Linkages is a newsletter geared towards professionals caring for children with special needs in Washington State to
share information, updates and resources.
Disclaimer: The inclusion of any resource or website in Linkages does not imply endorsement.
| Volume 14, No. 1 |
Winter 2008 |
In This Month's Newsletter: Focus Topic - Oral Health & Children with Special Health Care Needs
Oral Health Educational Handouts, Checklists and Forms
Getting to Know Me: Dental Visit Questionnaire
This PDF form provides parents a place to outline their child's
unique needs with regard to their dental visit. Sample questions include: "Things that make me smile or make me feel good", "Things that might
bother me about the dental office", "How my family deals with behaviors or how they can help you deal with them", and "Past experiences with
oral health care".
Dental Office Checklist for Special Needs
Parents and professionals can use this PDF checklist to explore how
their dental office can accommodate a child with special health care needs. Issues to consider include: "Are parents allowed in care rooms? Can
x-ray equipment reach low enough for a child in a wheelchair?, Are staffed versed in alternative x-ray techniques?
Preparing Children and Their Families for the Hospital Dental Experience
This PDF checklist can help health professionals and families think about
and prepare for a hospital dental experience.
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Oral Health Resources and Training for Health Professionals
Oral Health Professional's Guide to Serving Young Children with Special Health Care Needs
This online module provides information to help care for children with special needs and
provide services that address their unique oral health needs. Topics include: Providing Family Centered Care, Preparing Families for In-0ffice
Procedures, Behavior Guidance, and more. This resource also includes practice handouts and forms for patients and families.
Continuing Education: Oral Care for People with Developmental Disabilities
This free 2-hour
continuing education course is for dental professionals. Topics include the health challenges and oral health problems common in people with
developmental disabilities and strategies for oral care in the general practice setting.
Practical Oral Care for People with Developmental Disabilities
The National Institute of Dental and Craniofacial Research offers a series of
booklets and fact sheets on
providing care for people with mild or moderate developmental disabilities. The series covers:
- Autism
- Cerebral Palsy
- Down Syndrome
- Mental Retardation
- Wheelchair Transfer: A Health Care Provider's Guide
Oral Conditions in Children with Special Needs for Primary Care Providers
This online guide covers oral
development, oral trauma, infections and gingival overgrowth and other considerations for children with special needs.
Good Oral Health for Persons with Special Needs
This guidebook
includes general care tips and special topics including: Adapting a toothbrush, different positions for brushing, common problems in children with special needs,
problems that a soft diet can present, and using liquid medicine.
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New Oral Health Grants
Oral Health Status of Children with Developmental Delay
The Center for Children with Special Needs is partnering with Kindering Center, Birth to Three (Federal Way), Little Red Schoolhouse, Boyer Children’s
Clinic and Children’s Therapy Clinic in Kent on a new research grant from the National Institute of Dental and Craniofacial Research. This two year
project will investigate the relationship between health status of young children with developmental delay and parental oral health behaviors and
beliefs. Dr. Charlotte Lewis from the Child Health Institute at the University of Washington is the principal investigator. For information contact
Louise Warren, Research Coordinator, 206-543-6592, or email lcnovak@u.washington.edu.
Oral Health Grant Award
The MCH Oral Health Program, in partnership with the CSHCN/DOH program, received a 4 year federal grant from the Maternal Child Health Bureau to
improve access to oral health services for children with special needs in Washington State. Activities will include: forming an advisory group,
conducting a needs assessment, developing an education plan and training curriculum for dental and medical providers, disseminating educational
materials, and promoting care coordination among providers, families, insurance plans and oral health referral networks.
For more information please email Joseli Alves-Dunkerson or
Yuchi Yang.
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Washington State News
Nanci Villareale Retires
Nanci Villareale, RN, MSN, recently retired as the administrative director of The Center for Children with Special Health Care Needs and The
Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital Research Institute. She leaves behind a legacy to inspire us all.
Nanci accomplished a great deal during her 25 years at Children’s. Working with patients in Pulmonary Care at the hospital during her first
ten years, Nanci developed a strong interest in the special health care needs of children with chronic and life threatening conditions. Longtime
colleague Ross Hays, MD describes her leadership as "very instrumental in Children’s receiving the prestigious Robert Wood Johnson Foundation
Grant for Pediatric Palliative Care." This award provided the funding for Nanci’s groundbreaking work with private insurers and palliative care.
The results prompted the State of Washington to adopt the study’s palliative care model. Eleven other states have since adopted this model.
More recently Nanci has made a significant impact related to family-centered care. As a co-investigator on a grant from the Agency for Health
Care Research and Quality, Nanci, together with Principal Investigator Gail Kieckhefer, PhD, ARNP, parent co-investigator Nancy Uding, and the
project team, are working on a randomized controlled study of an education program that assists parents in managing their child’s disease in
the context of every day living. "Children with chronic conditions and their parents are routinely taught about care of their child’s chronic
condition and its treatment, but few clinicians address how to live with it. The educational program focuses on daily issues faced by parents,
how these issues impact the child, siblings and ways to attend to these issues," states Nanci. Study results will tell us if this type of program
benefits parents of young children with chronic conditions.
Nanci’s work has always focused on affecting policy is a powerful avenue for change, she states, "It is wonderful to make a difference in
the life of one child, but with advocacy you can change the lives of many children and their families."
Epilepsia en Washington
The Department of Health’s CSHCN Program recently received a three year federal grant form the Maternal and Child Health Bureau to improve
access to services for children and youth with epilepsy. The initial target population will be Hispanic families who live in rural, medically
under served communities of Central Washington. The CSHCN Program is in the process of:· Conducting a needs assessment · Developing a
partnership committee · Recruiting participants for learning collaboratives For the needs assessment and partnership committee, the program
would like to count on participation from doctors, Community Health Centers, local health departments, specialty and community-based providers,
schools nurses, and other public and private organizations.
Please contact Yris Lance (Project Coordinator) via email or at (360) 236-3585 or Debbie Spink
(Epilepsy Project Secretary) via email or at (360) 236-3521.
29th Annual Duncan Seminar: Cerebral Palsy Today and Tomorrow: March 28th, 2008
Audience: Health care providers and parents caring for children with neurodevelopmental disorders and other special health-care needs
Topic: New knowledge on cerebral palsy with an interdisciplinary perspective.
Keynote speaker: Diane Damiano PT, PhD, President of the American Academy on Cerebral Palsy and Developmental Medicine
Contact: Visit the website or call (206) 987-5318
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Tools and Resources
Fact Sheet on Care Coordination within a Medical Home
This PDF fact sheet provides consistent language about the
definition of care coordination and its key elements.
Help Me Understand Genetics Handbook
The National Institutes of Health’s Help Me Understand Genetics handbook presents basic
information about genetics in clear language and provides links to online resources.
Health Literacy Training for Health Care Professionals
This course is designed to help health professionals improve their
patient-communication skills, increase their awareness and knowledge of factors that affect their communication with patients, and
implement patient-centered communication practices. The self paced course, developed by the Health Resources and Services Administration,
includes five modules and will take about 5 hours to complete. It may be taken for credit (CEU/CE, CHES, CME, and CNE).
Decision Tree for Referrals for Children with Special Health Care Needs
The Washington State Department of Health - Children with Special Health Care Needs Program, in partnership with the Infant Toddler Early
Intervention Program and local public health nurses, developed the Decision
Tree: Child with Special Needs Referral Process Word Document. The purpose of the Decision Tree is to help primary care providers connect
families with resources for further developmental assessment, intervention services, and care coordination services.
Web Site Provides Guides for Parents of CSHCN
The Special Needs Resource Project web site provides a set of links for each state to help families become
familiar with local resources. It also provides links to National Military and Native American resources, which help families and communities
meet the needs of parents of children with chronic health issues, disabilities and special health care needs.
Audio/Video Resources
The National Association for the Dually Diagnosed now offers eleven
new computer-based trainings (audio/video) on relevant topics for parents and health care providers.
The Developmental Disabilities Council offers videos on various topics that
can be ordered. Titles include:
- Navigating Your Way: A Roadmap for Families with a Child with a Developmental Disability
- The DDD Assessment: An Overview of the Assessment Process
- DDD: The Fair Hearing Process
- DDD Complaint Process
- DDD Working Age Adult Policy
Mental Conditions in Children and Adolescents
This web-based guide from the Maternal Child Health library
provides resources from the health, education, social services, and juvenile justice literature on mental conditions in children and adolescents.
OSPI Offers Web Page for Special Education Students and Their Families
The web page includes questions and answers on "What is an Ombudsman", State Needs
Projects, and publications regarding Special Education, as well as links and resources for families.
Financial Planning Book for Parents
The Special Needs Planning Guide: How to Prepare for Every Stage of Your Child’s Life is written by authors who have family members with
special needs (John W. Nadworny & Cynthia R. Haddadis). Also included is a CD-Rom which contains a helpful Financial Planning Timeline and a
printable Letter of Intent that lets parents communicate key information, concerns, and desires to future caretakers. Published by
Brookes Publishing.
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Journal Articles
"Practice-Based Care Coordination: A Medical Home
Essential"
Families who raise children and youth with special health care needs deserve a medical home. Pediatrics Vol. 120 No. 3 September 2007, pp.
e723-e733
Unmet Mental Health Need and Access to Services for Children With Special Health Care Needs and Their Families
Ambulatory Pediatrics 7(6):431-438. View abstract.
The Health of Caregivers for Children with Disabilities: Caregiver Perspectives
Child Care Health Dev 2007 Mar; 33(2):180-187.
Attention-Deficit/Hyperactivity Disorder Characterized by a Delay in Cortical Maturation
Proceedings of the National Academy of Sciences. Published online before print November 16, 2007.
View abstract.
Medical Homes for Children with Special Health Care Needs
J Health Care Poor Underserved 2007 Nov; 18(4):916-930.
Unmet Needs for Specialty, Dental, Mental, and Allied Health Care Among Children with Special Care Needs: Are There Racial/Ethnic
Disparities?
J Health Care Poor Under served 2007 Nov; 18(4):931-949.
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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.
