Waivers help parents of kids with autism keep working

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Medicaid waivers that improve access to home and community-based services for children with autism also help their parents keep their jobs, research shows.

It’s more challenging for families of children with autism spectrum disorder to find childcare and other services compared to families of children with other special needs, and waivers can help pay for expensive services that might have otherwise not been affordable.

Also, parents of children with autism are encouraged to spend a significant amount of time participating in their child’s treatment.

“When you’re spending all that time just trying to help your child, there’s less time for work,” says Douglas L. Leslie, professor of public health sciences and psychiatry at Penn State College of Medicine.

The reality is that one parent often significantly reduces their work hours or stops working altogether, increasing financial stress when families may already be struggling to pay for costly services.

‘Aging out’ of autism services brings big stress

Historically, private health insurers have not covered services for children with autism, putting the onus on school systems. However, that help can come too late, because research shows that children with autism benefit from interventions that begin before the start of school.

“There’s been a lot of policy work over the last decade or so to try and improve insurance coverage for kids with autism,” Leslie says. “One of the main mechanisms they’ve tried to do this through is Medicaid waivers.”

Many states have introduced home and community-based services waivers that expand eligibility for Medicaid-reimbursed services and provide services that are not covered under the standard Medicaid benefit.

“We’ve done some research looking at the effects of these waivers on things like access to care and unmet needs, and we thought it would be useful to see whether they’ve had an impact on parent’s labor market decisions.”

For the study, published in the journal Health Affairs, researchers used information from a nationally representative survey as well as Medicaid waiver data to determine how waivers impacted parental employment from 2005 to 2006 and 2009 to 2010.

The findings show that waivers helped. When cost limits and enrollment limits for waivers were raised—giving more families access to more services—there was less likelihood that a parent would have to stop working.

Teens with autism need help on path to adulthood

Characteristics of waivers, such as how much can be spent per child participating in the waiver and how many families can receive services under the waivers, differ from state to state. In the study, the characteristics of a state’s waiver program determined who was helped by that program.

“Caring for a child with autism is difficult. Having an outlet through a job can be very beneficial to the parent’s mental well-being. It gets them out into the community.”

Waiver programs that increased cost limits—making waivers more generous and putting more services into homes—helped the most in lower-income households.

Waiver programs that increased enrollment limits—allowing more families to receive benefits  made the biggest difference in higher-income households that would not otherwise have qualified for Medicaid services.

“Characteristics of the waivers matter,” says Leslie, noting that although waivers can help parents of children with autism stay afloat financially, keeping parents in the workforce goes beyond monetary considerations.

“Caring for a child with autism is difficult. Having an outlet through a job can be very beneficial to the parent’s mental well-being. It gets them out into the community.”

Researchers hope the findings will provide more information to policy makers who hold the purse strings for assistance programs such as home and community-based Medicaid waivers.

“The policy landscape with respect to autism services is very much in flux right now, especially with talk of healthcare reform potentially being reversed,” Leslie says. “I think we need as much information out there as we can get about the benefits of some of these programs so that policy makers can be informed about which policies work and how we can ensure that these vulnerable populations can remain protected as we continue to think about healthcare reform.”

Other researchers from Penn State, the University of Pennsylvania, and the RAND Corporation were coauthors of the study that was funded by the National Institute of Mental Health.

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