The Daunting Problem of Medical Complexity and Housing Instability

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The Daunting Problem of Medical Complexity and

Housing Instability

Rebecca R. Seltzer, MD, MHS,a,b_{B. Simone Thompson, LCSW-C,}a_{Chris Feudtner, MD, PhD, MPH}c

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 experiencefinancial 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 causedfinancial problems, and 54% stated that a family member stopped working because of the child’s health.1The rising price and short supply of homes has resulted in a widespread lack of affordable housing,2which 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 faceﬁnancial challenges and subsequent housing instability are at risk for outright homelessness because most temporary

a_{Department of Pediatrics, School of Medicine and}b_{Berman Institute of}

Bioethics, Johns Hopkins University, Baltimore, Maryland; and c_{Department of Medical Ethics, Children}_’_{s Hospital of Philadelphia,} Philadelphia, Pennsylvania

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 theﬁnal manuscript as submitted and agree to be accountable for all aspects of the work.

DOI:https://doi.org/10.1542/peds.2019-3284 Accepted for publication Nov 15, 2019

Address correspondence to Rebecca R. Seltzer, MD, MHS, Department of Pediatrics, School of Medicine, Johns Hopkins University, David M. Rubenstein Child Health Building, 200 N Wolfe St, Room 2060, Baltimore, MD 21287. E-mail: rseltze2@ jhmi.edu

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

FINANCIAL DISCLOSURE:The authors have indicated they have noﬁnancial relationships relevant to this article to disclose.

FUNDING:No external funding.

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

To cite: Seltzer RR, Thompson BS, Feudtner C. The Daunting Problem of Medical Complexity and Housing Instability.Pediatrics. 2020;146(1):e20193284

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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 toﬁnd 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.3The

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 $60 534,4whereas 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.5Research 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 andﬁnancial 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 theﬁnancial 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 relieveﬁnancial 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

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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 theﬁnancially 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.

ACKNOWLEDGMENTS

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.

ABBREVIATIONS

CMC: child or children with medical complexity CSHCN: children with special

health care needs

SSI: Supplemental Security Income

REFERENCES

1. Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national proﬁle of caregiver challenges among more medically complex children with special health care needs._{Arch Pediatr Adolesc Med}. 2011;165(11):1020–1026

2. Joint Center for Housing Studies of Harvard University. The state of the nation’s housing. 2017. Available at: www.jchs.harvard.edu/sites/default/ﬁle s/harvard_jchs_state_of_the_nations_ housing_2017.pdf. Accessed August 15, 2019

3. Nationwide Children’s Hospital. Price Information. Available at: https://www.

nationwidechildrens.org/your-visit/ billing-and-insurance/pay-my-bill/price-information-list. Accessed May 18, 2020

4. Maryland State Department of Education. Fiscal year 2019 interagency rates committee provider rates. Available at: http:// marylandpublicschools.org/programs/ Documents/Special-Ed/IRC/

RatesSummaryALLProviders.pdf. Accessed August 21, 2019

5. Illumination Foundation Recuperative Care. A Safe Discharge Plan for the Homeless Patient. Available at: https:// ifrecuperativecare.com/wp-content/ uploads/2018/08/IFRecup_Brochure_ 2016_Final.compressed.pdf. Accessed August 21, 2019

6. Shinn M, Brown SR, Gubits D. Can housing and service interventions reduce family separations for families who experience homelessness?_Am

J Community Psychol. 2017;60(1–2): 79–90

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Pediatrics. 2019;144(2):e20181704

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DOI: 10.1542/peds.2019-3284 originally published online June 19, 2020;

2020;146;

Pediatrics

Rebecca R. Seltzer, B. Simone Thompson and Chris Feudtner

The Daunting Problem of Medical Complexity and Housing Instability

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DOI: 10.1542/peds.2019-3284 originally published online June 19, 2020;

2020;146;

Pediatrics

Rebecca R. Seltzer, B. Simone Thompson and Chris Feudtner

The Daunting Problem of Medical Complexity and Housing Instability

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