Lame Duck Session Helps Families of Children and Youth with Special Health Care Needs
By Janis Connallon, Family Voices staff
After mid-term elections and before the new Congress begins in January, the existing Congress usually has some
last-minute work to finish before adjourning. This is referred to as a “lame duck” Congress. Often, few
pieces of significant legislation pass during this time. However, this most recent lame duck was very significant for
families of children and youth with special health care needs!
Congress passed two very important bills:
Lifespan Respite Care Bill: This newly-passed (assuming it is signed by the President) legislation will provide $30 million in grants to states and local-level entities to improve respite care. Over the next five years, $300 million will be available for this purpose. Additionally, the bill allows for a more coordinated effort at the state and federal levels to ensure access to quality respite care. Family Voices will be closely involved as this new program is implemented. Please watch Friday’s Child in the coming months for more information.
SCHIP Budget Shortfall Fix: The State Children’s Health Insurance Program (SCHIP) faced a funding problem. Due to the implementation of the SCHIP legislation more than $900 million in unspent SCHIP dollars was scheduled to become unavailable to the program. This might have caused significant numbers of children and youth covered by SCHIP to lose access to health care services. However, during the lame duck session, Congress fixed the problem and much of the funding has been restored!
Legislation such as this does not get passed without untold hours spent by advocates and families working very hard! Thank you for sharing your gifts and using your voice throughout the year to accomplish important things for families of children and youth with special health care needs!
New Family Voices Reports Available!
by Peggy Curran, Family Voices Staff
Family Voices is pleased to announce that two new reports are now available: Families in Program and
Policy FiPPs MCH Report and Families in Program and Policy FiPPs CSHCN Report.
These reports summarize interviews conducted by parent leaders with state Title V MCH and CSHCN Directors/Staff, regarding participation of families in their program and policy activities. Such activities include advisory committees, addressing state performance measures, special initiatives, the Block Grant process, in-service trainings, and families employed as program staff. These reports provide extensive quantitative and qualitative information on the progress of family leader participation in Title V. Hardcopies of these reports ($3.00/ea) may be ordered through the Family Voices Online Catalog or by calling the Family Voices National Office at (505) 872-4774. Copies may also be downloaded at http://www.familyvoices.org/projects/fipps.php.
Gift Giving Ideas !
Just in time for the New Year. . . . The 2007 Family Voices Calendar loaded with wonderful pictures, great quotes and more.
To order your copy and extras to give as gifts, go to www.familyvoices.org/catalog.php.
Looking for a way to celebrate a special person? During this holiday season, please consider asking friends
and family to make secure, online donations to Family Voices. Or make them yourself on behalf of another! Simply visit our website, www.familyvoices.org to make a
donation or to learn more about how financial gifts are used. Donations may 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—www.cafepress.com/shopfv
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.
Online Survey about Health and Wellness for CSHCN
The Family Voices and
Tufts University research team invite you to complete an anonymous online survey about Health and Wellness for
Children with Special Health Care Needs. The team is looking for as many responses as possible from families who
have children, 6 - 18 years old, with special health care needs (this includes special mental health/behavioral/emotional
needs).
Please go to http://go.tufts.edu/familymatters to access the survey.
SAVE THE DATE!
Family Voices 15th Anniversary Gala Celebration and National Conference
Join Family Voices in our nation’s capital for a celebration of 15 years of
family/professional partnerships and accomplishments! Meet with veteran and emerging family and youth
leaders and national and state partners from across the country. Gain new understanding of current
critical issues: Medicaid policy, information technology, family-centered care, quality assurance,
wellness, transition, youth perspective, cultural competence and much more. Use your voice to
impact the future of health care for children and youth with special health care needs!Don’t miss this opportunity to explore examples of family-centered best practices for improving systems of health care for children and youth with special health care needs. Working together as families, partners, and communities, we can move forward the agenda of health care and build a better future for our children.
FEATURED EVENTS:
- May 23, 2007: Leadership Institute, a 1-day training at the Grand Hyatt (registration limited)
- May 23, 2007: 15th Anniversary Gala Celebration, an evening of celebration at Decatur House
- May 24-26, 2007: National Conference, 2 1/2 days of keynote sessions, workshops, networking opportunities, and more at the Grand Hyatt
Network News
We are delighted to welcome another Network member to the Family Voices family! Ann Phillips, a parent
advocate since her son’s motor vehicle accident in 2000, is a graduate of Partners in Policymaking. Ann works at the
Center for Disabilities Studies (CDS) at the University of Delaware in Newark, DE on a Traumatic Brain Injury (TBI) grant.
She is a facilitator for the Managed Care Parent Panel and serves on several boards and committees, including the
University of Delaware Advisory Council, Delaware Brain Injury Committee, Delaware Assistive Technology Initiative
Advisory Board, the Governor’s Commission on Community Based Alternatives Health Care Committee and the Delaware
Caregivers Support Coalition. Ann collaborated with the University of Delaware CDS on Connecting the Dots—a guide
for families with children with newly diagnosed disabilities that helps them understand how to access services and the
questions that they need to ask. Ann joins Beth MacDonald and Bruce Orr in sharing information and resources with
families of children and youth with special health care needs in Delaware.
Correction: In the December 1st edition of Friday’s Child we reported, in error, that Sheila Donnelly was from Western PA. Sheila and her family live in Factoryville, PA, in Northeastern PA.
News You Can Use:
Resources and More
Families USA Invites You to a Conference Call on SCHIP ReauthorizationA new installment of Families USA conference call serieswill be on Tuesday, December 19th, 2006 at 3:00 PM Eastern Time. This topic of this call will be: What is the State Children's Health Insurance Program (SCHIP) and What are its Prospects for Reauthorization?
One of the biggest items on Congress' agenda next year will be reauthorizing the State Children’s Health Insurance Program (SCHIP). Don’t know what that is? Heard of it, but don’t really know the difference between SCHIP and chocolate chips? Do you work on enrolling kids in your state’s Medicaid or SCHIP program, but don’t understand what all the fuss is about in Washington? If so, then this call is for you! Leading the call will be Rachel Klein and Lena O'Rourke from Families USA, and Jocelyn Moore from the staff of Senator Jay Rockefeller (D-West Virginia). To RSVP for this conference call, go to http://ga3.org/familiesusa/events/schip_121906/register.tcl?trx_id
Estimating the Impact of State Implementation of the Family Opportunity Act
Passed as part of the Deficit
Reduction Act of 2005, the Family Opportunity Act (FOA) allows states the option of extending income
eligibility and creating a buy-in program to expand Medicaid coverage to children with severe
disabilities who have family incomes up to 300% of the Federal Poverty Level (FPL).
The Catalyst Center has just released a technical brief— Methodology for Estimating the Impact of State Implementation of the Family Opportunity Act—to be included when sharing first round estimates on FOA implementation with policy makers and key stakeholders in your state.
The Catalyst Center is a national center funded by the Maternal Child Health Bureau to help the Bureau achieve measurable progress towards the national goals related to children and youth with special health care needs (CYSHCN) by ensuring that all families of CYSHCN have access to adequate public and/or private insurance to pay for the services they need. Visit their website to learn more. Look for their FAQ on FOA to be posted there soon!
EMSC Launches New Website
The Emergency Medical Services for Children (EMSC) Program is pleased to announce the
launch of its new website located at:
http://mchb.hrsa.gov/emsc.
Special features of the new site include: (1) a toolbox highlighting information about specific topics, such as pediatric pain management, pediatric disaster preparedness, and pre-hospital education; (2) up-to-date EMSC News items; and (3) a navigation bar providing quick links to helpful information, such as state activities, funding opportunities, and EMSC products and resources.
Take time today to visit the new website and to see all the information now available to support grantees, health professionals, and families regarding pediatric emergency care issues. Please note that the old EMSC website (www.ems-c.org) no longer exists. All individuals linking to the old address will be automatically transferred to the new site.
SAMHSA Unveils National Mental Health Anti-Stigma Campaign
The Substance Abuse and Mental Health Services Administration (SAMHSA), in partnership with the Advertising
Council, launched a national awareness public service advertising (PSA) campaign designed to decrease the
negative attitudes that surround mental illness and encourage young adults to support their friends who are
living with mental health problems.
The PSAs, which are being distributed to media outlets nationwide, include radio, television, and print. Interactive advertising directs audiences to visit a new comprehensive website, www.whatadifference.samhsa.gov, to learn more about mental health and what they can do to play a role in their friend's recovery.
To support the campaign, SAMHSA recently released "Developing a Stigma Reduction Initiative," a resource guide that provides information on how to mount a statewide anti-stigma campaign, examples of outreach materials, reports on the best practices for stigma reduction, and a resource list for technical assistance. A copy of the guide can be obtained by going to: http://mentalhealth.samhsa.gov/publications/allpubs/sma06-4176/ and clicking on PDF version.
Improving the Health of Immigrant and Refugee Communities Grant
The Robert Wood Johnson Foundation has just posted a call for proposals related to Vulnerable Populations—Fresh Ideas:
Improving the Health of Immigrant and Refugee Communities. The application deadline is January 15, 2007.
This initiative aims to give immigrants and refugees the tools and support they need to improve and maintain their own health. Today, more than 30 million immigrants and refugees live in the United States. They often have high rates of chronic health problems, due at least in part to difficulties they have getting appropriate social and health services. Language barriers, lack of education and cultural differences sometimes make it harder for immigrants and refugees to obtain culturally appropriate services, outreach or other information that could help them live healthier lives. The Vulnerable Populations Portfolio is interested in new community-based approaches to health and health care problems faced by immigrants and refugees. http://www.rwjf.org/applications/solicited/cfp.jsp?ID=19480&c=EMC-FA144
ADA Watch announces The Road To Freedom: Keeping the Promise of the Americans with Disabilities Act
Freedom, Inclusion and Opportunity. These are the core concepts grounding a disability
coalition-led national campaign and RV road tour that have been years in the making.
Launching from Washington, DC, the Road To Freedom is an awareness campaign and yearlong, cross-country bus journey to expose mainstream audiences across the United States to the Americans with Disabilities Act (ADA) and the history of the disability rights movement — all while bringing needed attention to the ongoing struggle for equal access to healthcare, transportation, education, employment and more.
Tour riders will include Yoshiko Dart, Janine Bertram Kemp, Bobby Coward, Russ Holt, Jim Ward, Debbie Fletter Ward and Tom Olin, whose work will be the centerpiece of our traveling exhibit. Additionally, ADA Watch has partnered with Family Diversity Projects (www.familydiv.org) in the production of a joint exhibit. FDP produces award-winning traveling exhibits that tour communities nationally and internationally, and they are producing their first disability exhibit in partnership with ADA Watch/NCDR. info@adawatch.org
Pharmacy Ancillary Labels
Pharmacy ancillary labels allow pharmacists to instruct patients how to use and/or provide information about
the medication they are receiving. This pharmaceutical labeling tool has been developed
by L.A. Care Health Plan Cultural and Linguistic Services in an attempt to reduce misuse of medications by
non-English speaking patients. Visit their
website to find the tool, Pharmacy Ancillary Labels, translated
into 10 languages.
Due to the holidays, the next edition of Friday’s Child will be available January 5, 2007. From us to you—Happy Holidays!
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--Frank A. Clark