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Your ATN@Work: Helping Families Navigate Complexities of Autism Care

Each center in our Autism Treatment Network has developed a model Family Navigator program; now the ATN is documenting their benefits and evaluating what works best for families 

By Donna Murray, senior director of the Autism Speaks Autism Treatment Network (ATN).

What is a “Family Navigator,” and why does the Autism Treatment Network (ATN) require each of its centers to develop its own model Family Navigator program?

Family Navigators are a relatively recent – and revolutionary – addition to our broader medical system. If you look up the term, you’ll see a variety of definitions:  

“A parent of a child with special needs trained to help other families.” 

“Used to support patients and families dealing with a variety of health issues including cancer, diabetes, asthma and other chronic conditions.”

Family Navigators help patients, parents and other caregivers “navigate” through what can be a maze of doctors, clinics, hospitals, outpatient centers, insurance and payment systems, patient-support organizations and other components of our health-care system.

As many readers of this column know all too well, autism-related healthcare can be particularly complex and “maze-like” – given the interwoven nature of autism’s behavioral challenges and common co-occurring medical issues such as seizures, GI disorders and sleep disturbances.

Just as important is the need to accommodate the heightened sensitivities and stresses that medical visits and procedures can provoke in a patient who has autism.

So what does it mean that we require each of our ATN centers to provide “family navigation” for patients with autism?

Parents or professionals?
Does the navigator need to be a parent of a child with autism? Can a healthcare professional or paraprofessional fill this role? What kind of training should they have, and what kind of services should they provide?

Recently, the ATN began reviewing family navigator services across our sites. We saw a wide variation on how these services are defined and delivered.  

A diversity of approaches
On one thing we agree: Our families benefit from support in navigating autism’s often-complex medical and behavioral therapy systems. But each of our centers has its own unique take on how to best accomplish this. We see this in the different types of services provided.

Some of our centers focus on family-to-family mentoring. Others have highly trained professionals guiding families through the process of screening, diagnosis and services. Some provide coordination that goes beyond their centers to help families access additional services in their communities.

Identifying what parents really need

We welcome this diversity of approaches. At the same time, we want to better understand their benefits and limitations.

To learn more, we have explored Family Navigation models outside of the ATN. We found few studies looking at such programs, and no research documenting exactly what services are being provided for children with autism at medical centers across the U.S. and Canada.

Clearly, many questions remain as to how these roles are filled and how they’re funded. We also need to understand how families find such services, and what kinds of services they need most.

To ensure that our programs are providing real benefit to families, we need to better define what existing program provide and then document and compare their real-life benefits.

So the ATN has undertaken a study with the following goals:

1. characterize the family navigation services currently offered at our 14 sites

2. identify barriers and constraints to delivering these services

3. determine the best way to identify and evaluate the benefits and outcomes of model family- navigation programs

Why we need hard evidence
Studies like this are crucial to demonstrate the benefits of family navigation services. It may seem obvious to our families. But in an age of tight healthcare funding, we need scientific evidence of clear benefits to ensure that such programs become the new standard of care.

Bottom line: It can be extremely difficult for hospital administrators to gain approval for hiring nontraditional staff – especially when these positions do not generate revenue.

This makes it especially important to prove the benefit of these services to not only hospital administrators but also reimbursement systems such as health insurers.

Having a network like the ATN allows us to evaluate a number of different models at the same time. We can look for the best outcomes and then develop a system to replicate model programs across our sites.

Beyond the ATN, we hope to share the best evidence-based models with other institutions across North America. And we will help make these programs get started by providing administrators with the sound evidence of benefit they need to get family navigators hired!

Autism Speaks and its ATN partners are committed to helping children with autism receive better medical care. This includes assisting families as they negotiate a complex medical system. We are committed to improving the medical care for all children with autism today.

* Learn more about the Autism Speaks Autism Treatment Network here.
* Find the ATN center nearest you 
* Explore our archive of ATN expert-advice blogs and news stories 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.