Michael and Carole Maguire’s second daughter, Ally, was born with a rare chromosomal disorder, trisomy 12.
“Doctors didn’t know much about it because it was so rare, but they said she would be profoundly mentally challenged,” Mr. Maguire said. “We didn’t think she would walk or talk.”
Mrs. Maguire set up an online support group shortly after Ally was born in 1999, but there were few other families to lean on at first.
Facing many unknowns, Mr. Maguire said he did the only thing he could thing to do: prepare financially for her future.
“I knew quickly, with her diagnosis, that the most tangible thing I could do was financial planning for her,” he said. “I couldn’t fix her diagnosis.”
Ally is now 19, walking, talking and attending a boarding school for children with special needs. The Maguires, who live in Mansfield, Mass., are just as vigilant with their own financial planning, including retirement. But planning for children with special needs is far more complicated.
For one, wealth improperly distributed can hurt children with special needs, because they risk losing government benefits for their care if they have too much money in their name.
At the same time, their parents need to have more life insurance than typical parents, particularly early in their lives, to ensure there is enough money to care for their child into adulthood.
Most parents are going to need help navigating the benefits that their special-needs children receive, including funding for physical and occupational therapy, reimbursements for specially tailored schools and government assistance when the children become adults.
“You can quantify how much someone needs