June 2010

June 09, 2010

Emergency Services Planning & CYSHCN

EMSNanfi Lubogo, Co-Executive Director of PATH/Family Voices of Connecticut recently attended the annual national meeting of the Emergency Medical Services for Children (EMSC) in Bethesda, MD. Nanfi participated as the national Family Voices representative in the EMSC Partnership for Children Stakeholders group. Composed mostly of medical professionals and emergency service providers, the group reviewed performance measures and strategic goals for emergency services. Nanfi provided important input to these meetings on challenges faced by families of children with special needs during emergencies and natural disasters. Nanfi identified four areas where the family voice is particularly needed in shaping EMSC practices and policies:

1. Inter-facility Transfer Guidelines for Pediatric Patients: When a child with special needs must be transported from one medical facility to another-often in another state-there is a great need for logistical and emotional support services for the family, and on a national planning level, family input in to shaping guidelines and policies.

2. Transportation Safety: First responder vehicles are designed to safely transport small children or adults, but may not be appropriate for children with special needs, especially those with limited physical abilities who may be too large for toddler equipment and too small for adult versions. Another issue concerns how to care for a child with special needs when a sibling needs to be transported to an emergency room.

3. Disaster Preparedness: Even in areas not often hit with hurricanes or tornadoes, a severe rain storm and subsequent flooding can be serious for a family of a child with special needs. One suggestion offered was to create a Disaster Resource Center in each state, complete with a family component. Family Voices and Parent-to-Parent groups could be instrumental in helping these "one-stop shops" specializing in disaster help. "When crises happen," said Nanfi, "family organizations are able to rally and reach out to our families."

4. Training for Emergency Personnel and Families: Family members can play a key role in training first responders to help children with special needs. Likewise, first responders can help families learn to help responders help their children. Both Family Voices of Delaware and Maine Family Voices (Friday's Child, March 4, 2010)have been actively involved with EMS personnel in their respective states.

Nanfi urges parent leaders to become involved with EMSC. Ask how to link up with the Family Advisory Network member, or volunteer to become one! Nanfi adds "We need to work with them to let them know what real life is like for our kids."

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Family Leadership in the States

Family Leadership in the News

PATH Parent to Parent and Family Voices of CT Present Pepperidge Farm Community Award
Personnel from PATH/FVCT and CT DPH PATH Parent to Parent and Family Voices of CT hosted their annual fundraising gala on Saturday, March 13, providing much needed financial support for the organization, and helping connect parents, supporters, and community partners. This year, PATH/FVCTtheir Pepperidge Farm Community Partners Award to the CT Department of Public Health, CYSHCN Division. Nanfi Lubogo, Co-Executive Director of PATH/FVCT, noted that the Department was recognized for their outstanding efforts in engaging parents as partners in program planning, implementation, and delivery. The Department hasfinancial support through contracts to family organizations; supported families financially to participate in numerous meetings, advisory groups, and events; and has demonstratedstrong commitment to building parent professional partnerships. Upon accepting the award, Rosa Biaggi, MPH, MPA, Chief, Family Health Section, congratulated PATH on becoming the State Affiliate Organization for Family Voices in Connecticut, and talked about the value of their partnership with families.

Barbara Popper: Parent Advocate Award Recipient
Barbara Popper A familiar name, face, and voice for families raising children and youth with special needs, Barbara Popper was recently honored at the annual Gala of the Federation for Children with Special Needs (FCSN) or her parent advocacy efforts spanning decades and projects through both Family Voices and FCSN. In her acceptance speech, Barbara addressed why she continues to advocate for families:

"...parents call every day seeking support and information- often distraught as they tell their stories of dealing with medical systems and school systems that simply aren't prepared for the needs of their families. They call because their instincts tell them to persist, to be tenacious, and to keep trying to get what their child needs even when they have been met with policies, programs, and very often attitudes that confound and block them. What they need is affirmation that their instincts are good and that as parents they can trust their instincts as they work with multiple systems. This essential need hasn't changed over the decades. "

Thanks, Barbara for these words of wisdom and congratulations on receiving this award!

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Legislative Corner

Legislative Corner

heartHealth Care Reform Implementation: Young Adult Coverage

As you have probably heard, the new health care reform law requires that insurers offering dependent coverage allow parents to add their adult children up to age 26 to their policies. Recently, interim final regulations were issued to implement this section of the law.

The law states that young adults can be covered even if they are married. (Spouses and children of adult children need not be covered, however.) The interim regulations clarify that children up to age 26 can be covered regardless of whether they are students, are considered "dependents" for tax purposes, or are financially dependent on, or residing with their parents. It also clarifies that children who were already dropped or never covered under a plan due to their age will be able to get dependent coverage (even if they are covered under COBRA). Children will have 30 days to apply after becoming eligible.

The requirement does not apply until January 2014 if the child has access to group coverage through the child's employer and f the employer's plan was in effect when the health care reform law was enacted. It also does not apply to families covered by TRICARE. Already existing law states that group plans are not permitted to exclude from coverage or base eligibility for benefits on health factors, including a preexisting condition. In the individual insurance market, however, medical underwriting will still be permitted for young adults to the extent it is used for other members of the family.

The new requirements go into effect for insurance plan years beginning on or after September 23, 2010. For many plans this will be January 1. Although some insurance companies will offer coverage earlier so this year's college graduates don't lose coverage when they leave school, other employers have decided not to offer this option, according to a recent NY Times article. Nevertheless, once in effect, the young adult provision will be very helpful to a population with a typically high uninsured rate.

If you have questions, please contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.

HHS Affordable Care Act Resources:

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What's New with Family Voices

Become a Member of Family Voices!
Become an Individual or Organizational Member today and stay connected!
Official membership to Family Voices entitles you to:

  • Discounts
  • Early notification of events
  • Inclusion in a members-only listserv (IMPORTANT:as of July 1, 2010, recipients of FV-Talk will be limited to current members of Family Voices)
  • ...and much more!

To share your membership status:

  • Individual members will receive a member decal for use on a car, home, or office window
  • Organizational members will receive a certificate suitable for framing

Your membership contribution provides:

  • Information
  • Education
  • Advocacy
  • Leadership on CYSHCN and disabilities around issues of health care for family and youth leaders across the country

A limited number of reduced-fee memberships for individuals are available. Contact us at 888-835-5669 for details or go to www.familyvoices.org to learn more and sign up now!

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News You Can Use:
Resources and More
News you can use

Check MarkFinancial Incentives for Health Care Providers and Consumers
Financial Incentives for Health Care Providers and ConsumersHealth reform will emphasize financial incentives for providers and consumers to promote the use of effective health services and discourage use of marginally effective or inappropriate services. The fifth brief in a new series from Mathematica looks at evidence on the impacts of these financial incentives and draws lessons for policymakers.

Check MarkBeach Center Survey on Supporting Young Children with Disabilities at Home
The Beach Center on Disability is seeking parents of children with disabilities aged 3 to 5 years to participate in a survey about providing support for these young children at home. To participate in this confidential survey, go to: http://www.surveymonkey.com/s/B8WD8FB. If you provide an address, you'll receive several children's books as a thank you. For more information, contact Susan Palmer, Beach Center, University of Kansas (785-864-0270).

Check MarkCarolina Health And Transition (CHAT) Project Resources
Youth Guide to Transition The Carolina Health and Transition (CHAT) Project, a state initiative to improve the quality and accessibility of health care transition services for youth, their families, and their medical providers, has developed resources around transition. Guidebooks, toolkits, and brochures are available specifically for providers, families, and teens.

Check MarkSafety Videos from Safe Kids and the MetLife Foundation
Safe Kids and the MetLife Foundation have partnered to bring you a series of safety videos highlighting how you can take precautions in your home to help prevent injuries to children with physical, developmental, or cognitive disabilities. The focus of the videos includes fire and burn prevention, drowning, choking and falls prevention. It will help viewers learn safety guidelines and step-by-step instructions geared towards making safety improvements in the home.
See http://www.safekids.org/safety-basics/special-needs/.

Check MarkNational Quality Forum (NQF) Seeks Input
NQF is seeking member and public comments on establishing and implementing a Partnership for Applying Measures to Improve Quality. Comments are encouraged on the proposed structure, process, involvement of stakeholder groups, and activities of the partnership. Comments must be submitted to measureapplications@qualityforum.org by Tuesday, June 15, at 6:00 pm ET.
See http://www.qualityforum.org/Setting_Priorities/Partnership_for_Applying_Measures.aspx

Check MarkHealth and Wellness Resources from Described Caption and Media Program (DCMP)
Health and Wellness Resources from DCMPThe DCMP, funded by the US Department of Education, serves as a vast library of accessible educational media for parents, teachers, and others who work in an educational or care-giving capacity with children who are deaf, hard of hearing, blind, visually impaired, or deaf-blind. Their latest Health and Wellness brochure highlights a wealth of accessible resources on such topics as autism, first aid, nutrition and more.

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From Our National Partners
From our national partners

Genetic Alliance

Novel Partnership Award presented to the NJ Consortium of Care
The New Jersey Consortium of Care for Children and Youth with Special Healthcare Needs & their Families was selected as the first recipient of Genetic Alliance's Novel Partnership Award. The Consortium, made up of 8 organizations including the Statewide Parent Advocacy Network (SPAN), home to NJ Family Voices State Affiliate and the NJ Family to Family Health Information Center, was selected because out of the many who were nominated, they "stood head and shoulders above the rest!" According to Genetic Alliance, "The partnership is novel because family leadership and support is at the core of the Consortium of Care. Together, organizations represent and work to meet the needs of the full diversity of CYSHCN and their families, and the Consortium engages in continuous quality improvement to enhance outcomes at all levels."
See http://www.geneticalliance.org/bio.njc

Champions for Inclusive Communities

Needs Assessment Survey Results
This latest Knowledge Path provides links to resources on data, effective programs, and policy and research aimed at advancing health coverage and improving access for children and adolescents. See http://mchlibrary.info/KnowledgePaths/kp_insurance.html.

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June is Home Safety Month
June is Home Safety Month

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Thank you for your interest in Friday's Child.  Should you have any questions about this newsletter, please email Peggy Curran