Children with special health care needs (CSHCN) are defined as children who have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally. (McPherson M et al. 1998.)  About 13% of US children and adolescents are reported to have a special health care need.(VanDyck PC et al. 2004)

ASTDD receives funding from HRSA, Maternal and Child Health Bureau to initiate activities to promote improved coordination of oral health activities for CSHCN in states and territories. Efforts particularly focus on increasing collaborative efforts among state MCH directors, CSHCN directors and Oral Health program directors to influence health care policies, programs and funding.

ASTDD provides financial and technical support to states to conduct forums and follow-up activities to improve the oral health status of CSHCN.  ASTDD initiated this project to promote greater awareness of the unique oral health challenges faced by CSHCN. The forums bring together a wide range of oral health advocates. In addition to identifying barriers to dental care, the forums result in an action plan of strategies for improving access to dental services and improving oral health status of CSHCN. The box to the right provides links to Final Reports and Action Plans as states and territories submit them. Contact Dr Jay Balzer at jbalzer@qwest.net  for further information.

National, State and Local Partners

HRSA MCHB, Division of Services for Children with Special Health Needs (ftp://ftp.hrsa.gov/mchb/factsheets/dschsn.pdf)  plays a national leadership role in developing and implementing comprehensive, community-based, family-centered, culturally competent, coordinated systems of care for CSHCN and their families. Programs fall under two branches, the Integrated Services Branch and the Genetics Services Branch, and are described in the fact sheet in the above link. A key area for oral health integration are the Six Critical Indicators of Progress (http://www.mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm).

State Title V CSHCN Programs and Directors: https://performance.hrsa.gov/mchb/mchreports/link/state_links.asp each state Title V program must allocate 30% of its funding to CSHCN. This link provides a searchable list of all state/territorial MCH and CSHCN directors.

Maternal and Child National Oral Health Resource Center (NOHRC) (http://www.mchoralhealth.org) is funded by HRSA MCHB and collaborates with numerous agencies and organizations to gather, develop and share high-quality information and materials through their center and website and via presentations/exhibits at meetings. They have gathered and developed a number of materials related to CSHCN, some of these in cooperation with ASTDD, that are available via their website.

National Oral Health Policy Center (NOHPC) (http://www.healthychild.ucla.edu/OralHealth.asp) is funded by HRSA MCHB to further the understanding of oral health care financing, workforce and disparities in order to inform policy development and improve the oral health status of vulnerable populations. Some of the resources and links on the website relate to CSHCN.

CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) (http://www.cdc.gov/ncbddd) focuses on identifying the causes of birth defects, developmental disabilities, helping children to develop and reach their full potential and promoting health and well-being among people of all ages with disabilities. They include a section on oral health on their website.

NIDCR National Oral Health Information Clearinghouse (NOHIC) ( http://www.nidcr.nih.gov/HealthInformation/SpecialCareResources) produces and distributes patient and professional education materials and sponsors the Oral Health Database(http://www.nidcr.nih.gov/HealthInformation/SpecialCareResources/OralHealthDatabase.htm), which includes bibliographic citations, abstracts and availability information on a number of special care related topics.

Special Care Dentistry (SCD) (http://www.scdonline.org)   has as a goal to act as a central focus for diverse individuals and groups with a common interest in oral health for people with special needs and direct its resources accordingly. It also serves as an umbrella agency for three different membership organizations: The Academy of Dentistry for Persons with Disabilities, American Society for Geriatric Dentistry, and American Association of Hospital Dentists.

Special Olympics Health Athletes includes the Special Olympics Special Smiles Program (http://www.specialolympics.org) that provides oral screenings, oral health education, and information concerning follow up care to persons with special needs and the dental community. There are coordinators in each state.

Family Voices (http://www.familyvoices.org)  is a national grassroots network of families, advocates and others that promotes the inclusion of all families as decision makers at all levels of health care and support essential partnerships between families and professionals.

Resource Materials  

ASTDD support for state CSHCN Oral Health Forums Interim Evaluation Summary March 2009

Increasing Access to Oral Health Care: Medicaid Approaches for Individuals with Special Health Care Needs Web Conference held Tuesday, August 9, 2005

Oral Health for Children and Adolescents with Special Health Care Needs: Challenges and Opportunities.(fact sheet) http://www.mchoralhealth.org/PDFs/SHCNfactsheet.pdf

Strategies for Improving the Oral Health System of Care for Children and Adolescents with Special Health Care Needs (tipsheet) http://www.mchoralhealth.org/PDFs/SHCNtipsheet.pdf

Oral Health Services for Children and Adolescents with Special Health Care Needs (resource guide) http://www.mchoralhealth.org/PDFs/SHCNtipsheet.pdf

Children with Special Health Care Needs: Patient, Professional and Systems Issues. (background paper by Casamassimo) http://www.cdhp.org (search on publications and resources A-Z under children with special health care needs)

The National Survey of Children with Special Health Care Needs Chartbook 2001. http://www.cdc.gov/nchs/slaits.htm.

Proceedings. Promoting Oral Health of Children with Neurodevelopmental Disabilities and Other Special Health Needs. http://depts.washington.edu/ccohr/resource/LEND_2001.pdf

Practical Protocols for the Prevention of Dental Disease in Community Settings for People with Special Needs. Special Care in Dentistry. 23(5):157-188, 2003.
Practical Oral Care for People with Developmental Disabilities.(Series of fact sheets and booklets available for CDE credits.) https://ice.iqsolutions.com/nohic/pubsorder/orderpubs.asp#3

Oral Conditions in Children with Special Needs:  A Guide for Health Care Providers. (color photos with counseling messages)  https://ice.iqsolutions.com/nohic/pubsorder/orderpubs.asp#3 .  

Promoting the Oral Health of Children with Special Health Care Needs. Opportunities for Increased Collaboration Between State Oral Health and CSHCN Programs. http://www.astdd.org/docs/CSHCNassessment2_11.pdf    

Kansas Pre-appointment Form for CSHCN first dental visit   

Oklahoma tool kit for Oral Health Care for CSHCN. A Guide for Family Members, Care givers
and Dental Providers