Tag Archives: youth

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.

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.

Resources for Health Care Providers

HIPAA Privacy Rule Does Not Prohibit Disclosure of Threats to Safety

Last month, the Department of Health & Human Services issued a letter to health care providers to ensure that they are aware of their ability under the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule to take action, consistent with their ethical standards or other legal obligations, to disclose necessary information about a patient to law enforcement, family members of the patient, or other persons, when they believe the patient presents a serious danger to himself or other people.

Webinar: How to Engage Youth in Their Health Care

The National Center for Medical Home Implementation and Got Transition, the National Health Care Transition Center, invite you to join them for a webinar, “How to Engage Youth in Their Health Care” on Wednesday, February 27th.

Note that this is the first of a four part webinar series hosted by The American Academy of Pediatrics (AAP) and its National Center for Medical Home Implementation. Learn more about  “The Medical Home in Pediatrics: The HOW TO Webinar Series.”

What are your needs as a provider?

If you are a health care provider who works with children and youth with disabilities or special health care needs, what kind of resources would be most helpful to you?  Call 303-733-3000 or email communication [at] familyvoicesco [dot] org to share your perspective.