Expanding autism program could help thousands in Md.

In my work with children on the autism spectrum, I have witnessed and been deeply touched by the sacrifices that families make and the struggles they face to obtain necessary services for their children. Their journey to ensure their children have the best lives possible is often frustrating, isolating and dehumanizing. (Bureaucracy tends to have that effect — there is a lot of paperwork.) Their resourcefulness and dedication to their children’s future is inspiring, and I always get a strong urge to wave a magic wand and make their problems go away.

Today, an average of1in 68 children in the United States has an autism spectrum disorder (ASD). These rates are staggering, but what is even more surprising is that Maryland’s rates are even higher — about 1 in 60.

Medicaid’s Home and Community Based Services (HCBS) Waiver for Children with Autism Spectrum Disorder, better known to many as “the Autism Waiver,” has provided much-needed assistance to many children and families in Maryland. The waiver provides services to eligible children who already receive special education services, and it “fills in” some of the service gaps that are not covered by early intervention programs or other Medicaid services.

But the autism waiver can’t meet the demand. Today, there are slots available to serve 1,000 children with autism throughout the state. Unfortunately, there are over 3,800 children on the waiver’s registry, and with such a tremendous wait list, it will be years before many of them receive services. Families I spoke with said they may place their 5-year-old on the wait list and not receive services until their child is an adolescent — and children who do not receive timely services are at a disadvantage. Research continues to support the importance of early-as-possible interventions in improving outcomes for individuals

Services, when they come, are too late to do the most good

with autism spectrum disorder. And for many of the lucky families who make the cut, the waiver does not solve all of their problems or provide every service a child could need.

Still, what the waiver does is truly priceless and essential. It allows for children to receive individually tailored, oneon-one services for 30 hours a week. It provides a set number of respite hours, which allow parents to get out of the house and spend time to themselves — something many parents are not able to experience unless their children are at school, a time when they’re often at work. The autism waiver also allows for professionals to help children live well in their own homes and communities, and through their actions tell parents and caretakers — who often hear a lot of “no, there is not enough funding” or “no, you don’t meet the eligibility requirements” — “you matter, your child matters, and your entire family matters.”

The Maryland Commission on Autism suggested in 2012 that the state make funding available to increase the waiver slots by 100 each year. The report also notes the surprising fact that the average age of children receiving waiver services in Maryland is between11and15 years, “well past the time of maximum intervention of early intervention services.”

It’s time that Maryland’s Medicaid program followed the commission’s advice and continued its tradition of supporting people with autism and their families by creating a plan to add slots to the autism waiver.

Creating such a plan would send the message to the 1 in 60 children with autism in Maryland, as well as the thousands of people who care for them, that they matter. It would send the message that there is a plan in place to ensure parents that their children will not fall through the cracks, and that they will not spend a decade on a wait list, uncertain of the future. Tackling this problem may seem formidable now, but with autism rates seemingly forever on the rise, you can be sure the wait list will only get worse unless action is taken.