Date of Defense:
Friday, February 21, 2020
Children and youth with special health needs (CYSHN) are those who “have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally” (McPherson, 1998). Many children and youth fall into this category; nearly 20% of children in the United States (U.S.) under the age of 18 have a special health need (Maternal & Child Health Bureau [MCHB], 2019), and in Minnesota specifically almost 18% of children ages 0-17 have special health care needs (National Survey of Children’s Health [NSCH], 2019).
CYSHN and their families commonly need services and supports from multiple systems, such as the health care system, mental health, education, and other social services (MCHB, 2019). However, it’s not always a simple thing to access these services; less than 16% of CYSHN reported to have received care in a well-functioning system, which is defined as incorporating family partnership, a medical home, early screening, adequate insurance, easy access to services, and preparation for adult transition (NSCH, 2019). Because so many children and youth have special health needs and yet struggle to receive the supports and services that they need, both in the U.S. and Minnesota, this is a public health concern.
The objectives of this field experience were to:
- Gain knowledge and experience working in a state-level, government MCH agency,
- Further my professional knowledge of children and youth with special health needs and gain skills to work effectively with this population,
- Participate in developing tools for community needs assessment
My field experience placement was with the Minnesota Department of Health (MDH) working on the Maternal and Child Health Title V Needs Assessment, which seeks to identify and improve the health and well-being of mothers, children, and families, including CYSHN.
In pursuit of these objectives, I conducted a literature review and drafted a data brief on the topic of access to services and supports for CYSHN. I also helped to conduct two key informant interviews and took notes for a remote focus group for rural CYSHN families.
To create the brief, I made use of: the results of the Discovery Survey conducted by MDH, which is a state-wide survey administered in summer 2018 to assess the needs of mothers, children, and families according to the community; recent literature regarding the struggles and difficulties that families of children with special health needs face in accessing services and supports; and the National Survey of Children’s Health (NSCH) and the National Survey of Children with Special Health Needs database to describe the prevalence of issues that CYSHN face. This data brief was part of a set of briefs that were made for the community in order to help them make informed decisions when voting on top priority areas.
The interviews I assisted with were conducted with two prominent figures of non-profit organizations that work with CYSHN and their families. I assisted in determining which questions we would ask our interviewees and took notes. The purpose of the interviews was to help inform the priority area of access to services and supports for CYSHN, and the information I gained was incorporated into my data brief.
The final component of my field experience was taking notes for a remote focus group for rural families of CYSHN that took place over video chat. This focus group was used to inform the needs assessment, specifically in regard to CYSHN.
I worked within the Child & Family Health division of the Minnesota Department of Health, Minnesota’s state governmental health department. This division oversees Minnesota’s Title V Maternal & Child Health Block Grant, which is a federal-state partnership that allocates funds to promote the health and well-being of mothers, children, and their families. As part of this block grant, every five years the state of Minnesota is required to conduct a needs assessment on the health and well-being of this population, which helps to identify maternal and child health priority issues in the state and inform where funds should be allocated.
One of the skills I began to develop through this field experience was learning how to engage with the community, which I was prepared for through my coursework in evaluation and qualitative research methods. While writing the data brief, I had to remember that my audience was made-up primarily of community members who may or may not have previous knowledge of the topic. It was a challenge to present the information in a clear, yet thorough, manner. I was also able to learn how to engage with the community through participating in the remote focus group and conducting interviews with key informants for the needs assessment, which taught me to approach people with an open perspective even if I have prior academic knowledge about a certain population; there is so much more I can learn about their unique needs and challenges as I interact with them.
I also had the opportunity to apply the knowledge I gained about CYSHN through my graduate coursework and research to real-world situations. For example, I had read articles and written papers about the distinctive struggles that rural CYSHN families face through my coursework, but these pieces of knowledge were affirmed and humanized once I heard first-hand from families about their own struggles. Another example was using the knowledge I acquired during a health systems course to understand the complicated health insurance situations many CYSHN families find themselves in, and this knowledge also helped inform my data brief.
My primary recommendation for MDH and other organizations working with CYSHN would be to continue to create and expand opportunities for CYSHN families to make their voices and opinions heard through continuing activities such as remote focus groups, as well as travelling to rural areas to make forums and focus groups more accessible for these families.
Through my field experience, I had the opportunity to participate in the work of a maternal and child health organization and expand my real-world knowledge and experience with CYSHN populations through writing a data brief, engaging in key informant interviews, and participating in a focus group. This was an excellent opportunity for me to reinforce what I learned in my graduate coursework, adding experiential knowledge to my academic knowledge.
Child and Adolescent Health Measurement Initiative. 2016-2017 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by Cooperative Agreement U59MC27866 from the U.S. Department of Health and Human Services, Health Resources and Services Administration’s Maternal and Child Health Bureau (HRSA MCHB). Retrieved 04/04/2019 from www.childhealthdata.org. CAHMI: www.cahmi.org.
Children with Special Health Care Needs. (2019, December 17). Retrieved from https://mchb.hrsa.gov/maternal-child-health-topics/children-and-youth-special-health-needs
McPherson, Merle, Arango, Polly, Fox, Harriette, Lauver, Cassie, McManus, Margaret, Newacheck, Paul W., . . . Strickland, Bonnie. (1998). A new definition of children with special health care needs. Pediatrics, 102(1), 137-13740.