Children with Special Health Care Needs

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)

CSHCN State Forums: With HRSA grant support, ASTDD partnered with states to conduct CSHCN Oral Health Forums.  These forums were designed to improve access to dental care for CSHCN who face barriers. The forums brought together a wide range of interested parties including dentists and medical providers, state Oral Health and CSHCN directors, child advocacy organizations, and families of CSHCN. State Action Plans to guide future activities were developed. The proceedings of these forums can be viewed by clicking on the links in the box to the right.

Best Practices Report: Oral health of children, adolescents and adults with special health care needs

This report describes the characteristics of individuals with special health care needs, barriers to obtaining dental care, a strategic framework to improve their oral health, authoritative guidelines and recommendations, research evidence, and examples of state and community programs that promote the oral health of people with special health care needs.

Collaboration with the Maternal and Child Health Oral Health Resource Center: ASTDD has a long-standing consultative relationship with the National Maternal and Child Oral Health Resource Center to develop educational materials to promote the oral health of CSHCN and their families. Some examples of materials developed as a result of our collaboration are listed below:

• Fact Sheet: Oral Health for Children and Adolescents with Special Health Care Needs – Challenges and Opportunities

• Resource Guide:  Oral Health Services for Children and Adolescents with Special Health Care Needs

• Policy Brief:  Promoting the Oral Health of Children with Special Health Care Needs-In Support of the National Agenda

National Center on Early Childhood Health and Wellness: ASTDD works with the National Maternal and Child Oral Health Resource Center and other partners of the National Center to promote the oral health of Head Start children and their families.

One example of collaboration between ASTDD and the National Center on Early Childhood Health and Wellness is the development of the "Brush Up on Oral Health" series of newsletters that provide oral health information to Head Start staff and parents (see link to newsletter archive: Some of the newsletters specifically address oral health issues concerning children with disabilities.

Autism Spectrum Disorder (March 2015)

Helping parents find a dental clinic for children with disabilities (January 2015)

Promoting the oral health of children with disabilities (July 2013)

Please contact Jay Balzer at: balzerjay@gmail.com for further information about ASTDD CSHCN activities.

National, State and Local Partners

The Maternal and Child Health Bureau (MCHB) of HRSA administers the Title V Maternal and Child Health Services Block Grant that provides funding for services for CSHCN.  MCHB has published the National Survey of Children with Special Health Care Needs (NS-CHSCN) that describes state and national data about CSHCN, including oral health data.

National Maternal and Child Oral Health Policy Center 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. The Center has produced a policy brief addressing the oral health of CSHCN in health care reform: Opportunities in Health Care Reform: Addressing the Oral Health of Children with Special Health Care Needs.

CDC National Center on Birth Defects and Developmental Disabilities 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. 

Use the search term "oral health" to find useful resources about the oral health of people with disabilities.

NIDCR has a Special Care Database that contains hundreds of articles concerning the oral health of individuals with special needs. Additional NIDCR information.

Special Care Dentistry (SCD) is a unique international organization of oral health professionals and other individuals who are dedicated to promoting oral health and well being for people with special needs.  SCDA has 3 component councils that represent its diverse constituency: Council of Hospital Dentistry (previously, the American Association of Hospital Dentists, AAHD), the Council of Dentistry for People with Disabilities (previously, the Academy of Dentistry for Persons with Disabilities, ADPD) and the Council of Geriatric Dentistry (previously, the American Society for Geriatric Dentistry, ASGD).

Special Olympics Healthy Athletes includes the Special Olympics Special Smiles Program 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 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.

Association of Maternal and Child Health Programs (AMCHP)
The Association of Maternal & Child Health Programs is a national resource, partner and advocate for state public health leaders and others working to improve the health of women, children, youth and families, including those with special health care needs. Oral health is an important issue for AMCHP, see article in AMCHP Pulse - July/August 2015:  Real Life Stories:  CYSHCN and Oral Health

Resource Materials

Bright Futures - Oral Health Pocket Guide

Children with Special Health Care Needs: Patient, Professional and Systems Issues. (background paper by Casamassimo)

CMS Brochure for parents on dental care for Children with Special Health Care Needs

Georgetown Law: Oral Health Convening Focusing on CSHCN - The Georgetown Health Justice Alliance convened an interdisciplinary group of stakeholders to discuss barriers to dental care for CSHCN in the District of Columbia and to brainstorm solutions. The report discusses strategies in areas including Transportation, Financial Incentives, Case Management and School-Based Health Centers (March 2018).

Kansas Pre-appointment Form for CSHCN first dental visit

Key Facts: Oral health care for children and adolescents with special health care needs

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

Opportunities in Health Care Reform: Addressing the Oral Health of Children with Special Health Care Needs(Sept. 2011)

Oral Conditions in Children with Special Needs: A Guide for Health Care Providers. (color photos with counseling messages)

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.

Project SANDs - Special Adult Network of Dentists is a project of the Medical University of South Carolina, funded by the Duke Endowment, to connect adults with Special Needs to dental care providers. Visit the Special Needs Network of Dentist Database website to find a dental provider near you today.

Promising State Strategies to Improve the Oral Health of CYSHCN.
Vodicka, Pamela and Balzer, Jay. Presentation at 2011 AMCHP and Family Voices National Conferences. February 13, 2011.

Promoting the Oral Health of Children with Special Health Care Needs. Opportunities for Increased Collaboration Between State Oral Health and CSHCN Programs.

Special Care: An Oral Health Professional's Guide to Serving Young Children with Special Health Care Needs

Special Needs Fact Sheets for Providers and Caregivers. U of Washington School of Dentistry; DECOD program

Strategies for Improving the Oral Health System of Care for Children and Adolescents with Special Health Care Needs. (tip sheet)

CSHCN Forum Reports & Action Plans