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Your ATN@Work: Helping Families Navigate Autism Healthcare

Autism Speaks asks each of its Autism Treatment Centers to develop its own “Family Navigator” program. As the term implies, the goal is to help families navigate the complexities of autism healthcare as well as related behavioral and educational services. As part of this program, each site has one or more specially trained care navigators.

The care navigator is trained to support families and help them access and coordinate healthcare and behavioral support services. ATN care navigators can be social workers, therapists, nurses or even parents of children with autism. Their roles can include:

* Educating newly diagnosed families, often with the help of the “Autism Speaks 100 Day Kit” and other ATN/AIR-P tool kits that address their child’s needs

* Serving as a liaison within the ATN center to ensure that families get appropriate services

* Connecting families with additional resources in their community

* Providing guidance on individualized education plans (IEPs) and community advocates

* Developing and delivering workshops and other training activities.

* Helping families develop transition programs to ensure continuing healthcare and support for teens approaching adulthood.

Beyond these basic requirements, Autism Speaks leaves it to each ATN center to develop its own unique navigator program, based on its community’s needs. In this ATN@Work post, we’ve invited the “Family Support Specialists” at Boston’s Lurie Autism Center to describe their program.

 

Blog post by (left to right) Family Support Clinician Suzanne Bloomer, Family Support Clinician Julie O’Brien and Social Worker Ellen Roth. All work within the Lurie Autism Center, at the MassGeneral Hospital for Children. The Lurie Center is one of 14 centers in the Autism Speaks Autism Treatment Network.

If you were to stop by our bustling family support office, you might see Suzanne conferring with a physician regarding a patient’s new tendency for extreme tantrums, before meeting with the family to discuss how they can to get more in-home behavioral services. Julie might be on the phone talking with a school counselor – explaining the recommendations in a recent neuropsychological evaluation. Ellen may be phoning the staff at a group home to discuss a resident’s self-injurious behavior and then consulting with the patient’s provider.

The Lurie Center believes that family-support services are critical to successful comprehensive care for individuals with autism. In addition to helping families obtain important information, resources and service, we organize educational workshops, seminars and events for our young patients and their families.

As family-support clinicians, we join parents and patients on their journey and foster a more trusting relationship between the clinic and the family. We may not have all the answers or be able to fix every problem, but we’re here to listen and provide guidance when needed. A parent once told us, “being guided in the right direction is priceless.”

The three members of our team each specialize in a particular area of need across the lifespan.

Support at diagnosis
Many parents tell us that bringing their child for developmental evaluation brings up intense and mixed emotions. Even the decision to pursue an evaluation can be a rollercoaster ride – from telling themselves nothing is wrong to wanting desperately to help their child and from wanting to understand why their child is “different” to being afraid of finding out that this difference is autism.

At the first evaluation visit, our clinicians do an excellent and thorough job of evaluating a child, providing treatment recommendations and answering questions. Despite this, parents usually go home feeling overwhelmed and lost. This is why the three of us are here to offer help.

Since 2007, the Boston Autism Consortium has supported a full-time autism resource specialist. (That’s Suzanne.)  Suzanne’s primary role is to support families through the frequently overwhelming time around a new diagnosis of autism spectrum disorder (ASD).

This begins with helping the family understand the diagnosis and find the support and services they need. Over the following months, they will likely need help “navigating” to and through the resources available for their child as well as the whole family.

The autism resource specialist’s unconditional acceptance fosters a trusting and lasting relationship with parents. When the family returns for follow-up appointments, Suzanne meets with them to see how they’re doing and provide further support as needed.

Between appointments with their child’s healthcare provider, Suzanne is available to answer questions or just lend an ear. Many parents have expressed their appreciation of this on-going support. As one parent said, “Having someone to call, knowing you will be there, to check in with when we just need to, has kept us going.”

Support during childhood transitions
The need for support may be most intense following a new diagnosis. However, we’ve found that our services continue to be needed throughout the lifespan, particularly through critical transitions. These include the toddler’s transition out of early intervention and into the school system and then from the school system into the world of adult care.

As the Lurie Autism Center clinic has expanded to work with individuals across the lifespan, our family support department has evolved to meet this need. In particular, we have greatly increased our focus on helping families with older teens make the transition into young adulthood.

Support into adulthood
To meet the growing need, the center created the new position of “family support clinician” to focus specifically on the transition to adulthood. In 2010, this position was made possible through the Nancy Lurie Marks Foundation and the fundraising efforts of the Friends of Lurie. The Friends of Lurie include parents and other individuals dedicated to helping the Lurie Center achieve its mission to provide coordinated and comprehensive care across the lifespan.

In providing adult-transition support, both Julie and Ellen partner with our clinicians who care for adolescent and adults with autism. They both serve as liaisons to connect families with services and resources both within our center and in the outside community.

They can help a family create an action plan for the child approaching adulthood. This can include both legal and financial planning and include information on their child’s legal rights to transition and adult services and public benefits. Many parents have talked to Julie about feeling overwhelmed at this crucial transition. They’re so thankful to have guidance and answers to their questions.

When appropriate, Julie also helps families plan post-secondary education, with guidance on resources that can help them find the schools and programs that best fit their child’s needs. She also guides our families through the resources and services available in adult employment, housing and social opportunities to maximize their child’s independence and quality of life in adulthood.

Guardianship planning
It can be particularly difficult for parents to plan for the day – hopefully far in the future – when their child will survive them.

We know that the process and requirements of guardianship evaluations can be confusing and overwhelming for parents. Ellen and Julie help to ease the process by providing support and informational workshops. In addition to answering family questions, they have helpful checklists and timelines, as well as the legal documentation families’ will need in court. In addition, Ellen partners with our psychologist to conduct the competency evaluations required by the Massachusetts court.

As you can see, our Family Support Team is committed to supporting patients of all ages and their families as they navigate through the life stages of support and care. We work with families to overcome obstacles and CELEBRATE SUCCESSES!   

We want to thank the Autism Speaks community for supporting our work through the Autism Speaks ATN.

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

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.