“Devon” is a 17-year-old with a history of spinal cord injury resulting in paraplegia. Like most teenagers, he strives for independence from his parent(s). Yet, because of his physical disabilities and an inaccessible home environment, he requires assistance with all activities of daily living (ADLs). For the last 6 years, he has only received sponge baths in bed because his single Mom can no longer carry him up the stairs to the only full bathroom. More accessible, affordable housing is unavailable in their area, and they do not want to move away from their family or medical team. Devon and his mother have researched solutions, recognizing the potential relief that home modifications—such as a stairlift and roll-in shower—could bring. But they have limited financial resources and, after many internet searches and phone calls, are overwhelmed by the arduous process of identifying and applying for modification support.
Devon’s experience is not unique among families of children with medical complexity (CMC). Compared with those with healthy children, families of CMC are more likely to experience unsuitable, unaffordable, and stressful housing.1 Barriers to accessing home modifications can exacerbate these underlying housing inequities.
Home modifications—defined as “changes made to the home environment to help people to be more independent and safe in their own home and reduce any risk of injury to their carers”2 — have the potential to help families of CMC overcome some of their daily challenges. Examples include stair rails, wheelchair ramps, grab bars, bathroom and shower modifications, the addition of a first-floor accessible bathroom and bedroom suite, and even a redesign of outdoor spaces to promote child safety and inclusion in family activities. Home modifications offer more than increased accessibility, they promote independence and quality of life for the child and support families in their caregiving role.3,4 For example, a stair lift can provide Devon access to the second floor bathroom, allowing him to bathe more independently and privately. Additionally, a roll in shower can relieve his mother of the physical challenges of lifting him into a bathtub. Though data regarding the impact of home modifications in CMC is limited, adult literature shows that home modifications can decrease the level of care required for persons with disabilities.4 Moreover, there exists ample potential for home modifications to reduce housing inequities and improve outcomes related to fall-risk, self-care, independent function, physical health and well-being, and social participation.5
Despite the potential advantages, families with CMC face significant challenges accessing home modification resources. Searching for resources and obtaining modifications is a complicated process that involves significant time, money, and coordination among various stakeholders and siloed systems (Fig 1). Through our own efforts to catalog modification resources for CMC in Maryland, we discovered that resources exist, but not in any centralized or user-friendly fashion. First, one must locate funding sources for which a child qualifies based on family income or condition-specific eligibility criteria; next, necessary paperwork, and phone or in-person interviews must be completed to apply for funding. These initial steps alone require navigating often outdated and convoluted websites, calling phone numbers that are no longer in service, being referred to several different points of contact within the same organization, and waiting weeks or even months for a response. Additionally, CMC families describe barriers to home modifications related to home ownership status (renting versus owning), delayed insurance authorization and funding, or lack of insurance coverage for equipment and modifications.6
In recognizing the untapped potential of home modifications to improve care and housing equity for CMC, we must make this process easier. Pediatricians and families should advocate for the creation of an up-to-date, single point of entry, regional or state-wide centralized database and application process that directly connects families to housing modification resources. The database should include a centralized list of public and private resources with regularly updated contact information, eligibility criteria, application instructions, deadlines for application submission, waitlist times, and average turnaround times between application submission and funding approval. A list of local contractors with experience working with CMC families would also be beneficial.
The creation of a centralized database and application portal would not only improve access to resources for CMC and their families, it would facilitate efficient referrals from providers and community-based organizations and reduce resource waste by highlighting the existence of duplicative resources within a certain geographic area. For example, the Maryland Department of Disabilities’ Technology Assistance Program aims to create an annual Home Modifications Directory; though the information quickly becomes outdated within a matter of months, sometimes even weeks. Additionally, family-to- family health information centers funded by the Maternal and Child Health Bureau already exist within each state and may help CMC families navigate housing resources. Our proposed solution would require identifying and bringing together these siloed entities and others that are doing work in this area to create synergistic partnerships where resources are all accessed through a common portal. Collaboration with families of CMC, family advocacy groups, healthcare providers, community-based organizations, and payors (ie, Medicaid) is also critical to developing a well-coordinated, centralized application and referral system that meets the needs of the end-users, families like Devon’s.
To keep databases current and accessible, organizations cataloguing modification resources could partner with social care referral platforms (eg, findhelp.org) that already have the infrastructure and funding in place to maintain a resource directory and specialize in supporting closed-loop referrals between people seeking services and organizations providing them. At findhelp.org, database managers verify and add new programs and keep existing program information up to date. Families and providers can access the platform for free to search for and refer to relevant resources in their area. Partnering with an existing platform, such as findhelp.org, would also avoid costs associated with creating a new centralized database from scratch.
Although current platforms can centralize the resource directory and referral linkage, there is a need to develop a common application template that can be embedded within the platform, allowing an individual to apply for multiple resources at once. Families and providers spend hours completing paperwork on a regular basis, simply to renew the need for a child’s medical equipment, home nursing, school-specific needs, insurance benefits, and more. Completing applications repeatedly when such information has already been documented is inefficient, redundant, and unnecessarily time-consuming. Potential funding sources to develop a common application template include philanthropy, private organizations, local or federal organizations focused on housing (eg, local housing authority, US Dept of Housing and Urban Development), as well as local and federal programs targeting the broader care coordination needs of CMC, such as the Title V Maternal and Child Health Services Block Grant Program.7
Home modifications for CMC can positively impact both patients’ and caregivers’ quality of life. Adapting the home environment to better fit the needs of the child and family can improve health outcomes, promote independence, and make necessary ADLs significantly easier to perform. In recognizing this untapped potential of home modifications for CMC, pediatricians and families can advocate for the creation of a state or regionally based home modification resource database and referral platform. Keeping this information centralized, organized, and current will facilitate access to these crucial services, decrease resource waste, and optimize care for CMC. For patients like Devon, it could mean the first real shower in years.
Ms Uppal conceptualized the paper and drafted the initial manuscript; Drs Donohue and Seltzer conceptualized the paper; and all authors reviewed and revised the manuscript, approved the final manuscript as submitted, and agree to be accountable for all aspects of the work.
FUNDING: No external funding.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no conflicts of interest relevant to this article to disclose.
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