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Core Outcome 4

All children will be screened early and continuously for special health care needs.

 

National Centers to Address Core Outcome 4

National Center to Address Outcome 2

National Center to Address Outcome 2

National Center to Address Outcome 2

National Center to Address Outcome 2

According to the American Academy of Pediatrics, Committee on Children with Disabilities, the benefits of early identification and treatment on child health, development, and well being are well established and new evidence is continuing to emerge. “With this knowledge comes the responsibility to identify children with special health care needs as early as possible to ensure that treatment and intervention can begin promptly.” Screening takes place in a variety of settings, including physicians’ offices and primary care clinics, child care centers and homes, early childhood development programs (such as Early Head Start, Head Start and Healthy Families), preschool classrooms, parents’ homes, early intervention programs and other community settings.

Early and continuous screening for special health care needs and disabilities requires a range of culturally and linguistically competent strategies and approaches.

Professionals that conduct screening, and provide direct follow-up services and supports to such, will display cultural and linguistic competence in the following ways:

  1. Early identification and intervention and prevention are culture-bound concepts. Respect that the world views of families and communities may not readily embrace these concepts.
  2. Developmental milestones for social and emotional development are not monitored and valued the same way in all cultures and all families.
  3. Expectations for social and emotional development vary significantly from culture to culture.
  4. Developmental and behavioral screening tools have not been normed on all populations and may not have been validated in languages other than English. Screeners will:
    • carefully investigate the norming populations for any tools chosen and include stipulations about the applicability of results based on that information;
    • augment formal screening tools with other sources of data before drawing conclusions and offering recommendations;
    • ascertain that foreign language versions of tools have been accurately and appropriately translated and that the concepts and wording of items are understandable and culturally appropriate for the populations they are serving(Gokiert, et.al., 2008: and
    • learn/ acquire knowledge about cultural expectations, norms and world views of families they serve to inform the screening process.
  5. Effective screening involves accurate communication among the screener, the child and family, or other adult informants, thus:
    • Screeners will insure that interpretation services (foreign language and sign language) are provided for the entire screening process, including sharing of results and recommendations for families who prefer/require this assistance.
    • Written materials used in screening or for sharing results and recommendations are provided:
      • in the language the family prefers/requires;
      • at an appropriate level of literacy and health literacy; and
      • in formats appropriate for their needs, e.g. for families with low or no literacy, oral presentation of all information will be needed.
    • Family members who have disabilities are provided with appropriate formats such as large print or Braille and appropriate supports to understand screening findings and make informed decisions about services and supports for their children.

Organizations that conduct screening, and provide direct follow-up services and supports to such, will display cultural and linguistic competence in the following ways:

  1. Address the multiple potential sources of racial, ethnic, and socioeconomic disparities in access to and utilization of follow-up services. These factors may include:
    • availability of services (including providers willing to accept public insurance and program payments);
    • accessibility of services in terms of time, place, transportation, support through care coordination and the medical home, provision of language services;
    • affordability of services—insurance coverage for needed follow-up services, co-pays and co-insurance requirements;
    • trust of providers and programs; and
    • family beliefs about predicting the future.
  2. Engage communities to understand the benefits of screening and to address concerns about stigmatization of families or communities in the screening process.
  3. Advocate with and on behalf of communities for the follow-up services that are needed.
  4. Address the potential power differential between entities that promote and implement screening and families and communities that may receive the screening through collaborative relationships with communities and families that inform the goals, processes and evaluation of screening programs.

The Evidence

Racial/Ethnic Disparities in Early and Continuous Screening

Responses from the 2005/2006 National Survey of Children with Special Health Care Needs, reflect significant disparities for Hispanic/Latino and Black children and youth with special health care needs in early and continuous screening. Nearly half (44.58% and 43.5%respectively) of children and youth from these groups had families who reported that their child had not received early and continuous screening for special health care needs or disabilities. In comparison, 32% of white, non-Hispanic children and youth with special health care needs had families who reported that they did not receive early and continuous screening.

Outcome #4: CSHCN who are screened early and continuously for special health care needs 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. 2005/2006 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved [08/20/09] from www.cshcndata.org

Language barriers may contribute to the disparity among Hispanic/Latino families of children and youth with special health care needs. Studies document that children and youth with special health care needs whose parents do not speak English, or for whom English is not the primary language, are more likely to experience barriers in accessing care than their peers with English speaking parents. (Newacheck, P., Hung, Y., & Wright, K. 2002; Yu, M., Nyman, R., Kogan, M., Huang, Z., & Schwalberg, R., 2004). When compared to non-Hispanic white children, disparities in quality of primary care have been documented by Flores (2010) for Hispanic/Latino children living in households in which English is not the primary language spoken.

Data from the 2005/2006 National Survey of Children with Special Health Care Needs, underscore the importance of language barriers. The percentage of Hispanic children and youth with special health care needs in English language households whose families reported that they did not receive early and continuous screening (38.8%) did not differ significantly from non-Hispanic children (35.1%). In contrast, over half (56.3%) of Hispanic children and youth with special health care needs in Spanish language households had families who reported that they did not receive these services.

Outcome #4: CSHCN who are screened early and continuously for special health care needs Nationwide;

Primary language for Hispanic children with special health care needs
Outcome #5: CSHCN whose services are organized in ways that families can use them easily
Child and Adolescent Health Measurement Initiative. 2005/2006 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved [08/20/09] from www.cshcndata.org

Impact of Screening Disparities—Autism as an Example

There are disparities in the length of time it takes for Hispanic and African American children to be diagnosed with autism compared with white children. A retrospective analysis of Medicaid claim data (Mandell et al., 2002) found that Hispanic children with autistic disorder were diagnosed on average at 8.8 years, more than two years later than white children (6.3 years). According to data from the CDC’s Autism and Developmental Disabilities Monitoring Network, there is a lower reported prevalence of Latino children with autism spectrum disorders, but this may be due to under-identification (Wiggins, 2010). Further, in a multi-site study in which data on 2568 eight-year-old children were analyzed, significant disparities in autism diagnosis were found for Latino children (Mandell, et. al., 2009). Additionally, African American children were also found to receive a diagnosis of Autism 1.4 years later than white children and to participate in mental health treatment an average of 13 months longer than their white counterparts before receiving the diagnosis of Autism (Flores, 2010). Autism identification rates were particularly low among children who also had cognitive impairment, apparently because professionals working with some historically underserved groups may be less likely to assess further when IQ is low.

Cultural Differences in Developmental Expectations

Families from different cultural background may have differing expectations about the age at which developmental milestones are achieved and about what behaviors and characteristics they prefer to support in their children. Developmental expectations for schools, early childhood settings, recreational centers or other programs may not be consistent with those of some families. Pachter and Dworkin (1997) verbally administered a questionnaire to two hundred fifty-five mothers (90 Puerto Rican, 59, African American, 69 European American, and 37 West Indian-Caribbean) asking at what age a normal child achieves standard developmental milestones. There were significant differences among groups (after controlling for age of mother, number of children, level of education and socioeconomic status) on 9 of 25 milestones. Differences were seen mainly on social and personal milestones. For example, they found that European American mothers expected that their babies could play pattycake or “gimme 5” by 13.7 months, while Puerto Rican mothers did not expect that behavior until 19 months. European American mothers expected their babies to sleep through the night at 5.7 months, African American mothers expected this at 8.4 months and Puerto Rican mothers in the study did not expect their babies to sleep through the night until 10.5 months. International studies have found similar differences among cultures. (Joshi and Maclean (1997).

Cultural factors that impact acceptance of screening and early interventions/prevention. In a study to understand cultural factors that affected acceptance of prenatal screening, Gross and Shuval (2008) identified a series of cultural factors that affect acceptance of screening and prevention/early intervention activities . These include the following:

  • Health and illness cosmologies that are substantially different than those that inform medical and health care. For example, beliefs that illness and disability are:
    • related to sin and that only God or other Divine entities hold the choice to cure or prevent the problem (Abrums, 2000), not interventions or predictions of humans (Streefland, et.al., 1999); or
    • natural and inescapable parts of life.
  • Beliefs that talking about bad things makes them happen (why look for trouble).
  • Religious beliefs that not knowing is more likely to lead to a miracle than knowing and asking for a miracle to change the outcome.
  • Fear and mistrust of biomedical establishment-- that health care providers may be purposefully labeling and thus stigmatizing children or wanting to do some harm or undermine family culture. (Note: for families of deaf children who view deafness as a culture, efforts to prevent or “cure” deafness are experienced as culturally destructive.)
  • Concern about governmental or medical system control over private and family matters.

Thus, the entire concept of screening will always involve cultural considerations.

Resources

Cross-Cultural Lessons: Early Childhood Development Screening and Approaches to Research and Practice
Provides a review of the issues related to developmental screening for culturally diverse populations and suggested approaches.

Developmental Screening and Assessment Instruments with an Emphasis on Social and Emotional Development for Young Children Ages Birth through Five
This Compendium of screening tools compiles for the National Early Childhood Technical Assistance Center by Sharon Ringwalt, includes information about the norming samples for each instrument.

Early Identification of Culturally and Linguistically Diverse Children (Aged 0-5)
This bibliography annotates a selection of articles, guidelines and reports on this topic.

References

Abrums, M., Jesus will fix it after a while: meanings and health. Social Science and Medicine, 50 (1), 89-115.

Flores, G. and Committee on Pediatric Research (2010). Technical report-racial and ethnic disparities in the health and health care of children. Pediatrics, 125(4):e979-e1020.

Gokiert, R., Chose, W. Parsa, B. and Vanderberghe, C. Cross-Cultural Lessons: Early Childhood Development Screening and Approaches to Research and Practice. Community-University partnership for the Study of Children, Youth and Families, University of Alberta. Downloaded on 10/15/2010 from http://www.interprofessional.ubc.ca/Brochures/A7_Gokiert_Chow1.pdf

Joshi, M. and Maclean, M. (1997) Maternal expectations of child development in India, Japan and England. Journal of Cross-Cultural Psychology, 28(2), 219-234.

Mandell, D.S., Listerud, J., Levy, S.E, Pinto-Martin, J.A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism, Journal of the American Academy of Child and Adolescent Psychiatry, 41(12), 1447-1453.

Mandell, D.S., Wiggins, L.D., Carpenter, L.A., Daniels, J., DiGuiseppi, C., Durkin, M.S., Giarelli, E., Morrier, M.J., Nicholas, J.S., Pinto-Martin, J.A., Shattuck, P.T., Thomas, K.C., Yeargin-Allsopp, M., Kirby, R.S (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3):493-8.

National Council on Disability (1999). Lift every voice: Modernizing disability policies and programs to serve a diverse nation. [On-Line serial].

Newacheck, P., Hung, Y., and Wright, K. (2002) Racial and ethnic disparities in access to care for Children with Special Health Care Needs. Ambulatory Pediatrics, Volume 2, Issue 4, July-August 2002, Pages 247-254

Pachter, L. and Dworkin, P. (1997) Maternal expectations about normal child development in 4 cultural groups. Archives of Pediatrics and Adolescent Medicine, 151(11), 1144-1150.

Streefland, P. (2001) Public doubts about vaccination safety and resistance against vaccination. Heralth Policy, 55 (#), 159-172.

Wiggins, L. D. (2010). The surveillance and epidemiology of Autism Spectrum Disorders at the Centers for Disease Control and Prevention, Presentation. Paper presented at the Act Early Summit, Philadelphia, PA, March 25, 2010.

Yu, M., Nyman, R., Kogan, M., Huang, Z., and Schwalberg, R., (2004). Parent's Language of Interview and Access to Care for Children With Special Health Care Needs. Academic Pediatrics; Volume 4, Issue 2 (March 2004) Pages 181-187

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