Title V Needs Assessment Focus Group Questions

The National Center for a System of Services for CYSHCN developed focus group questions which were used in our national environmental scan. The goal of these questions is to understand how the systems of care serving CYSHCN can work better, particularly from the perspective of families, caregivers, and youth with lived expertise. These questions were developed by Family Voices (a National Center Consortium member) using the Blueprint for Change framework.

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Family/Caregiver and Young Adult Questions 

States and jurisdictions can adapt or tailor the questions below to be used in their respective needs assessment data collection activities. 

System of Care 

• If you could build a system of care, including health, education, recreation, and many other parts of life, that helps children and youth with special health care needs enjoy life and thrive, what and who would you include?   

Quality of Life and Well-Being 

Now thinking about the parts of a system of care that you have talked about, please share an experience where you or your child was valued, supported, and treated as a whole and unique person.

• Where you or they were supported to live their fullest life possible, whatever that may mean for you or your child? 
• What were the key factors that made the experience meaningful?   
• How do experiences like these affect you or your child and family’s health and well-being?   

Financing 

It is important for health care and other parts of a system of care to be sure that their services are easy to access and afford, and also meet all your needs over time; this is how a system of care puts the well-being of CYSHCN and their families first.  

• When or have you ever experienced a time when you felt you had all the information about costs/finances you needed to make a decision about your child's health care? When did you want more information to make a decision and what type of information did you need? 
  • What changes could be made in the system of care to make sure all families can afford the services their children need?
  • Are there services or supports that were hard to get because of their cost?  

Access 

• Describe a time when you felt like your child and family had all the services you needed, when you needed them, for your child with special health care needs.
  • What supports or processes helped make this happen? 
  • How did having access to these services impact your child and family’s health and well-being?  
• What skills and knowledge do you feel that health care and other service providers need to know to help children and youth with special health care needs and their families grow and thrive?  

Health Equity 

For some families it can is harder to find and use the services they need for their child. This can be because of where youth and families live, their cultural backgrounds, their language, or other parts of who they are. In a well-functioning system these things should not impact your ability to find and use services.

• If you could create the rules that all healthcare and other service providers had to follow, that would result in all children having the opportunity to be health and thrive, what would be your rule?
• In your opinion, what is important for a well-functioning system of care to track or measure as a way to be sure children and youth with special health care needs and their families get high-quality care?  

Final Thoughts

As we have discussed today, there are many changes that we can make to continue to improve the systems of care that serve children and youth with special health care needs and their families. Based on this information, what is the first step we can take to build this system?