Category Archives: Data

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!

Increasing Medical Home Access

For nearly four years, Family Voices Colorado has served as a subcontractor with the Colorado  Department of Health Care Policy and Financing to assess and support a wide range of health care practices in becoming certified as medical homes.

A medical home is not a residential facility; it’s not even a building. Rather, it is an approach to health care that is comprehensive, coordinated, family- and patient-centered, accessible, and committed to quality and safety. (Learn more at the Colorado Medical Home Initiative.)

Sounds ideal, right? Like what you’d look for in a primary care office, regardless of your age or level of health care needs? And while every provider seeks to do their best in providing the kind of care that patients and families deserve, the medical home certification process helps by identifying specific benchmarks and practices that improve the quality of care and the patient experience, assessing both staff and family perspectives on how well those benchmarks are currently implemented, and then supporting the clinic or office or hospital department in taking steps to improve in areas that are assessed less positively.

Since 2009, Family Voices Colorado has helped certify more than 2,000 practices, from private family and pediatric practices to school-based clinics, federally qualified health centers, mental health providers, and more. In the course of that work, our staff have met tens of thousands families and thousands of providers; conducted and analyzed close to 32,000 family surveys and 20,000 staff surveys; and traveled more than 30,000 miles across the state!

Now that our contract has ended, we are moving into different approaches to our ongoing work of increasing access to and quality of health care for all children, especially those with special health care needs. Without wanting to be too mysterious, we’re not quite at liberty to describe the details of these new programs yet, but keep an eye out for some announcements in the next month or two!

Susana Herrera and Suzette Elledge, two of Family Voices Colorado's Medical Home certification staff
Susana Herrera and Suzette Elledge, two of Family Voices Colorado’s Medical Home certification staff

Tremendous thanks go to Suzette Elledge, our Medical Home Project Coordinator; Susana Herrera, Medical Home Navigator; Colleen Roahrig, Western Slope Coordinator; and other staff who have supported the program over the years. Together, they have helped make sure that more children across the state – both those with special health care needs and those with typical needs – have access to a medical home, which leads to both cost savings and improved health outcomes. Thank you for your commitment to this important work!

Counting what counts

Stories vs. Numbers

In our work to improve access to and quality of health care for children and youth with special health care needs and their families, we spend a lot of time telling stories: the stories of obstacles and challenges that real families face as they try to navigate the often confusing systems that are supposed to provide the services they need, from public and private health insurance to social security, disability services, and education, as well as their triumphs and joys.

Stories are powerful: they can paint a picture, convey struggle and emotion, and invite participation. But once we have a listener’s attention – whether a legislator, reporter, grantmaker, donor, or professional partner – with what would rightly be termed “anecdotal evidence,” we also have to know what the data says. In spite of the pithy statement attributed to Albert Einstein that “Not everything that can be counted counts, and not everything that counts can be counted,” in this era of empirical verification and accountability, numbers are essential. AND we have to make sure that we pay attention to the measures that really matter when it comes to families’ experiences.

Within the last week or so, three new reports have been released that offer new data – and some stories – relating to (1) children’s overall health and wellbeing in our state, (2) consumer perspectives on how the Healthy People 2020 goals relate to children and youth with special health care needs, and (3) the number of families of children with special needs and Family Voices’ impact as the federally funded Family-to-Family Health Information Center for Colorado.

Links to view the reports themselves:

Some significant findings

KIDS COUNT 2013:

Economic Security

  • In 2011, children were the age group most likely to be living in poverty in Colorado. Colorado children were 1.4 times as likely to live in poverty as adults between the ages of 18 to 64 and 2.6 times more likely to live in poverty than Colorado seniors.
  • More than one in six Colorado kids lives in poverty (approximately 217,000 children), according to the most recent estimates.
  • The number of children living in extreme poverty (family of four with income below $11,500) has increased 160% since 2000; the number of children living in families above 200% FPL has decreased from 68% to 60%.

Health – starts p. 26 of the .pdf

  • Throughout most of the 2000s, Colorado’s rate of uninsured children was consistently above the national average. Between 2005 and 2010, however, the number of uninsured children in Colorado declined by 31%, according to the Current Population Survey. In 2010, only 9% of Colorado kids (approximately 113,000 children) under 18 were uninsured. With positive momentum behind us, the finish line to covering all Colorado kids is within reach.
  • While Colorado has made great strides in getting more children covered, children in poverty and in low-income families remain much more likely to be uninsured than their peers in economically stable families. Colorado has historically ranked poorly when it comes to insuring children in poverty, but we have seen steady improvement during recent years. In 2010, Colorado ranked 42nd in the nation, with 19% of all children in poverty uninsured (approximately 43,000 kids). Among children in low-income families (between 100 and 200% of the federal poverty level), 18% were uninsured in Colorado in 2010.
  • Medicaid and the Child Health Plan Plus (CHP+) are important factors in the race to the finish line of covering all Colorado kids. As public health insurance programs administered by the Colorado Department of Health Care Policy and Financing and funded jointly by the federal and state government, Medicaid and CHP+ help kids get the preventive care they need to stay healthy and ensure they can see a doctor when they are sick or injured. Medicaid covers children in families with incomes up to 133% of the federal poverty level (approximately $30,600 for a family of four in 2012), and CHP+ covers children in families with incomes that are too high to qualify for Medicaid but are below 250% of the federal poverty level (about $57,600 for a family of four in 2012).
  • During times when our economy struggles, enrollment in Medicaid and CHP+ typically grows as unemployment rises and many parents lose their income and benefits. The latest recession was no different. In FY 2011-12, 30 percent of all Colorado kids ages birth to 18 (about 393,000 children) were enrolled in Medicaid at some point during the year, a 28% increase since FY 2007-08.
  • During the same time period, enrollment in CHP+ grew by 64%, with 10% of all Colorado kids ages birth to 18 enrolled in FY 2011-12 (approximately 133,000 children). In addition to the effects of the recession, eligibility for CHP+ was expanded as a result of House Bill 09-1293, the Hospital Provider Fee bill. Many policies were put in place to improve administration and remove barriers to enrollment, which also contributed to the large increase in enrollment.

Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective

The Genetic Alliance has a helpful overview of the background and goals of this report

The Basics: Who are CYSHCN?

Children and youth with special healthcare needs are defined as “those who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

How many are there?

  • Approximately 10.2 million children in the U.S. – 15 percent of all people under the age of 18 – have special healthcare needs.
  • More than a fifth of U.S. households with children have at least one child with special needs.

What are the Core National Performance Measures for CYSHCN?

  1. Families of children with special healthcare needs partner in decision-making at all levels.
  2. Children with special healthcare needs receive coordinated, comprehensive care through a medical home. (A medical home is not a location; it is an approach to care centered on partnership between family and providers of all services.)
  3. Families of children with special healthcare needs have adequate health insurance and financing to pay for needed services.
  4. Children receive early and continuous screening for special healthcare needs.
  5. Community-based services are organized for easy use by families.
  6. Youth with special healthcare needs receive the services necessary to transition to adult healthcare, work, and independence.

Family Voices Colorado Data Brief 03-20-2013

  • In Colorado, there are approximately 167,524 children and youth with special health care needs age 0-17.
  • Family Voices Colorado reached approximately 10,400 of these families, and nearly 3,600 professionals from June 2011 to May 2012.
  • Among families of CYSHCN who have insurance, 44.8% report that their current insurance is inadequate.
  • 29.2% of families report that their child’s condition causes financial problems for the family (46.1% of families without adequate insurance).
  • 25.9% of families report that their child’s condition has led to family members cutting back or stopping work to care for their child (37.5% of families without adequate insurance).

Among families served by Family Voices Colorado who completed a follow-up survey,

  • 98.5% report being better able to partner in health care decision-making as a result of that assistance;
  • 98.6% report being better able to find and/or learn about community services; and
  • 95.5% report more confidence in getting health care and services needed by their child.

Your story matters

In short, the need is tremendous, and we are doing all that we can to make sure that families of young people with special needs are not alone as they face the challenges of securing the health care and related services that their children need. If your life includes a child with special health care needs, please feel free to call us for help navigating these systems and services: 303-733-3000 or 800-881-8272.

And if you have been helped by some part of our work at Family Voices Colorado, we invite you to consider sharing your story or giving back in whatever way you are able.