Linkages Winter 2009 Edition
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. 1 | Winter 2009 |
In This Month's Newsletter: Focus Topic - Birth Defects
Birth Defects
What is a birth defect?
About 120,000 babies (1 in 33) in the United States are born each year with birth defects (1). A birth defect is an abnormality of structure, function or metabolism (body chemistry) present at birth that results in physical or mental disabilities or death. Several thousand different birth defects have been identified. Birth defects are the leading cause of death in the first year of life (2).
What causes birth defects?
Both genetic and environmental factors, or a combination of these, can cause birth defects. The causes of about 70 percent of birth defects are unknown (1). Source: March of Dimes
Read more about birth defects from the March of Dimes website or visit the Washington State March of Dimes.
1. Centers for Disease Control and Prevention (CDC). Birth Defects: Frequently Asked Questions. March 21, 2006.
2. Martin, J.A., et al. Annual Summary of Vital Statistics-2003. Pediatrics, volume 115, number 3, March 2005, pages 619-634.
Washington State Birth Defects
Washington State Department of Health has a Birth Defects Surveillance Enhancement Plan. The Plan was developed to create a consistent and thorough approach to improving birth defect surveillance in Washington State.
In 2000, the Washington State Board of Health approved a revised list of congenital abnormalities notifiable by law to public health authorities under Chapter 246-101 of the Washington Administrative Code. Among these were nine birth defects and three developmental conditions. The conditions are:
- Anencephaly
- Spina bifida
- Cleft lip
- Cleft palate
- 2nd and 3rd degree hypospodius
- Limb reduction defects
- Gastroschisis
- Omphalocele
- Down syndrome
- Autism
- Cerebral palsy
- Fetal alcohol syndrome
At this time approximately 70% of Washington Hospitals are providing the Birth Defects Surveillance System with birth defect case data. Of these hospitals, 89% are mailing in hand-written or computer generated paper logs that need to be entered by DOH staff. To lessen costs to hospitals and the state, the Department of Health is in the process of developing a web based electronic reporting system. This new process will allow the hospitals to enter data or send electronic batch files directly to the Birth Defects Surveillance System via a secured network. Source: Washington State Department of Health Maternal Child Health
News & Events
National Birth Defects Prevention Network (NBDPN) spreads the message to “Get Fit for Pregnancy.”
The believes a mother’s health, including her weight, before, during and after pregnancy is an important foundation to having a healthy baby who grows into a healthy child. “Getting Fit for Pregnancy” is the theme of National Birth Defects Prevention Month, January, 2009. Good health habits include:
- knowing your family history
- keeping regular check-ups with a doctor
- maintaining a healthy lifestyle.
For every woman, from puberty to menopause, healthy habits also include taking a multivitamin with 400 mcg of folic acid daily, starting before pregnancy. NBDPN collects and exchanges information about birth defects and their prevention, encourages research, and provides technical support to state and local birth defects monitoring programs. To learn more about the Network and Birth Defects Prevention Month visit the NBDPN website.
Social Security Compassionate Allowance
Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.
Compassionate allowances are a way of quickly identifying diseases and other medical conditions that qualify under the Listing of Impairments based on minimal objective medical information.Compassionate allowances allow Social Security to quickly target obviously disabled individuals for allowances based on objective medical information.
The initial list of Compassionate Allowance conditions was developed as a result of information received at public outreach hearings, public comment on an Advance Notice of Proposed Rulemaking, comments received from the Social Security and Disability Determination Service communities, and the counsel of medical and scientific experts. Social Security also considered which conditions are most likely to meet their current definition of disability.
Fifty conditions were selected for the initiative's rollout. See the list of conditions. Pediatric diagnoses in the initial list include:
- Acute Leukemia
- Astrocytoma, Grade III and IV
- Infantile Neuroaxonal Dystrophy
- Krabbe Disease (infantile)
- Pompe Disease
- Rett Syndrome
- Spinal Muscular Atrophy
Combating Autism Advisory Council
Carol Miller, MPH
The Combating Autism State Implementation grant from the US Department of Health and Human Services/Maternal Child Health Bureau has thrust Washington’s Department of Health Children with Special Health Care Needs Program into the national Combating Autism Act Initiative, a $37 million proposal to address autism spectrum disorders and other disabilities. This plan brings together Combating Autism Training Programs, the Autism Intervention Research Networks Program, the Combating Autism State Implementation grants and a national evaluation. Washington State is honored to have all programs operating within the state.
As part of the grant activities the CSHCN program has organized the first state Combating Autism Advisory Council meeting to be held January 9, 2009 in Olympia. CSHCN will join with our partners Leadership Education in Neurodevelopmental & Related Disorders (LEND) at the University of Washington and the Research Network at Seattle Children’s and a variety of stakeholders from across the state and agencies to hold several meetings a year.
These workgroup efforts will: improve autism awareness; improve methods of information sharing; support research on evidence-based interventions; impact existing benefit and care systems for children and youth with special health care needs; and work toward assuring that children and youth with autism receive early and appropriate identification, diagnosis, and intervention.
For more information:
Carol Miller, MPH, Autism Project Coordinator,
CSHCN Program, Washington State Department of Health
(360) 236-3572
Washington State Department of Health Autism Project
Autism Class Series at Seattle Children’s Autism 101
A 90-minute class for parents and caregivers of children recently diagnosed with autism who wish to better understand this disorder. Autism 200 A series of 90-minute classes for parents and caregivers of children with autism who wish to better understand this disorder. The lectures cover a variety of topics such as communication skills, behavioral skills, social skills, medication and legal aspects. Taught by faculty from Seattle Children’s, University of Washington, and community professionals. Each class includes time for questions. Information and directions are available from the Seattle Children's site. Please call the Children's registration line at 206-789-2306 with any additional questions.
Washington Family to Family Health Information Center
Washington PAVE was awarded a three year grant from the Maternal and Child Health Bureau for a Washington State Health Information Center (HIC). The HIC isfamily directed and works in partnership with Washington State Children with Special Health Care Needs Program and other family programs, organizations and support networks. The core concept of the program is C.A.R.E. C.A.RE stands for Community, Advocacy, Resources and Education. C.A.R.E. provides information and resources to assist families and youth with special health care needs, including families from culturally diverse communities. The goal is to enable families to more effectively access systems of care and influence decision makers responsible for implementation of family centered health care systems in Washington State.
For information:
Cassie Johnston or Julie Finholm at Washington PAVE
Phone: 1-800-572-7368 (vtty)
e-mail: cjohnston@washingtonpave.com or jfinholm@washingtonpave.com
Adult Health Care Provider Survey
Kathy Tekolste, MD
Why do so many young adults with chronic childhood-onset health conditions and/or developmental disabilities have difficulty finding a health care provider after ‘graduating’ from pediatric care? Washington State Department of Health recently surveyed a sample of health care providers serving adults in Washington State.
Reimbursement, time and paperwork demands remain significant barriers to service provision for young adults with chronic conditions or disabilities. Other difficulties cited include a lack of experience with the transitioning population and their specific health problem(s), as well as transportation issues in getting to clinics.
To improve access to adult providers, primary care providers indicate a need for personnel support to assist with case management and for access to social services, nutrition services and medical specialists. The availability of a family member or other caregiver who is conversant in the health and other issues for transitioning youth/young adult with a developmental disability is cited as very helpful in providing health care. Youth with other chronic childhood-onset conditions can assist by understanding and participating in the management of their health condition.
CSHCN.org is New and Improved
The website of Seattle Children’s Center for Children with Special Needs is being redesigned and will have a new look. Navigating the website will be improved so visitors can more easily find information.
Changes include a searchable database of resources and contacts, new links to information on childhood chronic conditions, a glossary, and direct links to information in languages other than English. The Resources and Contacts category will include a county drop-down list for Washington State, and by region for Alaska, Idaho, and Montana. Maps of the states, counties and regions will be available in this section. Home page, left side navigation will include a list of major categories and quick reference buttons. The buttons provide “getting started” information for families who have a child with a new diagnosis, downloading forms and documents, and supporting our work - which includes a way for parents or others to participate in focus groups, interviews or research. Three tabs across the top of the homepage (Parents & Caregivers, Teens, and Professionals) will be available to guide navigation. On the right side, visitors can link to top visited resources.
Website changes are scheduled for mid January, 2009. Questions or comments? Please e-mail via the website comment section.
Grant Opportunities
CATCH Grant Applications Due January 30, 2009
The Community Access to Child Health (CATCH) Program is accepting applications for CATCH Implementation Funds grants. CATCH supports pediatricians in the initial and/or pilot stage of developing and implementing a community-based child health initiative. Grants of up to $12,000 are awarded annually on a competitive basis to pediatricians who want to address the local needs of children in their community.
CATCH Resident Funds
CATCH Resident Funds support pediatric residents in planning community-based child health initiatives. Grants up to $3,000 are available for pediatric residents to work with local communities to ensure all children, especially underserved children, have medical homes and access to any needed health care services.
Reports
The National Center for Education Statistics (NCES) released a new literacy report, National Assessment of Adult Literacy: Indirect County and State Estimates of the Percentage of Adults at the Lowest Literacy Level for 1992 and 2003, from the National Assessment of Adult Literacy (NAAL). The report provides the only available snapshot of adult literacy rates for individual states and counties. The report, based on the 2003 NAAL and the 1992 National Adult Literacy Survey (NALS), serves as an important source of literacy information for policymakers and researchers. The report is accompanied by an interactive web tool, which shows data for all states and counties. The tool provides the ability to compare states, counties, and progress in states and counties over time. The full report and interactive web tool is available at NCES.
Tools and Resources
Prenatal Obesity Prevention Packets
In recognition of National Birth Defects Prevention Month (January 2009), the National Birth Defects Prevention Network's Education and Outreach Committee has compiled an educational packet containing materials with a special focus on obesity prevention and weight management before, during, and after pregnancy. The materials in the packet are from a variety of sources; they provide information about obesity and how excessive weight gain can affect pregnant women and their fetuses, and they identify opportunities for prevention. Contents include pamphlets, posters, fact sheets, sample proclamations, news releases, letters, and lists of other resources. Many of the materials are available in English and Spanish. The packet is available from the National Birth Defects Prevention Network.
Family Health History
A peek into the past can reveal a lot about your future.
Family health history is the story of diseases that run in your family. Along with culture, values, environment, and behaviors, family health history influences the way you live your life. Learning about your family health history can help you make healthy choices: it is a cheap, easy way to improve your own health and the health of your family. Share the information you gather with your healthcare provider to further reduce your risk of disease and create a partnership around your health. Source: Genetic Alliance
Family Health History Tools:
Thanksgiving 2008 was the fifth annual Family Health History Day. Sharing stories about family health history can be a helpful way to talk with children about health conditions that run in their family.
- Does it Run in the Family?
- My Family Health Portrait
- Retratro de Salud de mi Familia
- It Runs in My Family
Family Health History Tools For Providers:
Insurance Coverage
The Cleft Palate Foundation offers information on how to obtain insurance coverage for treatment. This information can be helpful for conditions other than cleft palate as well.
What if your insurance carrier denies coverage for necessary treatment?
Unfortunately, this situation is common across the country, particularly under managed care. In many cases, the person making the initial denial does not have a medical background. Be sure you are dealing with a case manager or someone who is knowledgeable about the condition. Keep track of every time you contact the company, noting the person you talked to, date and time, and a summary of the conversation. Try to find one sympathetic person. Some policies contain a clause about “genetic birth defects” that requires coverage for any medical treatment that is a direct result of a birth defect. (This may not be contained in the policy summary booklet, so ask a representative of the company to look it up.) Be polite, but assertive.
What rights do I have?
As a paying customer of the company, you have a right to ask for the medical care you need. If your initial request for treatment is denied, you may want to investigate the appeals process. Most companies have a series of steps you must go through. (Keep in mind that the “third party reviewer” of your case is probably paid by the insurance company.) Your state may also have laws to protect you. Check with your state insurance commission, state representatives or legislature, or the Cleft Palate Foundation (or disease advocacy organization). Source: Cleft Palate Foundation
New from Adolescent Health Transition Project
Youth with Type 1 Diabetes Mellitus
See the Adolescent Health Transition web site for information to better assist young adults in transitioning to adult medical care and self-management. Resources include ‘Tips for life on your own’, ‘Leaving your pediatric health care provider’, and ‘Local college resources’.
Transition for Individuals with Turner Syndrome
See the Adolescent Health Transition web site for information on transition to adult health care for individuals with Turner Syndrome. Take a little time to browse here! At this site you will find information on health care considerations and prevention of secondary conditions in adulthood for a number of specific diagnoses.
Journal Articles
Molloy AM. Kirke PN. Brody LC. Scott JM. Mills JL. Effects of folate and vitamin B12 deficiencies during pregnancy on fetal, infant, and child development. [Review] [168 refs] Food & Nutrition Bulletin. 29(2 Suppl):S101-11; discussion S112-5, 2008 Jun. UI: 18709885
Today, low maternal folate status during pregnancy and lactation remains a significant cause of maternal morbidity in some communities. There is mounting evidence that inadequate maternal folate status during pregnancy may lead to low infant birthweight, thereby conferring risk of developmental and long-term adverse health outcomes. Folate-related anemia during childhood and adolescence might predispose children to further infections and disease. The role of folic acid in prevention of neural tube defects (NTD) is now established. Several studies suggest this protection may extend to some other birth defects. Starting pregnancy with an inadequate vitamin B12 status may increase risk of birth defects such as NTD, and may contribute to preterm delivery, although this needs further evaluation. Furthermore, inadequate vitamin B12 status in the mother may lead to frank deficiency in the infant if sufficient fetal stores of vitamin B12 are not laid down during pregnancy or are not available in breast milk. However, the implications of starting pregnancy and lactation with low vitamin B12 status have not been sufficiently researched.
Rankin J. Silf KA. Pearce MS. Parker L. Ward Platt M. Congenital anomaly and childhood cancer: A population-based, record linkage study. Pediatric Blood & Cancer. 51(5):608-12, 2008 Nov. UI: 18623214
Findings suggest that children born with congenital anomalies are at increased risk of certain types of cancer. Thirty-nine children with a congenital anomaly and a diagnosis of cancer were identified from a cohort of 599,290 children born during 1985-2001. There was an almost threefold overall increased risk of malignancy among these children, particularly of acute lymphoblastic leukaemia, acute myeloblastic leukaemia, other leukaemia and lymphomas. This increased rate remained when children with Down syndrome were excluded.
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.