Having a child diagnosed with a lifelong disability is like planning a trip to one country, but unexpectedly arriving in a different country (read Emily Perl Kingsley’s essay Welcome to Holland). Just imagine, you have nothing packed that would make the trip easier or more comfortable, and you do not speak the language. It is a land of new faces, communities, and systems.
Over time, the new land starts to become familiar. You find your own group of like-minded friends and advocates, and learn how to “drive.” Over 16-plus years, you become an expert at understanding this country, and can even help others become acclimated.
Similar to learning how to navigate a new country, as a parent or caregiver of a child with disabilities, you have learned how to navigate systems of care. You have become fluent in the Individualized Education Program (IEP) process, you understand the purpose of Intensive Behavior Health Services (IBHS), you can read a functional behavior assessment (FBA) with full understanding, and you know all of the acronyms in the “alphabet soup” vocabulary of child-serving systems. You also are aware that a child’s “transition” should begin long before the age of 14 with a checklist of what to do, and how and when to do it. For example, it takes time to write a special needs trust (SNT) with a special needs attorney. The SNT needs its own tax identification number, so identifying a financial institution and applying to the state is the first thing that should be done before creating a trust to ensure your loved one’s assets are protected and do not work against their “needs-based” government benefits.
Then, one day, your child turns 18. Now what?
Below is what I learned while caring for my now 21-year-old daughter, Annie, who has autism and intellectual and developmental disabilities, among other differences.
- Get your child registered and onboarded with supplemental security income (SSI), which can take anywhere from three to six months once all documentation has been submitted. Note: The Social Security Administration may conduct a lookback of up to three years on your loved one’s accounts to determine eligibility.
- Make sure special needs trusts and an Achieving a Better Life Experience (ABLE) account are established in order to protect your loved one’s public benefits as well as provide a means for them to pay for things they need and want in their life.
- Consider guardianship if it is required to most appropriately continue care for your loved one. The guardianship process can be costly and confusing, and will likely require an additional special needs attorney.
Before you know it, your child will turn 21. What’s next?
On your child’s 21st birthday, some of the services they have received their entire lives will disappear – which is incredibly stressful! Just a few of these services include: Intensive Home Behavioral Services, home health aides and/or child respite services.
As parents of special needs children, our plates are already overflowing but the key to success is planning ahead.
- Community programming: On the last day of your child’s schooling, there is no guaranteed continuation of community programming. If you want your loved one to continue receiving services once they age out of the education system, make sure to research and enroll (if possible) in these services well before your child turns 21. Note: You can never plan too early; I started researching many years before Annie turned 21.
- Day programs: When looking for an appropriate day program for your adult child, it’s important to keep in mind you must prove you have guaranteed funding for their spot in the program. However, obtaining waiver funding can be extremely challenging and require waiting on long wait lists. If requesting a particular day program, your county may be able to provide some waiver funding more immediately to assist funding the program.
- Waiver funding, which is provided by the state (and varies state by state), is critical. Waiver funding can help provide future stability and funding for services throughout your loved one’s life. The best way to demonstrate a need for waiver funding is to utilize every service offered. Your state, county and administrative entity determines who qualifies for a waiver. By demonstrating your family’s commitment and willingness to put in the work to help your child with disabilities, and by trying a variety of services to determine what works, you can increase your child’s odds of receiving the waiver they need to support them throughout the remainder of their life.
Navigating the various resources and systems of care can be difficult. But one of the most important things we can do as a community – while we are all on this journey – is to share our knowledge and be there for each other.
If we work together, the road ahead may still be uncertain, but it will be less lonely and overwhelming.
Amy Kelly, MBA, MNM, is the mother to Danny, Annie, and Ryan. Annie is diagnosed with moderate to severe autism, verbal apraxia, intellectual and developmental disabilities, and general anxiety disorder. Amy is the National Director of Family Engagement for Devereux Advanced Behavioral Health, one of the nation’s oldest and largest nonprofit providers of behavioral healthcare and serves as a family representative on several special needs boards in the community, locally and nationally. In addition, she participates with other patients and families in efforts supported by the Autism Care Network and serves on an executive committee for the American Academy of Pediatrics to assist children and adolescents with special needs and the importance of quality care.