Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs

Social Determinants of Health and Well-Being

Summer 2004

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Size of the Problem

There are an estimated 161,000 children and youth with special health care needs living in Minnesota. Some have chronic illnesses; some are disabled; some have conditions related to developmental, emotional or behavioral conditions.

The health and well-being of children and youth with special health care needs have been addressed primarily in a medical care, rehabilitation, and long-term care financing context. Four main misconceptions emerge from this contextual approach: (1) all children with special health care needs automatically have poor health, (2) public health should focus only on preventing chronic illnesses and disabling conditions, (3) the environment plays no role in the disabling process.[1]

What percentage of children and youth (0-17 years old) live in households with Incomes above and below the federal poverty level (FPL)?
 
0-99% FPL
100-199% FPL
200-399% FPL
400% FPL or greater
Total %
Non-CYSHCN
9
15
41.9
34.1
100
CYSHCN
7.8
19.5
36.2
36.5
100
Function Limitations
16.3
22.8
19.5
16.7
 
Emotional Behavioral Developmental Condition
22.9
38.7
32.3
22.3
 

Health is more than not being sick. Health is a resource for everyday life - the ability to realize hopes, satisfy needs, change or cope with life experiences, and participate fully in society. Health has physical, mental, social and spiritual dimensions. Health is a product of individual factors (such as genes, beliefs, coping skills, and personal behaviors) combined with collective conditions (factors in the physical, social and economic environment).[2]

Social determinants of health are factors in the social environment that contribute to or detract from the health of individuals and communities. These factors include, but are not limited to, socioeconomic status, transportation, housing, access to services, discrimination by social grouping (e.g., race, sex, or class), or social or environmental stressors. While not specifically developed in the context of children and youth with special health needs, when this population is placed in the context of the key aspects known to affect health, the risks for poor health and well-being become clear.

Seriousness

People with a higher income generally enjoy better health and longer lives than people with a lower income. The rich are healthier than the middle class, who are in turn healthier than the poor. While children and youth with special health needs in general come from households with similar incomes to children without special needs, those children with functional limitations and those with conditions that are emotional, developmental or behavioral in nature are much more likely to live in poorer households.[3]

Among children with disabilities aged 3 to 21 in the United States, 28% are living in poor families. By contrast, among the children without disabilities in the same age range, only 16% are living in poverty. The impact of poverty on these families is felt in five dimensions of family life: health, productivity, physical environment, emotional well-being, and family interaction. Poverty permeates several domains of family quality of life. Thus the authors of the review of literature suggest that a single action or step cannot solve problems. "There is a need for comprehensive and systematic family support to meet these multiple needs."[4]

People are healthiest when they feel safe, supported and connected to others in their families, neighborhoods, workplaces and communities. Fear or perceived negative attitudes, more practical obstacles such as lack of transportation or lack of income, or most importantly, the lack of encouragement from community organizations all contribute to decreased community connectedness for people with disabilities. Based on its own survey in the year 2000, National Organization on Disabilities reported that "fully 4 out of 10 people (40%) with severe disabilities are not at all involved in their communities, almost twice the percentage for people without disabilities (21%)."

Students with special health care needs in Minnesota are much more likely to be dissatisfied with their personal lives than their same aged peers. (29.1% v. 17.1%) and are more likely to believe their friends don't care about them to any great extent. (16.5% v. 9.1%). Students with special health needs are less likely to feel safe at home, in their neighborhoods or in their schools than are their peers. (MNSS 1998.)

Interventions

Research at the University of York has highlighted services that address the housing needs of disabled children and their families in a positive way, and that have been recommended by families themselves. Research has drawn out a number of underlying principles and themes that are important in meeting the housing needs of this group. Housing for Disabled Children: A Checklist for Change suggests awareness, access, a range of service delivery options, and specific strategies at the policy level.[5]

The Centers for Disease Control and Prevention Task Force on Community Prevention recommends housing subsidy programs for low-income families, which provide rental vouchers for use in the private housing market and allow families choice in residential location. This recommendation is based on outcomes of improved neighborhood safety and families' reduced exposure to violence.[6]

The Community Partnership Program is a national network of more than 1,000 towns, townships, cities and counties. The CPP focuses citizen energy on eliminating barriers that keep people with disabilities from participating fully within the life of the community where they live. "Best practices" information on disability programs and activities in communities throughout the U.S., guidance and information on expanding the participation of people with disabilities in employment, education, voting and political participation, transportation, religious worship, and in recreational, social and cultural activities and Information on disaster planning and preparation for people with special needs are available through CPP.

Outreach to persons with disabilities by local churches, synagogues, mosques, and other place of worship, and by other local organizations that accommodate group activity, can make a real difference in the lives of persons with disabilities, enabling them to participate in community life and to achieve a higher level of satisfaction with their lives.[7]

The Religion and Disability Program of the National Organization on Disability (N.O.D.) is an interfaith effort, urging national faith groups, local congregations and seminaries to identify and remove barriers of architecture, communications, and attitudes. The program helps to sponsor That All May Worship conferences in the communities of America. These conferences bring together people with disabilities and religious leadership to plan improved access - both physical and spiritual - in houses of worship.

In the review of literature (Park, Turnbull and Turnbull), the authors found that there is evidence that approaches that are promising share these characteristics:

  • A single point of entry into the service system.
  • Coordinated delivery of services
  • Recognition of the holistic needs of students and families (especially ones facing poverty)
  • Innovative and nontraditional approaches to improve academic outcomes including extended school day programs.
  • Links to future job opportunities.[8]

Status

The term "health disparity" means a difference in health status between a defined portion of the population and the majority. Disparities can exist because of socioeconomic status, age, geographic area, gender, race or ethnicity, language, customs and other cultural factors, disability or special health need.

The Minnesota Health Improvement Partnership outlined key aspects of the social and economic environment that affect health including income, education, and income distribution; social norms; social support and community cohesion; living conditions such as availability of affordable housing, transportation and nutritious foods; employment and working conditions; and culture, religion and ethnicity.[9]

The elimination of health disparities, which is dependent upon improvement in the social conditions impacting health, is one of two overarching goals of the Healthy People 2010 initiatives through the US Department of Health and Human Services. It is also an overarching priority for the Minnesota Department of Health. In Minnesota, the focus of health disparities efforts is populations of color and American Indian populations. Little work has been done to date on disparities based on the presence or absence of a special health care need.


1. Adapted from: Healthy People 2010. "Disability and Secondary Conditions". Centers for Disease Control and Prevention.
2. Minnesota Department of Health. "A Call To Action: Advancing Health For All Through Social and Economic Change." Minnesota Health Improvement Partnership. April 2001.
3. 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
4. Park, J.; Turnbull, A; Turnbull, HR, "Impacts of Poverty on Quality of Life in Families of Children with Disabilities." Exceptional Children. Vol. 68, No. 2: 1151-170.
5. Joseph Rowntree Foundation. Good practice in housing disabled children and their families. Findings. Nov. 2002. www.jrf.org [Attn: Non-MDH Link] Accessed 8/6/04.
6. Centers for Disease Control and Prevention. Community Interventions to Promote Healthy Social Environments: Early Childhood Development and Family Housing A Report on Recommendations of the Task Force on Community Preventive Services. Morbidity and Mortality Weekly Report. February 1, 2002 / 51(RR01);1-8
7. Hendershot, G., "Community Participation and Life Satisfaction." National Organization on Disability. 5/29/2003. http://www.nod.org/index.cfm?fuseaction=page.viewPage&PageID=1129. [Attn: Non-MDH Link]
8. Park, J.; Turnbull, A; Turnbull, HR, "Impacts of Poverty on Quality of Life in Families of Children with Disabilities." Exceptional Children. Vol. 68, No. 2: 1151-170.
9. MDH "Advancing Health For All Through Social and Economic Change."