For children with medical complexity (CMC) and technology dependence, living at home requires well-qualified caregivers and an environment that is clean, safe, accessible, and spacious enough for medical equipment and supplies. Unfortunately, securing suitable housing can be prohibitively expensive for families of CMC who experience financial hardship. According to the National Survey of Children with Special Health Care Needs (CSHCN), among parents of more complex CSHCN, 57% stated that the child’s health caused financial problems, and 54% stated that a family member stopped working because of the child’s health.1  The rising price and short supply of homes has resulted in a widespread lack of affordable housing,2  which further stresses tight family budgets. CMC are significantly more likely than other children to require health services and hospital admission. Their medical needs result in missed work days and lost wages for their parents, creating a shortfall that can make paying rent or mortgage or utility bills more difficult.

Although housing instability has negative consequences for all children, families of CMC face unique challenges. Poor-quality housing can impact medical equipment and symptoms; parents report mice chewing through gastrostomy tubes or respiratory symptoms worsening due to mold from a leaky roof. Lack of electricity due to faulty wiring or nonpayment of utility bills can threaten the lives of CMC who are technology dependent. Living in neighborhoods known for violent crime can make securing home nursing services more difficult. When families do not have a consistent address, they may miss receiving mail, from appointment reminders to medical supply deliveries to Medicaid reenrollment notices. Without Medicaid reenrollment, coverage lapses, and the resulting fragmented care can have serious consequences for already vulnerable children: medication refills stop, durable medical equipment is recalled, and home nursing care ends. These failures easily lead to acute exacerbations of medical conditions, resulting in avoidable emergency department visits and hospitalizations.

CMC families who face financial challenges and subsequent housing instability are at risk for outright homelessness because most temporary housing solutions are not suitable for CMC. In most communities, quality housing resources are scarce, and subsidized housing has exceedingly long wait lists; families are left to find temporary housing solutions until more stable housing can be secured. When healthy children experience homelessness, their families may sleep in a car, enter a shelter, or stay with friends. But for CMC, such options are often impossible. Sleeping in a car is not feasible for a child with electric medical equipment. Emergency shelters, even those designed for families, present challenges such as daytime lockout hours, increased exposure to viral infections, and refusal to accommodate a CMC. Parents of CMC, spending significant time caring for their child and in the hospital, are at risk for social isolation, limiting a support system that might offer shelter. Isolation is amplified for families of CMC who move away from their community roots to live closer to pediatric care. Even for families with strong networks, friends and family may not have space for a child’s medical supplies, access via a wheelchair ramp, or comfort regarding home nursing presence.

The lack of suitable housing options can lead to CMC getting stuck in the hospital setting or shunted into foster care, resulting in substantial costs borne by the health care and child welfare systems. When CMC stay in the hospital, the meter of daily hospital charges keeps running at a rate that can approach $10 000 per day for an ICU-level bed, which is where many CMC must stay.3  The financial cost of entering foster care for CMC is likewise significant. Although rates vary by state, the average annual rate per child for medical foster care in Maryland is $60 534,4  whereas the medical group home rate is even higher, averaging $221 708 per child per year.4 

To prevent costs associated with unnecessary hospital days, health systems could be incentivized to support postdischarge housing via subsidies or temporary housing. One nonprofit organization in California that provides postdischarge housing to homeless patients reports decreased readmission rates and significant cost savings to partnering hospitals.5  Their programs assist in caring for the patient’s medical needs while also providing comprehensive services that support securing permanent housing.5  Research is needed to explore how states and health care systems could see a return on such an investment in housing supports for families of CMC.

Similarly, states could avoid foster care placement by providing families with housing subsidies and financial compensation for providing direct medical care to their child. Average monthly housing expenses in Maryland are a fraction of the $5000 per month spent for a medical foster care placement or the $18 000 per month for group home placement.4  How could states do this? The 2018 Family First Prevention Services Act permits states to use federal funds authorized by Title IV of the Social Security Act, (typically used to pay for foster care–related services) to cover services to prevent foster care placement. Housing assistance would be money well spent; permanent housing subsidies have been shown to significantly decrease family separation and foster care placement for families experiencing homelessness.6 

To take advantage of existing benefits, families of CMC should be screened for receipt of Supplemental Security Income (SSI). A recent study revealed that receipt of SSI decreased the risk of housing instability among families of CSHCN.7  Monthly SSI payments may provide the financial buffer families need to maintain housing stability. For children with disabilities who do not already have SSI, pediatricians can educate families about this benefit, provide handouts about how to apply, and support families in completing the necessary application.

In addition to SSI, families may be eligible for other governmental benefits that can relieve financial stress, including housing vouchers or subsidies, energy assistance programs, supplemental nutrition programs, cash assistance programs, and unemployment benefits. Linkage with social workers, case managers, and medical-legal partnerships is invaluable for families navigating these systems. Pediatricians who do not have direct access to these resources can familiarize themselves with local social service agencies and community-based organizations (such as parent advocacy groups for families of CSHCN) that support families in exploring and applying for eligible benefits. Additionally, pediatricians can support families at risk for utility shutoff by completing a medical certification form stating that their patient has a serious medical condition and that terminating utility services would be dangerous or life-threatening.

Although addressing the needs of individual families of CMC is crucial, we must also identify new practice and policy solutions. Interventions should address families’ housing needs while leveraging existing funding and benefits (such as family-first legislation and SSI), with the aim to then reveal any relative cost savings to relevant stakeholders and policy makers. For example, state-funded permanent housing subsidies may be less costly than foster care placement and may reduce need for foster care placement, and hospital-sponsored transitional housing for families of CMC may cost hospitals less than unpaid hospital days. Although supporting families of CMC to meet basic housing needs is the morally right thing to do, it may also be the financially right thing to do.

Caring for CMC with housing instability is a daunting problem. Although ad hoc solutions for specific patients are vital, system-level changes are the best way forward. For as important as the medical home is for these children, a stable home is even more important.

The concept for this article was based on participant discussion at the 2019 Robert H. Levi Leadership Symposium, which was focused on the ethical challenges of gaps in placements, supports, and services for CMC. We thank the symposium working group members for their contributions and the Levi family for funding the symposium.

Dr Seltzer conceptualized the article, drafted the initial manuscript, and reviewed and revised the manuscript; Ms Thompson and Dr Feudtner conceptualized the article and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

FUNDING: No external funding.

CMC

child or children with medical complexity

CSHCN

children with special health care needs

SSI

Supplemental Security Income

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.