That’s a question faced by parents of the almost 14 million children in the U.S. who have special healthcare needs.1 One in four households has at least one child with a disability2 — a broad category encompassing everything from relatively mild disorders like attention deficit disorder or dyslexia to conditions that severely limit individuals’ ability to care for themselves, such as severe autism, Down syndrome or a rare disease like Evan’s.
Moving beyond denial
“You don’t want to believe that you’re someone with that level of challenges,” says Tara, referring to the possibility that Evan will need care for the rest of his life. “At least initially, there’s a lot of denial,” she admits.
"The first thing parents need to do is educate themselves about their child's needs, both now and in the long term," says Merrill Wealth Management Advisor Donovan Filpi, who works with The Special Needs Team, a California-based advisor group focused on helping families with disabled children. Talk with other parents of similarly disabled kids, he suggests, to get an honest picture of what life can be like for the child and the family going forward.
Though, at 9, Evan is now able to walk and even talk through an electronic communication device, he still lives with intermittent paralysis, unpredictable seizures and intellectual, physical and behavioral delays. Many families with disabled kids try to convince themselves that things will somehow all work out. “And maybe they will,” says Dan, “but what we realized is that we have to plan for every outcome.”