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 13, No. 1 |
Winter 2007 |
In This Month's Newsletter:
Online Resources for Children with Special Health Care Needs
Attention Deficit Disorder Resources Website
Articles, links, monthly eNews, National ADHD Directory, web casts and free teleclasses for ADHD professionals, families and adults with
ADHD
Asthma
Maternal and Child Health Library has a Knowledge Path: Asthma in Children and
Adolescents resource for health professionals, program administrators, policymakers, educators, community activists and families. It contains a
selection of resources and research about asthma management, the impact of asthma on homes, schools and communities, environmental triggers and more.
Centers for Disease Control and Prevention has the State of Childhood Asthma, United States:
1980-2005 PDF which is a report with statistics on childhood asthma.
Care Coordination
The Center for Infants and Children with Special Needs at Cincinnati Children’s Hospital & the National Center of Medical Home Initiatives for
Children with Special Needs has a Care Coordination Toolkit entitled "Proper Use of Coordination of Care
Codes with Children/Youth with Special Health Care Needs" for healthcare professionals. It contains information on billing for the coordination
of care with descriptions of individual codes, proper documentation, and an easy to follow billing slip for physician and non-physician time.
The Commonwealth Fund has an online manual entitled How to Develop a Statewide
System to Link Families with Community Resources: A Manual Based on Help Me Grow for program administrators, policy makers and advocates. It offers
guidance for exploring, creating, and/or enhancing a single-point-of-access system to connect children at risk for developmental or behavioral problems
with community resources.
Education
The Access Center has Access in Action for educators. It is a website developed
by states and districts to support access to the general education curriculum for students with disabilities that includes curriculum guides,
educational videotapes, strategies, IEP guides and web links.
The Center for Law and Social Policy has Child Care and Early Education State-by-State Data
for child care providers, educators, policymakers, researchers. It has state-specific data on child care spending, the 2005 Head Start Program and states’
use of community-based child care to provide pre-kindergarten education.
The U.S. Department of Education has a Tool Kit on Teaching and Assessing Students with
Disabilities for state personnel, schools, and families. This online toolkit has information about the U.S. Department of Education’s investments,
papers on large-scale assessment, technical assistance (TA) products, and resources.
General CSHCN Resources
The CanChild website is for families, teachers and providers and contains resources on specific diagnoses,
support, interventions, tips for the provision of family-centered service, supporting advocacy initiatives and more.
The Family Center on Technology and Disability’s November 2006 Newsletter has an article about
Toys for Children with Disabilities which discusses
the impact of play on children with special needs and resources to assist in finding the right toys for them.
The Center for the Improvement of Child Caring has a Special Needs Glossary of Terms with
frequently used disability terms and definitions.
Insurance/Managed Care
DSHS/Mental Health Division has a Washington Public Mental Health System Benefits PDF
Booklet for People Enrolled in Medicaid for Medicaid recipients that explains how to get mental health services, what to do in an emergency,
available benefits and more.
Mental Health
The AAP Mental Health Website for healthcare professionals and families offers mental health information,
resources, community and state mental health programs and more
Georgetown University National Technical Assistance Center for Children’s Mental Health has a
web-based resource called "The Best Beginning: Partnerships Between Primary Health
Care and Mental Health and Substance Abuse Services for Young Children and Their Families" featuring eight medical home practices that integrate
behavioral health screening for the whole family, facilitate referrals to community services, and offer follow-up care.
The National Center for Children in Poverty has a fact sheet entitled "Children’s Mental Health:
Facts for Policymakers" with statistics on mental health problems of children and their unmet needs.
A policy brief discussing current strategies for improving outcomes for youth
with mental health needs and policy recommendations entitled "A Difficult Passage: Helping Youth with Mental Health Needs Transition into Adulthood" is
available from the National Collaborative on Workforce and Disability for Youth (NCWD/Youth) and the National Conference of State Legislatures (NCSL).
The Technical Assistance Partnership for Child and Family Mental Health has an
overview PDF of some of the mental health issues facing many
children and adolescents who are part of the juvenile justice population.
National Adolescent Health Information Center has fact sheets with the most recent available data on
suicide (PDF) and mortality (PDF)
among adolescents and young adults, ages 10-24 years.
The Technical Assistance Partnership for Child and Family Mental Health has a Taking
Charge PDF Guide to selecting an effective treatment plan with examples of commonly diagnosed emotional and behavioral disorders and an overview
of the intervention options available.
The Ad Council and Substance Abuse and Mental Health Services Administration has a What a Difference a
Friend Makes web site with tools to help in the recovery process, information about different kinds of mental illness, true stories about support and
recovery, a video about how friends can make a difference and a search tool to locate mental health services locally.
Physical Activity
The National Center on Physical Activity and Disability has a fact sheet called "Health
Promotion: Parental Roles in Facilitating and Supporting an Active Lifestyle for a Child with a Disability" on how to create an active lifestyle for a
child with a physical disability.
They also have a fact sheet outlining the benefits of and community resources for physical
activity participation by children and youth of all abilities entitled "The Rationale and Benefits of Sport Participation for Youth of All Abilities".
Sensory Impairment
The National Consortium on Deaf-Blindness has a DB-Link website with information and resources on caring
for and adjusting to life with a baby with hearing loss and visual impairment.
Transition
Casey Family Programs has a resource guide to help young people
in foster care prepare academically, financially and emotionally for postsecondary education and training success entitled "It’s My Life: Postsecondary
Education and Training".
The National Collaborative on Workforce and Disability for Youth’s (NCWD/Youth) has a new section of the
website to learn about the 10 KSA Competency Areas, practical professional development strategies, and to connect to new training resources,
including KSA-specific materials.
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Washington State Announcements & News
Center Presents the First Community Excellence Award
Dr. John Neff, Director of the Center for Children with Special Needs, presented the Center’s first Community Excellence Award to Woodmoor
Elementary School. Principal Steve Wharton was given the award at the opening of the
Buddy Garden.
Woodmoor Elementary in Bothell, which prides itself as a "School for All Children," celebrated the opening of the garden last month. The Buddy Garden is a
specially designed outdoor classroom that enables students with special needs to learn about gardening and horticulture.
The New DDD Assessment Project
The Aging and Disability Services Administration (ADSA) has developed a new process called DDD Assessment
that standardizes and automates the process of measuring the individual support needs of persons with developmental disabilities. The Assessment is
computerized, providing an accurate and consistent method for determining the needs of DDD clients. It will replace all other assessments currently
being used by DDD. Three modules make up the DDD Assessment:
- Support Assessment- gives information about potential waiver eligibility
- Service Level Assessment- will be used with DDD clients who are authorized to receive a DDD paid service
- Individual Support Plan (ISP)- describes the services clients are authorized to receive
The new system will be implemented on June 1, 2007.
Input Needed on Assistive Technology with Infants and Young Children
The Tots-N-Tech Research Institute is recruiting a national sample of professionals to provide input for their new program self-assessment tool. The
survey is designed for professionals to identify activities used in their programs that can support assessment,
implementation, evaluation and system processes with Assistive Technology (AT) with infants and toddlers. Tots-N-Tech will use the feedback to develop
an easy-to-use program assessment tool for use by providers to monitor the use of best practices of AT with young children in their early intervention
programs.
Submissions Needed for Washington State Events Calendar
Do you know of a continuing education event for health care professionals who work with children with special needs? We’d like to add it to our online
Calendar of Events. The event must be about children with special needs and take place in
Washington State. Please submit an event
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National News, Policy and Legislation
AAP Developmental Surveillance Recommendations
The American Academy of Pediatrics (AAP) published a policy statement recommending developmental surveillance at every well child visit, and screening
tests administered at 9-, 18-, and 30-month visits. "Identifying Infants and Young Children with Developmental Disorders in the Medical Home: An
Algorithm for Developmental Surveillance and Screening" supports health professionals in establishing a pattern and practice for addressing
developmental concerns in children from birth to age three. The 10 step algorithm is available in both text and flowchart formats.
Journal citation: Council on Children with Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee, & Medical
Home Initiatives for Children with Special Needs Project Advisory Committee. (2006). Identifying infants and young children with developmental disorders
in the medical home: An algorithm for developmental surveillance and screening. Pediatrics, 118(1), 405-420.
IDEA Part B Regulations Finalized
In August, the Part B regulations of the Individuals with Disabilities Education Improvement Act of 2004 (IDEA) were finalized and
published. Part B covers education programs for children with disabilities and
preschool grants. It clarifies of the definition of a child with a disability and "highly qualified" special education teachers.
In conjunction with the completion of Part B regulations, the Office of Special Education Programs (OSEP) is publishing a series of topic briefs related
to the changes. The topic briefs are on their
website in the "Browse Major Topics" section.
Combating Autism Act of 2006
The Combating Autism Act of 2006 was signed into law in December. It will amend the Public Health Service Act to increase federal support for autism
research, screening, diagnosis, and intervention through federally supported "centers of excellence" and grants to states. The National Institute of Mental
Health will spearhead research on autism, and the National Institute of Child Health and Human Development and the National Institute on Deafness
and Other Disorders will provide "collaborative programs of excellence in autism." The Combating Autism Act of 2006 also requires the Secretary of
Health and Human Services to provide information and education on autism to health professionals and the general public, and for the Health Resources
and Services Administration (HRSA) to award grants or cooperative agreements to states for statewide autism programs.
Read more.
Lifespan Respite Care Act of 2006
In December, the Lifespan Respite Care Act of 2006 was signed into law. The new law authorizes $289 million over five years for state grants to develop
Lifespan Respite Programs to help families access quality, affordable respite care. Lifespan respite programs are defined in the Act "as coordinated
systems of accessible, community-based respite care services for family caregivers of children and adults with special needs." Specifically, the law authorizes
funds for:
- development of state and local lifespan respite programs
- planned or emergency respite care services
- training and recruitment of respite care workers and volunteers
- caregiver training
Family caregivers are providing 80% of long-term care in the US, a level of care valued at $306 billion a year, more than what is spent on nursing home and
paid home care combined. Read the full article
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Reports
Characteristics of Preschoolers with Disabilities
In the first report from the Pre-Elementary Education Longitudinal Study (PEELS), characteristics of
children ages 3 through 5 who receive preschool special education services are described. Findings include:
- 46% have a speech or language impairment as their primary disability
- 28% have a developmental delay as their primary disability
- Most preschoolers began receiving special education or therapy services at 3 years of age
- Ratings for children identified as having an emotional disturbance or autism were high, indicating many problem behaviors
- Males had significantly more problem behaviors than females
- Problem behavior ratings differed significantly by income group
Data will be collected through 2009 to examine the achievement of students with disabilities in preschool, kindergarten, and elementary school and
to determine the factors associated with their achievement.
Satisfaction With Primary Health Care Of Families Of Children With Developmental Disabilities
Families that have a child with special needs were surveyed about their child’s primary care. The survey investigated parents’ perceptions about their child’s
doctor and whether differences exist for families who have children with different conditions. 121 surveys were collected and included families of children who
have physical and developmental disabilities. Results showed:
- 33% rated primary care physicians’ ability to put them in touch with other parents as fair or poor.
- More than 20% rated physicians as fair or poor on: (1) understanding the impact of the child’s condition on the family, (2) ability to answer questions
about the child’s condition, and (3) information and guidance for prevention.
- Families rated physicians highest on their ability to keep up with medical skills and new knowledge and about their caring more about the needs of
children than about convenience for physicians.
- Families with a child with autism had more negative comments and rated their primary care physicians lower on several aspects of care. They
requested more information on complementary and alternative medicine and more support in the community.
Read the full survey results PDF
Do School Health Services Meet the Needs of Children with Asthma?
Researchers investigated whether school health services are currently meeting the needs of children with asthma. School nurses in Pennsylvania were
surveyed. They found that:
- Asthma-related equipment was available for student use in only half of urban schools, slightly more in rural schools
- Fewer than one-third of children with asthma had asthma management plans on file
- When a child presented with asthma symptoms in their office, this was often the school nurse’s first indication that a child had asthma
- Registered or licensed practical nurses were present as few as 8 hours per week in some schools
The authors summarize many school systems lack best practices in child asthma management.
Sexuality of Children and Adolescents with Developmental Disabilities
The American Academy of Pediatrics (AAP) has released a new report called Sexuality of Children and Adolescents with Developmental Disabilities
(a summary is available online). The report discusses issues of puberty,
contraception, psychosexual development, sexual abuse and sex education. Recommendations for pediatricians include:
- Give children with disabilities and their families with information about sexual development
- Begin a dialogue with parents at early childhood office visits about sexuality
- Help children master self-care, an important aspect of achieving independence - one that might require more support from pediatricians
- The rate of sexual abuse for children with disabilities is more than double that of children without disabilities, watch for early indications of
sexual abuse
Discussions about sexuality help children lead fuller lives, manage their bodies’ changes, and avoid sexual abuse and social isolation, the report finds.
An accompanying list of resources is available.
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Journal Articles
Asthma
Cloutier MM, Wakefiled DB, Sangeloty-Higgins P, et al. "Asthma guideline use by pediatricians in private practices and asthma morbidity". Pediatrics. 2006,
118(5):1880-1887.
Joesch JM, Kim H, Kieckhefer GJ, et al. "Does your child have asthma? Filled prescriptions and household report of child asthma". J Pediatr Health
Care, 2006, 20(6):374-383.
Cost of Care
Liptak GS, Shone LP, Auinger P, Dick AW, Ryan SA, Szilagyi PG. "Short-term persistence of high health care costs in a nationally representative sample of
children". Pediatrics, 2006, 118(4):e1001-9.
Looman WS. Development and testing of the social capital scale for families of children with special health care needs. Research in Nursing & Health, 2006,
29(4):325-36.
Dental
Skinner AC, Slifkin RT, Mayer ML. "The effect of rural residence on dental unmet need for children with special health care needs". Journal of Rural Health,
2006, 22(1):36-42.
Developmental Disabilities
Council on Children With Disabilities. Section on Developmental Behavioral Pediatrics. Bright Futures Steering Committee. Medical Home Initiatives for
Children With Special Needs Project Advisory Committee. "Identifying infants and young children with developmental disorders in the medical home:
an algorithm for developmental surveillance and screening".[erratum appears in Pediatrics. 2006 Oct;118(4):1808-9]. Pediatrics, 2006, 118(1):405-20.
Family-Centered Care
Denboba D, McPherson MG, Kenney MK, Strickland B, Newacheck PW. "Achieving family and provider partnerships for children with special health care
needs". Pediatrics, 2006, 118(4):1607-15.
General Issues for CSHCN
Macias MM, Roberts KM, Saylor CF, Fussell JJ. "Toileting concerns, parenting stress, and behavior problems in children with special health care needs".
Clinical Pediatrics, 2006, 45(5):415-22.
Newacheck PW, Rising JP, Kim SE. "Children at risk for special health care needs". Pediatrics, 2006, 118(1):334-42.
Ngui EM, Flores G. "Satisfaction with care and ease of using health care services among parents of children with special health care needs: the roles
of race/ethnicity, insurance, language, and adequacy of family-centered care". Pediatrics, 2006, 117(4):1184-96.
Partington SN, Cisler RA, Blair KA. "Prevalence of children with special health care needs in Milwaukee, Wisconsin: data from the Milwaukee
metropolitan statistical area". WMJ, 2006, 105(3):30-5.
Sobo EJ, Seid M, Reyes Gelhard L. "Parent-identified barriers to pediatric health care: a process-oriented model". Health Services Research, 2006, 41(1):148-72.
Van Cleave J, Davis MM. "Bullying and peer victimization among children with special health care needs". Pediatrics, 2006, 118(4):e1212-9.
Waldman HB, Perlman SP. "Children with special health care needs: results of a national survey". Journal of Dentistry for Children (Chicago, Ill.), 2006, 73(1):57-62.
Insurance/Managed Care
Buescher PA, Whitmire JT, Brunssen S, Kluttz-Hile CE. "Children who are medically fragile in North Carolina: using medicaid data to estimate
prevalence and medical care costs in 2004". Maternal & Child Health Journal, 2006, 10(5):461-6.
Chen AY, Newacheck PW. "Insurance coverage and financial burden for families of children with special health care needs". Ambulatory Pediatrics, 2006,
6(4):204-9.
Haley J. Kenney G. "Low-Income Uninsured Children With Special Health Care Needs: Why Aren’t They Enrolled in Public Health Insurance Programs?"
Pediatrics, 2007, 119(1):60-8.
Jeffrey AE, Newacheck PW. "Role of insurance for children with special health care needs: a synthesis of the evidence". [Review] [49 refs] Pediatrics, 2006,
118(4):e1027-38.
Yu H, Seid M. "Uninsurance among children eligible for the State Children’s Health Insurance Program: results from a national survey". Managed Care
Interface, 2006, 19(5):31-9.
Medical Home
Geleske TA. "Building a medical home brick by brick: practice enlists help of parents, state and national organizations to improve care for patients with
special needs". AAP News, 2006, 27(9):44.
Nageswaran S, Roth MS, Kluttz-Hile CE, Farel A. "Medical homes for children with special healthcare needs in North Carolina". North Carolina Medical
Journal, 2006, 67(2):103-9.
Onufer CN, Marks J, Gibson A. "New momentum on building a medical home for the child with a chronic health problem". Contemporary Pediatrics, 2006,
23(10): 65-73.
Schiff JS, Ricketts A. "The Minnesota Medical Home Learning Collaborative: a step to improving care for Minnesota’s children with special health care
needs". Minnesota Medicine, 2006, 89(1):51-4.
Mental Health
Olfson M, Marcus SC, Shaffer D. "Antidepressant drug therapy and suicide in severely depressed children and adults: A case-control study". Arch Gen Psychiatry,
2006, Aug; 63(8):865-872.
Sulzbacher S, Vallin T, Waetzig EZ. "Telepsychiatry improves paediatric behavioural health care in rural communities". Journal of Telemedicine & Telecare,
2006, 12(6):285-8.
Nutrition
McCary JM. "Improving access to school-based nutrition services for children with special health care needs". Journal of the American Dietetic Association,
2006, 106(9):1333-4, 1336.
Physical Activity
Cawley J, Meyerhoefer C, Newhouse D. "Not your father’s PE: obesity, exercise, and the role of schools". Educ Next, 2006, 6(4):60-66.
Sensory Impairment
Heslin KC, Casey R, Shaheen MA, Cardenas F, Baker RS. "Racial and ethnic differences in unmet need for vision care among children with special health
care needs". Archives of Ophthalmology, 2006, 124(6):895-902.
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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.
