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Core Outcome 6

All youth with special health care needs will receive the services necessary to make appropriate transitions to adult health care, work, and independence.

 

National Center to Address Core Outcome 6
National Center to Address Outcome 2

Professionals, family, youth advocates, and others supporting youth and their families in the transition process will display cultural and linguistic competence in the following ways:

  • Ask about and respond effectively to how cultural and family perceptions of health, wellness, illness, and disability may impact family expectations for their child at each stage of life;
  • Incorporate cultural values about such concepts as independence vs. interdependence or individuality vs. collective/communal perspectives into planning and provision of transition services and supports for youth and families;
  • Base practice on the understanding that self- determination and independent living reflect the values of “mainstream,” western cultures but may not reflect the values and beliefs of all youth and families residing in the U.S.;
  • Examine their own values and beliefs about how they define adult status; and how those values and beliefs shape their views about successful transition processes and outcomes;
  • Learn from families and youth their values and beliefs about adult status and successful transition;
  • Ensure that transition processes and goals are responsive to the cultural values of each family and youth;
  • Understand that youth and their family members may have differing values, beliefs, and expectations for transition. Support youth in achieving their goals, while also respecting and honoring the family’s perspectives;
  • Meet family and youth needs and preferences for language interpretation services (including sign language);
  • Provide alternate formats for written materials and adapt the transition process to support individuals with disabilities; and
  • Partner with natural systems of supports within the youth’s community to create appropriate transition plans and services.

The Evidence

Racial and Ethnic Disparities in Transition Services and Outcomes

The following data are from the 2005-2006 National Survey of Children with Special Health Care Needs. Hispanic and non-Hispanic black youth ages 12-17 are significantly less likely than non-Hispanic white youth to have received services needed for transition to adult health care, work, and independence. While 46.5% of non-Hispanic white youth with special health care needs ages 12-17 were reported to have received these services, only 26.3% of Hispanic and 28.7% of non-Hispanic black youth achieved this outcome. For Hispanic youth for whom Spanish was reported as their household language, the disparity is even more dramatic—only 11.6% of these youth had families who reported receiving these services. This same pattern of disparities can be seen across a range of transition services including receiving anticipatory guidance for transition to adult health care, having doctors discuss health needs as the youth become an adult, and having doctors discuss how to maintain insurance coverage as the youth enters adulthood.

Outcome #6: CSHCN ages 12-17 who receive services needed for transition to adult health care, work and independence Nationwide

Race/Ethnicity of Child
Outcome #5: CSHCN whose services are organized in ways that families can use them easily
Child and Adolescent Health Measurement Initiative. 2005/06 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved [11/25/2010 from www.cshcndata.org]

Successful transition may include employment, a key component of Outcome 6. For those youth with special health care needs who have a disability, employment prospects are poorer than for other youth. In 2009 the unemployment rate for persons with a disability was 14.5 percent , compared with 9.0 percent for those with no disability. However, as with the general population, there are racial and ethnic disparities in unemployment as well. The unemployment rates in 2009 for those with a disability were higher among blacks (22.1 percent) and Hispanics (19.0 percent) than among whites (13.3 percent) and Asians (11.6 percent) (Bureau of Labor Statistics, August 25, 2010).

Racial and Ethnic Disparities in Transition Services and Outcomes

Transition policies and practices frequently reflect the individualistic orientation of “mainstream” culture in the United States. Thus transition policies, practices, and services may assume that all youth with special health care needs and their families value such individual oriented outcomes as self-determination, self-reliance, and independent living. These outcomes may not reflect those of cultural groups, individuals, and families who value collectivism. Individualistic cultures view the process of development for youth as moving from dependence to independence and self-reliance. In contrast, collectivistic cultures see development as moving from dependence to interdependence. (Ewalt and Mokuau, 1995).

Values associated with individualism:

  • individual rights
  • pursuing personal interests
  • setting and achieving personal goals
  • being true to one’s own values and beliefs

Values associated with collectivism:

  • obligations that go along with one’s group roles
  • being an interdependent member of a group,
  • working with others to achieve group success and
  • adhering to the group’s traditional values (Yamauchi, 1998)

These differing sets of values may play out in transition in a number of ways. For example, the concept of self-determination may be viewed very differently in different cultures (Zhang, 2005). For some youth and families, a goal of individual choice may conflict with cultural values that support group or hierarchical decision-making. This cultural norm may apply to all adults in that group, so that transition to adulthood is not necessarily defined by independent decision-making. Collectivistic world views may value contributing to the family through wages and housework over post-secondary education. Residing with family and kin groups may be valued over living on one’s own. For example, Rueda et al (2005) found that Latina mothers believed the concept of independent living after high school was completely inappropriate, because marriage marked youth adult independence and moving out of the family home. The mothers in the study indicated that employment was not considered particularly relevant, but self-sufficiency in terms of meeting personal needs was. Some African American, Asian, and Hispanic families resist out of home placement and permanency planning based on a philosophy of family interdependence (Harry, et al., 1999). Even the process of transition reflects cultural values. For some families, creating a transition plan is meaningful if it involves a close personal relationship among youth, family, and professionals rather than creating a written plan (Leake, et al, 2004).

Racial and Ethnic Disparities in Transition Services and Outcomes

The literature has identified a concept related to immigrant families called the acculturation gap. Sluzki (1979) described the task of an immigrant family as “reshaping its new reality, maximizing both the family’s continuity in terms of identity and its compatibility with the environment”. (p.384) This process of acculturation may have four potential outcomes. (Berry, 1990). These outcomes include: 1) assimilation (strong identification with the dominant new culture and weak ties to the original ethnic culture); 2) separation (rejection of the dominant culture); 3) integration (identification with both cultures); and 4) marginalization (immigrant rejects both cultures). Within families, members may have very different outcomes in the acculturation process. Parents are more likely to hold on to original values and children are more likely to embrace the values and norms of their new cultural environment. ( Herz and Gullone, 1999; Shapiro, et al, 1999.) However, within families, siblings may be at very different places in acculturation. This difference has been called dissonant acculturation or the acculturation gap. (Portes and Rumbout, 1996; Birman, 2006a, 2006,b; Lau, et al, 2005). The acculturation gap has been reported to contribute to emotional and behavioral problems in children of immigrant parents (Lim et al , 2011) and create conflict between generations as the parents fear that their children will become too Americanized and forget their cultural roots. (Zhou, 1997) While the bulk of the research has related to acculturation gaps for children in families of immigrant parents, the same phenomenon can be observed in families who have strong values and live in the state of separation from the dominant culture, such as religious groups, racial groups and even families making a geographic move, such as rural families moving to the city.

Culturally competent planning and support for transition needs to take into account the issue of acculturation and the acculturation gap. It cannot be assumed that all youth and parents will experience this gap and many youth hold on to traditional values while also embracing aspects of the dominant culture. It can be tempting for professionals from the dominant culture to support the youth’s values in the name of helping the youth become more autonomous and independent. However, a key task of culturally competent transition approaches is to identify any gap and to help the family negotiate the transition process together. If familial values are spurned in the transition process, there is the risk that families will pull out of the process or that youth may become alienated from the family support they need.

References

Berry, J. (1990). Acculturation and adaptation: A general framework. In W. H. Holtzman & T. H. Bornemann (Eds.), Mental health of immigrants and refugees (pp. 90-102). Austin, TX: Hogg Foundation for Mental Health.

Birman, D. (2006a) Acculturation gap and family adjustment: Findings with Soviet Jewish refugees in the United States and implications for measurement. Journal of Cross-Cultural Psychology, 37(5), 568-589.

irman, D. (2006b). Measurement of the “acculturation gap” in immigrant families and implications for parent-child relationships. In M. H. Bornstein & L.R. Cote (eds.), Acculturation and parent-child relationships: Measurement and development (pp. 113-134). Mahwah, NJ: Erlbaum.

Bureau of Labor Statistics ( August 25, 2010) Persons with a Disability: Labor Force Characteristics-2009. News Release, Washington, DC: United States Department of Labor.

Child and Adolescent Health Measurement Initiative. 2005/06 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved [11/25/2010] from www.cshcndata.org

Ewalt, P. & Mokuau, N. (1995). Self-determination from a Pacific perspective. Social Work, 40(2), 168-175.

Harry B., Rueda, R. & Kalyanpur, M. (1999) Cultural reciprocity in sociocultural perspective: adapting the normalizing principle for family collaboration. Exceptional Child, 66 (4), 123-36.

Herz, L. & Gullone, E. (1999). The relationship between self-esteem and parenting style: A cross-cultural comparison of Australian and Vietnamese adolescents. Journal of Cross-Cultural Psychology, 30(6), 742-761.

Lau, A. , McCabe, K. Yeh, M, Garland, A., Wood, P. &Hough, R. (2005). The acculturation gap-distress hypothesis among high-risk Mexican American families. Journal of Family Psychology, 19(3), 367-375.

Leake, D., Black, R. &Roberts, K. (2004). Assumptions in transition planning: Are they culturally sensitive? In Gaylord, V, Johnson, D., Lehr, C., Bremer, C. and Hasazi, S. (Eds.) Impact: Feature Issue on Achieving Secondary Education and Transition Results for Students with Disabilities, 16(3). Minneapolis: University of Minnesota, Institute on Community Integration.

Lim, S. & Lim, B. (2004) Parenting style and child outcomes in Chinese and immigrant Chinese families—Current findings and cross-cultural considerations in conceptualization and research. Marriage and Family Review, 39(1), 21-43.

Portes, A. & Rumbaut, R. (1996) Immigrant American: A portrait (2nd ed). Berkeley, CA: University of California Press.

Rueda, R., Monzon, L., Shapiro, J., Gomez, J. & Blancher, J. (2005). Cultural models of transition: Latina mothers of young adults with developmental disabilities. Exceptional Child, 71(4), 401-414.

Shapiro, J., Douglas, K, de la Rocha, O., Radecki, S., Vu, C. & Dinh, T. (1999). Generational differences in psychological distress in a population of recent Vietnamese immigrants. Journal of Community Health, 24(2), 95-113.

Sluzki, C. (1979). Migration and family conflict. Family Process, 18(4), 379-390.

Soh-Leong, L, Yeh, M, Liang, J, Lau, A & McCabe, K (2011) Acculturation gap, intergenerational conflict, parenting style, and youth distress in immigrant Chinese American families. Marriage and Family Review, 45(1), 84-106.

Yamauchi, L. (1998). Individualism, collectivism and cultural compatibility: Implications for counselors and teachers. Journal of Humanistic Education and Development, 36(4), 189-198.

Zhang, D. (2005) Parent practices in facilitating self-determination skills: the influences of culture, socioeconomic status, and children’s special education status. Research and Practice for Persons with Severe Disabilities, 30(3), 154-162.

Zhou, M. (1997) Growing up American: The challenge confronting immigrant children and children of immigrants. Annual Review of Sociology, 23, 63-95.

Resources

Cultural Reciprocity Aids Collaboration with Families

Essential Tools: Improving Secondary Education and Transition for Youth With Disabilities Cultural and Linguistic Diversity: Implications for Transition Personnel

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