Minnesota Title V MCH Needs Assessment Fact Sheets
Children with Special Health Needs
Size of the Problem
Adopting healthy behaviors such as eating nutritious foods, being physically active, regular health screening, appropriately managing one's health condition, avoiding injuries and managing stress, can prevent or control the devastating effects of many diseases. While there is a substantial body of literature on health promotion for the general population and for people with chronic disease (e.g., diabetes, arthritis, asthma), the vast majority of these programs have not been tailored to meet the specific needs of people with physical and/or cognitive disabilities.
There are an estimated 160,000 children and youth with special health care needs in Minnesota. Approximately 82,000 of these children have an elevated need for medical, mental health or educational services, and an estimated 29,240 have functional limitations.
A primary focus of health promotion for people with disabilities is on the prevention or reduction of secondary conditions associated with the primary impairment. The impact of secondary conditions on the lives of people with physical disabilities results in an increase in the severity of disability and erodes participation in community activities.
Studies of various sub-populations of children and youth with special health care needs provide some insight into issues related to health promoting behaviors. People with disabilities, for instance, are less likely to engage in regular moderate physical activity than people without disabilities, yet they have similar needs to promote their health and prevent unnecessary disease.
A review of 10 years of injury data comparing children with and without cognitive impairments prior to injury, found that children with cognitive impairments are more likely to be individuals with self-inflicted injuries, are more likely to be injured as pedestrians and are less likely to be injured in sport activities, and are more likely to sustain injuries to multiple body regions and the head, and to be severely injured.
Adolescents with chronic illness are at greater risk for disordered eating than youth without chronic illness, after controlling for sociodemographic variables.
Acute illness related to chronic health conditions accounted for 45% unscheduled ICU admissions during a 1-year study. Thirty-two percent of admissions that were related to chronic conditions were judged to have been potentially preventable. Fifty-six percent of potentially preventable events involved the physical or social environment and decisions made by the family, whereas 64% could be attributed to health care system factors.
Compared with other populations, adults, adolescents, and children with mental retardation experience poorer health and more difficulty in finding, getting to, and paying for appropriate health care. These challenges are even more daunting for people with mental retardation from minority communities with many cultures and languages and whose culture and primary language may not be reflected in available health services. As with many other disabling conditions, the multiple disorders associated with mental retardation are found disproportionately among low-income communities that experience social and economic disparities when they seek health care. 
Additional concerns related to children and youth with special health needs, particularly related to those with developmental disabilities, include: 
- Providers may not screen for dietary and nutritional status, exercise habits, oral disease (e.g., periodontal disease), tobacco and alcohol use, depression and other mental illness, cancer (mammograms, Pap smears, prostate cancer), abuse or neglect, domestic violence, and occupational hazards.
- Providers may not have the specialized training and equipment needed to provide preventive interventions, such as oral prophylaxis and applications of protective materials to tooth surfaces.
- Providers may overlook opportunities to educate individuals and families in health-promoting behaviors such as exercise.
- Training and education in self-care may not be offered to individuals with mental retardation. Opportunities to provide such training and education in community settings, such as special education programs, may be overlooked.
- Preventive interventions may not be designed to enable an individual to understand or participate in health-promoting behaviors, such as management of diabetes and routine oral hygiene.
- Job coaches and employment counselors may not be trained to identify and advocate against unsafe workplace conditions, such as exposure to toxic substances, repetitive motion injuries, and others. Occupational hazards may be viewed as a lower priority than securing employment for an individual with mental retardation.
In Minnesota, an estimated $495 million were spent during 2000 treating diseases and conditions that would be avoided if all Minnesotans were physically active. $383 million for hospital, outpatient, and professional expenses $112 million for outpatient prescription drugs. This amount represents over 100 dollars annually for every man, woman, and child living in Minnesota.
Secondary conditions resulting from a physical or cognitive impairment (e.g., paralysis, weakness, fatigue, spasticity, decreased cognition, maladaptive behavior) often require certain adaptations to various health promotion interventions to assure successful integration and outcomes.
- Environments and facilities conducive to being physically active must be available and accessible to people with disabilities, such as offering safe, accessible, and attractive trails for bicycling, walking, and wheelchair activities.
- Individuals with chronic illnesses and disabilities must be involved at all stages of planning and implementing community physical activity programs.
- Health professionals will have to raise their level of awareness and understanding integrating people with physical and cognitive disabilities into their existing programs.
Three university based health promotion programs "Living Well With Disability", "Wellness for Women With Polio" and "The Center on Health Promotion and Disability" integrate various aspects of health promotion for adults with disabilities. All models could be adapted to serve children and youth with special health care needs.
Minnesota's Wilderness Inquiry Program promotes healthy lifestyles, facilitates community integration, and encourages stewardship of the environment for people of all ages, backgrounds and abilities. It serves approximately 10,000 people per year about half of whom have a disability. Half of all served are children and youth. Specific outdoor adventure programs for families who have a chronically ill or disabled child and for youths with disabilities are available.
The provision of quality, preferably daily, K-12 accessible physical education classes for children and youths with disabilities is a priority for many. The Brockport Physical Fitness Test (BPFT) is a criterion-referenced health-related test of physical fitness appropriate for use with youngsters with disabilities. The test recommends test items and health-related criterion-referenced standards for youngsters with mental retardation, spinal cord injuries, cerebral palsy, blindness, congenital anomalies and amputations and recommends a process to develop tests appropriate for youngsters with other disabilities and health-related needs.
A medical home provides comprehensive health care for infants, children, and adolescents with special health needs that includes prevention and health promotion by sharing clear and unbiased information with the family about the child's medical care and management and about the specialty and community services and organizations they can access. Provision of primary care, including but not restricted to acute and chronic care and preventive services, including breastfeeding promotion and management, immunizations, growth and developmental assessments, appropriate screenings, health care supervision, and patient and parent counseling about health, nutrition, safety, parenting, and psychosocial issues. 
Progress is being made towards improving the health of people with physical and cognitive disabilities. For the first time since the federal government started tracking the health of Americans over 20 years ago, the Healthy People 2010 report targets people with disabilities as a subgroup of the population. A chapter entitled, Disability and Secondary Conditions, has been added to the document to reflect the growing needs of people with disabilities. Innovative strategies for improving health, preventing complications associated with the disabling condition, and adequately preparing individuals with physical or cognitive disabilities to understand and monitor their own health, has emerged as an important public health priority.
In addition to the US Department of Health and Human Services efforts, providing access to people with disabilities, people of color and other "non-traditional" users of outdoor recreation is a mandated goal of every federal land management agency.
In Minnesota, there are a number of health promotion programs available, but those programs do not generally target children with disabilities or chronic illnesses.
1. Rimmer, JH, Braddock, D., "Health
Promotion for People with Physical, Cognitive and Sensory Disabilities:
An Emerging National Priority". National Center on Physical Activity
and Disability. University of Illinois at Chicago. http://www.ncpad.org/wellness. [Attn: Non-MDH Link]
Updated 7/8/04. Accessed 8/6/04.
2. Centers for Disease Control and Prevention,National Center for Health Statistics, State and Local Area Integrated Telephone Survey, National Survey of Children with Special Health Care Needs, 2001.
3. Rimmer and Braddock
4. Braden, MD, K. et al. Injuries to Children Who Had Pre-injury Cognitive Impairment A 10-Year Retrospective Review. Arch Pediatric Adolescent Med. 2003;157:336-340
5. Neumark-Sztainer, D, Story, M., et al "Disordered Eating Among Adolescents With Chronic Illness and Disability The Role of Family and Other Social Factors". Arch Pediatric Adolescent Med. 1998;152:871-878.
6. Dosa, Nienke P., Boeing, Nancy M., "Excess Risk of Severe Acute Illness in Children With Chronic Health Conditions". PEDIATRICS Vol. 107 No. 3 March 2001, pp. 499-504
7. Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation. Report of the Surgeon General's Conference on Health Disparities and Mental Retardation
10. Family Health Division. "Health Care Costs of Physical Inactivity in Minnesota." Minnesota Department of Health.5/15/2002.
11. Rimmer and Braddock
12. American Academy of Pediatrics, Committee on Community Health Services. The pediatrician's role in community pediatrics. Pediatrics.1999; 103 :1304-1306.
13. American Academy of Pediatrics. (2002). "The medical home." Pediatrics. Vol. 110:184-6.
14. "The medical home." (2002) Pediatrics. Vol. 110:184-6.