Saturday, November 17, 2007

November issue of Friday's Child

November is National Family Caregivers Month

Contributed by Lauren Agoratus, Family Voices of New Jersey, NJ Family to Family Health Information Center

National Caregivers Month If you are caring for a family member or know someone who is taking care of a child with special needs who needs lifelong care, "well-spouse", or eldercare, November is Family Caregivers Month! In his Presidential Proclamation, President Bush wrote, “One of our Nation's defining values is compassion, and we must do our best to see that every citizen is treated with dignity and respect. Family caregivers demonstrate this compassion, often at great sacrifice, to assist with everyday activities for family members who are elderly, chronically ill, or disabled. This dedication contributes to a culture of caring and responsibility across our country.”

The National Family Caregivers Association has released Top 10 Ways to Celebrate National Family Caregivers Month. You might have some ways in addition to those listed below to recognize those who give so much of themselves on a daily basis.

  1. Offer a few hours of respite time to a family caregiver so they can spend time with friends or simply relax.
  2. Send a card of appreciation or a bouquet of flowers to brighten up a family caregiver’s day.
  3. Encourage local businesses to offer a free service for family caregivers through the month of November.
  4. Help a family caregiver decorate their home for the holidays or offer to address envelopes for their holiday cards.
  5. Offer comic relief! Purchase tickets to a local comedy club, give a family caregiver your favorite funny movie to view, or provide them with a book on tape.
  6. Find 12 different family photos and have a copy center or online service create a 2008 calendar that the family caregiver can use to keep track of appointments and events.
  7. Offer to prepare Thanksgiving dinner for a caregiving family in your community so they can just relax and enjoy the holiday.
  8. Take a few minutes to write a letter encouraging your mayor, county executive, or governor to issue a local proclamation establishing November as National Family Caregivers Month. Contact information for government officials can be found at
  9. Become a part of the National Family Caregiver Project found at, and encourage the family caregivers you know to share their stories.
  10. Help family caregivers to find the educational materials and support they need through family caregiving web sites and local support groups.

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Network News
Network News

heart Family Voices extends sincere thanks to both Christy Blakely (FV CO) and Juno Duenas (FV CA) for their years of service as FV Regional Coordinators. Christy served as Region 8 Co-Regional Coordinator with Donene Feist (FV ND), and Juno served as Region 9 Co-Regional Coordinator with Marcia O’Malley (FV NV). Due to increased demands on their time, Christy and Juno leave this role but will remain active in their state Family Voices organizations.

heart Mark Ohrenberg has recently joined Family Voices of Missouri as Youth, Adolescent and Young Adult Coordinator. Mark works as Youth & Family Coordinator at the Services for Independent Living in Columbia, MO. Mark joins the team of Carla Sandwell and Deana O’Brien in MO. Welcome, Mark!

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Family Leadership in the States

New Publication from the North Carolina Family-to-Family Health Information Center

Your Child's Medical Home The NC Family-to-Family Health Information Center, a program of Exceptional Children’s Assistance Center in Davidson, NC, in conjunction with the NC Department of Health, has developed a parent training on the Medical Home Initiative entitled, “Your Child’s Medical Home.” This fifteen-page PDF document discusses the importance of a Medical Home and provides strategies to help parents prompt conversation about their needs with their child’s provider. It also includes, with permission, the Medical Home Family Index to help families think about the services they receive as a component of a Medical Home. The curriculum is written in an easy-to-read format (8th grade reading level) with lots of pictures and graphics. There is a PowerPoint presentation that accompanies the curriculum, and the entire interactive presentation takes about 1.5 hours. For more information, please contact Wendy Ward at

Raising Awareness about Foster Care and Adoption

Contributed by Diana Autin, Family Voices of NJ, NJ Family-to-Family Health Information Center

November is National Adoption Month, a collective national effort to raise awareness of the children in foster care waiting to find their forever families. Children in the foster care system are more likely to have special needs. On November 18, loving families across the nation will celebrate National Adoption Day by finalizing their adoptions of children from foster care. This day will also raise awareness of the many children still waiting to be adopted.

The Angels in Adoption™ Program, Congressional Coalition on Adoption Institute’s (CCAI) signature public awareness program, provides an opportunity to all members of the U.S. Congress to honor the good work of their constituents who have enriched the lives of foster children and orphans. This program includes an annual event in Washington, D.C., the Angels in Adoption™ Gala, which took place on Thursday, October 4, 2007, at the Ronald Reagan Building and International Trade Center in Washington, DC. This event is geared toward highlighting ordinary people doing extraordinary things. These “unsung heroes” are selected by members of the U.S. Congress. Sue Badeau, FV PA, and her husband, Hector, were recognized in October as “Angels in Adoption.” Congratulations, Sue and Hector!

Youth Leadership in the States:

CT-KASA (Kids As Self Advocates) recently organized an event in New Haven, CT, that included a traveling “Freedom Tour.” Read on to learn more.

Disabilities law under fire, groups claim
Mark Zaretsky, New Haven Register, October 15, 2007

If you’re someone without a disability, you may think that when Congress passed the Americans with Disabilities Act in 1990, it took care of problems people with disabilities may have with accessibility and opportunity. But a traveling "freedom tour" landed on the New Haven Green Sunday, and dozens of Connecticut disabilities rights advocates spent the day spreading the message that 17 years later, the ADA is threatened. And particularly threatened by some court decisions by judges who opted to narrowly interpret the law. The advocates say the law is in need of protection, reinforcement and, in some cases, repair.

The event on the Green celebrated "disability culture." The Road to Freedom Bus Tour, a project of ADA Watch and the National Coalition for Disability Rights, is touring all 50 states to urge Congress to keep the promise of the ADA and build support for passage of the proposed ADA Restoration Act in order to do that.

"We feel that the Americans with Disabilities Act over the years has been weakened by a lot of the court cases," said Heather Northrup, coordinator of CT-KASA, which is an acronym for "Connecticut Kids As Self Advocates."

CT-KASA, an organization that, except for Northrup, is largely run by youths, was one of two such organizations that organized the New Haven stop. The other was the Connecticut Youth Leadership Project.

Jeff Prushko of Shelton, one of CT-KASA’s two youth co-facilitators, said events like Sunday’s let people know about ADA, as well as how it falls short.

Click here to read this article in its entirety.

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Voices From Home 2006

Voices From Home 2006
NOW AVAILABLE - Voices From Home 2006 !!!

This 65-page report provides information on activities of the Family Voices network of family and youth leaders in the states. Also included are highlights from the FV project, Kids As Self Adovcates (KASA), data summaries, and charts of FV state initiatives and partners. Download Voices From Home 2006 here or order your hardcopies through the FV Catalog.

Share Your Voice !!!
New KASA Survey & White Paper


KASA wants to hear from youth with disabilities (ages 12-25) about their experiences with paraprofessionals (paras). If you are a youth and want to share your ideas/opinions in order to help improve they way paras work with youth, then please complete this SURVEY. KASA will be compiling the results of this survey in their second White Paper. Their first White Paper, “Standardized Testing: What Youth with Disabilities Have to Say” is available from through the KASA website or the Family Voices Catalog or call the FV National Office at (888) 835-5669.

Family Voices
Now Available!

Family Voices 2008 Calendar
Just in time for the holidays . . . . The 2008 Family Voices Calendar loaded with wonderful pictures, great quotes and more. To order your copy and extras to give as gifts, visit the Family Voices online catalog or call the FV National Office at (888) 835-5669.

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From Our National Partners

Maternal Child Health Bureau
Family Voices congratulates Diana Denboba on her recent appointment as the Integrated Services Branch Chief, Division of Services for Children with Special Health Needs, MCHB/HRSA. Prior to this appointment, Diana worked as a Public Health Analyst for the Maternal Child Health Bureau, and has most recently served as Acting Chief for the Integrated Services Branch. Diana is a long time partner of Family Voices, and we are thrilled to recognize her latest accomplishment! Congratulations, Diana!!!

American Academy of Pediatrics
New Bright Futures Guidelines
Bright Futures Guidelines  - 3rd EditionThe 3rd edition of Bright Futures: Guidelines for Health Supervision of Infants, Children and Adolescents has just been released. This edition replaces previous editions and provides comprehensive guidelines and anticipatory guidance. Like the previous editions, this update is grounded in the philosophy that effective health promotion and disease prevention requires the coordinated effort of health professionals and families.

The new edition contains priorities for each of the 31 recommended health visits. There are ten themes addressed throughout: family support, child development, mental health, healthy weight, healthy nutrition, physical activitysexuality, safety and injury prevention, and community relationships and resources. This edition includes children with special needs throughout and substantive attention is given to cultural competence. Click here to learn more.

Screening Infant Mental Health

American Academy of Pediatrics has announced that an article by Leslie Warlen and her colleagues at Project EAGLE, a Healthy Tomorrows grantee in Kansas City, KS, has been published in the October/December 2007 issue of Infants & Young Children: An Interdisciplinary Journal of Special Care. This article, Screening Infant Mental Health Indicators: An Early Head Start Initiative identifies common limitations of screening and referral approaches in EHS, describes the process by which one EHS program has begun to address such limitations, and highlights indications of system effectiveness as well as plans for future evaluation. Click here to read the article. Project Eagle is currently in their fourth year of the five-year Healthy Tomorrows grant award.

A reminder: Champions for Inclusive Communities launched the Connecting Communities Discussion Forum on their website. This interactive forum is designed to support communities in action by providing an opportunity for families, community providers, and state level policy makers to exchange ideas and share their strategies to strengthen and build community-based services for children and youth with special health needs and their families. As a leader in achieving community-based services systems, we invite you to join in these discussions and spread the word to your network of families, communities and organizations by forwarding this email to them. To view and/or learn more about the discussion forum, visit the ChampionsInC website.

News You Can Use:
Resources and More

Check MarkNew Data Coming Soon on CYSHCN
November 28th marks the release of findings from the 2005-2006 National Survey of Children with Special Health Care Needs.

Many family leaders helped to shape questions that were used in this survey, the 2nd national survey of families of CYSHCN sponsored by the MCHB and CDC. The survey provides data on the prevalence of CYSHCN, their functional limitations, health care access, needs and satisfaction with care, as well as the impact of care and costs on the family. Data is available at a state specific level for every state.

Data Resource Center On the Data Resource Center user friendly website, findings from the survey can be looked at by state, region and nationally, and can be compared across racial, age, kind of special need and other categories. Data on a number of indicators of child health, including the MCHB 2010 outcomes are available.

A one hour webcast scheduled to coincide with the public release of the data from the 2005-2006 survey, will occur on Wednesday, November 28th at 12:30 ET . The call will feature experts from MCHB, CDC and the Data Resource Center to provide you with information about the survey itself, about the findings and how they compare to the 2001 survey, and about the Data Resource Center interactive website where you can find data from both this and other surveys specific to your state. Register here for this webcast to learn more about this important data!

Check MarkCenters For Faith-Based and Community Initiatives 2007 Fall Training Opportunities
While the White House Office of Faith-Based and Community Initiatives coordinates government-wide efforts to expand partnerships with quality nonprofit organizations and extend their work, ongoing implementation of this vision is executed by the eleven Centers for Faith-Based and Community Initiatives located within major agencies across the Federal government. One important aspect of this work is the training events hosted by the Centers in locations across the country. These training sessions are designed to increase faith-based and community organizations’ access to key knowledge, skills, and resources. Topics range from those of interest to all non-profits, such as effective grantwriting, to specific areas of service like after-school tutoring or substance abuse recovery efforts. Click here for more information.

Check MarkNICHM Webinar
National Institute for Health Care Management (NIHCM) The National Institute for Health Care Management (NIHCM) Foundation held a webinar on October 31, 2007 from 1:00-2:30 PM (EDT). The webinar entitled, "Filling in the Cracks: Public and Private Strategies to Extend Health Insurance to Children and Families," explored the following topics: the State of SCHIP, State Health Reforms and the Implications for Children and Families, A Health Plan’s Commitment to Expand Coverage for the Uninsured, and Business and Philanthropy Efforts to Increase Access for Children and Families. Click here for an archive of the webinar and accompanying materials.

Check MarkForum on Quality Improvement in Health Care
The Institute for Healthcare Improvement (IHI)is hosting the 19th Annual National Forum on Quality Improvement in Health Care, The Energy of Many, will be held December 9-12, 2007 in Orlando, Florida. For health care leaders and learners who are passionate about improving care, IHI's National Forum is the most powerful event of the year. Click here for more information.

Check MarkTranslated Health Materials
Contributed by Linda Rowley, Family Voices of Wisconsin

  • SPIRAL: Selected Patient Information Resources in Asian Languages
    A joint initiative of the South Cove Community Health Center and Tufts University Hirsh Health Sciences Library to provide consumer information in Chinese, Cambodian, Vietnamese and Laotian.
  • The 24 Languages Project
    Electronic access to over 200 health education brochures in 24 different languages. This is a project of the Spencer S. Eccles Health Sciences Library, in partnership with the Utah Department of Health, the Immunization Action Coalition, AAPCHO, and many others to improve access to health materials in multiple languages. Brochures and sound recordings are available in Arabic, Armenian, Cambodian, Chinese, Croatian, English, Farsi, French, German, Haitian, Creole, Hmong, Japanese, Korean, Laotian, Portuguese, Romanian, Russian, Samoan, Serbo-Croatian, Somali, Spanish, Tagalog, Thai, Tongan, and Vietnamese.
  • ECHO (Emergency and Community Health Outreach)
    Exists to ensure that people with limited English proficiency receive life-saving health and safety information—in some of the languages they understand best. Languages supported include Cambodian, Lao, Vietnamese, Hmong, and Spanish.
  • Health Information Translations
    Translations included Arabic, Chinese Simplified, Chinese Traditional, English, French, Hindi, Japanese, Korean, Marshallese, Portuguese, Brazilian, Russian, Somali, Spanish, Tagalog, Ukrainian, and Vietnamese.

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