Family Voices Colorado believes that parents of children with special health care needs should not be alone when they face the scary and confusing task of securing care for their children. Every day we give parents the information and strength they need to navigate complex health care systems in order to get things like wheelchairs, oxygen, or surgery for their children. With our help, parents are able to be the heroes their children are counting on.
Juanita Dominguez is a Spanish-speaking mom to three daughters, ranging in age from 3 to 17. Erika, her middle child, has spina bifida with secondary hydrocephalus. The main expression of this condition for Erika is that she cannot feel her legs and cannot walk, so she uses a wheelchair to get around.
At age 9, Erika is beginning to get a bit heavy for her mother to pick up on a regular basis, which meant that getting in and out of their family van was becoming increasingly difficult. Without a wheelchair ramp, Juanita had to lift Erika from her chair into the van, and back out again, any time they wanted to go somewhere. So they began asking the health care providers and others in the community how they might be able to get a ramp installed, allowing Erika to roll right up and into the van in her chair.
The first referral to a foundation that considers funding requests like this resulted in a dead end: to qualify, applicants need a driver’s license and a social security card, which was not possible for the Dominguez family. Fortunately, a staff member in the Special Care Clinic at Children’s Hospital Colorado referred Juanita to Family Voices Colorado, and the family got connected with Ileana Perez, one of our bilingual Family Navigators.
Ileana was able to direct the Dominguez family to Variety Colorado, a children’s charity that seeks “to provide life-saving and life-enriching assistance to children challenged by physical and mental disabilities, poverty, abuse and neglect.” Ileana helped Juanita apply for the funding of a wheelchair ramp for their van, and within a relatively short period of time, Variety Colorado approved the application, granting the family $1900 in total, plus a $200 gift card.
Juanita shared that her experience with Ileana and Family Voices was “Very fast, very friendly. There were no obstacles in getting the help we needed. I am so grateful.”
While grants fund much of Family Voices Colorado’s work, we increasingly rely on individual donations to help us fulfill our mission to increase access to and quality of health care for children and youth with special health care needs. Please consider supporting Family Voices on Colorado Gives Day, Tuesday, December 10, to help us continue making Colorado a better place for all families!
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.
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.)
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!
Family Voices Colorado
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!
Making Colorado a better place for children and youth with special health care needs