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. 3 |
Fall 2008 |
In This Month's Newsletter: Focus Topic - Neurodevelopmental Centers
Neurodevelopmental Centers
What are Neurodevelopmental Centers?
Neurodevelopmental Centers in Washington State provide therapy and related services to children with neuromuscular or developmental disorders. The
centers serve children from birth through adolescence (some centers may limit the age groups served). Examples of children who receive services are
those with:
- Cerebral palsy
- Down syndrome
- Autism
- Pervasive developmental delay
- Other disorders involving neurodevelopmental function
There are 16 centers located across the state; each one meeting needs specific to its community. Visit the Washington State Department of Health's
Word Document for all the centers in Washington (all centers
have different names, some exist within hospitals).
What services do the centers provide?
The centers provide speech, occupational and physical therapies. At the discretion of the child's primary care provider, referral for additional
medical specialty consultation is also available. Other services may include nursing, nutrition, social work, educational services, adaptive
equipment, computer augmented communication therapy, hydrotherapy, and more.
Is case management provided?
Service coordinators at the centers work with families to help identify, anticipate, and meet the needs that they may encounter. The staff at the
centers also teach families how to find their way through the health care system and help them to coordinate care.
How is a child referred to a Neurodevelopmental Center?
Families can refer their child to a Neurodevelopmental Center, or their primary care provider or other professional may refer the child. Reasons
for referral include concerns about muscle tone; concerns with vision, language, and hearing, inability to suck, swallow, or eat properly; or other
concerns about development.
Where can families go if they have a question about their child's development?
They can start with their child's health care provider who can provide screening or suggest a resource. Parents can also contact their county's
Family Resource Coordinator (FRC). Parents do not need a referral to contact a FRC. A FRC can help a family get a developmental screening and
evaluation. To find a county FRC call the Family Health Hotline at 1-800-322-2588.
The
Hearing and Vision Checklist, and the
Birth to Six Growth and Development Chart, can be used by parents, child care providers, case
workers, preschool staff, and anyone working with infants and toddlers, to help them recognize possible problem areas in a child's vision, hearing, and
development.
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Announcements & News
What Helps You? Parents Share Ideas and Strategies for Managing their Child's Needs in Daily Life
The Center for Children with Special Needs at Seattle Children's Hospital, offers a new resource for parents. The online resource
"What Helps You" was developed out of the Building on Family Strengths (BFS) project. This
four-year research project, evaluated the effectiveness of a seven-session class for parents of children with special health care needs. The classes
were developed to assist parents in managing their child's chronic condition in everyday life. During the course, parents discussed challenges they
faced related to different topics and strategies they used to meet the challenges. Topics at the sessions included emotions, relationships, the child's
chronic illness, siblings, relationships, parenting, dealing with large systems, and finding meaning in the experience. "What Helps You" shares what
parents found helped them to deal with the challenges of daily life when their child has a chronic condition.
BFS was a joint project of the Center for Children with Special Needs and the University of Washington's Department of Family and Child Nursing and
Center for Human Development and Disability, in Seattle, Washington. Funding for the project was awarded by the Agency for Healthcare Research and
Quality in the United States Department of Health and Human Services.
Families, Clinicians, and Children and Youth with Special Healthcare Needs: A Bright Future
A recent article from Family Voices, introduces the newly revised Bright Futures Guidelines for Health Supervision of Infants, Children, and
Adolescents. The comprehensive article covers:
- Family centered care-what it is and where it came from
- The concept of medical home and what it looks like today
- Recommendations for professionals on partnering with families including: building trust with families, joint decision-making, communicating with
families and cultural competence
- Publications and resources for families and professionals
Arango, P., Anderson, B., Wells, N.
Families, Clinicians, and Children and Youth
with Special Healthcare Needs: A Bright Future. Pediatric Annals, 37:4, April 2008, p 212-222.
Bright Futures Guidelines for Health Supervision of Infants, Children, and Adolescents. Hagan JF, Shaw JS, Duncan P. 3rd ed. Elk Grove Village, IL:
American Academy of Pediatrics; 2007.
English/Spanish Language Software
As reported in recent editions of Friday's Child, families served by the Statewide Parent Advocacy Network (SPAN) of New Jersey are using new
translation technology-¡TradúceloAhora! (Translate Now!). This software translates e-mails and Web pages bi-directionally (English-to-Spanish and
Spanish-to-English). SPAN has been able to provide this software through a grant from IBM. This technology helps parents that do not speak English
interact with the people who teach and care for their children. More information is available on the SPAN
website.
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Reports
Health Disparities and Access to Care for CSHCN
The Equality of Health for CSHCN: Contributing Factors and Help for
Families and Communities PDF provides an overview of the literature, demographics, and references for families, services providers, and
communities on health disparities and access to care for children with special health care needs (CSHCN). The brief, produced by Champions for
Inclusive Communities, defines ethnicity and health disparities and identifies factors contributing to health disparities for ethnic minority CSHCN.
These factors include poverty, insurance and underinsurance, partnership in decision-making, access to care, and culture and communication or language
barriers. Additional topics include lessons learned and implications for communities. Resources for families, service providers, and communities are
presented, along with a list of the articles reviewed and referenced in the brief.
National Survey Data on Access to Care and Children's Health Insurance Status
The PDF report A Needed Lifeline: Chronically Ill Children and Public Health Insurance
Coverage discusses findings from a state-by-state analysis of children's access to health care services, especially children with special health
care needs (CSHCN). The report was prepared for the Robert Wood Johnson Foundation by researchers at the University of Minnesota's State Health
Access Data Assistance Center. It contains data on the proportion and number of children (from birth through age 17) by insurance status, including
those who have public vs. private insurance, those who visited the doctor's office within the past 12 months, and those who received a well-child
checkup within the past 12 months. Data on the numbers and percentages of CSHCN are also provided by insurance status and state and include
information on those whose care was delayed or foregone, those who have a personal doctor, and those who did not receive all needed mental health
care.
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CSHCN Data
Coverage and Financing for Care of Children and Youth with Special Health Care Needs -State at a Glance
This resource includes:
- State by state data on indicators of health coverage and financing for CYSHCN
- A detailed guide to interpreting and using the data
- Innovative practices by target population or financing strategy
- A user-friendly introduction to key health care financing strategies and related terms
From the Catalyst Center:
Improving Financing of Care for Children and Youth with Special
Health Care Needs, a National Center funded by the Maternal and Child Health Bureau.
Using Data from the National Survey of CSHCN
The purpose of The Data Resource Center for Child and Adolescent Health (DRC) is to advance the effective use of public data on the health and
health-related services for children, youth and families in the United States. The DRC does this by providing hands-on access to national, state, and
regional data findings as well as technical assistance in the collection and use of this data by policymakers, program leaders, advocates and
researchers in order to inform and advance key child and youth health goals.
- Find state results for geographic areas: New profiles compare results for rural,
suburban and urban areas within a state using data from the 2005/2006 National Survey of Children with Special Health Care Needs.
- Generate condition-specific reports: Compare health outcomes and system
performance for CSHCN with and without selected chronic conditions, including asthma, ADHD, Down Syndrome, Autism or ASD and more.
- Access State Ranking Maps for CSHCN: See how your state ranks in comparison to other states
on health indicators and recommended CSHCN outcomes set forth by the Maternal and Child Health Bureau. Download these maps for use in grant writing,
presentations, newsletters, etc.
2008 Kids Count Data Book
Data from the Annie E. Casey Foundation's 2008 Kids Count Data Book are now available in an easy-to-use,
online database. Information is available on right start birth outcomes, education,
employment and income, health, health insurance, population and family characteristics, and poverty and youth risk factors. The Kids Count Data Center,
allows you to generate custom graphs, maps, ranked lists, and state-by-state profiles; or, download the entire data set as delimited text files.
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Resources for CSHCN Service Providers and Families
Outdoors for All
The Outdoors for All Foundation is a national leader and one of the largest nonprofit organizations providing year round instruction in outdoor
recreation for people with physical, developmental, and sensory disabilities. Outdoors for All's year round programming includes day camps,
snowboarding, snowshoeing, cross country and downhill skiing, cycling, hiking, river rafting, canoeing and kayaking, day camps, water skiing,
rock-climbing, camping and Custom Events. For more information, visit their website or call 206-838-6030 (Puget
Sound Region).
Children with Special Needs Toolkit for Military Families
The Department of
Defense Special Needs Tool Kit is designed to help military families and others with special needs children navigate the maze of medical and
special education services, community support and benefits and entitlements. The Toolkit includes six modules:
- Birth To Age Three
- Special Education
- Health Benefits
- Families in Transition
- Advocating for Your Child
- Resources and Support
- Records and Tools
Community Services Locator Tool-New Edition
The Community Services Locator is an online directory for finding services
for children and families in the communities in which they live. Service providers and families may use the locator, produced by the Maternal Child
Health Library. Topics include education and special needs, health and wellness, mental health and well-being, family support, parenting, child care
and early childhood education, and financial support.
Grant Opportunity: Foundation for the Challenged
Qualified individuals can apply through family, case workers or guardians to the Community Living Fund to receive up to $1,000 to purchase lifestyle
necessities. Grants made to individuals have been used to cover the cost of specialized mobility devices, home-related expenses that occur with moving
into a new community such as rent and utility deposits, and basic home furnishings not covered under government programs. In addition, grants have
been made to maintain an individual's ability to live more independently by covering the cost of home modifications such as wheelchair ramps and hand
rails. Grants are provided four times a year to applicants that meet funding criteria and submit a grant application. Visit the
Foundation For the Challenged website to learn more and to get an application.
Online Health Literacy Training Available
The National Committee for Quality Assurance (NCQA) has announced a new online course in
Health Literacy. This free 5 hour health care provider course, "Unified Health Communication 101: Addressing Health Literacy, Cultural Competency,
and Limited English Proficiency," can be taken for credit (CEU/CE, CHES, CME, CNE) or not for credit. The course was designed and developed by the
Health Resources and Services Administration (HRSA), and is jointly sponsored by NCQA.
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Special Education Resources
The Special Education Support Center
This website provides information and support to families, educators and community members who have an interest in locating and understanding special
education services in Washington State. In addition, the site provides information on instructional practices, agency services for students with
disabilities and listings of post-high school opportunities for students. Visit the website or
call toll-free 1-877-843-1343.
Key Terms in Special Education
Special education is full of terms that people often use in writing and in conversation. NICHCY (National Dissemination Center for Children with
Disabilities) provides a handy reference page to special education
terminology to help readers quickly connect with the meaning of pivotal words and phrases in the field.
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Journal Articles
Antonelli, R.C., Stille, C.J., Antonelli, D.M. Care Coordination
for Children and Youth with Special Health Care Needs: A Descriptive, Multisite Study of Activities, Personnel Costs, and Outcomes. Pediatrics,
Vol. 122 No. 1 July 2008, pp. e209-e216
Benedict RE. Quality Medical Homes: Meeting Children's Needs
for Therapeutic and Supportive Services. Pediatrics. 2008 Jan; 121(1):e127-34. Epub 2007 Dec 3.
Cohen E, Friedman J, Nicholas DB, Adams S, Rosenbaum P.
A Home for
Medically Complex Children: The Role of Hospital Programs. J Healthcare Qual. 2008 May-Jun; 30(3):7-15.
Lotstein DS, Inkelas M, Hays RD, Halfon N, Brook R. Access to Care for Youth With Special Health Care Needs in the Transition to Adulthood.
J Adolesc Health. 2008 Jul;43(1):23-9.
Tang MH, Hill KS, Boudreau AA, Yucel RM, Perrin JM, Kuhlthau KA.
Medicaid
Managed Child Care Problems and Employment Among Families with Preschool-aged Children with Autism in the United States. Pediatrics. 2008 Jul;
122(1):e202-8.
Wood DL, McCaskill QE, Winterbauer N, Jobli E, Hou T, Wludyka PS, Stowers K, Livingood W. A
Multi-Method Assessment of Satisfaction with Services in the Medical Home by Parents of Children and Youth with Special Health Care Needs
(CYSHCN). Matern Child Health J. 2008 Feb 15. [Epub ahead of print]
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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.
