Tag Archives: tools

Our impact in 2013

Looking back over the past year, Family Voices Colorado has a lot to be proud of:

The Dominguez family are among thousands helped in 2013
The Dominguez family are among thousands helped in 2013

We served more than 11,500 families and 4,500 professionals from June 2012 to May 2013, through a combination of direct assistance, trainings, print and electronic resources, and our Family-to-Family Health Information Network.

As a result of assistance/training provided by Family Voices Colorado, 91% of families report being better able to partner with health care providers in decision-making, 97% report that they are better able to find and/or learn about community services, and 94% report more confidence in getting necessary health care and services for their child with special needs.

Our team works hard to support families through the challenging tasks of securing services and resources for their children, and we celebrate when evaluations demonstrate that we are achieving our goals. You can read more about the context for our work in this Colorado Data Brief prepared by Family Voices National.

ConnectforHealthLogo-centered2In the last year, we have also launched two new program areas: Life Coaching through Your Life. Better. 24/7., and Health Coverage guidance through the Connect for Health Colorado Assistance Network. Through these programs, we are supporting young adults with behavioral health challenges in developing skills and making choices that will enable them to thrive, and helping individuals and families understand their options under the new health insurance marketplace.

"Guide to Transition" tool is a paper wheel that displays transition goals and tasks by age and life domainWhile our mission continues to focus on children and youth with special health care needs, we have identified a need for greater support to families and young people through the first part of adulthood. The transition from pediatric to adult health care systems can be challenging for any family, and those who live with disabilities or complex medical needs often encounter even greater obstacles to securing the services and support they need. Our Guide for Transition (also known as the “Transition Wheel”) was released to guide families through the tasks for each stage of adolescence approaching adulthood, and is now available in several other states through the national Family Voices network.

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

Finally, we expanded the hospital-based Family Navigator program from one staff person at Children’s Hospital Colorado to three staff, two of whom are at Children’s and one at Denver Health. We envision continued growth in this area as we demonstrate the tremendous benefits to children and families when they can receive referrals to community-based resources and services before leaving the hospital.

As we look forward to the months ahead, 2014 looks just as promising as 2013. For the past several months, we have been developing plans for a new project that will provide Personal (electronic) Health Records (PHRs) to support greater care coordination for low-income clients. These PHRs will be owned by the individual rather than by their health care provider. The planning stage has been funded by a grant from The Colorado Health Foundation, and we will soon apply for funds to support the full implementation of this vision.

Other areas of focus in the coming year include:

  • Expanding our capacity to assist families, who are calling in ever increasing numbers
  • Continuing to make sure that families’ voices are heard in policy conversations
  • Helping families navigate Medicaid expansion and the Affordable Care Act

Dancers in front of flaming heartAs we gear up for another exciting year, we hope you will join us for Hearts on Fire, which in 2014 will be a special Valentine’s Day happy hour fiesta. Be sure to register now to get the best price on tickets! Whatever your romantic status that day, we hope you’ll come and “wear your heart on your sleeve” for children and youth with special health care needs.

As always, we are grateful for your continued support and partnership with Family Voices Colorado in so many ways. If you need help navigating systems, accessing services, getting health coverage, or building capacity for system change, please give us a call!

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.

The importance of advocacy: Call for stories

Family Voices National is partnering with Genetic Alliance and Parent to Parent USA (P2P) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families, or others living with the same condition. To date, we have collected over 240 resources that will help users build leadership, communications, outreach, and advocacy skills. The tools will be part of an accessible online toolkit, with advocacy resources grouped by topic area.

We would like to include a personal story that demonstrates the importance of advocacy from an individual, family member, or caregiver in each of the toolkit topic areas.

For this project, ‘advocacy’ can include any example of a time when you or your family communicated a need, shared your story, or took steps to get something you wanted or needed.

Do you have a story to share about advocating in one of the following areas?

  • Youth Leadership
  • Transition to Adulthood
  • Insurance and Financial Assistance
  • Communicating about Your Health
  • Access to Health Care
  • Accessible Communities

To have your story included in the advocacy toolkit for individuals and families, please send a 1- to 3-paragraph summary to Sharon Romelczyk, Program Manager at sromelczyk@geneticalliance.org. Please only include information you wish to be shared, including any and all names or other identifying information.

If we include your story on the toolkit, we will contact you to let you know your story has been selected. Please let us know if you have any questions about the stories, how they will be used for the toolkit, or the toolkit in general. Thanks!