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Autism Acceptance Month: Changing the culture around autism

By Accolade | April 12, 2023 | 9 min read

There are about 1 in 36 children in the U.S. who have been diagnosed with Autism Spectrum Disorder and many of these kids are not receiving the care and support they need. So, we sat down with Nicole McLean, BSN, RN, clinical manager at Accolade to learn why Autism Acceptance Month is so important and explore what resources are available to our military beneficiaries and their dependents with autism.

Nicole and her team of autism service navigators and coordinators partner with TRICARE® West Region contractor, Health Net Federal Services to support families through the Autism Care Demonstration (ACD). This program provides essential nurse navigation and care management services to those most in need and helps them navigate the healthcare system including access to services and resources. The ACD team works not only to provide access to healthcare but also provides hope and healing. 

Accolade: Why is Autism Acceptance Month important? 

Nicole: Great question. The autistic community needs acceptance and support from society, at large. It’s about changing the perception of autism and provides an opportunity for everyone to support and validate the children, parents, teachers, caregivers and clinicians with dignity. This is also a time to shine a light on the amazing stories of strength and courage within the autism community.   

Autism is not always visible from an outsider's perspective. There is no one way to be autistic. Autism presents a unique set of challenges and strengths that varies from person to person. Autism Acceptance Month is a wonderful opportunity to highlight individuals on the spectrum and their unique gifts. 

Accolade: Do you have an example you can share with us that paints a good picture of what someone may experience if they or someone in their family has autism?  

Nicole: Chelsea, one of the autism service navigators on my team, is an amazing autism mom and shared her experience with me. When her child was initially diagnosed with autism, her family’s entire world changed. Suddenly, she was trying to advocate for her son without fully knowing where to turn, what resources were available or simply where to start. There is such a steep learning curve that requires many sacrifices from the parents and other members of the family.  

This is where the autism service navigators look to guide and support our ACD families through finding and connecting them with local resources and to the right providers. The team is there to ensure that these families feel supported and have someone to turn to during difficult times. Chelsea’s personal experiences as an autism mom enables her to relate and identify with the families that she supports.   

Accolade: That’s wonderful to hear. Thank you for sharing that. Along the lines of making progress and changes to support individuals who have autism, has there been changes from a provider perspective, as well?  

Nicole: Throughout the past decade, therapies, resources, local community support groups, special education and recreational activities have embraced the autism population through a greater understanding and dedication of resources. Providers have also been a part of that positive change. They understand that it is very easy to get diagnosed now. You simply fill out a form, and if you have at least one of those autistic core symptoms, then you will receive a diagnosis and proper treatment.  

Accolade: It’s really great to hear that so much progress has been made. On the other side of the topic, what are the biggest challenges people with autism face? 

Nicole: People with autism learn differently. Sometimes, they need to be in different environments. One of the biggest challenges for people with autism is learning how to utilize tools to navigate a world that puts people in boxes in which they do not always fit into.   

In addition, there is a lack of resources and a shortage of healthcare providers who have an understanding of the diagnosis. In many areas, the primary therapy to support people diagnosed with autism is not available for months — if not years — due to providers shortages. 

Accolade: That makes a lot of sense, and we can see how those would be barriers to getting the right care. Can you share what Accolade is doing specifically through our Autism Care Demonstration program to serve members with autism and their families?  

Nicole: The ACD program, in a nutshell, is getting connected to Applied Behavior Analysis (ABA) therapy, and then graduating from it — specifically for our military families. However, what sets us apart is that we treat the family holistically. We do this through providing and/or finding: 

  • Resources 

  • Support groups 

  • Activities — for example: swimming or music therapy 

  • Financial support  

  • Therapy — including speech, physical and/or occupational therapies 

  • Grants through Exceptional Family Member Program (EFMP)

  • School collaborations with teachers 

  • Medical team conferences every six months — anyone is invited to join including: teachers, providers, EFMP, coordinators, case managers and family members 

When the families come into the program, we get them connected with all the needed support systems. This includes the above list, plus helping them navigate their insurance. We want to make sure there are no gaps in their service or care. Most importantly, we want to build a trusting relationship with each family. Last week, we had a family in which the mom was in a domestic violence situation. We were the first people she called. Building trusting relationships is so important to us.   

I think the other important piece to note is that these families are not going to be with us forever. The goal is that they graduate from the program. We want to ensure they can navigate challenges as they arise without needing additional support from the navigators. We do this by teaching each family how to: 

  • Navigate their insurance 

  • Find resources 

  • Connect with community resources including support groups 

  • Identify how to overcome any challenges and where to seek the appropriate resources 

It’s our hope that families will be able to successfully navigate on their own in a fashion that provides their child with advocacy support and the opportunities they need. However, should something change in the future, they are always welcome back into our program if they are still within their referral time window, or if they receive another approval. 

Accolade: How long do people typically stay in our program?  

Nicole: Right now, we are averaging around 12 to 24 months. Our goal is to provide excellent service and support to our families while also best utilizing government resources and demonstrating the imperative need for continued access to ABA. We’ve been fortunate enough to support more than 3,000 families in less than two years. 

Accolade: Wow — that’s a lot of people positively impacted by you and your team. That’s great to hear. Earlier you mentioned gaps in care. Can you dive a little deeper into that? 

Nicole: Working through the insurance part of the puzzle can be a big challenge for a family. This morning, we had a dad who called us in a panic because he was told his son’s ABA therapy was stopping tomorrow. Our team immediately jumped in to investigate.  

It turned out to be an authorization paperwork error. With the knowledge and expertise of our autism service navigator team, we were able to take the steps necessary to advocate for his approval. If the family tried to navigate this on their own, they would have had to make multiple calls, leave voicemails and still may not have understood how to resolve the issue at hand. Healthcare can be overwhelming for families to navigate. Our team removes those gaps and barriers so parents can focus on the important things.   

Accolade: We can imagine that’s a lot for families to navigate without the ACD team’s support. How frequently does that tend to happen? 

Nicole: Unfortunately, even with the best intentions all around, barriers like that can happen quite frequently because everything is on an authorization cycle. Services are authorized for roughly six months, and it’s a complex authorization process that families have to go through. Our goal is to remove those barriers, alleviate as much stress as possible and provide the best care available. We don’t want anyone to give up on getting the care they need.  

Our navigators watch for everything. A big part of our job is preventing any gaps in care so families can get all the services they need. This includes identifying community resources to bridge those gaps when the health plan alone does not meet the need. 

Accolade: What parts of the healthcare system are hardest for someone with autism or a family member to navigate? 

Nicole: I would say finding local support and resources is one of the biggest roadblocks. For example, my child wants to go to music therapy, but he or she struggles with sitting in a session with other children. Do they have a program designed specifically for kids with autism? If they do, how is it paid for? There’s a lot of coordination that a family needs to go through to set their child up for success. 

Accolade: Is there anything else about the ACD program that we didn’t touch on today that you would like to add? 

Nicole: One of the things I'm really, really proud of is that we look for quality over quantity when it comes to our staffing. Everyone on our team loves supporting people who have autism. They also love pediatrics and working with diverse populations — because that’s exactly what our military is comprised of.  

Change can be very difficult for families who have an autistic family member. We do our part to help them facilitate the move and manage all the change that comes along with it. For example, we: 

  • Align them with other autism service navigators 

  • Help them find new providers including pediatricians, therapists, etc. 

  • Identify and provide resources that will be helpful in their new location 

Basically, anything they need, we start connecting them with as soon as possible. Our team is very dynamic. We have social workers, as well as registered nurses. These individuals make our program what it is today. Team members stay and support these families throughout their entire journey. That’s a really big takeaway for me. 

Are you interested in learning more about the Autism Care Demonstration for our military families? Contact an Accolade representative today.

“This journey has been a dream come true, and the Accolade team continues to do incredible work for a very special population.”

Nicole McLean became the first steward of the Autism Care Demonstration when she joined Accolade in June 2021. The program was launched in October of that year with zero beneficiaries and four autism service navigators. Today, there are 44 navigators on the team serving more than 3,300 children, adolescents and young adults diagnosed with autism spectrum.

Prior to working for Accolade, McLean began her nursing career in 2009 as a case manager caring for medically fragile children to include a large population of children with autism. Simultaneously, she worked at a local hospital for 11 years prior to joining Accolade where she spent the majority of her time in the women’s and children’s department.

McLean was born and raised on a farm in Wasilla, Alaska with a passion for healthcare and military personnel because her father was an Air-Force veteran and a local dentist. She moved to Seattle in 1999 on a basketball scholarship where she found her true internal love for children and helping others. She earned her bachelor’s degree from Seattle University College of Nursing.

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