer for information on this process.

Create a Special Needs Trust so that your disabled child will be cared for when you are no longer around. A Special Needs Trust (also called a Supplemental Needs Trust) provides funds to pay for services to enhance a disabled person’s life while preserving eligibility for SSI, Medicaid and Medicare benefits. The trust, not the disabled individual, should be named as a beneficiary in your will and life insurance policies. The trust is overseen by a trustee(s) of your choosing, and should be written by an attorney or financial advisor with expertise in this area. You can find information and referrals through the non-profit Special Needs Alliance or the Academy of Special Needs Planners. 

Guardianship can protect an adult child from physical, medical or financial harm. You will have to demonstrate to a judge that the disabled person, age 18 or older, is completely or partially incapable of making decisions regarding personal, financial or medical matters. Guardianship allows access to medical records and healthcare providers, and permits the guardian to determine where the ward should live, and to make decisions about housing, spending and contractual matters. Obtaining guardianship requires a physician’s report on the disabled individual’s physical and mental condition, and can be done without an attorney if the disabled person consents. If the disabled person opposes the guardianship petition, a judge will name a guardian ad litem to meet with the disabled person and others in order advise the court on the need for guardianship. A judge also can order a second physician’s evaluation. In an emergency, a judge may approve temporary guardianship for up to 60 days.

Power of Attorney can provide the same protections as guardianship, but is signed voluntarily, not ordered by a court. Power of attorney can cover a wide range of life decisions or be limited to health care decisions. Unlike guardianship, power of attorney can be revoked at any time, without a court hearing.

An Advance Directive for Mental Health Treatment is a legal document that allows a person 18 or older to specify what should be done if that person is unable to make sound judgments about his or her mental health care. The directive typically names someone trusted to make treatment decision on his or her behalf. An advance directive can allow doctors to talk with parents, for example, about an adult child’s mental health condition and treatment. Having an Advance Directive in place when your child is stable and cooperative can ensure your ability to authorize treatment if your child becomes acutely ill and uncooperative. Advance Directives are good for a term of 3 years in Illinois, and can be renewed. Take a look at the Illinois Guardianship and Advocacy Commission’s Guide to Advance Directives.