Category Archives: Health Care Transitions

Looking Back, Looking Ahead: Reflections from the Executive Director

Tom Rose, Executive Director of Family Voices Colorado
Tom Rose, Executive Director

Dear Friends and Supporters,

During the past year I have often been asked how Family Voices has weathered this time of transition, and what we are doing to prepare for the upcoming changes to the health care system. In case you, too, are curious, this is what we have been up to:


Last September we moved our office to the Anschutz Medical Campus, which provides us with a state-of-the-art and accessible office in close proximity to partners like Children’s Hospital Colorado and JFK Partners.  In addition to high quality IT services and upgraded infrastructure, the new office was designed as a call center, which has enabled Family Voices to help more families with timely information and referral services.

Family Navigation

Of course, holistic Family Navigation and Advocacy are still a primary area of focus, with experienced Family Navigators working closely with interns from the University of Denver School of Social Work to assist families. Our internship program provides a rich experience in navigation, advocacy, and call center operations for first- and second-year Master of Social Work students. The renewal of our federal Family-to-Family grant funding has also been instrumental in providing the resources to expand our capacity for information and referral as well as family navigation.

Hospital-Based Family Navigation

Family Navigation services are in high demand, and since the first of the year we have expanded our services beyond the Neurology Clinic at Children’s Hospital to also include the Child Health Clinic.  This year we also began providing navigation services in partnership with Denver Health’s Special Needs Clinic.  We believe our hospital-based Family Navigators can play a key role in ensuring family-centered care, improving quality and outcomes, and reducing health care costs. (See related article for more details.)

Transition Program

Since 2011, Family Voices Colorado has been working on a pilot project funded by The Colorado Health Foundation to develop tools and processes that support youth and young adults with special health care needs in the transition from pediatric to adult care. In that time, the issue of transition to adulthood has become a big topic of discussion at the state and federal level, and Family Voices is well positioned to provide leadership in developing person-centered transition services in a variety of domains.

Our first tool is a Transition Guide that displays the tasks for each age level in five different domains: Life Skills for Emerging Adults, Family Involvement, School, Career Planning, and Health/ Health Coverage. In addition, this program is working to expand the network of adult providers who will accept young adults with special health care needs, and has expanded our transition services to include transition clinics at both Children’s Hospital and Denver Health. We have also recently launched a behavioral health transition program called Your Life. Better. 24/7. More to come on this program in a later edition.

Policy and Advocacy

Family Voices Colorado continues to speak on behalf of children and youth with special health care needs, their families, and the professionals who work with them at the policy level. With so many changes in the systems serving our families, it is critical that Family Voices continues to work closely with its advocacy partners to make sure systems become more person- and family-centered. This past year Family Voices has played a critical role in empowering families to share their stories with legislators and state agencies, explaining how recently implemented laws and regulations are affecting their day-to-day lives.

New Grants, Contracts, Projects and Opportunities

Recently Family Voices was awarded a project/planning grant of $118,000 from The Colorado Health Foundation for a project entitled Personal Health Records and Family Navigation: A Plan to Improve Quality and Expand Agency Capacity.  Over the next nine months, Family Voices will develop a plan for a pilot project that will utilize personal health records (PHRs) to improve the quality and expand the capacity of Family Voices navigation services for children and youth with special health care needs. As part of this project we will be working closely with the Colorado Regional Health Information Organization (CORHIO) to identify technical requirements and policy issues related to the connection of PHRs to Health Information Exchanges.

This is a huge opportunity for Family Voices to shape the future of personal health records, their feasibility as a navigation tool, and most importantly their usefulness to our clients and their families. Coming so soon after our selection as an Assistance Site for Colorado’s Connect for Health Assistance Network, this positions Family Voices to contribute in two significant components of Colorado’s implementation of the Affordable Care Act.

Moving on to our work around the state, due to the exceptional work performed by our Western Slope Family Navigator Colleen Roahrig, our contract with the Mesa County Partnership for Children and Families was expanded at their request to nearly $3,500 per month.  This, in combination with Colleen’s successful launch of the Mesa County Family Leadership Training Institute, has significantly increased our impact in that part of our state. Brava, Colleen!

We are pleased with these affirmations of Family Voices Colorado’s position as a trusted community-based and family-driven organization with a powerful voice in the world of health care policy and advocacy for young people with special health care needs. We are currently engaged in an organization-wide strategic planning and business model development project to ensure that we are tackling these challenges and opportunities in the most effective way possible.

Thank you for your support of our organization. Have a terrific summer day!

Tom Rose
Executive Director
Family Voices Colorado

Next article from July 2013 newsletter: Staff Spotlight on Suzette Elledge

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)

Staff Spotlight: Susan Hogarth

Susan Hogarth and her son, Jake
Susan Hogarth and her son, Jake

Susan Hogarth, whom you may remember from our November family story, recently joined the Family Voices Colorado team as the new Pediatric to Adult Health Care Transitions Navigator. In addition to learning the ropes of the Family Voices approach to family navigation support, Susan took a lead role in planning for Hearts on Fire 2013.

Susan was first introduced to Family Voices in April 2008, through the Arc of Jefferson County’s Mobilizing Families training program. She explains, “We were struggling with insurance denials for therapy for our son, Jake, and classification of developmental delay. The staff at Family Voices helped during the appeal process, attending conference calls with insurance agents and human resources. Family Voices provided the resource of an attorney who worked pro bono, resulting in the case being overturned and re-classification of disability such that all services were covered.”

In July 2012, Susan sought the help of Family Voices once again, this time with the application for the Medicaid Buy-In for Children with Disabilities, as Jake was on the CES waiver waitlist and not receiving Medicaid. He was approved for the Buy-In, and now receives the benefits of Medicaid coverage – including several therapies and other services not previously available – for a relatively low monthly premium.

Susan’s professional background is as a consulting actuary, but her passion was to leave that 20-year career to work with a non-profit, helping families of children with special healthcare needs. That dream came true in January 2013, when Family Voices hired Susan as a Transition Navigator. She tells us,

“The combination of my professional background as an actuary in the pension and healthcare benefits arena, and my personal experience as a mother of a disabled child with special healthcare needs, served as a perfect fit.  I have battled with insurance companies, spent hours in the hospitals, doctors office, therapy visits, durable medical equipment fittings, moved to other states thinking it was ‘better somewhere else!’ (which is a misconception as Colorado is one of the most well-educated states, and providing state of the art services including a high level of knowledge for technology), spending hours with the schools and IEPs, etc., just like many of the families we serve.

“I hope to provide some comfort to families that there is hope, and I can help them navigate the systems that all parents of children with special health care needs have to face on a daily basis. Colorado is stepping up to the plate, showing their support for the disabled community through the recent news relating to legislative budgets to include additional funding for individuals with disabilities currently on waitlists.

“It is exciting to work for Family Voices during this time, watching it grow into leader of navigation support in the community.”

We are glad to have Susan on board! Stay tuned for an announcement coming very soon about a new tool for families, health care providers, and other professionals: a Transition Guide that offers resources and tasks for each stage from age 10 through mid-20s!