Parents of autistic children feel they are "financially drowning," a new study by the non-profit agency Easter Seals finds. Worry over medical and therapy costs, as well as time missed from work, preys on the minds of parents and the children they care for.
"My son is worried that if I die, he will have to live in a park and be homeless," said Moe Mendoza of Ontario, Calif., mother of 12-year-old Nathaniel, who has autism.
The Easter Seals' Living with Autism Study found 74 percent of parents surveyed fear their children will not have enough financial support after they die. Many are concerned about their child's future as an adult, particularly when it comes to financial independence, quality of life, social skills, jobs and housing.
"This study quantifies what we've heard anecdotally over the years," said Patricia Wright, Easter Seals' national director, autism services. "There is an urgent need for increased funding and services."
Mendoza's son was diagnosed with autism two weeks before his 9th birthday.
"We always knew something was wrong," she said. "When he was younger, we were always in hospital emergency rooms. And at school, he was always hiding under the tables and he couldn't initiate any friendships."
At the time of the diagnosis, Mendoza was married to Nathaniel's father, but they split up within a year and she is a single parent.
"When Nathaniel realized his dad and I were really separated, he started wondering what would happen to him when I die," she said. "There's a park in Ontario with homeless people and he worries that's what will happen to him. He wants to find a way to end homelessness."
Mendoza has spent time learning the ins and outs of dealing with county and federal agencies. She helps other mothers in her monthly support group locate agencies and fill out paperwork for financial support.
"A lot of people don't understand the emotional toll of raising a special-needs child ... and what it does to a marriage," Mendoza said.
Research shows that therapy from an early age can make a huge difference, and Nathaniel's experience demonstrates why early intervention is important, she said.
By the time Nathaniel was diagnosed it had already become difficult to move him into public school. He was kicked out of two public schools and one after-school program, Mendoza said. Now he attends a non-public school and is working to transition back into a public classroom.
Mendoza said Nathaniel has made progress in the Casa Colina Rehabilitation Center in Pomona, which offers a social skills program for children severely affected by their disability.
To pay for it, Mendoza found non-profit agencies willing to help.
There also are agencies that can help with rent, utilities and other expenses in times of dire need, she said. "Unfortunately, that happens occasionally."
The Family and Medical Leave Act provides some protection for parents who are called out of work for medical or health conditions of a dependent, Mendoza said.
But, that doesn't mean bosses always understand, and that doesn't mean the leave is paid.
"It takes an emotional toll every time I have to leave work," Mendoza, a secretary, said. "I can't afford to buy a home because I miss so much work ... I worry all the time about the costs of his education, medical treatment and what would happen to him if something happened to me."
Mendoza, also a member of the Ontario-Montclair School Board, said she hopes serving on the board will give her a way to speak for families with special-needs children.
"Financially, you can't take care of a disabled child alone," she said. "You have to know how to fight for your rights."
The Easter Seals study, conducted by Harris Interactive in conjunction with the Autism Society of America, was sponsored by Massachusetts Mutual Life Insurance. For more information on Easter Seals, visit www.easterseals.com. Read about the resources available for people with special needs, their families and caregivers at www.massmutual.com/specialcare/resources.
E-mail Jennifer Dean jdean(at)PE.com
(Distributed by Scripps Howard News Service, www.scrippsnews.com.)
Must credit The Press-Enterprise of Riverside, Calif.
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