It’s the most natural thing in the world for a parent to worry about the well-being of their child. For parents of adults with autism, these fears are oftentimes magnified.
Autistic people can have difficulty supporting themselves financially and living independently. Most autistic young adults (more than 85%) live with their parents after high school and, depending on their needs, might stay with them well into adulthood.
When a parent passes, adults with autism can be left with few resources or safety nets. If you are worried about your child’s welfare and guardianship after you’ve gone, there are steps you can take now to set them up with financial and social support in the future.
Set Up Autistic Adults for Success
You and other caregivers can lay the foundation for your child to have social support even after you’re gone. Some ways to do this include:
- Volunteering: Get your child involved with local volunteer groups to help them stay active in the community. It’s a great way to meet people who live nearby and make new friends.
- Part-Time Job or Career: If your child is able, a job that provides an income, no matter how many hours a week, is a great social experience and a source of independence and confidence.
- Public Libraries: Visit the library often to build relationships with librarians and staff. Establish the library as a safe place to go for calm and quiet, but also help and safety. See that your child knows how to use a library card to check out books or movies and find subjects they are interested in.
- Clubs & Social Groups: Support groups and local special-interest clubs are incredibly valuable resources for families of autistic people. These can be groups geared towards adults with disabilities, faith-based organizations, or any club that provides meaningful social interactions.
Autistic adults who socialize regularly are less likely to end up housing insecure and tend to live longer, healthier lives.
Financial Planning for Adults with Autism
If you are concerned about your child’s financial stability, there are a few different options to look into. The one that’s right for you will depend on your specific circumstances.
Eligible California residents can also benefit from the Self-Determination Program (SDP)—a person-centered approach to allocating disability benefits.
Here are some income sources and savings accounts to consider:
- Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI): Some people on the spectrum will qualify, and some may not.
(Tip: when applying for Social Security Benefits, have lots of medical documentation ready to support an autism diagnosis, as well as proof of limited income.)
- Medicaid: Available for adults who receive SSI.
- ABLE Bank Account: A person with autism is eligible for an ABLE account if their disability began before age 26 and receives SSDI/SSI (or meets the SSA’s disability criteria with a physician’s letter).
ABLE money can only be used for expenses related to their disability. These include basic needs like food and housing, as well as healthcare, education, assistive devices, and more.
- Special Needs Trust: A savings trust specifically for someone with a disability to avoid jeopardizing supplemental government income.
Planning for Long-Term Care & Housing
The amount of work you need to spend on housing and long-term care arrangements will depend on the level of assistance your loved one needs. Can they care for themselves independently with occasional support, or would they do better in a home with live-in care staff?
Here are some potential housing resources and care arrangements to consider:
Independent/Supported Living: If your loved one has the skills and desire to live independently, you may only need to address financial concerns. If they would benefit from regular check-ins or meal drop-offs, supported living might be the best option.
You can also arrange live-in care through an agency. Those enrolled in the SDP may use their allotted funds for in-home caregivers.
Group Homes & Assisted Living Facilities: These are usually run by private agencies and can have long wait lists, but they are a good choice for those who need more intensive support.
Nursing Facilities: For older adults with autism who need care around the clock or have medical concerns, this may be the best choice.
Family/Siblings as Caregivers: If you are fortunate enough to have family members who are willing and able to provide care, determine a plan of action for the transfer of care. Make sure a Special Needs Trust is set up in advance so money is allocated properly.
Conservatorship or Guardianship: Things to consider if your child needs help with legal, financial, and property decisions. Understand the legal rights of adults with autism where you live.
Speak to an Attorney About Estate Planning: Your plan for your assets when you pass should be regularly updated and reviewed.
As with any decision that affects them, your loved one with autism should have their feelings and preferences considered.
Learn More About Resources for Adults With Autism
Planning for the future when you have a dependent adult with autism doesn’t need to be scary. Government and community resources are available to help you ensure your family member isn’t left without options and care.
For California residents, the Self-Determination Program can help provide financial flexibility and freedom. NeuroNav is here to help every step of the way, providing accurate information and guidance so you can navigate the twists and turns of life with a disability or disabled loved one.
Schedule a free consultation and learn more about how NeuroNav can support you.
