This chartbook, now available in both online and hardcopy formats, provides national and state-level findings from the 2005-2006 National Survey of CSHCN.
The chartbook reports that 10.2 million children in the United States have special health care needs; that number represents 14 percent of all U.S. children. More than a fifth of U.S. households with children have at least one child with special needs.
The survey also found that:
The survey screened 364,841 children for special health care needs and completed 40,840 interviews with families of CSHCN, covering a minimum of 740 CSHCN under the age of 18 in each of the 50 states and the District of Columbia . Interviews were conducted with parents or guardians who know about the child's health.
The online version is available at http://mchb.hrsa.gov/cshcn05/. Hardcopies may be ordered from the HRSA Information Center. Contact the center toll-free at 1-888-ASK-HRSA or 703-442-9051; or visit the website http://ask.hrsa.gov/; or Steph Toomer may be able to help you - stoomer@hrsa.gov or 301-443-0766.
The Rhode Island Partnerships Conference, sponsored by the Rhode Island Parent Information Network (RIPIN), Family Voices Rhode Island, Rhode Island Department of Health, and Neighborhood Health Plan of Rhode Island, was held March 27, 2008 at The Marriott Hotel, in Providence, RI. Parent leaders, professionals, youth leaders and partners engaged in a day long meeting that featured keynote speaker Dr. Stanley Klein, Ph.D, Director of DisABILITIESBOOKS and editor of a number of books for parents of children with disabilities including “Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew.” Concurrent sessions focused on transitions from hospital to home; from Early Intervention to school based programs; adolescent transition; and transition into adulthood. The Closing Plenary Session included a panel discussion on ways youth with disabilities can become their own best advocates as they mature and featured members of the national group, KASA-Kids As Self Advocates.
Family Leave Legislation was passed by the New Jersey Senate on April 7, 2008! This victory for families will now allow workers, who take leave to care for an ill, newly born or adopted family member, to get income for six weeks of the leave -- two-thirds of their pay up to $524. Governor Corzine is expected to sign this bill which will become law in 2009.
Family Voices of NJ, especially Lauren Agoratus, NJ Family Voices Coordinator and Southern Regional Coordinator for SPAN's Family to Family Health Information Resource Center, has been key in sharing her own experiences and getting families who would be positively impacted by Family Leave Insurance to share their experiences with their State Senators and Assembly people. In fact, on March 3, 2008, when the NJ State Senate voted 22-16 to pass Family Leave Insurance without a small business carve-out, Lauren spent all day in Trenton sharing her personal story with legislators. Her story was covered by NJ television media. In addition, WCBS TV came to the SPAN All Staff meeting on March 3rd to interview about 6 parents about the need for this critical legislation, which provides PAID leave for up to 6 weeks for employees of any size employer in NJ to care for a family member or in the case of adoption or birth.
Congratulations to Family Voices of NJ and Lauren Agoratus!
The Jed Foundation is currently conducting research for their “Transition Year Project (TYP)”. This study is focused on young people moving from high school to college, particularly for students with mental health issues. The research will be used to create guides for both parents and students. The foundation is seeking parents whose children are college-age (17-24) and have dealt with mental health issues to participate in the “testing” of their research guide; this will be done by reviewing the guide, and offering feedback. If you are interested or know someone who might be, please contact Ms. Michele Eichorn (212-647-7544) as soon as possible.
MCHB presents
Community Action:
What YOU Can Do to Stop Bullying Now!
On April 16, 2008 from 1:300-3:00 ET, the Health Resources Services Administration’s Maternal and Child Health Bureau will sponsor a community action webcast based on the Stop Bullying Now! campaign. The webcast will feature best practices based on state and community-level experiences. Click here for more information on this and other webcasts.
Champions for Inclusive Communities (Champions InC) Presentation
Do you need a professional and convenient way to tell others about the importance of organizing services within your community so that children and youth with special health care needs (CYSHCN) can use them more easily? A new flash presentation on the ChampionsInC website has been created for just this purpose. The presentation explains the importance of community-based systems of services and illustrates the six outcomes that communities are currently working toward to achieve this goal. This presentation is an excellent resource for any community or organization that would like a way to share this information with others. A future version of the presentation will also be available in Spanish, so be on the lookout!
Catalyst Center State-at-a-Glance Chartbook
In the coming weeks, the Catalyst Center, dedicated to improving financing of care for Children and Youth with Special Health Care Needs, will release a new on-line version of their "State-at-a-glance Chartbook on Coverage and Financing of Care for Children and Youth with Special Health Care Needs", which was released in hard copy on January 25, 2007. The chartbook includes State-at-a-Glance Coverage and Financing Charts and State Innovations: Strategies to Expand Coverage and Care. Be sure to watch the Catalyst Center website for the latest on this helpful on-line tool.
National Minority Health Month: A Healthy Baby Begins with You
The Office of Minority Health (OMH), of the Department of Health and Human Services, has launched A Healthy Baby Begins with You - a national campaign to raise awareness about infant mortality with an emphasis on the African American community - as one of their efforts to end health disparities among racial and ethnic minorities. They have chosen this theme for its work during National Minority Health Month in April.
The national infant mortality rate is defined as deaths per 1,000 live births among infants up to the age of one year. Among African American babies, the rate is 13 per 1,000 live births, which is more than twice the rate for the U.S. population as a whole.
Events throughout the year across the country have been scheduled to help communities learn about health disparities and how to prevent infant deaths. Check out OMH's events calendar.
OMH also provides technical assistance and capacity building activities to health care agencies and programs. They have a multitude of resources available on their site on such topics as Communications Assistance; Community Outreach; Cultural Competency; Organizational Infrastructure and Programmatic Design. Check these out at OMH's Capacity Building Division.
National Child Abuse Prevention Month
The Child Welfare Information Gateway, a program of the Children's Bureau, Administration on Children, Youth and Families (ACYF) has focused on raising awareness about child abuse and neglect by designating April as National Child Abuse Prevention Month.
Several resources are available on their site, including a Resource Packet targeted specifically for service providers who work with parents, other caregivers, and their children with the common goal of promoting healthy families. The packet contains resources to promote community awareness of five important protective factors that can help families protect children from the risk of child abuse and neglect, including tip sheets for parents in English and Spanish. These resources were developed with input from numerous national organizations, Federal partners, and parents committed to promoting healthy families.
National Autism Awareness Month
Autism affects every 1 out of 150 children in the U.S. and the current annual cost to U.S. is $35 billion. April has been designated National Autism Awareness Month to focus national attention on research and services. Visit the Autism Society of America to learn more.
Medical Assistance Grants
The United Healthcare Children's Foundation is offering support to meet the needs of children across the United States with assistance grants for medical services not fully covered by health insurance. Parents and caretakers across the country will be eligible to apply for grants of up to $5,000 for healthcare services that will help improve their children's health and quality of life. Examples of the types of medical services covered by UHCCF grants include speech therapy, physical therapy, and psychotherapy sessions; medical equipment such as wheelchairs, braces, hearing aids, and eyeglasses; and orthodontia and dental treatments.
Any child 16 years old or younger living in any UnitedHealthcare region of the United States (all 50 states) and in need of financial assistance for healthcare services will be considered eligible for a grant. Families must meet economic guidelines, reside in the US, and be covered by a commercial health insurance plan.
Visit United Healthcare’s website to learn more about these grants.
Chartbook on Racial and Ethnic Disparities
The Commonwealth Fund has compiled a 113-page chartbook, Racial and Ethnic Disparities in U.S. Health Care demonstrating emerging evidence linking many disparities to the overall performance of local health care systems. This resource is organized into the following sections and can be used to understand more about racial and ethnic disparities:
