Intentional Connection in the Time of COVID-19: An update on the Children with Special Health Care Needs Project

Interview by Allie Long

Intentional Connection in the time of COVIDAt the beginning of this year, our Institute began a three-year partnership with the Texas Department of State Health Services (DSHS) to help develop and implement a best practices case management model to serve families with children with special healthcare needs (CSHCN).

Since its inception in 1933, the CSHCN Program has evolved to provide services to children with special health care needs, including those with disabilities and chronic health conditions. Funding for the CSHCN program is made possible by Title V of the Social Security Act from 1935, which allocates federal funding to each state in order to provide programming and services to improve maternal and child health outcomes. Since 1981, federal funding requires that 30% of the maternal and child health federal funding be specifically allocated for children with special health care needs. And in Texas, the majority of the funding for children with special health care needs supports the Children with Special Health Care Needs Services Program.

The CHSCN Program is a family and community-focused program that pays for medical care, family support services, and related services not covered by Medicaid, CHIP, or private insurance for families with income less than or equal to 200% of the federal poverty level. Regardless of the type of health care coverage a family has, any family with a child with special health care needs is eligible for case management services.

Currently, case management services are carried out by DSHS case managers across the state’s eight regions, with every region working a bit differently from one another. The goal of this project is to develop a best practices case management model that is specific for families with children with special health care needs that provides consistency across regions, while also maintaining flexibility for each regions’ unique needs. Because case management and care coordination is a substantial component of this program, our team is currently at work on a Needs Assessment to understand what support case managers and families in the program need in order to enhance  their wellbeing and quality of life. The findings from the needs assessment will then inform the development of the case management practice model.

In this blog, we want to demonstrate how our current work on the CHSCN project highlights the importance of intentional connection in the work that we do. For us, this means honoring the lived experiences of research participants, managing our own biases and interpretations, as well as building and maintaining relationships as a way to offer healing opportunities for children and families. With that said, we were curious to learn more about how our research team has worked to cultivate intentional connections with CHSCN case managers and families during COVID—especially for a population that may already have significant barriers and vulnerabilities.

We got a chance to talk with Swetha Nulu, TXICFW’s Assistant Director of Research and the project’s Lead Research Coordinator, and Stephanie Holmes, the project’s Program Coordinator, to hear more about the CSHCN project in its first year of development.

TXICFW: Can you give us a general update of where the Children with Special Health Care Needs Project is right now?

Swetha: We’re currently in the middle of our Needs Assessment. In this stage, we are conducting virtual interviews and focus groups with case managers, supervisors, stakeholders, and community contractors who provide family support services to children with special health care needs across Texas. It’s been really great getting to connect with these professionals from all over. We’re also in the midst of putting out an online survey to collect feedback about the program. Stephanie has been working closely with me on the Needs Assessment. She is also preparing for the next step of the project, which is the development of a case management model.

Stephanie: Yes, creating a case management model is definitely the end goal of our project. In order to get there, we’re about to kick off a year-long practice model advisory group. I’m excited to put this group together because it will be built with and for caregivers of children with special health care needs and also folks with lived experience so that their voices will be at the forefront. We want to implement a model that provides a balance of consistently high value output while also being authentic, adaptable, and adjustable.

 TXICFW: What do we hope to find out from this Needs Assessment?

Swetha: A big question we are hoping to answer is “what are the things about how case management is provided that have been really helpful in getting families connected to the care that they need in a timely manner?” For example, during one of our interviews, we learned  about a program for siblings of children with special health care needs. This program served as a way treat the family holistically rather than isolating just the child with special needs. Ultimately, siblings can be such a huge part of the family system as kids with special needs get older.

Stephanie: I think that example is a really insightful illustration on the importance of addressing whole family strengths. Something that can be a little challenging about this project is witnessing its variability. There are so many different definitions and eligibility criteria for children with special health care needs; identifying them all is sort of like putting a puzzle together. Ultimately, the Needs Assessment is helping us to create a bigger picture in order to assist our frontline staff in feeling more connected to each other.

Swetha: We are finding that the case managers are cultivating intentional connection in the work that they do by treating the whole family. We hope our needs assessment will highlight the strengths of this approach, but also objectively provide real data about what is really going on. We want to bring their voices to the attention of others, and then share out our findings across regions.

How have you managed to stay connected to those involved in the CSHCN project during COVID-19?

Stephanie: When I was hired for this project, one of the things that I was really looking forward to was connecting through face-to-face interviews. Initially, I was worried that I wouldn’t have as strong of a connection over web conferencing or phone calls. I’m pleasantly surprised to say that I feel like I have been able to make connections and email follow ups really easily. Because of COVID, disaster planning has become a central theme when talking to this population, which has opened the door to conversations about the benefits and drawbacks of telehealth. Although it’s not available for every situation, I think it could be an incredible thing, especially for our more rural populations, if telehealth became more easily accessible due to COVID.

Swetha: When we were planning this project, we initially designed it like the Project HOPES “Tour of Texas” to build face-to-face connection in a way that’s so crucial for a Needs Assessment. With COVID, we had to shift all of our data collection, get the proper technology in place, and troubleshoot issues just like people in many other industries. Although it was initially a challenge, it’s been working really well. Despite not having the face-to-face connection, we’ve gotten a lot of engagement. People have wanted to share their stories with us. We’re working hard to sensitively approach caregiver input amidst COVID, which has been an additional layer of complication for an already vulnerable population. That said, we are lucky that we have so many ways to be flexible with our research while still getting the data we need to conduct this project.

If you’d like to learn more about the Children with Special Health Care Needs project, please visit our webpage. We’ll have more information on this project to share later in 2020— stay tuned!