Linkages
Summer 2007-Volume 13, No. 2 PDF
Contents
New from the Center for Children with Special Needs
Washington State News
National News
New Reports
Tools and Resources
Journal Articles
New From the Center
Improvements to the CSHCN Web site
Comments and feedback collected about the CSHCN web site in last year’s survey have resulted in a re-navigation of the Resources section of the web site. The re-organized categories include:
- Washington State Resources
- Information and Educational Materials
- For Health Care Providers
- Supporting Families
- Care Coordination Tools
Other changes made include:
- Web pages are now cross referenced so items can be easily found
- An A-Z list that includes all resources on cshcn.org with direct links
- An “Other-Languages” page with links to materials in Russian, Spanish and Vietnamese
Visit our updated site at http://www.CSHCN.org
Washington State Announcements and News
New Prescription Drug Card for Washington
Washington has a new state sponsored prescription drug card called the WPDP Discount Card. The card is available to all residents who do not have prescription drug insurance or whose insurance does not cover all their prescription drug needs. The card will save an average of 20% off brand name drugs and 60% on generic drugs. The card is available to any resident, regardless of age or income or insurance coverage. Visit http://www.rx.wa.gov
National News
Health Resources and Services Administration Awards Family-to-Family Health Information Centers
In May, the Health Resources and Services Administration announced 30 grants worth $2.9 million to support new and continued Family-to-Family Health Information Centers for parents of children and youth with special health care needs. Twenty-four new and six continuing statewide centers will each receive grants of $95,700 beginning June, 2007. Family-to-family centers employ parents of children with special health care needs who have experience navigating complex health care and social service systems to help other parents who may be facing similar circumstances. For more information go to: http://www.newsroom.hrsa.gov/releases/2007/FamilyToFamilyAward.htm
NIH Outlines Plans for Study of Pediatric Seizures
NIH researchers have outlined plans for a large-scale national study to determine which of two medications is the safest, most effective treatment for children with status epilepticus. The condition is life-threatening, and even with the best treatment, is fatal in 4 percent of cases. The study is the most comprehensive of its kind and 11 hospitals around the country will participate. Go to: http://www.nichd.nih.gov/news/releases/study_pediatric_seizure_QA_052207.cfm
New Reports
Maltreatment of Children with Disabilities
The purpose of this report is to ensure that children with disabilities are also recognized as a population at risk of maltreatment. Some conditions related to a disability can be confused with maltreatment. The need for early recognition and intervention of child abuse and neglect in this population, as well as the ways that a medical home can facilitate the prevention and early detection of child maltreatment, are covered.
Article citation: Roberta A. Hibbard, Larry W. Desch, the Committee on Child Abuse and Neglect, and the Council on Children with Disabilities. Pediatrics, Vol. 119, No. 5 May 2007, pp. 1018-1025
Pediatric Care Linkages to Improve Developmental Health
This report explores how pediatric practices link young children and their families to community-based developmental services and support. It describes promising strategies undertaken by a variety of primary care practices, as well as by community and statewide programs, to help providers identify children with developmental needs and link them to appropriate services.
http://www.cmwf.org/publications/publications_show.htm?doc_id=430649&#doc430649
Program for Reducing Childhood Depression
The Primary and Secondary Control Enhancement Training (PASCET) program shows promise for treating depression among elementary school-age children. PASCET teaches children skills to enhance their own enjoyment in situations they can control and to be able to modify their feelings and reactions to situations they cannot control. The curriculum consists of eight 50-minute sessions led by two trained therapists.
http://www.promisingpractices.net/program.asp?programid=157
Extreme Irritability: Is It Childhood Bipolar Disorder?
Results of a new study may help improve the diagnosis and treatment of two debilitating childhood mental disorders — pediatric bipolar disorder (BD) and severe mood dysregulation (SMD). When the brain’s electrical signals were measured during mildly frustrating situations, researchers from the National Institute of Mental Health, and the National Institutes of Health, found a very different pattern in children with SMD, compared with children who had BD. Results indicate that different brain mechanisms may lead to irritability in children with SMD, suggesting that they may have an illness other than BD and may require different treatments. For more information go to:
http://www.nih.gov/news/pr/feb2007/nimh-01.htm
Why Young Children Enter Early Intervention Services
The FPG Child Development Institute at UNC-Chapel Hill has written a summary of a study that looked at the reasons why infants and toddlers entering Part C early intervention services are eligible. The findings yield important information about children receiving early intervention and have the potential to shape the services states provide and therefore the outcomes that children experience. The summary is available online at http://www.fpg.unc.edu/~images/pdfs/snapshots/snap38.pdf
Article citation: Scarborough, A. A., Hebbeler, K. M., & Spiker, D. (2006). Eligibility characteristics of infants and toddlers entering early intervention services in the United States. Journal of Policy and Practice in Intellectual Disabilities, 3(1), 57-64.
The Effects of Managed Care on Use of Health Care Services for Publicly Insured Children with Chronic Conditions
Results of this study show that when CWCHC (children with chronic health conditions) enrolled in Medicaid or SCHIP are assigned to managed care plans, they experience lower use rates of commonly needed services, as compared to CWCHC enrolled in FFS (fee-for-service) plans. The article provides national estimates of the effects of different types of managed care programs on access to and use of health care services for publicly insured CWCHC.
Article citation: Davidoff A, Hill I, Courtot B, et al. 2007. Effects of managed care on service use and access for publicly insured children with chronic health conditions. Pediatrics 119(5):956-964.
Child Well-Being Index 2007 Report
According to the Foundation for Child Development, progress being made to improve the quality of life and health for American children has come to a halt. The Foundation has released The 2007 Child and Youth Well-Being Index, an annual comprehensive measure of how children are faring in the United States. The index looks at 7 quality-of-life domains beginning with a base year of 1975. Data sources include the U.S. Census, Centers for Disease Control, National Center for Education Statistics, and other vital statistics and sample surveys.
http://www.fcd-us.org/resources/resources_show.htm?doc_id=472847
Children with Disabilities and Obesity
The National Center of Physical Disability and Activity has a new fact sheet called Children with Disabilities and Obesity. More children are overweight or obese today than ever before. Children with disabilities can be at a greater risk for obesity. Parents may be live that because of their disability, their children cannot by physically active, or they lack resources and ideas for activities for their child. The web site. includes information on exercise and activity information by diagnosis and condition. The fact sheet is available at http://www.ncpad.org/disability/fact_sheet.php?sheet=488
The Hidden School Health Care System
The challenges facing school-based health care providers amid the increasing need for school and community collaboration is discussed in the article “Health at School: A Hidden Health Care System Emerges from the Shadows”. Increased interest in prevention and chronic disease management, powered by escalating concern about childhood overweight, might end the isolation of school health programs and link them more effectively to community-based prevention programs and health care services. The article appeared in the March/April edition of the Journal of Health Affairs. http://www.content.healthaffairs.org/cgi/reprint/26/2/409
Tools and Resources
Family Centered Care
Toolbox for Family Participation
The Title V Toolbox for Family Participation was developed by Family Voices to help support organizations in their efforts to support family involvement in Maternal and Child Health and CSHCN programs. Resources include:
- Family Advisory Committee Development
- Family Employment Tools
- How to Provide Family Friendly Information
- Measuring State Performance
http://www.familyvoices.org/toolbox/
Supporting Families
Emergency Preparedness for Families of Children with Special Needs in Washington State
A guide that includes how to plan and pack for special needs, assessing your child's needs in an emergency, packing a “to go kit” and general emergency preparedness information. Printable checklists and planning lists are included. Links to disability specific emergency preparedness information are provided.
http://www.cshcn.org/resources/EmergencyPreparedness.cfm
Helping Families Partner with their Child’s Health Care Providers
This booklet from Family Voices provides tips on communicating with a child’s health care providers in preparing for an office visit, learning more, and helping your provider help other families. The free booklet can be ordered thru the Family Voices catalog at
http://www.familyvoices.org/catalog.php
Parent Help123
A new web site sponsored by Within Reach (formally Healthy Mothers, Healthy Babies), helps parents find out if their family may qualify for health insurance and food programs in Washington State. http://www.parenthelp123.org/
Starting Point
A comprehensive guide to services and information for families in Washington who have children with special health care needs. Topics include: legal help, child care and respite, child development, insurance, health care, counseling, dental, nutrition issues, medical and adaptive equipment, recreation, school, and transportation. A Spanish version, Guia para Padres, is also available.
Both guides can be downloaded at http://www.cshcn.org/resources/allguides.cfm
Single copies can be ordered at (206) 987-2500, or toll free (866) 987-2500, option 4. For bulk requests, contact patty.centioli@seattlechildrens.org
School Issues
Resolution Meetings: A Guide for Parents
This 12-page booklet helps families better understand resolution meetings and how disagreements between parents and schools about special education services can be resolved. Developed by the Technical Assistance Alliance in collaboration with the Consortium for Appropriate Dispute Resolution in Special Education (CADRE). The guide is available at: http://www.taalliance.org/publications/CADREResolution.pdf
Parent Tool Kit on Teaching and Assessing Students with Disabilities
The Office of Special Education and Rehabilitative Services at the U.S. Department of Education has released a CD version of the Tool Kit on Teaching and Assessing Students with Disabilities: Parents' Materials. These materials were written to augment the Tool Kit on Teaching and Assessing Students with Disabilities. They were created specifically for parents and include information they need as they work with schools to ensure that their children are receiving a quality education. Materials include assessment, instructional practices, behavior, and accommodations.
http://www.osepideasthatwork.org/ParentKit/index.asp
Assistive Technology
Device Loan and Demonstration Program
The Washington Assistive Technology Act Program now offers a Device Demonstration and Equipment Loan Program. Through this program, families can request hands-on demonstration of specific devices or software or for a fee of $10.00, borrow devices or software for up to six weeks. The program is open to all assistive technology users and professionals and service providers including special educators. To learn more visit:
http://watap.org/
Care Coordination Tools
Care Plans
The Center for Children with Special Needs has developed new care plan templates to help families create care plans for their child with special needs. A care plan is something that parents and their child's health care provider develop together. It can include information about medications, foods the child should avoid, therapy, and what to do for the child in an emergency. Care plans can help families share important information in a consistent way with others who take care of their child. Three care plan templates: Getting to Know Me, What’s the Plan? and In Case of Emergency are available to download at:
http://www.cshcn.org/resources/careplans.cfm
For Health Care Professionals
Video Lending Library for Health Care Providers
The Health Consultation Program at the Center for Children with Special Needs has their new online video library up and running. Programs include: What’s New in Diabetes Management for Children & Teens, Initial Management of Minor Trauma and Sports Injuries; ADHD: The Road to Success; Have a Plan for Teens (shaken baby syndrome prevention for young parents). http://www.seattlechildrens.org/hcpvideolibrary
Oral Health and CSHCN
Interactive CD Helps Ease Anxiety of Dental Visits A new interactive CD designed to teach children about good oral health and to ease anxiety about dental visits has been developed by Fraser. My Healthy Smiles uses computerized social scripts to show children what to expect at dental visits. Social scripts can work very well with children who have developmental disabilities. Fraser is a nationally renowned Minnesota nonprofit that serves children of all abilities and adults with special needs. View an online demo or purchase the CD at http://www.fraser.org/products
Web Course for Oral Health Professionals Serving Children with Special Health Care Needs
An Oral Health Professional’s Guide to Serving Young Children with Special Health Care Needs, is a web-based continuing education course that provides oral health professionals with information to ensure that young children with special health care needs have access to health-promotion and disease-prevention services that address their unique oral health needs in a comprehensive, family-centered, and community-based manner. The web-based curriculum was prepared by the National Maternal and Child Oral Health Resource Center at Georgetown University. Topics include (1) an overview of children with special health care needs and oral health, (2) the provision of optimal oral health care, (3) oral health supervision, (4) oral disease prevention, and (5) behavior management. The course is free of charge and is available at http://www.mchoralhealth.org/SpecialCare
Adolescent Transition
Washington State Adolescent Transition Resource Notebook
“Working Together for Successful Transition” updated and revised in June 2006. The notebook is available in hard copy, CD-Rom and on the web at http://www.depts.washington.edu/healthtr/ (under Working Together for Successful Transition: Washington State Adolescent Transition Resource Notebook). Email requests for hard copies or CD-Rom to healthtr@u.washington.edu.
Transition Tips Brochure
For teens and parents and “Transition Timelines” for DD and Chronic Illness populations have been updated and are available at http://www.depts.washington.edu/healthtr/
Journal Articles
Need for and Use of Family Leave among Parents of Children with Special Health Care Needs.
Chung, Paul J, Garfield, C.F., Elliott, M. N., Carey, C, Eriksson, C, Schuster, M.A. Pediatrics Vol. 119 No. 5 May 2007, pp. e1047-e1055
A National Perspective of Surgery in Children with Cerebral Palsy. Murphy NA, Hoff C, Jorgensen T, et al Pediatr Rehabil 2006 Jul-Sep; 9:3):293-399. AHRQ Grant HS11826.
Preparedness of Selected Pediatric Offices to Respond to Critical Emergencies in Children. Santillanes G, Gausche-Hill M, Sosa B Pediatr Emerg Care 2006 Nov; 22(11):694-698.
Asthma Guideline Use by Pediatricians in Private Practices and Asthma Morbidity. Cloutier MM, Wakefiled DB, Sangeloty-Higgins P, et al Pediatrics 2006 Nov;118(5):1880-1887.
Hopeful Thinking and Level of Comfort Regarding Providing Pediatric Palliative Care: a Survey of Hospital Nurses. Feudtner C, Santucci G, Feinstein JA, et al Pediatrics 2007 Jan; 119(1); e186-e192.
Improved Health Care Among Children with Special Health Care Needs After Enrollment into the State Children's Health Insurance Program.
Szilagyi PG, Shone LP,Klein JD, et al Ambul Pediatr 2007 Jan-Feb; 7(1):10-17.
Caregivers' Ratings of Access: Do Children with Special Health Care Needs Fare Better Under Fee-For-Service or Partially Capitated Managed Care? Mitchell JM, Gaskin DJ. Med Care 2007 Feb; 45(2):146-153
Linkages
Produced by the Center for Children with Special Needs, a program of Children’s Hospital & Regional Medical Center, with support from the Washington State Department of Health, Children with Special Health Care Needs Program.
Linkages newsletter promotes information sharing among individuals working with children with special health care needs and their families in Washington State.
Submissions
Submit items to Beth Crispin, Editor at beth.crispin@seattlechildrens.org (206) 987-7814. Children’s Hospital & Regional Medical Center, 1100 Olive Way, Suite 500, MS:MPW 5-2, Seattle, WA 98101
www.cshcn.org
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