Money Matters: Why Parents of Children With Autism Need Better SupportKatie Taylor
Any parent will tell you that raising children is expensive. Financial priorities change the moment a baby shows up (and usually before). It’s hard for all parents, and that’s exactly what parents of children on the spectrum may hear: “Well, it’s hard for all parents.” But the challenge for parents of children with autism is different in both degree and duration.
The cost of raising a neurotypical child in the United States is about $233,610 in a middle-income family, not including the cost of college. But the lifetime cost to support a child with autism is about $1.4 million, and about $2.4 million if that child also has an intellectual disability.
Most, but not all, of that cost comes from special education support and loss of income opportunity for parents. So yes, raising any child is expensive. But the numbers call for a different level of support for families with special needs.
Therapy and Education Costs
Children with autism are stuck in a world full of neurotypicals, and they often need special education and/or therapy to give them the tools they need to succeed. Perhaps a public school will offer an appropriate special education program, but perhaps not. And parents may feel that a different school or course of education is best for their child. There may separate therapy sessions needed for both physical and mental development. A tutor might be needed to supplement classroom learning, and all of this has an associated cost.
Perhaps the State or insurance will pay for all or part of the special education costs, but benefits vary by state and the benefits available for children with autism and other conditions are often confusing. Parents may struggle to find out what’s even available.
One parent blogger described both her and her husband as making “pretty good upper-middle-class salary.” She says she pays $240 a month for therapy sessions for her son with autism in addition to over $1,500 a month for special child care and other costs.
But the $240 is for three sessions a week, and she pays a $20 copay per session. Imagine the financial strain of that cost (let alone daycare and supplies) on a family without insurance, with less robust insurance, or with a smaller income. It’s not surprising that an autism diagnosis can turn a middle-income family into a low-income family.
Writer Jeff Howe describes himself and his wife as “firmly ensconced in the upper middle class,” but when his son, Finn, was diagnosed with autism, developmental cognitive disability, and other developmental delays, their finances changed. They spend about $31,000 a year on their son’s care provider and healthcare costs. A financial planner told them they needed to give up their caregiver in order to save for retirement and for college for their older daughter. But that’s a hard ask.
Jeff says, “To the extent we have anything approaching a normal life, Gee [the caregiver] makes it happen…” Jeff’s story illustrates how the cost of quality care can be a struggle for even well-to-do families. Perhaps he could manage to spend less on Finn, put him in less advanced therapy, find a way to cut childcare costs, but the goal of special needs parents is to give their children everything they need. Jeff says, “Finn is my son, and I love him. It has come as unwelcome news, then, that it’s not clear how we’ll afford to give him everything he so desperately needs.”
Loss of Income
Often a parent will chose to stay home to care for their child instead of work after an autism diagnosis when they would have otherwise stayed in the workforce. In the United States, parents of children with autism work, on average, 7 hours less per week than parents of children without autism. That’s estimated at a $18,720 loss of annual income. The loss of parent wages along with special education services account for the biggest percentage of the cost of raising a child with autism.
Some children with autism will need some sort of care even after they’re adults. After they age out of support from school districts, children (now adults) with autism will need continued care, and how much support is available depends on where they happen to live. Loving, and worried, parents will try to find a way to support their children, and some parents choose to move to states where better support is available.
Why it’s important
In the United States, one out of every 68 children is diagnosed with autism. Some health insurance plans won’t cover necessary behavioral-related therapy since it’s not considered medical. The national cost of getting children with autism the care they need is around $61 billion in the United States.
If parents and children are to get the support and care they need and deserve, we need to have a system in place—a system that supports people with autism throughout their lives. Poverty is growing among parents with children with autism, making them less able to give their children all the care they need.
There are private programs for financial assistance, but we need government-funded programs that will allow parents to stress less about paying for their child’s care so they have more time to focus on on enjoying being their child’s parent.