Bridging Hospital and Community: Family Navigator program expands

Sam Murillo, Director of Navigation Programs
Sam Murillo, Director of Navigation Programs

Four years ago, Family Voices Colorado received funding from the Department of Health Care Policy and Financing to start a pilot program at Children’s Hospital Colorado, in which a Family Voices staff member would be based at the hospital three days a week to help families navigate systems and connect with community resources. Sam Murillo was that Family Navigator for the first three years, laying the groundwork, helping hospital staff understand the unique gifts of the role, and working through challenges common to any pilot project.

Sam explains what makes family navigation unique:

Navigation is a unique service delivery model that serves as a natural bridge from the health care setting to the community. It extends traditional care coordination, case management and social work roles by providing training and education on the various medical and non-medical systems to families and hospital staff. Navigation also provides direct advocacy as appropriate and needed in resolving systemic barriers. Together, all of these methods create an approach that honors the principles of true family-centered care.”

As the hospital navigation program celebrates its four-year milestone this August, Sam finds himself in a new role, as Director of Navigation Programs. The pilot project was very successful, with the navigation program recognized as an effective service delivery model and highly valued as part of the Neurology and Child Health Clinic teams. Dr. Carolyn Green, a physician in the Neurology Clinic, explained in a 2012 survey of hospital staff regarding the program,

“Having Sam in the role of Navigator not only eases the mental burden for the families but improves my ability to provide excellent medical care. Often I am sure a family would benefit not only in a social or financial way but also in a medical way by having access to community based resources, like the epilepsy foundation, which provide disease and treatment information.  Although intentions are good to share that information, it is not feasible to cover all resource information during a visit. Often families need to process what they have been told at a visit before they are able to use some information and having a facilitator outside the visit time but inside the system is tremendous.”

And the project’s success is far more than anecdotal: in the four years since the Family Navigator program’s inception, the Neurology clinic reported a 32% decrease in emergency department utilization. In that same time period, the Family Navigator completed over 4,000 encounters with patients and families, on average seeing or talking with each patient/family about 20 times to connect them with the resources they need, to help them navigate systems and services, and to troubleshoot barriers and obstacles they encounter.

Thanks to Sam’s hard work and these highly promising results, the Family Navigator program has recently entered into a direct contract with Children’s Hospital Colorado, where a new Family Navigator, Colette Christen (who previously worked as the Resource & Systems Navigation Specialist, staffing our Provider Helpline), is now full-time in the Neurology Clinic, and Susana Herrera has moved into the role of Family Navigator for the Child Health Clinic. In addition, a separate grant has allowed the program to expand to Denver Health’s Special Needs Clinic.

Looking to the future, Sam has a vision of the growing, mutually beneficial relationship between Family Voices Colorado and health care providers serving families of young people with special health care needs:

“The navigation model not only amplifies the presence and awareness of Family Voices, but also increases the ability of specialty and primary care settings to meet the complex systemic needs of families. While FVC remains available to [hospitals] as a whole, many clinics have shown interest in creating a designated Family Navigator role as well. As we grow and build momentum, we are committed to an intentional planning process that will develop further infrastructure, standardization across environments, and best practice policies and procedures.”

Just one more way that Family Voices is making Colorado a better place for children and youth with special health care needs!

Staff Spotlight: Suzette Elledge

Suzette Elledge is the Program Manager for Health Coverage, formerly responsible for coordinating the Medical Home Certification program, now moving into a role overseeing Family Voices’ involvement with the new health insurance marketplace, Connect for Health Colorado. Although her employment with Family Voices Colorado (FVC) began in 2009, she first got involved with us some 12 years ago, when her two sons, Jacob and Joshua, were diagnosed with autism.

Suzette with her two sons
Suzette with her two sons

Suzette explains, “Their diagnosis came only months apart and Joshua was receiving Early Intervention and Jacob was receiving services through a preschool program. My service coordinator shared resources with me and I called Family Voices to get help understanding everything that was happening and how to stay on track with their services.”

But prior to that diagnosis, Suzette had already accrued 17 years’ experience working in disability and family support service systems. She began working with families of children with special health care needs at the ARC of Sacramento (California) in 1984; studied Occupational Therapy and Psychology at San Jose State University; worked with Family Support Services of the Bay area in Family Preservation, Respite and Family Services; and taught at the Morgan Center in California.

After receiving her sons’ diagnosis, she says, she “decided not to continue to work in direct services since I was encompassed with them at home, but wanted to continue to serve families, so I worked as an Early Intervention Service Coordinator at Developmental Pathways.” She was working for CHP+ outreach and enrollment in 2007 when FVC approached her about joining the Board, and two years later, when a position opened up in the Family Support 360 program, she jumped at the chance to join the staff.

Susana Herrera and Suzette Elledge at Hearts on Fire 2012
Susana Herrera and Suzette Elledge at Hearts on Fire 2012

Those who know her well have experienced Suzette’s bubbly personality, her love of Tinkerbell and glitter; and her unabashed enthusiasm for her work:

“The absolute best part of my work is the people. From those I work with to those who I get a chance to collaborate with in the community, and especially the families. I have worked with probably thousands of families over the past almost 30 years and I continue to be inspired and humbled by the dedication and strength that I witness. When a family receives a diagnosis, whatever it is, it seems that something incredible happens: a strength, devotion and resilience that drives a determination that is both powerful and tender. I learn lessons every day from the experiences that I share with families.”

This summer, Suzette is working with Ileana Perez to prepare for FVC’s new role as an Assistance Site in Colorado’s Connect for Health Assistance Network. Suzette sees this work as aligned with the organization’s orientation toward staying on the forefront of new developments in the health care landscape so as to better assist consumers, especially families of children with special health care needs, who are often more frequent and more intensive users of systems than those with typical children and adults.

The work itself involves providing in-person assistance to customers of the new health insurance marketplace starting in October 2013. As part of the Connect for Health Assistance Network, Family Voices will serve clients across the state, helping individuals and families consider health plan options, apply for insurance affordability programs, and sign up for health coverage. Although anyone can call any assistance site, the focus for FVC’s outreach and support will be families of children with special health care needs.

Suzette is currently working on a degree in nursing from Colorado Christian University, and looks forward to serving families and individuals in a new way once her program is complete. In the meantime, she is a strong advocate not only for the families she serves, but for the organization as well:

“The most exciting thing Family Voices has to offer families is a team of people with an incredible amount of knowledge and understanding of the world of disability and what it takes to negotiate that successfully. We also work diligently at building and maintaining strong community partnerships so that we can have beneficial relationships with other entities and the work for families can be strengthened. The team understands the intricate rules and languages of systems and works with families to strengthen their knowledge and confidence. Families can know that they are not alone on this journey and I’m exceptionally proud to be a part of an organization that can say that.”

 

Next article from July 2013 newsletter: Bridging Hospital and Community: Family Navigator program expands.

Guide to Transition: New tool available

"Guide to Transition" tool is a paper wheel that displays transition goals and tasks by age and life domain
Our new Guide to Transition.

In recent years, the transition from pediatric to adult health care providers and systems has become a pressing issue for families of young people with special health care needs. Finding adult health care providers who are experienced and willing to accept emerging youth with complex needs can be difficult, and young adults are often unprepared to manage their health care and exercise increased independence. Advance preparation and intentional partnering with your health care providers can assist in a successful pediatric to adult health care transition.

Since 2011, with the support of The Colorado Health Foundation, Family Voices Colorado has been working on a pilot project to develop consistent tools and processes that support youth and young adults with special health care needs in the transition from pediatric to adult care. Our first tool is a Guide to Transition, now available in print as a wheel that turns to display the tasks for each age level in five different domains: Life Skills for Emerging Adults, Family Involvement, School, Career Planning, and Health/Health Coverage. You can also view the content of this tool by age or by life domain here on our website.

Request your hard copy of the Guide to Transition now! Just $5 per wheel (plus shipping), and bulk discounts are available for schools, health care providers, and partner agencies who want to distribute them to families who will find them helpful. So you can take a look at this great new tool, the first copy is free to established clients and partners when picked up from our office. You can see all the information in the guide through links at our Transitions page.

Learn more about Navigating Health Care Transitions, request information on the Guide to Transition, or contact Susan Hogarth, Family Navigator, at 303-577-0331 (direct) or 800-881-8272 x115, or email susanh (at) familyvoicesco.org.

Making Colorado a better place for children and youth with special health care needs