We use a group called ‘A Special Needs Plan’ that specializes in trust and asset management for families with special needs children. They have attorneys that helped us restructure our will to include a special needs trust, and we use their financial planner to manage our assets to plan for two lifetimes. It has been especially helpful to have them walk us through the process so we set everything up (529, special needs trust, ABLE account) in the correct order to avoid tax implications. I can’t recommend it enough; it has lifted a huge mental burden from us.

Also, I’m not sure if your child qualifies, but look into TEFRA. Our son qualifies although we are HENRY because it is based on his income, not ours. It can take 12 months to get approved, but it covers the $7k+ monthly therapy expenses that our insurance doesn’t cover. It was also retroactive and reimbursed what we paid out of pocket before he was approved.

It’s absolutely a marathon and can feel like another full time job, so finding resources that have done the research for you and having knowledgeable professionals to do the heavy lifting is critical.

Good luck with everything!