How to Support Your Child Living with a Disability After They Turn 18
When a child turns 18, they are legally considered an adult in many states. For parents of children living with disabilities this means big changes in the support systems, educational services, and public benefits that may be available. But even if your child is considered an adult in the eyes of the law, your child’s wellbeing is still top of mind, and you’ll want to help guide them towards a fulfilling future. In this post we’ll share some tips about how to navigate this transitional period.
Start with a conversation
Before jumping into the logistics around this milestone, make time for a conversation with your child. Taking a person-centered approach to financial and legal planning helps ensure that your child’s needs and interests are driving key decisions. This doesn’t mean handing over all decision-making to them — instead it’s about including them in the process and prioritizing their wellbeing. Depending on your situation, you may want to discuss subjects like preferred living situations, education or career plans, and other life goals.
Determine what legal structure is the right fit
Because your child will be considered an adult (in many states) upon turning 18, your legal status as a parent/guardian will change. Before their birthday, you’ll want to talk to a special needs planner or elder lawyer attorney to assess what the best legal structure might be to support them and their wellbeing.
Guardianship/conservatorship is the most restrictive form of support. If a child is incapable of making personal or financial decisions after the age of 18, a parent can petition the court to be appointed the adult child's guardian or conservator (terminology varies by state). Alternatively, if a child has sufficient decision-making capacity, they can appoint a parent as a durable power of attorney over medical and/or financial matters.
Depending on the type of power of attorney, the agent will have the authority to make healthcare, financial, and/or legal decisions on behalf of the adult child including applying for benefits or opening a bank account. A power of attorney often goes well with “supported decision-making” — when trusted advisors like family, friends, and professionals assist in making decisions collaboratively with the person living with a disability. This can allow individuals to make their own choices and be in charge of their lives, while receiving the support they need to do so.
Understand and prepare for how benefits can shift
After a child’s 18th birthday, the public benefits they are eligible for and the requirements for eligibility can change — though this can vary by state. In the case of Supplemental Security Income (SSI), if your child received SSI benefits before the age of 18, they must be reevaluated to determine whether they meet Social Security Administration’s (SSA's) eligibility criteria for adults. This is called “redetermination” and is important for children who will continue to rely on SSI into adulthood. If your child wasn’t eligible for SSI as a minor because of parental income and assets, they may be able to qualify after turning 18. When determining financial eligibility for SSI after this birthday, only your adult child’s income and assets will be considered.
If your child is already on Medicaid, your state agency will likely also require a redetermination for eligibility, so consult an expert about this and other state benefits that could change for your child. And if you haven’t already looked into creating a Supplemental or Special Needs Trust (SNT) for your child or opening an ABLE Account for them, now is a good time to explore these options.
Help your child prepare for the transition
As your child moves into adulthood, they may benefit from some additional skills and education that can help them navigate the world. The Individuals with Disabilities Education Act (IDEA) mandates that transition planning begin by the age of 16 for any student with an Individualized Education Plan (IEP) — though some states mandate that this start earlier.
A transition plan typically starts by defining goals around vocational training, postsecondary education, employment, and independent living. Then, educators, counselors, families, and students work together to outline the transition services that can help make progress toward these goals. This could include: community experiences, college/career counseling, accommodations, and independent living skills.
Many local nonprofit organizations and community groups also offer training courses where young adults can learn and practice skills like cooking, shopping, cleaning, and money management. Some families also choose to get a True Link Visa® Prepaid Card for their child to help them gain experience making purchases on their own. Parents can use the True Link platform to schedule small weekly transfers and/or only allow transactions at specified stores. Once their child is more comfortable with the Visa card and/or has moved out of the house, settings can be adjusted to better accommodate their new routines.
Explore housing options
Where your child will live is another big decision for your family to make. Continuing to live with you (with or without caregiver support), moving into a group home, residing in an assisted living facility, or moving into their own place with or without roommates are all options worth considering. The right decision for your family will be dependent on the level of care your child needs, their independent living skills, and what you/they can afford. If your child has an SNT, here are some options for paying for their housing costs.
Plan for care in the future
A child’s transition into adulthood is a good time to revisit any estate plans, trust documents, or informal arrangements you have made for after you’ve passed away. You’ll want to continue updating these plans and documents every few years as your child’s goals, interests and needs change. And if you haven’t started the process yet, here’s some advice from guest experts on where to begin.
In addition to editing your legal documents, your child’s birthday can also be a good time to check in with any friends and family who will play an important role when you’re no longer around. While some titles — like trustee or guardian — are more formal arrangements, there are others who may provide equally important support as a confidante, friend, or loved one. Make sure these people are also up to speak on what your child cares about and where they need support upon entering adulthood.
Looking for more tips on financial planning for a child living with disabilities? Learn how to prepare for another important milestone — turning 22.