Turning 18 is a huge milestone. Someone this age is now a legal adult, with many new rights and responsibilities. But for a person with a disability and his or her family, it can be a confusing time, too. Familiar ways of doing things, and who does them, can change quickly.
There are some items that apply regardless of disability. For example, every young man needs to register for Selective Service as a way to potentially be called up for military service.
Then, there are those matters particular to people with disabilities. Here are three key examples.
When someone turns 18, parents can no longer make decisions legally on behalf of a young adult, regardless of the individual’s disability or whether they still live at home. In the school setting, parents are no longer automatically invited to IEP (Individualized Education Program) meetings unless the young person approves.
Many families apply for guardianship, which is defined as “a person or agency appointed by a court to act on behalf of an individual.” Guardianship can be full or partial. If full, an individual essentially gives up all rights. Partial guardianship is defined by the courts and is unique to each individual. Often, parents mistakenly look at this as an “all or nothing” decision – full guardianship or nothing at all.
An option gaining popularity is supported decision-making. Under this concept, people with disabilities document who will support them and what those supports will look like. States are increasingly elevating it as the preferred model of supporting people in their transition from minor to adulthood. Executing a supported decision-making document formalizes what is likely already happening between a person with a disability and those providing support. It looks different for everyone, depending on needs, and can change as necessary without the added complication of going to court. Importantly, it demonstrates that a person with a disability has the capacity to make his or her own choices.
Until somewhere between the ages of 21 and 26, individuals can continue to receive educational supports through the local school system under the Individuals with Disabilities Education Act (IDEA). The exact age depends on the state, with details available from state Departments of Instruction. Afterward, vocational rehabilitation and Medicaid waivers are needed to obtain employment supports. This is not overseen by local schools but rather by state agencies, such as the Medicaid department or vocational rehab service. These organizations, in turn, often contract with service providers such as local governments, nonprofits or for-profit organizations to deliver them.
Importantly, these are not entitlements, so there may be a waiting list to receive services – if they ever become available. Sometimes this is referred to as a “cliff,” and it’s a cause for anxiety, because services can be essential for someone to reach their full potential, get a good-paying job and contribute to society.
Supplemental Security Income (SSI)
People with disabilities can be entitled to Supplemental Security Income (SSI) payments via the Social Security Administration throughout their lives. Prior to age 18, a beneficiary is considered “disabled” if he or she has a cognitive or physical impairment expected to last at least 12 months that results in “marked and severe functional limitations.” However, once the beneficiary turns 18, impairment must “result in the inability to do any substantial gainful activity.”
The adult disability standard is a higher one and many beneficiaries are dropped from the rolls because they fail to meet it. However, this typically does not impact people with intellectual or developmental disabilities.
Interestingly, SSI financial requirements often become easier once a child turns 18, because at that point the Social Security Administration looks at the beneficiary’s own income and resources instead of using the beneficiary’s parents’ financial record. Since many SSI beneficiaries who received benefits as children don’t have any other sources of income and don’t own any large assets, they likely won’t have any problem qualifying financially on their own.
Regardless of parental income, a beneficiary can continue to qualify for SSI under the pre-18 rules if he or she participates in an approved vocational rehabilitation program or special education program that began before the beneficiary turned 18.
Summing it all up
These and many other changes that occur upon reaching adulthood can be complicated, with many variables. It’s important to have a trusted source of information in order to make the right decisions. The Bethesda website, BethesdaLC.org, is always a good starting point to find information and contacts who may be able to help.