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Linkages Fall 2009 Edition

Submitted by cshcn_staff on Wed, 11/04/2009 - 11:54pm
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Linkages is a newsletter for professionals who work with children with ongoing health conditions or disabilities.

Disclaimer: The inclusion of any resource or website in Linkages does not imply endorsement.

Volume 15, No. 3
 Fall 2009

In This Month's Newsletter: Linkages Discontinuing Hard Copy Format

Enjoy Linkages? Subscribe Online to Continue Receiving It

This will be the last hard copy format edition of Linkages, a triannual newsletter focusing on news and  information for health care providers and others who work with children and youth with ongoing health conditions or disabilities, that offers both an online and hard copy version.  If you receiving this newsletter as a paper copy and wish to continue receiving Linkages via e-mail, you will need to subscribe online.

You can also subscribe by visiting the Center for Children with Special Needs homepage and clicking on “News and Events” then “Linkages Newsletters”.  If you already receive Linkages via e-mail or read it online, you do not need to do anything to continue your subscription. On the Linkages Newsletter page you will also find archives of previous issues featuring topics such as Neurodevelopmental Centers, National Survey of Children with Special Health Care Needs Findings, Oral Health and Children with Special Health Care Needs, and Autism.

Why move Linkages to an online format?

  •  Reduces paper and mailing cost
  • Offers improved format for linking to online sources

The Center for Children with Special Needs will not use your e-mail for any purpose other than sending Linkages notifications.

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News and Events

Obesity News—Now and More Later

If you receive Linkages in a hard copy format, be sure to subscribe online to receive the online Winter 2010 Obesity edition.  In the meantime, visit Seattle Children’s Obesity Action Team (COAT) to learn what they offer providers and families to help prevent, manage and treat obesity such as clinical services, continuing education, referrals to Strong Kids/Strong Teens program and more.

2009 Child Health Day—“Every Child Deserves a Medical Home”

Child Health Day was October 5. Originating in 1928, each year the United States President declares one day of the year to especially focus on working for children’s health.  The 2009 focus was “Every Child Deserves a Medical Home”.  The American Academy of Pediatrics lists key elements of a medical home:

The pediatric team and other health care providers:

  • Know a child’s health history
  • Listen to the concerns and needs of the child and the family
  • Work in partnership with the child and family to ensure that both the medical and non-medical needs are met
  • Create a trusting, collaborative relationship with the child and family
  • Treat the child with compassion and an understanding of his/her strengths
  • Develop a care plan with the child and family when needed
  • Respect and honor the child’s culture and family traditions

The family and the child:

  • Are comfortable sharing concerns and questions with the pediatric team and other health care providers
  • Routinely communicate the child’s needs and family priorities to the primary care provider, who promotes communication and coordination between the family and other health care providers, as well as educational

For more information on medical homes, including fun coloring books and flyers for children and families, visit the National Center of Medical Home Initiatives website.

Influenza and Children with Special Health Care Needs Fact Sheet Available

The Department of Health Children with Special Health Care Needs Program along with the University of Washington Medical Home Project developed an information sheet titled "Seasonal Flu and H1N1 (Swine Flu): Information for Caregivers of Children with Special Health Care Needs".  Please help us get this information sheet to all parents of children with special health care needs who are at high risk for complications from H1N1.  Please use your provider groups, parent groups, newsletters, websites, and other organizational contacts to reach families.  The information sheet will be available in multiple languages over the next couple of weeks and soon can be accessed on the DOH website.

November is Family History Month

Family health history information may help health care providers determine which tests and screenings are recommended to help family members know their health risk. To help families collect their family history information, the Centers for Disease Control National Office of Public Health Genomics collaborated with the U.S. Surgeon General and other federal agencies to develop a Web-based tool called “My Family Health Portrait .” To share this tool, along with podcasts such as “Family History—an Early Warning for your Child” with families you serve visit the CDC Public Health Genomics website.

November is National Family Caregivers Month—Order Family Caregiver Kits for your Practice

National Family Caregivers (NFC) Month is a time designated to thank, support, educate and empower family caregivers across the country currently providing over eighty percent of all long term care in the United States.

The National Family Caregivers Association has NFC Month Kits for use by physicians, nurses and others. The kits include two 14" x 24" posters, special pamphlets and bookmarks with the "10 Tips for Family Caregivers." All materials are in groups of 20 and are designed for sharing in medical offices, support groups, businesses, houses of worship and anywhere else family caregivers may gather. Order and read details about the kits and other useful materials for caregivers in your practice from the National Family Caregivers website.

Oral Health Care for Children with Special Needs—the ECHO Program

The University of Washington School of Dentistry and Seattle Children’s have joined forces to begin building the Washington Dental Service Building for Early Childhood Oral Health (ECHO). Expected to open in September 2010, the program will serve all Washington children birth to twenty-one years of age with an emphasis on children with special needs and children birth to three years of age.

Among 55,000 children under six years of age in King County who are insured by Medicaid, two thirds have never visited a dentist. Families of children with special needs throughout Washington may experience greater difficulty in finding a dentist to evaluate and treat their child’s oral health needs.

Dental decay can be painful, and affect a child’s ability to eat, sleep or learn.  Preventing dental disease helps kids thrive.  Some infections and other disorders that begin in the mouth can spread to other parts of the body, causing widespread illness.

Like car seats and vaccinations, taking care of children’s teeth is an important way to protect their overall health.  Here are a few oral health tips to share with families to help improve the odds of maintaining good oral health (more tips are available from our Dental Care for Children with Special Needs page):

  • Snack appropriately and in moderation. Limit overall eating and drinking between meals. Foods such as cheese, nuts and meats protect tooth enamel by either reducing acidity or providing calcium needed.
  • Brush at least twice a day and floss at least once daily. This helps remove the plaque that damages the teeth and gums.
  • Visit the dentist regularly. In addition to professional cleaning of the teeth, a visit to the dentist helps to catch problems early, when they are most treatable.

If families don’t have an established dental home, call (206) 987-2243 to schedule an appointment.  More information is available at the UW Early Childhood Oral Health website.

 

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Tools and Resources

Missed the Fall School Nurse Update Offered by Health Services?

What’s the latest on school nursing laws and rules, H1N1 information for school nurses? If you missed the Fall 2009 School Nurse Update offered by Health Services program of the Office of Superintendent of Public Instruction, visit their website to review information on health conditions as well as RCW and WAC related to nursing practice in schools.

CDC Parent Brochure on H1N1 and High-Risk Medical Conditions Now Available

A brochure for parents titled Seasonal and 2009 H1N1 Flu: For Parents Who Have Children or Adolescents With High-Risk Medical Conditions is now available from the Centers for Disease Control and Prevention. 

The brochure provides specific information regarding what children are considered to be at risk including those with asthma; neurological and neurodevelopmental conditions including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability (mental retardation), moderate to severe developmental delay, muscular dystrophy, or spinal cord injury; chronic lung disease (such as cystic fibrosis); heart disease (such as congenital heart disease and congestive heart failure); blood disorders (such as sickle cell disease); endocrine disorders (such as diabetes mellitus); kidney disorders; liver disorders; metabolic disorders (such as inherited metabolic disorders and mitochondrial disorders); weakened immune system due to disease or medication (such as people with HIV or AIDS, cancer, or those on chronic steroids); receiving long-term aspirin therapy for chronic disorders; and/or pregnancy.

Sibling Support Project

The Sibling Support Project allows siblings of children with special health care needs to have fun, learn and support each other at SibShop events.  This project is an evidence-based, international effort designed to support siblings of children with special health care needs. Created in 1990 by Don Meyer, the Sibling Support Project publishes children’s books and curricula to train others in offering SibShop events. SibShop events combine information and discussion activities with new games, fun activities, or special presentations with the goal of peer support for siblings of children with special needs. SibShops acknowledge that most brothers and sisters of people with special needs are doing well despite the challenges of a disability or ongoing health condition. Find a SibShop near you.

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Research

Comparativeness Effective Research—Buzzword or Commonsense Approach to Cost Cutting?

This spring, the U.S. Department of Health and Human Services (DHHS) accepted public comment on a new government initiative targeting comparative effectiveness research with the aim of lowering health care costs. The American Recovery and Reinvestment Act of 2009 appropriated $300 million for the Agency for Healthcare Research and Quality, $400 million for the National Institutes of Health, and $400 million for allocation at the discretion of the Secretary of Health and Human Services to support comparative effectiveness research.

The American Academy of Pediatrics (APA) provided input to the U.S. DHHS via the Federal Coordinating Council on Comparative Effectiveness Research.   APA outlined the following pediatric priorities for comparative effectiveness research:

  • Care coordination (cross-cutting across many conditions)
  • Self-management/health literacy (cross-cutting)
  • Asthma—appropriate treatment for persons with mild/moderate persistent asthma
  • Children with special health care needs
  • Type I and Type II Diabetes—focus on appropriate management of early disease
  • Childhood and adolescent immunizations
  • Major depression—screening and treatment, particularly in the adolescent population.
  • Medication management—preventing medication errors and overuse of antibiotics
  • Nosocomial infections—prevention and surveillance
  • Pregnancy and childbirth—appropriate prenatal and intrapartum care
  • Obesity – appropriate prevention, management, and treatment options.

Recent analysis from Rand Corporation found that although comparative effectiveness research may ultimately improve a patient’s experience, it is uncertain how this type of research might decrease health care costs.

Policy Statement—Guidance for the Administration of Medication in School

Council on School Health.
Murray RD, Gereige RS, Lamont JH, Monteverdi GJ, Pattishall EG 3rd, Roland MM, Wheeler LS, Devore CD, Barnett SE, Anderson W, Okamoto J, Grant LM, Magalnick H, Blum AB, Delack S, Vernon-Smiley M, Wallace R, Guinn-Jones M.
Comment in: Pediatrics. 2009 Oct;124(4):1211-2.

Many children who take medications require them during the school day. This policy statement guides prescribing health care professionals, school physicians, and school health councils on the administration of medications to children at school. All districts and schools need to have policies and plans in place for safe, effective, and efficient administration of medications at school. Having full-time licensed registered
nurses administering all routine and emergency medications in schools is the best situation. When a nurse cannot administer medication in school, the American Academy of Pediatrics supports appropriate delegation of nursing services in the school setting. Any delegation of nursing duties must be consistent with the requirements of state nurse practice acts, state regulations, and guidelines provided by professional nursing organizations. Long-term, emergency, and short-term medications; over-the-counter medications; alternative medications; and experimental drugs that are administered as part of a clinical trial are discussed in this statement. This statement has been endorsed by the American School Health Association.

Patient and Provider Education at the Heart of New Prenatal and Early Childhood Diagnosis Program

The U.S. Health and Human Services, Health Resources and Services Administration (HRSA), Genetic Services Branch, awarded Genetic Alliance, in partnership with the National Coalition for Health Professional Education in Genetics and other partners, a four year $3.28 million cooperative agreement for the implementation of the Prenatally and Postnatally Diagnosed Conditions Awareness Act (PPDCAA). PPDCAA is dedicated to improving the system of information and support for prenatal and early childhood diagnosis. The partners will develop models for diagnosing congenital conditions, beginning with: Down syndrome, spina bifida and dwarfism. The program will create replicable, sustainable mechanisms for patient and provider education.

The goal of the Congenital Conditions Program is to collect and disseminate evidence-based information, while coordinating the availability of supportive services for parents whose child receives a diagnosis prenatally, at birth, or up to one year after birth. Program partners will work with HRSA to expand and improve:

  • Awareness of national and local peer-support programs
  • Creation of awareness and educational programs for healthcare providers who
    provide, interpret and inform parents of confirmatory diagnosis results
  • Public use of the Genetics and Rare Diseases Information Center
  • Integration of the Quality Assessment Toolbox, as developed through a Centers for Disease Control and Prevention cooperative agreement for the Access to Credible Genetics Resources Network

This initiative provides an opportunity for family-centered groups to work with health professionals, regional and state programs, federal agencies, and other stakeholders in a cohesive program that increases awareness, educates families and providers, and delivers information during a critical time in a child’s development,” said Joseph D. McInerney, executive director of the National Coalition for Health Professional Education in Genetics.

DCAA paved the way for funding supporting the diagnosis of conditions that impact many individuals throughout their lifespan. Down syndrome, the most commonly occurring chromosomal condition in the U.S., occurs in one in every 733 babies annually. Today there are more than 400,000 people living with Down syndrome. The National Center for Health Statistics indicates that spina bifida, a condition that affects the neural tube, is found in one newborn in 2,500. Types of dwarfism occur in one in every 95,000 newborns. Although the program will focus on these three conditions initially, it will create and solidify a model that can be applied to other conditions.

Source:  Genetic Alliance

Focus Group Opportunity for Washington State Teens with Ongoing Health Conditions

The Center for Children with Special Needs is looking for teens or young adults between fourteen and eighteen years old living with a chronic condition (that has lasted or is likely to last one year or longer) to participate in a focus group. We are gathering input on how teens use the web and what types of information they would look for in order to redesign and provide new content on the Teens tab of our website.

A focus group will take about one and a half hours and will be held at Seattle Children’s Sand Point Way location.  The group meeting will be one evening between November 10th and 12th. Written parental permission is required for participating teens. A $25 check will be mailed to each participant following the session. For more information, please contact jean.popalisky@seattlechildrens.org.

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New Publications

For new or revised publications from the Children with Special Health Care Needs (CHSCN) Program, vist their website.

Data

Family Information

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Center for Children with Special Needs Updates

Support for Families in Your Practice—New Story Network Is Coming

The Center for Children with Special Needs has been working on building a Story Network, a positive place on our website where parents of children or youth with a disability or ongoing health condition can share inspiring stories about: coping in daily life, creating time for self, finding balance, finding meaning, handling emotions, living through hard times, managing relationships, and recognizing a new normal.  Stay tuned for more details!

Ordering Center Materials? Seattle Children's Resource Line Changes

For those of you that order Care Organizers, Care Notebooks or other materials on Seattle Children’s Resource Line, there have been some recent changes. The main numbers remain the same 206-987-2500 or 1-866-987-2500. However the options have changed, so listen carefully before making your selection. Please share this information with the families you serve.

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Produced by the Center for Children with Special Needs, a program of Seattle Children’s with support from the Washington State Department of Health, Children with Special Health Care Needs Program.