An autism diagnosis impacts more than just one individual. The pathway to care and support often involves the entire family.
Additionally, parents are taking a more active role in therapy, which could help overall outcomes but increase the caregiving burden. Still, there are few supports to cater to the families of those with autism. That could be changing as providers pinpoint the gap in care.
However, this isn’t the only gap in autism services. Support and therapy for individuals with autism often end at age 18. Yet, the needs of many with autism continue. Now, some providers are looking to support people with autism into young adulthood while bringing their families into the fold.
More family involvement and support
With the chronic shortage of registered behavioral technicians (RBTs) and the growing demand for services, some in the industry are pitching for families to start to take an active role in ABA services. One way to do this is through parent-led ABA therapy.
“We’re giving them a toolbox of skills where they can practice with their kiddo daily. So, in the morning, when they’re getting them ready for school, they’re using applied behavior analysis and all of the skills that an RBT or a BT would use,” Dr. Mitze Burnett, founder and CEO of Burnett Therapeutic Services, said at the Autism Investor Summit. “It’s really done in the natural environment, and it’s more of a way to support the family. And I love this because, as you know, we have a shortage in the field of RBTs and BTS, so this is almost a step in between. Let’s get services going ASAP for the family. Let’s not have them waiting to walk for services. And so I have really gotten behind that as a treatment modality.”
Napa, California-based Burnett Therapeutic Services offers clinic-based ABA services, mental health therapy and other behavioral health services.
Still, parent-led services aren’t the only way to bring families further into the fold with services. When a child gets an autism diagnosis, it can impact the entire family. Education and wrap-around services could play an important role in caring for the family and child.
“We need these parent-led groups and advocate programs, and parent training. I can’t tell you how often I treat kids who are struggling with autism and their siblings suffer with depression and anxiety,” Dr. Garima Singh, Chief Medical Officer of Burrell Center Inc., said at AIS. “A whole family is struggling. We need to bridge the gap and provide support.”
Burrel Center is a behavioral health provider that offers autism services, therapy, counseling, psychiatric services, residential treatment, addiction recovery, crisis intervention, case management, developmental disability services, integrated services and other programs. It has 37 centers and cares for 40,000 clients.
Singh noted that families dealing with a chronic illness or a cancer diagnosis often have support services provided. However, that rarely happens with autism. While there could be a move to offer more of these services, the major factor preventing it is lack of reimbursement.
“I think it just really comes down to how we can do a better job as providers, incorporating things into organizations that are not necessarily always reimbursed by insurance providers. It’s just the reality,” Brittany Rader, president of clinical services at Behavioral Framework, said at AIS. “We have to do it. It’s just a systemic problem. But it doesn’t mean it can’t be addressed, or shouldn’t be addressed.”
Behavioral Framework is an autism services provider that offers in-home ABA services in Maryland, Virginia, North Carolina and Washington D.C.
Preparing for the services ‘cliff’
Autism services tend to focus on young children. However, when an individual leaves the K-12 school system, services often drop off.
There could be an opportunity to tailor services to a young adult population, who no longer have access to public education services, but still need support.
“The service cliff is what it’s referred to, and it’s very true,” Rader said. “There’s just an abrupt stop to services when you turn a certain age. We’re not prepared as a community to have things for these kids to do and places for these kids to go. Then you couple that with this limited access to care and what they’re getting now at a younger age, and we’re not preparing the children or ourselves for Living in a world where autism is not rare anymore.”
In the future, providers could expand their offerings to cover this patient population better.
“We put all the resources and all the training and all the staff in early years, and schooling and training, but boom, our kids turned 18, and we have no resources,” Signh said. “We definitely need more reform for when our kids turn into young adults, and help them be successful with vocational health, finding a job, getting into college degree, supporting them with independence, and paying bills, living support, and all those kind of things which are really, really lacking at this point, again, highly variable which state and which county.”
