What truly moves people? Often, it’s witnessing love, resilience, and care in the face of daily challenges. I’m reminded of a young man at my synagogue – kind-hearted, surrounded by love, and deeply spiritual in his own way. He’s also a child with autism.

I’ve watched him grow from a child into adulthood. I’ve also watched as his father, a single parent, sits beside him at every service. The young man cannot pray like the rest of us. Instead, he enters a trance-like state. To an outsider, it might look like he’s unwell, but this is his reality. However, at times he experiences meltdowns — moments where he becomes overwhelmed and difficult to calm.

His father handles it with patience, but it’s clear the effort takes a toll. Some of us in the community, including security personnel, as well as those who know the family, have learnt how to assist, or in some cases to give the father and son their space.

Some of us quietly wonder: what will happen when his father is no longer here? Who will understand his triggers, his medications, his needs? With his father in his 50s, these are not abstract questions. These are truly urgent ones.

With the rise in autism diagnoses and other developmental conditions, this situation is no longer rare. Yet, many parents have not planned for what will happen when they’re gone or incapacitated. Who will care for their child – financially, medically, and emotionally? How will the child’s quality of life be maintained? Will their siblings have the bandwidth or personal commitment to assist? Is that even a reasonable expectation?

As Americans recognize National Estate Planning Month each October, this is an even more pressing issue. It’s also a timeless one. Back in 2021, I wrote a blog exploring “The Challenges of Mental Health with Family Wealth.” We discussed how some wealthy families often struggle with the issues of passing their wealth to the next generation – atop the challenges of mental health issues. How do parents ensure they provide lifelong care for a child with autism spectrum disorder, brain seizures or developmental delays, even depression, anxiety, schizophrenia, alcoholism or substance abuse?

As we discussed then, mental health disorders are seldom reviewed by attorneys, accountants, family offices or financial advisers who focus on managing wealth and conveying assets to the next generation. Stigmas get in the way as do the lack of any quick and easy solutions.

As John Lennon once said, “Life is what happens to you while you’re busy making other plans.” You don’t need to tell this to parents of special needs children. They rarely get a break. They live on constant alert – advocating, comforting, and coordinating daily care and long-term needs.

But amid the busyness, planning for the future is an act of love as essential as the care they give today. Whether you’re such a parent or family member, or friends with someone who is, how can you address these issues?

Start by recognizing where your child is on the spectrum. Is their severity mild, moderate or severe? With this insight, you might be able to foster self-reliance from a young age for a child with mild or even moderate severity. Don’t limit them. Encourage independence. I knew a woman whose daughter was intellectually challenged, yet high functioning. Her mother refused to treat her as anything less than capable. She sent her to a regular school and pushed her to learn. Today that daughter is a married mother of four – bright, funny, and thriving. Independence, when possible, must be nurtured.

Equitable isn’t necessarily equal. If one of your children is lower functioning than their siblings, planning looks different. Financial resources for that child must receive a higher allocation to ensure current and lifelong care. This isn’t about being “equitable” among children; it’s about being fair based on need. It’s important to have those conversations to ensure understanding and avoid any confusion or animosity.

Start planning – and embracing the realities – early. Parental caregivers often pass before the offspring they may care for. Establishing a plan – one that evolves as needs and circumstances change  – provides peace of mind, which on its own can help allay some of the emotional toll such care demands.

In the next discussion, we’ll explore how to begin; which professionals to consult, from special needs trust attorneys to CPAs; and how to select trustworthy individuals to manage your child’s care and resources when you’re not there to do so. If you have questions, let’s talk. I’ve worked with families around the globe who have faced just these issues, including how to address them on a cultural level.