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.
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.
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!
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 wward@ecacmail.org.
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.
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.
The 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.
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.
New Data Coming Soon on CYSHCN
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.
Centers 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.
NICHM Webinar
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.
Forum 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.
Translated Health Materials
Contributed by Linda Rowley, Family Voices of Wisconsin
