Case Management and Autism

By Joy Gehner, Family Advocate Case Manager on the Autism Center Family Resources Team

My daughter Audrey was diagnosed with autism when she was four years old, more than 20 years ago now. Two years earlier, a series of hearing evaluations had already told us she was profoundly deaf. It felt like I was just starting to understand that first diagnosis when this new one was added to the mix.

Like so many parents in this situation, I dove into learning all I could about these conditions that affected my child’s sensory processing, communication, social connection and behaviors. I enrolled her in developmental preschool and a whole array of therapies – occupational therapy, speech therapy and the auditory therapies that went along with her brand-new cochlear implant to help her learn to hear.

It seemed like everyone we met had things to recommend: her therapists and teachers; her medical providers; and even the other parents I was meeting in waiting rooms and on the school playground. It felt like there was something new I had to learn almost every day.

I remember feeling overwhelmed and like I was not the right person to be making these very important decisions. Which of these strategies and ideas would best support her needs, help her catch up to her peers developmentally, give her the biggest chance at blossoming into the little girl she wanted to become? How could I know we were doing all the right things, at the right times, in the right way for her to best succeed?

At Audrey’s five-year well-child visit, I asked her pediatrician “Who’s the person that helps me coordinate all these things my daughter needs? Who helps me make sure her teachers know what her therapists have recommended for her, and that her therapists know what she’s doing at school? And who decides how to balance all these things and makes sure I’m not forgetting anything important?”

“Ah, you mean like a case manager?” Dr. Chris said. I was thrilled to have the right term for what I was looking for, excited to be on the right track at last.

“Yes! Exactly! A case manager. Where do we get one of those?”

“I’m afraid that’s going to be you,” she replied.

This question about who will manage their child’s autism care is one that families continue to ask us here at the Autism Center. And, for better or for worse, the answer is still largely the same today as it was for my family over 20 years ago.

If you’re a caregiver or parent who wishes, like I did, for a case manager to help you do the work, and above all to make sure you get it right for your child, here are some lessons I learned and some resources our team suggests that we hope will help along the way.

You’re the best case manager your child could have – and your medical providers can help

You’ve heard this before, and we will tell you again: You are the best expert on your own child. You’ve known them the longest. You see them in every situation, every setting – not just in a classroom or a clinic, but in the real everyday world of family, neighborhood and community. This makes you exceptionally qualified to understand what they most need from all the experts on their team, and to help every teacher and therapist understand who your child is as a whole person.

This doesn’t mean you’re alone. If you want someone to support you with the big-picture questions about developmental goals or particular concerns (such as sleep, feeding or toileting issues), our center offers developmental care consultations with our team of nurse practitioners and physician assistants. (Ask your child’s doctor for a referral to Seattle Children’s Autism Center; if you are new to our center you will attend our introductory ATLAS class before accessing clinical services. Learn more about the services offered at the Autism Center.) Other pediatric clinics or Autism Centers of Excellence may offer similar follow-up care.

You’ll find other support along the way

Parents share that it can feel difficult and time-consuming to connect all the people on their child’s “team.” I found that when I shared my excitement about what each expert was contributing to my daughter’s progress, I didn’t aways have to be the go-between making communication happen. Audrey had teachers in elementary school and high school who were happy when I signed releases so they could email directly with her therapists (including me on CC). In other years it was the board certified behavior analyst (BCBA) who ran her applied behavior analysis (ABA) program at home, who took on some of these tasks and kept me in the loop – saving me many extra hours of email and phone calls.

Keep asking for the kind of teamwork and communication you want from your child’s providers, and celebrate when your team includes someone who likes doing this with or for you as part of their job.

Remember also to take time for your own needs, and try to connect with other parents and caregivers to share experiences – and maybe learn other good case management tips!

Take advantage of the case managers you do have

You may work with case managers (CMs) or others in similar roles at many agencies and organizations you encounter on your child’s autism journey. Here are a few common examples and how these CMs might support you and your family:

• Your insurance plan may offer case management or care coordination for members with complex medical or behavioral health needs. This commonly includes assistance finding providers for recommended therapies or services and navigating the necessary paperwork for approval. Contact your child’s insurance plan directly to find out if case management services are available.
• For eligible clients, Apple Health MCO (Managed Care Organization) case management (or care coordination) may also provide support with other types of resource navigation, such as applying for housing or food benefits or managing complex care coordination. Call your child’s MCO and ask about the Health Home program.
• DDA (Developmental Disabilities Administration) case resource managers (CRMs) are assigned at various stages of the application and service request process. Once your child is an established DDA client, their assigned CRM will help you understand, navigate and access the services available to them, or how to access higher levels of service if needed.
• The IEP (Individualized Education Plan) case manager is typically the special ed teacher or another school district representative, and is in charge of all the administrative processes surrounding your child’s special education and IEP (scheduling meetings, sending out paperwork, etc.).

And of course, case managers like myself here at the Autism Center help connect families with autism-related resources in the community. You can find the resources we share most often on our Patient and Family Education page.

Are there topics or resources you want to learn more about in The Autism Blog? Write us at TheAutismBlog@seattlechildrens.org to let us know!