The Children and Youth with Special Health Care Needs (CYSHCN) Health Equity Improvement Project: [7: Diversity, Equity, Inclusion, and Accessibility]

MCH Leads Health Equity Edition – In order to advance health equity for MCH populations, beginning January 2023, MCH Leads will feature trainees’ health equity-focused work. We look forward to highlighting trainees’ experiences supporting the health and well-being of vulnerable and underserved populations and communities. Also, their work assessing and addressing the underlying causes of health disparities–and their efforts to promote diversity, equity, and inclusion–ultimately improving MCH outcomes. In addition, we encourage trainees to reflect on how the MCH Leadership Competencies are applicable to their health equity-focused stories.

For the summer of 2023, I had the amazing opportunity to intern with the Children and Youth with Special Health Care Needs (CYSHCN) Program at the New York State (NYS) Department of Health. CYSHCN describes a diverse group of youth ages 0-21 with chronic illnesses or conditions that require more healthcare services and support than the average child There are about 765,000 CYSHCN in New York State, many of whom face barriers to care, such as systemic racism, a fragmented sense of care, and poverty. The NYS CYSHCN Program aims to improve the system of care for CYSHCN and their families. This is accomplished by shaping public policy and funding local health departments to provide coordinated and comprehensive resources directly to CYSHCN families in their community. 

My role as an intern allowed me to thoroughly analyze the program’s activities and outcomes to examine how the local health departments (LHDs) enrolled in the CYSHCN Program for the fiscal year of October 1st, 2021- September 30th, 2022 fostered health equity in their programs and suggested next steps and best practices to improve community engagement. I feel this work embodies MCH Leadership Competency #7, Diversity, Equity, Inclusion, and Accessibility. The National Center for Education in Maternal and Child Health (NCEMCH) describes this competency as focusing on creating a space of respect and inclusion as well as finding the best solutions for improving involvement and interaction. Health equity is defined as everyone having the fair and just opportunity to achieve their highest level of health; this can only be accomplished through adequately informed and purposeful actions. MCH Leadership Competency #7 defines the actions needed to achieve this goal. This competency aligns directly with my passion for equitable access to care for all, which is especially important in our current political climate. For public health programs to achieve health equity, they must understand the community they serve and ensure that individuals from varying backgrounds and cultures are represented. This notion is especially important for the NYS CYSHCN individuals as: 

• The racial distribution of NYS CYSHCN was 48.7% non-Hispanic White, 27.3% Hispanic, 14.5% non-Hispanic Black, and 9.5% non-Hispanic Other/Multi-racial (NYSDOH, 2019).
• 87.1% of NYS CYSHCN lived in a household where English was the primary language (NYSDOH, 2019). 
• 39.0% of NYS CYSHCN lived in a household with income between 0%-199% of the federal poverty level (FPL), 27.9% lived in a household between 200%-399% of FPL, and 33.1% lived in a household at 400% or greater of the FPL.

Thematic Analysis 

During the summer of 2023, the NYS CYSHCN Program conducted a Health Equity Improvement Project. As their intern, I was part of a collaborative effort to conduct a thematic analysis of how the LHDs enrolled in the CYSHCN Program for the fiscal year of October 1st, 2021- September 30th,2022 fostered health equity through the activities and outcomes described in their quarterly narrative reports. This project, which involved the active participation of the LHDs, aimed to enhance health equity for NYS’s CYSHCN population. The LHDs completed a report each quarter, resulting in four reports at the end of the contract fiscal year. The CYSHCN Work Plan, which acts as a frame of reference for Program development, sets the basis for the report and details the Program’s goals and nine objectives, which were split into tasks with  a coinciding performance measure the LHDs had to complete. The nine objectives were:

• Collaboration and Resource Development, 
• Outreach Engagement and Community Promotion, 
• Coordination of Community Resources, 
• Transition Services, 
• Family Satisfaction,
•  Health Equity, 
• Database,
•  Program Administration, 
• Policies and Procedures.

For this analysis, data were extrapolated from twenty counties: Albany, Niagara, St. Lawrence, Chautauqua, Yates, Lewis, Suffolk, Greene, Westchester, Dutchess, Oneida, Monroe, Rensselaer, Broome, Steuben, Sullivan, Livingston, Fulton, Clinton, and NYC. Each objective revealed interesting emerging themes.

 Key Informant Interviews 

Key informant interviews were conducted with five counties throughout the Capital, Central, Metropolitan, and Western regions. The seven questions were based on the emerging themes in the analysis and requirements in the CYSHCN Work Plan. The most notable trends found in the key informant interviews were the answers about outreach, definitions, and including families in work groups. Counties displayed a basic understanding of the term “diversity” and acknowledged the inclusion of individuals from different backgrounds. Four counties within the Western, Central, and Capital Regions expressed that economic diversity is the main form found in their region. Still, they acknowledged that though their counties are majority white, there are small pockets of racially diverse populations (i.e., Hispanic, Black, and Indigenous). When asked to define health equity, respondents displayed a basic understanding of the term. Respondents often used the phrase “same access.” The most notable definitions were “the act of ensuring equal access by providing different support depending on the target population’s need” and “equity ≠ equality.” All counties reported integrating health equity into written materials, communication, outreach, and referrals for CYSHCN and families, mainly accomplished by having written materials available in English and Spanish. They also expressed difficulty getting CYSHCN and their families involved in local planning events, workgroups, etc, but remained focused on improving the system of care for CYSHCN.

Key Informant Questions:

1. How do you define the term diversity? 
2. Please describe the diverse population(s) in your community and how you learn about them.
3. Describe how you engage the diverse population(s) in your community (related to CYSHCN). 
4. Do you build relationships with providers (e.g.: medical providers, childcare providers, community organizations) that are dedicated to serving the diverse population(s) that you described? Please provide examples.
5. How do you define the term health equity? 
6. Workplan Objective 6 states: Health Equity- Integrate health equity into written materials, communication, outreach, and referrals for CYSHCN and families. Question-How do you integrate health equity into written materials, communication, outreach, and referrals for CYSHCN and families to reflect the diversity of your community? Please provide examples.
7. Workplan Objective 5 states: Family Satisfaction- Facilitate families’ and youth’s satisfaction with CYSHCN Program activities by involving them in local planning events, work groups, committees, or advisory committees focused on improving the system of care for CYSHCN. Question-Please describe the level of involvement from family and youth in your Program (such as local planning events, work groups, committees, or advisory committees) that are focused on improving the system of care for CYSHCN. 

Relation to Competency #7: Diversity, Equity, Inclusion, and Accessibility

The findings of the thematic analysis predominantly center around the accessibility aspect of Competency #7, highlighting areas in the Program’s design that, if refined, could significantly promote equity. This underscores the potential for improvement in the Program’s design, instilling a sense of hope and optimism for the future. Concerns regarding staffing and insufficient services hinder their capacity to carry out fundamental duties, potentially impacting their ability to offer specialized services essential for promoting CYSHCN participation. The analysis scratches the surface of the other factors of DEIA by identifying the various family structures counties were able to reach and the basic devices used to engage them (i.e., Hispanic and Refugee families are engaged using materials translated into the respective language spoken).  

The key informant interviews dug deeper into the DEIA aspect of Competency #7 as county representatives identified specific strategies used to inform themselves about and engage the CYSHCN individuals in their specific region. One county described using a Warm Handoff approach for their Native American population (informing patients of the services the CYSHCN offers but referring them to individuals within their respective culture to receive the services.), which is a testament to the county’s acknowledgment of the fraught relationship between the Government and the Native American Population.

Both strategies revealed that families are more concerned with meeting their basic needs than participating in CYSHCN workgroup and event planning. However, it’s reassuring to note that counties remain steadfast in their commitment to improving the system of care for their CYSHCN population. 

Once completed, I used the information gathered from both analyses to suggest recommendations and best practices, such as training on Health Equity and Diversity. I also recommended that NYS update its Work Plan to define Health Equity and Diversity and incorporate the terms throughout its Work Plan instead of a separate section to create uniformity, understanding, and respect. Another suggestion was to build relationships with community organizations that work with the diverse populations in their respective counties to enhance cultural understanding and responsiveness. 

To complete this project, I needed to familiarize myself with all the counties in NYS and their racial, cultural, and economic demographics to eliminate any biases I may have had. This approach, along with the completed analyses, has made me aware of the distinct characteristics of each county and its potential. This ensures that my recommendations for improvement are tailored to each county’s capabilities. The New York State CYSHCN Program’s Health Equity Improvement Program project was just the stepping stone in its overall plan to improve the outcomes for its CYSHCN population.  

References

References

Centers for Disease Control and Prevention. (n.d.) About Health Equity. https://www.cdc.gov/health-disparities-hiv-std-tb-hepatitis/about/index.html

New York State Department of Health. (2024). Children and Youth with Special Health Care Needs (CYSHCN) Program. https://www.health.ny.gov/community/special_needs/

New York State Department of Health. 2019. New York State Profile of Children and Youth with Special Health Care Needs, 2019-2020. https://www.health.ny.gov/community/special_needs/docs/cshcn_profile_2019-20.pdf