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Family Voices is deeply saddened to share with you the recent passing of two members of the extended Family Voices family.

John O’Connell, Jr., father of Family Voices National Policy Director, Julie Beckett, passed away on February 27, 2006 following a traffic accident. John was a banker, businessman and distinguished knight with the Knights of Columbus. Josie Woll, FV HI, wrote, “I was reminded how very proud he was of Family Voices and the work all of us do...but of course, he was especially proud of all that Julie has done and continues to do.”

Jennifer Walden, daughter of John and Ruth Walden, longtime FV NYS Network member and Family Voices Board member, passed away unexpectedly on March 3, 2007. Jennifer was active in the Youth Swim Club in Ravena, NY, and was the Public Relations Director for the Saratoga District Boy Scouts. She was also a dispatcher for the Troy Housing Authority. Our thoughts and prayers are with these two families.

 

REGISTRATION
Starts March 12!
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: 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

On-line registration available at www.familyvoices.org beginning March 12, 2007.

 

News You Can Use:
Resources and More

State Health Data

Recently, the Kaiser Family Foundation/stateStatehealthfacts.org posted new and updated information on Medicaid, SCHIP programs and Medicare Part B for all states and the nation. This information packed website “includes data from July 2006 on Medicaid eligibility for children, parents and pregnant women, and SCHIP eligibility. There also are updated data on children's Medicaid and SCHIP enrollment and renewal practices as of July 2006. The updated information includes monthly Medicaid and SCHIP enrollment data for June 2005 and the percent change in Medicaid and SCHIP enrollment from June 2004 through June 2005. SCHIP spending data for fiscal year 2006 also are available for state, federal and total expenditures, along with federal expenditures by year from 1998 to 2006. In addition, new data on the number of beneficiaries who are subject to Medicare Part B income-related monthly adjustment amounts in 2007 are available” (Kaiser Family Foundation release, 1/25).For more information, please visit http://www.statehealthfacts.org/cgi-bin/healthfacts.cgi.

New Guidelines Issued for Family Support in Patient-Centered ICU CME/CE
by Laurie Barclay, MD
February 6, 2007 — The American College of Critical Care Medicine (ACCM) Task Force has issued clinical practice guidelines for support of patients and their families in the adult, pediatric, or neonatal intensive care unit (ICU). The new recommendations are published in the February issue of Critical Care Medicine (Crit Care Med. 2007; 35: 605-622.). "In 2001, the Institute of Medicine [IOM] strongly recommended that healthcare delivery systems become patient-centered rather than clinician- or disease-centered, with treatment recommendations and decision making tailored to patients' preferences and beliefs," write Judy E. Davidson, RN, FCCM, and colleagues, of the ACCM Task Force. "Nowhere is the need for patient-centered care greater than in the intensive care unit (ICU), where patient and family involvement can profoundly influence clinical decision making and patient outcomes."

These are the first published guidelines defining standards for incorporating families into decision making and care for ICU patients, developed in response to the request of the ACCM of the Society of Critical Care Medicine (SCCM), in an attempt to define evidence-based best practices for support of families in the delivery of patient-centered care in the ICU.

National Conference of State Legislatures: Children’s Health Insurance Reform Webpage
One of Family Voices’ partner organizations—the National Conference of State Legislatures (NCSL)—has a section of their website devoted to children’s health coverage. As you know, many states have significant initiatives in the planning stages or actually underway. Check their site to see state-by-state information- http://www.ncsl.org/programs/health/kidsins.htm

New Findings: Assessing the Impact of Katrina on Persons with Disabilities
The Research and Training Center on Independent Living (RTCIL) at the University of Kansas has recently released a report—Assessing the Impact of Hurricane Katrina on Persons with Disabilities—that you may access at http://www.rtcil.org/products/NIDRR_FinalKatrinaReport.pdf . This research, funded by the National Institute on Disability and Rehabilitation Research, represents the most recent in-depth effort to understand how persons with disabilities prepared for, reacted to, and recovered from the devastating impact of the storm in portions of the Gulf Coast most affected. In addition, this work sought to understand the roles and relationships that Centers for Independent Living (CILs) played in all phases of the disaster, with a special emphasis on their relationship to the emergency management system.

Findings from this report were based upon extensive individual personal interviews and focus groups, revealed three significant gaps in areas affecting persons with disabilities: ineffective pre-disaster planning by CILs, persons with disabilities, and emergency management; poorly developed pre- and post-disaster communication and information sharing within and between these three entities; and underdeveloped pre- and post-disaster coordination between these three entities and other elements of support within communities. Recommendations were built upon these findings. A copy of the executive summary and full report are attached and can also be downloaded from our Centers website at http://www.rtcil.org.

Tax Tips for Family Caregivers
In the Winter 2007 edition of Take Care!, the newsletter for the National Family Caregivers Association, Cecily Slater, CPA, offers some sound tax advise for family caregivers. Did you know that as a family caregiver, you may be entitled to deductions or credits that can help take some of the sting out of tax season? Some things to consider:

• Medical Expenses Deductions – for a deduction to qualify as a medical expense you must have spent money to alleviate or prevent a physical or mental defect or illness which can include medical insurance premiums (unless pre-tax); prescription medicines; doctors’ bills; hospital fees; travel to and from medical appointments at 18 cents/mile. You may deduct only medical and dental expenses that are in excess of 7.5% of your adjusted gross income.
• Special Expenses – you may claim oxygen and the equipment; special schools or homes; artificial limbs; false teeth; eyeglasses; wheelchairs and repairs; crutches; guide dogs; etc.
• Nursing Home Care – only medical expenses incurred in a nursing home.
• Nursing, Therapeutic, and/or Aide Services—wages you pay for an attendant who provides nursing and/or personal care services may be deducted are deductible as medical expenses.

To read the entire article, click on www.thefamilycaregiver.org/pdfs/TakeCareWinter07.pdf

National Wraparound Initiative (NWI) Announces New Publication: Wraparound Process User’s Guide

The National Wraparound Initiative (NWI) has developed a Wraparound Process User’s Guide to help understand the stages and vocabulary of the wraparound process. The guide was written with families in mind, but is also relevant to policymakers and other stakeholders in communities using or considering implementing the wraparound process. To download the guide and other NWI documents, go to www.rtc.pdx.edu/nwi/NWIWork&Prod.htm.

ARC Announces New Publication: An Advocate’s Guide on Assisting Victims and Suspects/Defendants with Intellectual Disabilities

The Arc of the United States recently published An Advocate’s Guide on Assisting Victims and Suspects/Defendants with Intellectual Disabilities. The publication provides an overview of the juvenile justice system and what families and advocates need to know to assist people with disabilities who are involved either as victims of a crime or as suspects or defendants. The document also refers to other related resources and articles. Download this guide at www.thearc.org/AAdvocacyGuide.pdf or www.arcofkingcounty.org

The Family Voices Store at Family Café—One Stop Shopping for Family and Friends

Looking for a way to honor a family member or special caregiver, or seeking just the right thank you gift? Consider making contributions to Family Voices through secure, on line donations, purchases of Family Voices Merchandise or purchases from Amazon.com through the link on our web home page. 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, 2340 Alamo SE, Suite 102, Albuquerque, NM 87106.

The Family Voices Store at Cafe Press— www.cafepress.com/shopfv has lots of fun FV t-shirts, mugs and more.

When buying books from Amazon.com, don’t forget to link to Amazon through the Family Voices website home page at www.familyvoices.org. 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.

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