Early this Fall, the President vetoed a bill to reauthorize the SCHIP program. Many states are now running short on SCHIP funding because new funding has not been authorized by Congress.
Currently, the program is being funded at last year's funding levels. Due to inflation and the rising costs of health care, this always means substantially less money available to continue funding the program at current levels. This usually results in significant cut backs within the program.
The funding that is continuing the program is currently authorized by Congress under a "continuing resolution" which expires on December 14th. Currently, Democrat leaders are considering a one or two-year approach to continuing the program. However, there are concerns among advocates and leaders that this new approach to securing funding for SCHIP will actually be just as difficult as the reauthorization process.
In addition, the Democrats are hoping to include other things in this new extenstion version of SCHIP. Democrats and Republicans fought considerably over providing SCHIP benefits to families over 200- 250% of the Federal Poverty Line (FPL) during the reauthorization process.
Family Voices continues to participate in this debate. Families of children and youth with special health care needs making more than 250% of FPL often need the benefits in SCHIP because otherwise their out-of-pocket expenses are extremely high.
In other related news, Wisconsin recently requested a waiver to include children up to 300% of FPL in SCHIP, but they were denied that request. However, Wisconsin did receive approval to include children up to 250% of FPL. An additional 7,600 children will become eligible through this new waiver.
Please continue to watch FV-Talk for further information or contact Julie Beckett (waivermom@earthlink.net; 319-365-0227) or Janis Connallon (jlambconn@comcast.net; 510-232-7765).
Family Voices wishes you
Happy Holidays
and a safe and healthy New Year!
After seven years at SD Parent Connection, home to SD Family Voices, P2P, and Family to Family Health Information and Education Center, Family Voices Network member Dina Castro is moving with her family to Colorado. We are sorry to see them leave, but know that Colorado families will welcome them! Dina writes, “You are all a ‘WEALTH OF
KNOWLEDGE’ and I feel very blessed to have been able to grow and learn from
this awesome group of people.” We’ve learned from you, Dina!
Exciting activities and events are taking place in Family Voices Region 8 (North Dakota, South Dakota, Montana, Wyoming, Utah and Colorado)!
In North Dakota, Family Voices of North Dakota and the North Dakota Family-to-Family Health Information and Education Center (F2FHIC) has begun to offer topical calls for families of CYSHCN: December- 2007 Stress; January- 2008 IDEA; and February- 2008 Children’s Special Health. Watch the Family Voices of North Dakota website for more information about these calls. To learn more about the ND F2FHIC, be sure to check out their information-packed Fall 2007 newsletter.
South Dakota families, be prepared! The legislative session starts in January 2008, and advocates will once again be seeking FOA legislation in SD to support creation of a Medicaid buy-in system in the state. Parent leaders will be working to educate both families and policy makers on the critical need for this important legislation. Also, SD Parent Connection, Home to Family Voices of South Dakota and the SD Family-to-Family Health Care Information and Education Center, is working to secure funding to print 15,000 copies of their Health Care Resource Guides to be distributed statewide.
In Utah, the Utah Family Voices (UT FV) Family Health Information and Support Center has developed a series of 15 Special Health Matters fact sheets on topics ranging from Disability and Air Travel to EPSDT, and from Alternative Therapies to Caring for the Caregiver. For more information, send an e-mail to utahfamilyvoices@juno.com. The UT FV Health Information and Support Center, in partnership with the Utah Parent Center, has developed a newsletter, Health-E Connections, that is loaded with information for families of CYSHCN in Utah. Visit their website to check it out the latest.
Family Voices Colorado is pleased to introduce a new provider resource hotline as a component of the work with the Colorado Medical Home Initiative and the Colorado Children's Healthcare Access Program. As a way to reduce one of the barriers to care in CO, namely access to providers, Dr. Steve Poole, Head of Community Pediatrics at Children’s Hospital, has recruited health care providers in 30 private practices who will provide care to children on publicly funded health care—Medicaid and CHP+. The hotline has been designed to assist providers in offering support to families of children with chronic or special health care needs by providing information, identifying resources and providers of specialized services, and in answering questions such as, “Who provides respite?” or “Are there any other resources a family needs to know about related to children with special health care needs?” The hotline allows providers to rely on the expertise of others who are more familiar with the often confusing and hard-to-navigate resources relating to CYSHCN and public health payer systems. An added benefit of a statewide hotline will be the ability to identify and track needs across the state that may be incorporated into advocacy efforts. Funding for the provider hotline comes from several grants and donations and is supported in part by EPSDT Medicaid.
The National Youth Leadership Network (NYLN) is looking for new leaders! And they want youth to apply to serve on their Governing Board! NYLN is a non-profit organization run by young people with disabilities. They empower all young people to reach their maximum potential. Applicants to the Governing Board must: be between 15 and 28 years old; have a disability; and have leadership and advocacy skills.
“We are excited to open the door to new leaders,” said Betsy Valnes, NYLN executive director. “Young people have a lot to offer. We look forward to setting goals that make them fully empowered.”
The Governing Board Application can also be found at www.nyln.org. Send completed applications to:
National Youth Leadership Network
Attn: Betsy Valnes
221 S. Central Ave.
Pierre, SD 57501
For more information, call 1-866-480-6565 or e-mail bvalnes@tie.net.
Looking for a way to celebrate a special person? During this holiday season, please consider asking friends and family to make donations to Family Voices. Or make them yourself on behalf of another! Visit our website, to learn more about how financial gifts are used. If you'd like to make a donation by credit card, you may call us toll-free at 1-888-835-5669. Donations may also be sent directly to:
Family Voices, Inc.
2340 Alamo SE, Suite 102
Albuquerque, NM 87106
As a special thank you to a friend or caregiver, why not give them a Family Voices mug filled with homemade candy, cookies or flowers? You can find this and lots of additional Family Voices merchandise at the Family Voices Store at Cafe Press.
Making holiday gift purchases through Amazon.com? Just click on the Amazon link on the Family Voices home page. By linking to Amazon.com from Family Voices, a portion of the sales is given back to Family Voices.
This fall the Beach Center on Disability at the University of Kansas launched an innovative, online communication tool called a “Community of Practice (CoP)” so that families of children with cognitive disabilities, the professionals who serve them, researchers and policy makers could learn from each other. Since it was launched, more than 100 family members, practitioners and researchers have connected via the CoP to discuss Early Childhood Family Supports.
A computer is the only item needed to join this community of learners. The CoP differs from ordinary blogs, discussion boards, or e-mails in that members of the community can join in the conversation as it is taking place, or read, reflect and comment later. A facilitator monitors and weaves together multiple conversations to keep participants engaged. Photos, documents and web links can be posted. Membership is free, and members have access to additional features such as meeting space to use for ongoing discussions; an online library; and space to share comments and ideas. To access the Community of Practice, go to the Beach Center websiteand click on Communities of Practice. Then select the Early Childhood Support link.
Adapted from “Beach Center Collects Family Wisdom on Newly Designed Website”, inSight, Fall 2007, Volume 1, Issue 3.
An intriguing new question was recently posted on the Champions InC discussion forum based on results from the 2005/2006 National Survey for CSHCN. A Champions staff member is concerned about the extent to which families of CYSHCN in Utah have unmet healthcare and family support needs. You may have relevant information for her or questions of your own related to the survey results. If so, the discussion forum presents the perfect opportunity for you to share your ideas – and to receive valuable advice and input at the same time!
Read this most recent post concerning families getting the services they need.
Data Bytes: Data You Can Use -
NEWLY RELEASED 2005/06 National Survey of Children with Special Health Care Needs
On November 28, 2007, the National Center for Health Statistics (SLAITS) released microdata from the 2005-2006 National Survey of Children with Special Health Care Needs (CSHCN), which may be found at www.childhealthdata.org. The Child and Adolescent Health Measurement Initiative (CAHMI) has updated "point and click" online access to national- and state-level findings from the newly released survey. Visit the CAHMI Data Resource Center (DRC) website to quickly and interactively compare the new 2005/06 NS-CSHCN data. The NS-CSHCN is a national survey sponsored by and designed by the federal Maternal and Child Health Bureau and administered by the National Center for Health Statistics. The survey was conducted for the first time in 2000/01 and repeated again in 2005/06.
The survey data can be used to develop updated estimates of the prevalence of special health care needs among children, both nationally and within each state. This survey also explores the extent to which children with special health care needs have medical homes, adequate health insurance, and access to needed services. Other topics include functional difficulties, care coordination, satisfaction with care, and transition services. Data inform policymakers, advocates, and researchers dedicated to advancing the health of children who require health services for any type of ongoing health condition. Check out the data for your state and compare it to the data from the 2001 survey!
Updated State Snapshots are available on MCHB’s Title V Information System (TVIS)
Updated State Snapshots have been posted online and can be accessed at MCHB’s Title V Information System (TVIS) Web Reports. Each State Snapshot contains an overview of the Maternal and Child Health (MCH) program for each of the 59 states and jurisdictions that receive funding from the Title V Maternal and Child Health Services Block Grant. The information is based on the data the State submitted in TVIS for the fiscal year 2006 annual report as well as other data sources such as the U.S. Census and CDC. Each snapshot presents basic information about the state, such as the MCH program description, population, number of live births, Maternal and Child Health Bureau (MCHB) partnership funding, hotline data, and contact information for the MCH and Children with Special Health Care Needs Directors. Additionally, breakdowns of the expenditures by population served, source of funds, and category of service are shown as graphics. The 2006 results and 2011 goals for the national outcome and performance measures, as well as the State performance measures, are displayed. A list of MCHB discretionary grants awarded to both public and private organizations in the state is included, showing the extent of MCHB funding in helping to address the health issues of maternal and child health populations.
Should you have questions on the TVIS Web Reports or their content, contact Christopher Dykton (dyktonc@saic.com) or EJ Tom (tome@saic.com).
Emergency Preparedness Materials
State programs and organizations and federal agencies continue to develop information and public service announcements (PSAs) that address ways to help persons with disabilities prepare for emergencies. As winter weather blankets many parts of our nation, it is important that families of children and youth with special health care needs are prepared in the event of severe weather.
Ready Campaign Public Service Advertisements
In order to encourage Americans to prepare themselves, their families and their communities, the U.S. Department of Homeland Security, in partnership with The Advertising Council, has sponsored PSAs that educate and empower Americans to prepare for and respond to all kinds of emergencies. Click here to view their instructional videos. One of the PSAs was written for persons with disabilities.
Video to Help Persons with Disabilities Prepare for Disaster
People with disabilities and special needs may need to make specific preparations for emergencies. This new, five-minute Homeland Security video provides helpful information on how to do so in three easy steps—(1) Get an Emergency Supply Kit; (2) Make a family emergency plan; and (3) Be informed about different types of emergencies. Viewers may download a list of items for an emergency supply kit should contain, including special supplies needed for one’s health and safety.
CDC Podcast on Family History now available
The Centers for Disease Control and Prevention (CDC) announced a podcast on the use of family history in pediatric settings is now available at: “Family History—An Early Warning for Your Child” features Dr. Paula Yoon and Dr. Tracy Trotter, and is intended for the general public. Let others in your community know about it.
Safety Awareness/Sexuality Curriculum
Several years ago Waisman Center's Healthy and Ready to Work Project developed the Safety Awareness for Empowerment (SAFE) curriculum to help youth and adults with developmental
disabilities build community/personal safety skills. The eight modules include topics such as: staying home alone; basic first aid; friendships and how to assess when they might be becoming unsafe; romantic relationships; sexuality; personal safety; and avoiding scams and other ways of being victimized.
This curriculum, which was extensively reviewed by sexuality experts, is now
available FOR THE COST OF SHIPPING ONLY! That's $10 per copy. It includes more
than 30 8x12 glossy photos to share with students and many, many experiential
activities, and role plays. It comes in a 4-inch binder with accompanying DVD.
To order, click here. Be aware that there is an error on the order form, and that the actual price is $10.
