Top 3 changes to prepare for when your disabled child turns 18

Woman with a developmental disability laughing outdoors with her parents during autumn

Becoming an adult is a process, while turning 18 is immediate and a milestone that comes with legal implications, new rights and responsibilities. How do you guide your loved one through this transition? You’ve protected them for the past 18 years. Now, how do you help them explore the independence of adulthood while avoiding the pitfalls?

Many of the decisions that need to be made depend on your loved one’s needs, we have two recommendations for all parents of an intellectually or developmentally disabled child.

  1. Start early: Where possible, planning should begin as early as 14 or 15 years of age.
  2. Talk to your loved one: Turning 18 has a major impact on their life so make sure you involve them in the conversation as much as possible to understand their wants, needs and goals.

By beginning with these two steps, you and your loved one will be better prepared when familiar ways of doing things, and who does them, change quickly at adulthood.

Rights and responsibilities that apply to everyone

There are some rights that apply, regardless of disability. Adults have the right to vote. You can help your loved one register and get them involved in the voting process if they have the capacity, but their vote is their own. All young men need to register with Selective Service, a responsibility that brings the possibility of military service. Every adult needs a state-issued ID card or driver’s license if they don’t already have one.

Then, there are those matters particular to people with disabilities. Here are three key areas where you and your loved one will need to make some decisions while approaching adulthood.

Decision making

When a child turns 18, parents can no longer legally make decisions on behalf of their young adult, regardless of the individual’s disability, capacity to make their own decisions, or whether they still live at home. In the school setting, parents are no longer automatically invited to participate in IEP (Individualized Education Program) meetings unless the young person approves. Medical staff may require proof of guardianship or power of attorney for medical decisions.

Following are three possible options to ensure your loved one is well cared for, has an advocate or can make the best possible decisions for themselves.

  • Supported decision making: Under this concept, people with disabilities document who will support them and what those supports will look like. This option is gaining popularity and states are increasingly recommending it as the preferred model to support young 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. Learn more about supported decision making from self-advocates on the Self Determination Channel.  
  • Guardianship/Conservatorship: 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 limited to certain aspects of your loved one’s life. If full, your child essentially loses all rights, and you take over providing for their needs. Limited guardianship is defined by the courts and is unique to the individual. Often, parents mistakenly look at guardianship as an “all or nothing” decision – full guardianship or nothing at all. A limited guardianship applies to certain aspects of your loved one’s life and may be an effective option in many situations. In either case, guardianship petitions take time to work through the courts so begin exploring options early.
  • Power of attorney: With a medical or durable power of attorney, your loved one assigns decision making for certain aspects of their life ranging from informal family guidance or control of a special needs trust to representative payee arrangements for supplemental security income (SSI) or social security disability insurance (SSDI). Power of attorney arrangements look a lot like supported decision making, but with one possible pitfall. Because your loved one assigns their power of attorney, they can assign this authority to someone else, without your knowledge or the benefit of support for their decision. A power of attorney is relatively simple and inexpensive option that can leave your loved one vulnerable to individuals who may not have their best interests at heart.

Education and transition services

Educational supports through the local school system don’t end at 18. Depending on the state they continue to somewhere between 21 and 26 years of age, under the Individuals with Disabilities Education Act (IDEA). Check with your loved one’s school or state Departments of Instruction. The ongoing structure of attending school can help smooth the transition to adulthood.

Vocational rehabilitation and Medicaid waivers are needed to obtain employment supports. This is not overseen by local schools but rather afterward by state agencies, such as the Medicaid department or vocational rehab service. These organizations, in turn, often contracts with service providers such as local governments, nonprofits or for-profit organizations to deliver transition support. These services can be essential for someone to reach their full potential, get a good-paying job and contribute to society.

Importantly, transition services are not entitlements. There may be a waiting list to receive services – if they ever become available. This is one of the reasons it’s important to begin exploring options for your loved one before their IDEA education support ends.


Changing SSI Standards: People with disabilities can be entitled to SSI payments via the Social Security Administration throughout their lives, but the “test” used to determine disability changes at 18. 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 your loved one turns 18, impairment must “result in the inability to do any substantial gainful activity.”

While the adult disability standard is higher than for minors, individuals will lose benefits if they fail to meet it. Fortunately, this typically does not impact people with intellectual or developmental disabilities.

Changing SSI income requirements: 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 parents’ finances. 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.

Pre-18 rules: Remember, we recommend starting early and exploring education and transition options. 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.

Bottom line

Changes that occur upon reaching adulthood can be complicated, with many variables. It’s important to have a trusted source of information to help you and your loved one make the right decisions.

Find information, services and contacts who may be able to help.

Depending on your situation, you may need to consult with a lawyer, financial advisor or other support providers for help.