September 2010

September 24, 2010

The Power of Youth Leadership: KASA in Action!

Kids As Self Advocates logoAs MCHB's 75th anniversary celebration nears, it is fitting to note that MCHB has long been a supporter of youth and the special voice and talents they bring to health care discussions, as they are the ones experiencing the system every day. Family Voices understands this better than most, thanks to the national KASA (Kids As Self Advocates) project.

KASA is created and run by youth. A National Youth Advisory Board, composed of youth with disabilities between the ages of 13 and 24, work on and oversee activities and project directives. In addition, the KASA Task Force, with youth between the ages of 12 and 18, provides input on the needs of youth with disabilities and reviews tip-sheets and articles for youth friendliness and accessibility. The Task Force also identifies a yearly project based on needs identified, then plans, organizes, and executes the project. Adult allies, including ProjectDirector Naomi Ortiz, help to facilitate these efforts-without taking over or directing the process.

The KASA Task Force has developed a soon-to-be released Paraprofessional Toolkit. Para-professionals are one-on-one classroom aides that support youth with disabilities in the mainstream school setting. Says Naomi, "School administrators don't necessarily know what to do with paraprofessionals, an idea that came out of implementation of IDEA [Individuals with Disabilities Education Act]. Schools allow the paraprofessional to fulfill required support for an individual student with a disability, but the school administrators have little to no guidelines to follow." Because the 'para' works so closely with the student and does so in a structured setting, much like a working relationship, it is important for all parties in the arrangement to fully understand what is expected, including the youth, the paraprofessional, and school administrators.

The Toolkit includes sections specifically for the youth, the paraprofessional, and the school administrator. The Task Force began by developing a survey for the KASA network to capture experiences of the young people who have used paras. From thesurvey results, KASA youth developed information and identified the important issues that such a toolkit would need to include, including hiring and building a good relationship with the para, and a step-by-step guide to resolving conflict.

"Young people have wisdom that is often ignored or not tapped, especially young people with disabilities who experience a lot of critique and assistance. KASA youth have a lot of valuable firsthand experience that they can share with others,"

adds Naomi. We can learn from their efforts as well! If you'd like to learn more about this Toolkit, join KASA on a free conference call on October 27, at 6:30 pm ET. Call-in details will be posted soon on the Family Voices website. Learn more about KASA by visiting the KASA website.


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Family Leadership in the States

Family Leadership in the States:

Arizona's NICU Manual
Infant in the NICU Arizona's F2F HIC, Raising Special Kids,recognized what a bewildering world life with a baby in the Neonatal Intensive Care Unit (NICU) can be for families. Through personal experience, they also knew that being discharged from the NICU wasn't the end of the challenges a family faces-with ongoing medical issues, the insurance maze, and financial burdens taking their toll on families. And so the idea of the NICU Manual was born.

According to Vickie French, Assistant Executive Director of Raising Special Kids, the manual was originally part of a HRSA grant and supported by Veronica Castillo, grandmother to Renzo, a NICU baby with multiple medical issues, and Wendy Benz, mother of a NICU baby. They helped create a work group with the Southwest Human Development agency, which sends community health nurses to visit families with babies who are released from the NICU with complex medical issues, Arizona State University College of Nursing and Health Initiatives, and POPSICLE-Parent-Organized Partnership Supporting Infants and Children Learning to Eat.

The manual includes forms to help families track medical information and the child's development, and manage medical care, insurance and finances, and state and community resources. One key piece is the Emergency Medical Information Form for Children with Special Needs - a convenient way to keep handy important medical and contact information. Parents are encouraged to fill out the Emergency Medical Information Form with the help of the child's physician, and then carry it with them at all times, to have it available for caregivers, schools, etc.

Families were given the opportunity to review the manual and participate in focus groups which included input from Native American and Spanish-speaking families. The manual is currently in development/testing stages. Community health nurses give the manual to the family, and they sign a family waiver form to satisfy HIPAA laws so F2F Project Staff can contact families and offer parent-to-parent mentoring at 2 weeks, and again at 1, 3, 6, 9, and 12 months.

The Emergency Medical Information Form is available for download:

* Blank Form (to print then complete by hand):

* Interactive Form (to complete online and print):

* Sample Completed Form:

Look for an update in a future Friday's Child when the full manual becomes available.


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Legislative Corner

Legislative Corner

This is a very important month in health care reform, as some of the law's patient protections go in to effect September 23, six months after the bill was signed into law by the President. For insurance plan/policy years beginning on or after September 23, insurers will no longer be able to deny coverage to children who have pre-existing conditions, impose lifetime limits on coverage, or impose annual limits that exceed specified amounts. The rules will phase out the use of annual dollar limits over the next three years until 2014, when the Affordable Care Act bans them for most plans. Plans issued or renewed beginning September 23, 2010, will be allowed to set annual limits no lower than $750,000. The minimum limit will be raised to $1.25 million beginning September 23, 2011, and to $2 million beginning September 23, 2012. These limits apply to all employer plans and all new individual market plans. More about these patient protections can be found here.

Meanwhile, advocates, including FV, are busy providing comments on regulations issued by the Department of Health and Human Services. Currently, the FV policy team is drafting comments on regulations pertaining to the preventive services provision in the law, which requires many health insurers to provide immunizations and other preventive services without charge to the consumer. Children will be entitled to those services outlined in the "Bright Futures" standards endorsed by the U.S. Maternal and Child Health Bureau and the American Academy of Pediatrics. Among the many services that will be covered for children are vision, hearing, and autism screening. Lists of the preventive services that will be covered without cost-sharing can be found here.

In order to help inform future policymaking related to health care reform, FV is partnering with researchers at Georgetown University to track how health reform is affecting families, and in particular, families who have children with special health care needs.

If you are willing to be interviewed, confidentially, about your family's experiences with health care coverage, please let the policy team know via email (see below) that includes your name, address, phone number and a brief explanation of the circumstances you are facing. We will then get back to you with more information.

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

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News from Family Voices

Remembering Cassie Johnston
Cassie JohnstonIt is with profound sadness that we share with you the news of the death of Cassie Johnston, beloved long-time leader of Family Voices of Washington, passionate advocate for children and families, mother, mentor, and friend. Cassie cared deeply about children and families and especially enjoyed working with young family leaders. Cassie spent years working in the early intervention system and never lost sight of how critical early supports and services are to the well-being of young children with special health care needs and/or disabilities and their families.

Cassie is remembered as a gifted mentor to others, steadfast in her belief that families can become change agents. Who will forget Cassie leading others in exploring their gifts, talents, and leadership styles through True Colors?

Cassie has been a part of Family Voices since the beginning and was one of our longest-serving regional coordinators. She also served a term as the Family Voices BOD President. Truly a gifted leader, meeting organizer, and coalition builder, Cassie is also remembered for the regional meetings she ran for many years in MCHB Region X, meetings treasured by the family leaders and professionals who participated. In all she did, Cassie worked to build relationships and partnerships and to link families and professionals. She will be greatly missed.

In the spirit of Cassie's typical meeting closing, we offer Hugs to all in our community, across the country, as we share in this profound loss.

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

Check MarkZero to Three National Training Institute
Make plans to attend the Zero to Three 25th National Training Institute (NTI), December 9-11, 2010, in Phoenix, Arizona, with a pre-Institute on December 8. This professional-level conference will feature research, best practices, and policy issues for infants, toddlers, and families on such issues as the latest brain development research, dealing with challenging behavior, helping families cope with trauma, and supporting families in economic hard times. For more information, click here.

Check MarkPreemieVoices offers Advocacy Toolkit
Here in the US, one in eight babies are born before 37 weeks gestation, and 70% of those births are "late preterm"-occurring between 34 and 36 weeks-with their own set of health issues. Despite the alarming number of preterm births, there is little in the way of public policy that ensures these infants and their families get the ongoing medical support they need. PreemieVoices has created a free, downloadable toolkit of advocacy materials, covering how public policy works, talking points, and help for working with health insurance. Click herefor more information.

Check MarkWebinar from the National Perinatal Association (NPA): Making the Case for Family Support in Every NICU
NPA's first webinar is now available online, with presenters from the University of Utah Hospital, St. John's Mercy Hospital, and March of Dimes. Other presentations are available as well.

Check MarkBackpack Safety Tips for Back to School
Here's another back-to-school tipsheet, from the American Academy of Orthopaedic Surgeons (AAOS), on purchasing, packing, and wearing backpacks to prevent injury to back, neck, and shoulders. Download the tips here.

Check MarkThree National Data Resources on Child Health
If you are writing a report, grant application, or advocating for the children and families in your area, having current statistics to support your focus can strengthen your efforts. Here are three new resources:

* Kids Count Census Data: Online Tool: Aninteractive database system from the Annie E. Casey Foundation providing customized reports of child health-related data at the state and local level.

* America's Children in Brief: Key National Indicators, 2010: Statistics on the health and welfare of children and families from the Forum on Child and Family Statistics.

* Resource Portal for Medical Home Data: An online portal providing access to data information on medical homes from the Data Resource Center for Child and Adolescent Health.

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From Our National Partners
From our national partners


Back-to-School Tips:
Here's a page of timely back-to-school tips on everything from safe travel to school (bus, car, bike, and walking) to bullying-no matter which role your child may find himself in (bully, bullied, or bystander). You'll also find lunch tips and tips for developing good work habits

Commonwealth Fund

Report on Patient Protection and Affordable Care Act:
This new report, Starting on the Path to a High Performance Health System: Analysis of the Payment and System Reform Provisions in the Patient Protection and Affordable Care Act of 2010, analyzes the new law's provisions that will affect health care providers' financial incentives, the organization and delivery of health services, investment in prevention and population health, and the capacity to achieve the best health care and health outcomes for all Americans. Major initiatives discussed include the establishment of health insurance exchanges and new market rules, creation of an Independent Payment Advisory Board and Center for Medicare and Medicaid Innovation, and introduction of payment policies designed to reward hospitals and physicians for value rather than volume.


MCHB 75th Anniversary Webcast: Celebrating Title V at 75 Nationwide
In this webcast on September 27, 2010, 3-4pm ET, MCHB, in partnership with AMCHP is inviting MCH professionals, families and advocates across the country to plan locally for commemorating this landmark legislation and 75 years of successfully ensuring the health of our nation's women, infants, and children. Presentations will reflect on the program's rich legacy, note the vigor of the national and state programs today, and call upon participants to aspire to creating a future worthy of Title V's past. Resources to assist in bringing the Title V anniversary message to state and local partners will be presented. Pre-registerfor this event here.

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National Health Observances in September:

National Sickle Cell Month


Infant Mortality Awareness Month

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Thank you for your interest in Friday's Child.  To subscribe to the e-newsletter version, please visit Should you have any questions about this newsletter, please email Peggy Curran