Raising Children with Medical Complexity: Issues in Housing and Household Expenses

Assessing the housing challenges for children with medical complexity in the State of Maryland

Children with special health care needs may have additional housing considerations to ensure that their living arrangements enable them to thrive. This is perhaps especially relevant for children with increased medical needs (e.g. technology dependence). For example, a child who requires invasive home ventilation may also require a back-up generator, ample room for supplies, and increased levels of electrical usage. However, the experiences and trade-offs parents confront as they negotiate managing their child’s complex health needs and household finances remain absent from the research literature on material hardships among caregivers.

This project was developed from stakeholder concerns about the fragility of stable and adequate housing for families of children with chronic and complex conditions raised at the 2019 Levi Symposium hosted at the Berman Institute. The Symposium was attended by national and state experts on children with medical complexity, including physicians, government and social service agencies working directly with children and families, and caregivers.

Objectives

  • Assess the status of housing stability and adequacy among parents/caregivers of children with special health care needs in the State of Maryland
  • Determine how medical complexity is related to housing inadequacy
  • Determine how medical complexity is related to housing instability

Methodology & Progress

This study uses a mixed-methods approach to document the housing needs of children with special health care needs. Parents will be recruited to participate in an online survey and a subset of survey respondents will be contacted for a semi-structure interview. The surveys and interviews will be analyzed to assess the housing needs of parents caring for children with special health care needs in the State of Maryland, with hopes of informing future interventions.

Presentations

2021 Academic Pediatric Association Region 4 Conference, “Housing Stability and Adequacy for Children and Youth with Special HealthCare Needs.”

2021 Pediatric Academic Societies Meeting, “Housing Stability and Adequacy for Children and Youth with Special HealthCare Needs.”

Publications

Coming soon!

Core Team

Rene Averitt-Sanzone, MA

Parents’ Place of Maryland

Renee D. Boss, MD, MHS

Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics

Pamela K. Donohue, ScD, MS

Johns Hopkins School of Medicine, Johns Hopkins Bloomberg School of Public Health

Kate Detwiler

Children’s National Health System, Parent of a Child with Medical Complexity

Karen Fratantoni, MD, MPH

Children’s National Health System

Danielle D. Gaskin

Johns Hopkins Bloomberg School of Public Health

Rebecca R. Seltzer, MD, MHS

Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics