April is Autism Acceptance Month, when groups like the Autism Society celebrate the accomplishments and experiences of individuals with autism and educate the public about the disorder, emphasizing understanding, support and inclusion.
Autism Spectrum Disorder (ASD) is a developmental condition that can show up differently in each individual (hence the use of the word ‘spectrum’). Typically, individuals with autism react differently in social situations (especially situations where there are lots of external stimuli like loud noises or flashing lights), may struggle with communication, often prefer their own company to developing personal relationships (a child may choose to play next to another child but not interact), and may struggle with self-regulation. Everyone’s experience with ASD is different, with many individuals leading normal lives. Others may require support throughout their lifetimes.
If your child has been diagnosed with ASD or any other condition where they may not be able to live fully independently as an adult, here are five steps you should take before your child turns 18. These steps should be viewed based on your child’s ability to care for and make decisions for him or herself:
- Determine whether your loved one will need a legal guardian or if a less restrictive alternative will suffice. North Carolina law does allow for Supported Decision-Making (SDM), which is one step before legal guardianship. Alternately, powers of attorney may be sufficient if your child is able to handle most things but will need help with finances, healthcare, or educational decisions. It is very important that parents plan ahead for their child’s long-term care; in most cases, the parents will predecease the child, and arrangements should be in place.
- Depending on your child’s situation, he or she may be eligible for Medicaid and Supplemental Security Income (SSI). Apply through the Social Security Administration. Note that with the current back-and-forth about SSA staffing levels and the availability of phone support, check before traveling to an SSA office.
- Start a special needs trust. A special needs trust can help provide financial support to your soon-to-be adult child while protecting (to some degree) his or her right to receive Social Security benefits. We strongly recommend working with an estate planning attorney to set up this trust.
- If your child is interested in, and able to, work full- or part-time, investigate job opportunities where your child may be successful. Some companies will set up tests where a parent may accompany the child to work for a few days to ensure they are able to handle the job.
- There are also some supportive living options that may be appropriate if your child is ready to leave “the nest” but still needs adult guidance.
It can be hard for any parent as their child approaches adulthood. It is a time of transition for both parents and kids. Listen to your child, their teachers, and the professionals you’ve worked with through the years as you navigate this new phase of your lives…and don’t forget to take care of yourself!