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.

Tell your story

At Family Voices Colorado, we’re always eager to hear the stories of the families we serve, both the challenges you face and the resources that help you overcome those obstacles. Below is an opportunity for mothers in particular to share their stories for publication, but whether you are a mother, a father, a grandparent, a sibling, or any other kind of caregiver, we would love to hear from you, and to see any photos or videos you are willing to share with us as well.  Email communication [at] familyvoicesco [dot] org or call 303-733-3000 x104 to learn more.

Seeking Submissions from Mothers of Children with Special Needs for Anthology

Most of what is written about mothers who are the primary caregivers of children with special needs is written by “outsiders.” The dominant view of deficit or burden is an unrealistic depiction that emerges from the medical, educational, or social service community, who serve or service children with special needs. Accepting the paradigm that mothers of special needs children are challenged and marginalized leaves little room for any other understanding that the actual lived experience of the mothers is—as it is with all human beings—a much more complex socio-cultural process than it appears. We want people to see, experience, and feel how mothers of children with special needs live with challenges that are, yes, lived painfully and differently than what most people outside of our world understand, but also generously, fully, and joyfully.

We believe in the power of story. Story transforms. Our hope is that your stories will illustrate a realistic tableau of the lives of mothers of children with special needs.

Mothers of children with special needs, please consider submitting:

memoir essay OR
poetry OR
graphic or illustrated essay OR
narrative photo essay

Submissions must address one of the themes listed below:

Challenges: Sometimes it sucks.
Purpose: I learned my own power; I get “it.”
Providence: Why was I chosen?
Pure Joy: Their joy is my joy!
Joy?: It’s the simple things.

Guidelines

  • Multiple submissions are allowed.
  • Please do not submit work that has been previously published or that you are
  • simultaneously submitting.
  • Please submit essays 6,000 words or less and no more than 6 poems.
  • Please format your work in Times New Roman, 12-pt, double-spaced font.
  • Include your name, email address, phone number on the first page of your document.
  • All illustrations or graphics must be in black and white.
  • Work should be submitted as a .doc, .docx, or .rtf file.
  • Photos should be submitted as a .jpg, .tif, or .gif file.
  • Save your files with your last name_title.

Email submissions to lizwhiteacre@gmail.com. Submissions must be received by Monday, April 22, 2013.

You will receive a confirmation email that your submission has been received and can anticipate a response in regards to acceptance in 6-8 weeks.

Each contributing writer will receive one copy of the final and published book. There will be
no other monetary compensation. A publisher has not yet been selected, so we are unsure of a
timeline for publication.

This anthology is the vision of mothers, writers, disability advocates, professors, and editors
Darolyn “Lyn” Jones and Liz Whiteacre.

About the Editors

Lyn Jones has facilitated the Indianapolis Special Needs Mom’s Writing Group for seven years now, asking mothers to gather and write about the challenges and joys of being a mother to a child with a disability. As well, she has focused her ethnographic and narrative research at Ball State University on mothers and individuals with disabilities.

Liz Whiteacre teaches creative writing at Ball State University and has been an editor for literary magazines and the University of Indianapolis Press. She was awarded an Inglis House Poetry Award in 2010 and was nominated for a Push Cart Prize in 2011. Her poetry has appeared in Wordgathering, Disability Studies Quarterly, Disabled World, and other literary magazines. Her chapbook, Hit the Ground, is forthcoming from Finishing Line Press.

Thank you – and share your thoughts!

Tom Rose, far left, thanks Family Voices staff at Hearts on Fire 2013.
Tom Rose, far left, thanks Family Voices staff at Hearts on Fire 2013.

On behalf of the staff of Family Voices Colorado, thank you to everyone who attended, donated to, or otherwise supported Hearts on Fire this past weekend. We are still tallying the donations, but we had a wonderful time dancing the night away, and we couldn’t have done it without all of you who wear your heart on your sleeve on a daily basis.

As we look to the future, we want to be sure we are making the best use possible of the resources available to us, and so we would like your input on the kinds of events we offer and how to have the greatest impact. Whether you attended Hearts on Fire 2013 or not, would you take our survey? It should take less than 5 minutes to complete; just click on the link below.

Thank you for sharing your thoughts. At Family Voices Colorado, we deeply value the voices of families, self-advocates, health care providers and other professionals as together we work to make 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