Autism Acceptance Month is about supporting and embracing the diverse strengths of individuals on the autism spectrum. Accolade launched the Autism Care Demonstration program in October 2021 with four Autism Care Demonstration Navigators, ready to serve the first member. Today, there are 60 Navigators on the team serving more than 6,000 individuals diagnosed with autism spectrum. The navigators specialize in addressing the unique needs of military families.

We sat down with Nicole McLean, BSN, RN, Senior Clinical Manager at Accolade to learn the importance of Autism Acceptance Month to the community we serve and how her team reduces barriers to care for those with autism.

What does Autism Acceptance Month mean to you?

Great question. The autistic community needs acceptance and support from society, at large.  1 in 36 children and 1 in 45 adults in the United States are diagnosed with autism. Changing the perception of autism provides an opportunity for everyone to support and validate the individuals, parents, teachers, caregivers, and clinicians with grace. This also shines a light on the stories of strength and resilience 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 vary from person to person. Autism Acceptance Month is a wonderful opportunity to highlight individuals on the spectrum and their unique gifts.

Do you have some examples you can share with us that paint a picture of what someone may experience if they or someone in their family has autism?

Chelsea, a Navigator 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 Navigator looks to guide and support our ACD families by finding and connecting them with local resources and 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 autistic mom enable her to relate and identify with the families that she supports.

Another Navigator on our team, Kerry, has been a registered nurse for 36 years and her role at Accolade has brought a new and exciting aspect to her nursing career. There are parents, spouses, and family members who are incredibly busy and overwhelmed with balancing life’s responsibilities and navigating their child’s autism journey. As their Navigator, Kerry ensures they are supported with educational and local level resources, gain access to Applied Behavior Analysis (ABA) services, locate ancillary services, and serve as their primary advocate, all with a holistic approach to ensure identified barriers are removed to prevent gaps in care.

Here is a message of appreciation from a beneficiary's mother:

"Ms. Kerry has been our ACDN for a little over a year now and not once has she missed any of my calls or messages. Whatever it is that I need or have concerns about my daughter who is diagnosed with ASD level 2, she is always on it! Today, I was feeling a little more anxious and stressed than usual about my daughter, and my gut told me to call Ms. Kerry for advice. Sure enough, right after speaking with her, I was given so much peace of mind. She is always willing to go out of her way to help in any way she can. I do not mean it lightly when I say that she is the best! I have never experienced someone as professional as her and especially because we are pretty new to all these things since it was just last year since my daughter started services for her autism diagnosis, I tend to feel overwhelmed but having Ms. Kerry in our life made wonders not just for my daughter but for our whole family. We adore her and she more than deserves to be recognized for her work ethic and professionalism!"

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

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.

It is great to hear so much progress has been made. On the other side of the topic, what are the biggest challenges people with autism face?

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 that they do not always fit into.   In addition, the autism population has vastly grown where there is a lack of resources and a shortage of healthcare providers who have the expertise to accurately diagnose the condition. In many areas, the primary therapy to support people diagnosed with autism is not available for months — if not years — due to provider shortages.

How can Accolade ensure the closure of healthcare gaps to better support and improve access for individuals with autism and their families?

We can close the gap by building trust with our members. It is following up with the providers through care coordination and keeping our promises to our beneficiaries. We want to make sure that we understand their needs right off the top, assessing for those barriers and gaps and providing the whole person care. We do a full assessment to understand what is needed. By identifying them early, we can then take that leg work off the parents and then do the care coordination in the background to try and close all those gaps for them and hand them back something that is fully delivered so that they can focus on their lives.

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 and their families?

The ACD program, in a nutshell, is getting connected to 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 by providing and/or finding:

• Resources  

• Support groups  

• Activities — for example: swimming or music therapy  

• Financial support   

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

• Benefits of their military health care system 

• 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. Building trusting relationships is so important to us.

I think the other important piece to note is that there are no age or time limits. The goal is that they feel empowered and educated enough that they can take these things on themselves. We want to ensure they can navigate challenges as they arise and if they ever need us again, they can come back into the program and their team will still be here to support them. 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 resource

We hope that families will be able to successfully navigate on their own in a fashion that provides the individual 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.

How long do people typically stay in our program?

Right now, we are averaging around 12 to 24 months. However, we try to align the timeframe around the individual and the needs at hand. 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 now have 60 navigators on our team, and we have been fortunate enough to support more than 6,000 families since the program launched in 2021.

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

Working through the insurance part of the puzzle can be a big challenge for a family. Our team is immediately ready to investigate. With the knowledge and expertise of our autism service navigator team, we were able to take the steps necessary to advocate for the individual. 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.

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

I would say finding local support and resources and identifying and connecting with providers 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? A family needs much coordination to set their child up for success.   Another example is when our military families move across the country. Imagine how hard it is to get set up with all the providers for an autistic child in your area and you are told to relocate. This team does such an amazing job of finding and connecting families with resources and providers every time. We offer our families a soft landing, so they do not move from one place to another without losing care. We make sure it is a seamless and fluid process.

Is there anything else about the ACD program that we did not touch on today that you would like to add?

One thing I am 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 supporting and working with diverse populations — because that is 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

Anything they need, we start connecting with them 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. Our Care Team supports these families throughout their entire journey.   Many of the people who come to our program are parents of autistic children. They purposely decided to change their career and join our team because they did not have this resource when they were raising their children, and they are now joining us to make a difference for the next generation of parents and individuals who are autistic. They are joining because they are going to be the difference makers for that next mom, dad, or person that is trying to get through this because they have that compassion, and they have that true understanding of what that parent or person is going through. That is a big takeaway for me.

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

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 60 navigators on the team serving more than 6,000 individuals 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 including a large population of children with autism. She worked at a local hospital for 11 years before joining Accolade where she spent most 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.