Linkages Spring 2008 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 14, No. 2 | Spring 2008 |
In This Month's Newsletter: Focus Topic - National Survey of Children with Special Health Care Needs
- National Survey of Children with Special Health Care Needs (NS-CSHCN) Results
- Using the Data from the CSHCN Survey
- News and Events
- Reports
- Tools and Resources
National Survey of Children with Special Health Care Needs (NS-CSHCN)
The national survey of CSHCN, sponsored by the Maternal and Child Health Bureau, was first conducted in 2000-2001, and again in 2005-2006. The survey involves independent random samples in all 50 states. A total of 40,804 interviews were done with families of a child with special health care needs; approximately 750 in each state. Surveys were given in English, Spanish, Mandarin, Cantonese, Vietnamese and Korean.
There are approximately 214,583 children with special health care needs in Washington State.
| PREVALENCE OF CSHCN | WA State % | Nation % |
| Percent of children who have special health care needs | 14.3 | 13.9 |
| CSHCN Prevalence by Age | ||
| Age 0-5 years | 8.1 | 8.8 |
| Age 6-11 years | 16.0 | 16.0 |
| Age 12-17 years | 18.5 | 16.8 |
| CSHCN Prevalence by Sex | ||
| Male | 16.3 | 16.1 |
| Female | 12.4 | 11.6 |
| CSHCN Prevalence by Poverty Level | ||
| 0-99% FPL | 14.2 | 14.0 |
| 100-199% FPL | 17.7 | 14.0 |
| 200-399% FPL | 13.6 | 13.5 |
| 400% FPL or more | 13.1 | 14.0 |
| CSHCN Prevalence by Hispanic Origin and Race | ||
| Non-Hispanic | 15.0 | 15.0 |
| White | 14.8 | 15.5 |
| Black | 21.4 | 15.0 |
| Asian | 6.7 | 6.3 |
| American Indian/Alaskan Native | --- | 14.5 |
| Native Hawaiian/Pacific Islander | --- | 11.5 |
| Multiple Races | 20.0 | 17.9 |
| Hispanic | 7.8 | 8.3 |
| Spanish Language Household | 4.4 | 4.6 |
| English Language Household | 12.3 | 13.1 |
| NATIONAL CHARTBOOK INDICATORS | WA State % | Nation % |
| Child Health | ||
| CSHCN whose conditions affect their activities usually, always, or a great deal | 26.6 | 24.0 |
| CSHCN with 11 or more days of school absences due to illness | 18.4 | 14.3 |
| Health Insurance Coverage | ||
| CSHCN without insurance at some point in past year | 8.3 | 8.8 |
| CSHCN without insurance at time of survey | 3.2 | 3.5 |
| Currently insured CSHCN whose insurance is inadequate | 29.3 | 33.1 |
| Access to Care | ||
| CSHCN with any unmet need for specific health care services | 21.5 | 16.1 |
| CSHCN with any unmet need for family support services | 7.5 | 4.9 |
| CSHCN needing a referral who have difficulty getting it | 24.6 | 21.1 |
| CSHCN without a usual source of care when sick (or who rely on the emergency room) | 4.0 | 5.7 |
| CSHCN without any personal doctor or nurse | 6.3 | 6.5 |
| Impact on Family | ||
| CSHCN whose families pay $1,000 or more out of pocket in medical expenses yearly for their child | 18.6 | 20.0 |
| CSHCN whose conditions cause financial problems for the family | 19.1 | 18.1 |
| CSHCN whose families spend 11 or more hours per week providing or coordinating child's health care | 6.3 | 9.7 |
| CSHCN whose conditions cause family members to cut back or stop working | 22.7 | 23.8 |
| Family Centered Care | ||
| Child receives family centered care (child's doctor: spends enough time, listens carefully, is culturally sensitive, helps family feel like partners, and child and family get interpreter when needed) | 66.4 | 62.4 |
| MCHB CORE OUTCOMES | WA State % | Nation % |
| CSHCN whose families are partners in decision making at all levels, and who are satisfied with the services they receive | 55.7 | 57.4 |
| *CSHCN who receive coordinated, ongoing, comprehensive care within a medical home | 48.3 | 47.1 |
| CSHCN whose families have adequate private and/or public insurance to pay for the services they need | 65.3 | 62.0 |
| CSHCN who are screened early and continuously for special health care needs | 68.5 | 63.8 |
| CSHCN whose services are organized in ways that families can use them easily | 85.4 | 89.1 |
| Youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work, and independence | 47.3 | 41.2 |
| *A total of 19 different survey questions were used to develop the overall composite score for having a Medical Home. | ||
Child and Adolescent Health Measurement Initiative. 2005/2006 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved 05/14/08.
Using the Data from the CSHCN Survey
National, state and regional level results are easy to access online using the interactive "search the data" feature on the Data Resource Center website
- State-level datasets with the core outcome and indicator variables included can be ordered at no charge in SAS and SPSS formats at the Data Resource Center website
- Data files for the National Survey of CSHCN can be downloaded in SAS file format at no cost from the National Center for Health Statistics website
News and Events
Youth with Disabilities: Risk Factors for Injury
Results from the 2004 Health Youth Survey in Washington State show that compared to youth without disabilities, Washington 10th graders with disabilities are more likely to be bullied, harassed, feel depressed, attempt suicide, never or rarely use seatbelts, drive after drinking alcohol, fight and carry weapons at school. (Similar results were found for 8th and 12th graders.)
| Washington State Healthy Youth Survey Data 2004 | Disability (N=891) | No Disability (N=2,908) |
| Been bullied in past 30 days | 34% | 19% |
| In at least one physical fight in past 12 months | 38% | 25% |
| Felt sad or hopeless almost daily in the past year | 52% | 25% |
| Seriously considered suicide in past year | 34% | 13% |
| Experienced sexual harassment (ever) | 45% | 30% |
By understanding the unique needs of youth with special needs and disabilities, injury planning can identify resources and education approaches that are accessible, culturally appropriate, and family centered. For more information on the study, results and resources visit the Washington State Department of Health PDF
Reasons for Unmet Needs for CSHCN
A new article, posted by Ambulatory Pediatrics, addresses the issue of unmet mental health needs and access to services for CSHCN and their families. The authors (Inkelal M., Raghavan R., and Larson K., et al. 2007) specifically examine whether race, ethnicity, and language are associated with unmet needs, along with other possible factors such as sociodemographics, health insurance, and access to care. The abstract is available from the Ambulatory Pediatrics site.
Medical Assistance Grants Announced
The United Healthcare Children’s Foundation is offering grants for children’s medical services not fully covered by health insurance. Parents and caretakers will be eligible to apply for grants of up to $5,000 for healthcare services that will help improve their children's health and quality of life.
Examples of medical services covered by grants include speech therapy, physical therapy, and psychotherapy sessions; medical equipment such as wheelchairs, braces, hearing aids, and eyeglasses; orthodontia and dental treatments.
Any child 16 years old or younger living in the United States and in need of financial assistance for healthcare services will be considered eligible for a grant. Families must meet economic guidelines, and be covered by a commercial health insurance plan.
Pediatric Bioethics Conference: Genetic Testing in Children and Their Families
The fourth annual conference on pediatric bioethics presented by the Treuman Katz Center for Pediatric Bioethics, Children’s Hospital and Regional Medical Center, will take place July 25-26, at the Bell Harbor International Conference Center, Seattle.
Professional Development in Autism
The University of Washington Experimental Education Unit (EEU) is offering summer training opportunities to meet the needs of students with autism and related conditions. For teachers, paraprofessionals, related service staff, family members, and others. Clock Hours or UW Course Credit available. Pay for four and the fifth attends FREE. Contact Jaime Martin via email or at (206) 221-3139, or register at online. Workshops include:
- Positive Behavioral Supports for Elementary and Middle School Students
- Effective Teaching for Preschool and Elementary Students with ASD and Related Disorders
- Promoting Independence and Social Skills for Preschool and Elementary Students with ASD and Related Disorders
Reports
New Data on Infants and Young Children with Special Health Care Needs
Many studies have looked at heath care expenditures for children with specific conditions; however, there is a lack of data addressing health care utilization and costs for young CSHCN. The authors of this study found that IYCSHCN [infants and young children with special health care needs], require and use more health care services, as well as incur higher expenses.
This study describes the prevalence of special health care needs in infants and young children (from birth to age 5) and delineates their health care utilization, access, and expenditures, with an emphasis on financial burden on families. Some of the findings include:
- IYCSHCN were more likely than their peers without special health care needs to have an identified usual source of care. They were more likely to have unmet needs for prescription medication, medical care, and urgent care; and to have problems seeing a specialist.
- IYCSHCN used significantly more medical services than their age-matched peers.
- Total yearly health care expenditures for IYCSHCN were significantly higher than those of their peers without special health care needs ($2,923 vs. $770)
Houtrow AJ, Kim SE, Newacheck P. 2008. Healthcare utilization, access, and expenditures for infants and young children with special health care needs. Infants and Young Children: An Interdisciplinary Journal of Special Care Practices 21(2):149-159. View the abstract.
Fact Sheet on Health Care Access and Utilization among Adolescents
The 2008 Fact Sheet on Health Care Access and Utilization: Adolescents and Young Adults PDF, contains the most recent available data on health insurance coverage, preventive and other health services, and unmet needs among adolescents and young adults ages 12-24, including those with special health care needs. The fact sheet, produced by the National Adolescent Health Information Center at the University of California, San Francisco, with support from the Maternal and Child Health Bureau, highlights trends and presents data by age, gender, income level, and race and ethnicity. Information on trends and data sources is included.
Tools and Resources
Starting Point Resource Guide and Guia para Padres - New Editions
Starting Point is a free guide to resources in Washington State for children with special health care needs. It includes information on getting legal help, child care and respite, health insurance, medical supplies and equipment, school, transportation and more. Each resource includes contact information and a list of services.
Guia para Padres con Niños que Necesitan Cuidado Especializado, includes both English and Spanish, easy reading text, and symbols with pictures to help the reader. To order, either call the Children's Resource Line at (206) 987-2500, choose option 3, or, call toll free, 1-866-987-2500, choose option 3. Leave a message asking for the guide; include your name, phone number, and address. You can also use the online version of the guide and print a copy.
Sleep Disorders and ADHD
Many children with ADHD may be impacted by abnormal sleep patterns. Sleep deprivation in children can result in inattentiveness, moodiness, and paradoxical hyperactivity. It has been postulated that the pathophysiologic pathway that disturbs sleep patterns is similar to that of ADHD. The severity can range from mild to debilitating, but, evidence is building to support that sleep disorders have a major behavioral impact in this group of patients. For more information on assessment and management, visit the Developmental and Behavioral Pediatrics Online site.
State CHSCN Resources and Organizations
The National Dissemination Center for Children with Disabilities (NICHY) hosts a comprehensive listing of resources and organizations for CSHCN in Washington State. It is a one-stop list for state agencies, disability organizations, parent organizations and others.
DDD Assessment Videos
The following DDD topics are available on DVD:
- Navigating Your Way: A Roadmap for Families with a Child with a Developmental Disability
- The DDD Assessment: An Overview of the Process
- DDD: The Fair Hearing Process
- DDD Complaint Process
- DDD Working Age Adult Policy
The DDD Assessment is also available to view online. To order, visit the Informing Families site or e-mail Linda Walling at the Developmental Disabilities Council at with your contact information.
For orders of more than 15 of any of the titles listed above, please contact the Developmental Disabilities Council office at 1-800-634-4473.
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.