Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs

Social Isolation of Children and Families

Summer 2004

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Size of the Problem

Students with special health care needs in Minnesota are much more likely to be dissatisfied with their personal lives (29.1%) than their same aged peers (17.1%). They are more likely than there peers to believe their friends don't care about them to any great extent. (16.5% and 9.1% respectively).

Parents of children with severe disabilities, and/or challenging behavior, may become isolated from family and social networks much earlier in their lives, because of their all-pervasive caring role. In later years their isolation may thus be even greater.

A study of parents caring for young adults with severe intellectual disabilities and challenging behavior at home revealed that at this stage very few had frequent or close contact with family outside the household, or with friends. Few of the families were part of an active social network, which provided even moral support. Such isolation, especially of mothers, can result not only from the fact that they are tied to the house, and because people tend not to want to visit such a household, but also because as their children grow up they have less and less in common with friends and relatives who have children of the same age.[1]

More than 20% of the households with children in Minnesota include at least one child with special health care needs.[2]

The pressing psychological, developmental, and social needs of these children have spurred the development of psychosocial interventions to address mental health problems and maximize the functioning of children with special health care needs and their families as productive members of society.[3]

Seriousness

Based on its own survey in the year 2000, National Organization on Disabilities reported "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%)."

As a part of the Title V Needs Assessment in 1999, youth in rural Minnesota in particular identified a need for establishing relationships with other youngsters who have conditions similar to theirs.

Although children themselves bear the major psychosocial burden of their chronic health condition, studies have documented increased psychological risk among their parents.[4] Families provide most of the care for their children with special health care needs. Family involvement in care can strengthen families and promote positive coping and interpersonal skills; however, there are negative impacts as well.

Secondary health conditions, such as depression, psychological distress, and declines in physical health are more common among parents and siblings of children with special health care needs. These conditions result, in part, from the increased financial strain, uncertainty about the future, social isolation, and fatigue often associated with meeting the child's care needs.[5] A child's serious illness or disability can place psychological and social burdens on both child and family. Epidemiologic data show that children with chronic health conditions have higher rates of mental health problems than children without such conditions.

Interventions

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 children with special health care needs and their families

The Community Partnership Program (CPP) 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.[6]

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.

"Yes I Can" is a curriculum developed by the Institute on Community Integration at the University of Minnesota. "Yes I Can" is an experiential tool for bringing together students with and without disabilities. These efforts reduce social barriers faced by students with disabilities. Field-tested with over 400 students, this curriculum has proven to be and effective approach to enhancing the social inclusion of students with disabilities, especially those with more severe disabilities.

Studies have shown youth preference for informal rather than formal types of assistance with emotional problems. In one study, Internet use (e.g. chat rooms), among teens was as likely a source of support as a mental health professional.[7] 80% of the students with special health needs responding to the Minnesota Student Survey in 2001 have access to the Internet at home. Research suggests that chat rooms moderated by counselors or other mental health professionals may offer an engaging, informative and accessible resource for youth.

Families have identified supportive and unsupportive behaviors at the extended family, community and service provider levels.[8] At the extended family level having inadequate contact or involvement with the child or family, inadequate emotional support, lack of understanding of child's condition or treatment, insensitive or invasive comments and blaming parents for the child's condition were the 5 most common unsupportive behaviors. At the community level, family acquaintances were described as unsupportive by their insensitive comments, inadequate tangible support, withdrawal of contact or friendship, and avoidance of talking about or minimizing the child's condition.

Status

Since 1997, bringing representatives of other sectors together with governmental public health for substantive cross-sector, interdisciplinary collaboration has been the unique role of the Minnesota Health Improvement Partnership (MHIP). The 35+ members of MHIP represent public, private and nonprofit constituencies and consumers. The Minnesota Health Improvement Partnership outlined key aspects of the social and economic environment that affect health, which includes social support and community cohesion.

The Minnesota Public Health Improvement Goals 2004 include "Promoting the well-being of the elderly, those with disability and/or chronic illness." Addressing the social isolation experienced by children and youth with special health care needs will contribute to achieving this public health goal.


1. Hubert, J., Hollins, S., "People with Intellectual Disabilities and Their Elderly Caregivers". Learning About Intellectual Disabilities and Health. http://www.intellectualdisability.info/families/care_age.htm#isolation. [Attn: Non-MDH Link] Accessed 8/13/04.
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. Bauman L. et al. "A Review of Psychosocial Interventions for Children With Chronic Health Conditions". Pediatrics Vol 100 No 2. August 1997.
4. Bauman L. et al. "A Review of Psychosocial Interventions for Children With Chronic Health Conditions". Pediatrics Vol 100 No 2. August 1997.
5. Crocker AC. The Impact of Disabling Conditions in Children. Wallace RG, Biehl JC, MacQueen, and Blackman JA (Eds.), 1997 Mosby's Resource Guide to Children with Disabilities and Chronic Illness. St. Louis: Mosby-Year Book, Inc. 1997.
6. 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]
7. Data Trends: June, 2003 #77. "Adolescent Help Seeking Behavior: The Role of the Internet". Research and Training Center on Family Support and Children's Mental Health, Portland State University. www.rtc.pdx.edu. [Attn: Non-MDH Link] Accessed 6/4/2004.
8. Garwick, A., Patterson, J., Bennett, F., Blum, R. "Parents' Perceptions of Helpful vs. Unhelpful Types of Support in Managing the Care of Preadolescents With Chronic Conditions." Archives of Pediatric and Adolescent Medicine. 1998; 152: 665-671.