Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs

Provider Capacity & Education

Summer 2004

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Size of the Problem

There are nearly 161,000 children and youth with special health needs in Minnesota. More than 200 chronic conditions and disabilities affect children and youth, including asthma, diabetes, sickle cell disease, spina bifida, cerebral palsy, epilepsy and autism. Children with special health needs live, learn, work, play and actively participate in community life throughout Minnesota. In doing so, they interface with a variety of adults - teachers, physicians, dentists, nurses, therapists - who may or may not understand the child's health condition or know how to effectively manage the care needs of the child.

A national survey of pediatric generalists revealed that nearly one-fourth of pediatricians (23%) think they are inadequately prepared to provide cost-effective medical care or coordinate patient care with community services and resources, and 16% say they are poorly prepared to care for patients from different cultures.[1]

The Association of American Medical Colleges (AAMC) has a database with data on 50% of all medical schools across the U.S. and Canada. 70 schools were polled to determine which have curricula regarding disability. It was found that only 26 medical schools provided sessions (i.e., lectures, labs, small group discussion) covering disability topics, only 20 schools provided sessions with disability terms in the title of the session, and only 18 schools provided courses which cover disability-related topics during the course (some schools overlapped these three categories).

Unfortunately, many times when this education is offered as an elective, busy training and practicing professionals opt not to participate.[2]

A survey of general dentists revealed that only 25% of practicing dentists had had experience with children with special health care needs in dental school.[3]

Teachers who have little or no knowledge of the health needs of children with chronic illnesses and disabilities are now being asked to assume responsibility for areas previously the domain of health care professionals. Teachers are expressing anxiety, dismay, fear and resistance. An examination of curricula required for education majors revealed there are no requirements for CPR, health care or first aid.[4]

Education about nursing care of patients with intellectual or developmental disabilities is limited in basic nursing education programs and for nurses who are in practice.[5]


Failure to assure a competent personal health workforce can in essence, deny access to services for children with special health care needs.

Medical errors or miscommunication on the part of health professionals as a result of poor preparation to care for this population can result in ineffective treatment, unnecessary and expensive hospitalization, or death.

In addition, children who have special health needs who are under the supervision of non-health professionals, such as teachers or child care providers, who lack adequate training or support, leads to poor health outcomes for the children and results in frustration on the part of teachers, classmates and care providers.


There are three basic approaches to capacity building - those that focus on individual development, those that organize efforts at the community level, and those that undertake statewide initiatives.[6]

Individual capacity-building activities include both formal and informal models of continuing education. Many capacity-building models embrace a formal structure that typically relies on academic institutions to provide structured, continuing education programs targeting working professionals. Some of these formal approaches also include less structured elements in their programs, such as networking and mentoring opportunities to enhance the educational process. Other models embrace a more informal learning structure that creates and makes available educational resources which professionals access as they choose.

Community capacity-building includes information sharing, conducting community-wide assessments of services and needs, facilitating training experiences in communities, collaboration and cooperation among community entities, increasing access to medical professionals in communities, and the provision of technical assistance for data analyses to communities.

State capacity building can include many elements utilized by individual and community capacity-building models, but on a larger scale. Infrastructure and network development and strategic planning are typically accomplished as statewide activities, whether directed by state government agencies, academic institutions, or a formal statewide association of concerned organizations. Statewide needs assessments can help to inform these activities, as well as indicating the most useful foci for programs increasing individual and community capacities. State agencies can further support individual capacity-building programs through formal accreditation and certification requirements.

Pennsylvania's human services agency launched a pediatrician-centered train-the-trainer approach to enhance the skills of community-based primary care providers and other health care personnel in developmental screening, collaborating with families, care coordination, and working within the managed care environment. During the first three-and-a-half years of the program's operation, the 24 participating pediatricians hosted over 40 local training sessions. The project administrators believe that at least 500 pediatricians and other providers received training during this period. The project cost approximately $100,000 annually and was funded through state resources.

The Rural Health Education Network at the University of Nebraska Medical Center was instrumental in developing both the Central and Northern Nebraska Area Health Education Centers (AHECs). More centers are planned around the state. Both Nebraska AHECs focus on educating high school students about careers in health care and on providing continuing education for health care professionals.


Assuring a competent public health and personal health workforce is one of 10 essential public health services. This service includes education and training for personnel to meet the needs for public and personal health service; efficient processes for licensure of professionals and certification of facilities with regular verification and inspection follow-up; adoption of continuous quality improvement and life-long learning within all licensure and certification programs; active partnerships with professional training programs to assure community-relevant learning experiences for all students; and continuing education in management and leadership development programs for those charged with administrative/executive roles.

1. Johnson R., Charney E., et al., Final Repot of the FOPE II Education of the Pediatrician Workgroup. Pediatrics Vol 106 No 5, (1175-98). Nov 2000
2. TRAINING OF HEALTH CARE PROFESSIONALS ON ISSUES FACING PEOPLE WITH DISABILITIES FACT SHEET. American Association on Health and Disabilities. www.aahd.us. [Attn: Non-MDH Link] Accessed 8/8/04.
3. Casamassimo PS, Seale NS, Ruehs K. "General dentists' perceptions of educational and treatment issues affecting access to care for children with special health care needs." J Dent Educ. 2004 Jan;68(1):23-8.
4. Barrett, J. C. (2001) Children with Special Healthcare Needs in the Classroom. Online Journal of Rural Nursing and Health Care, 1(3) [Online]. Available: http://www.rno.org/journal/issues/Vol-1/issue-3/Barrett.htm. [Attn: Non-MDH Link] Access 8/8/04.
5. Hahn JE. Addressing the need for education: curriculum development for nurses about intellectual and developmental disabilities. Nurs Clin North Am. 2003 Jun;38(2):185-204.
6. MCH Capacity Building Models: A Summary. University of Nebraska Public Policy Center. December 2003. http://ppc.unl.edu/publications/documents/mch_capacity.pdf [Attn: Non-MDH Link] Accessed 8/8/04.