Obtaining and Maintaining Assistive Devices and Technology 

Interviews with paid and unpaid caregivers have revealed persistent gaps in access to assistive devices and technologies. For the purposes of this reflection, we define assistive devices and technologies as any equipment that assists people affected by disabilities. Examples that have been discussed in our interviews include hospital beds, wheelchairs, scooters, lifts, standers, and text-to-speech (TTS) devices. Assistive devices and technology play a crucial role in caregiving by alleviating the physical burdens on caregivers and enhancing the autonomy and independence of care recipients. Despite their importance, people experience significant difficulty obtaining and maintaining assistive devices and technology. Government funding is inadequate, and people often rely on non-profit organizations to access and repair equipment. Even if these devices were accessible, infrastructure often does not accommodate mobility aids such as wheelchairs and scooters. In this context, infrastructure refers to aspects of our physical environment such as building entrances and public transit. These issues reflect widespread challenges embedded in the medical-industrial complex. 

First, participants discuss the challenges they face when obtaining and maintaining assistive technologies and devices. Lack of funding and gaps in funding are particular points of issue in these discussions. While some government support for assistive devices does exist — such as the Assistive Devices Program (ADP) in Ontario — this funding is often inadequate for the needs of the individual with the disability. UD16 (64 y/o woman who cared for her brother with cerebral palsy) discusses how her brother was able to receive a scooter through this program; however, the scooter provided was incompatible with public transportation. UD21 (older man caring for his daughter with Down syndrome) discusses the thousands of dollars required for assistive devices for her daughter, most of which is funded through charitable organizations, or paid out of pocket, stating: “We claim, we claim as much as we can on income tax under medical expenses [but] most of its turned down” (30:07 – 30-22). Due to this lack of funding, many participants in this sample report that the person they care for receives devices/funding for devices through non-profit/non-governmental organizations, charities, or by purchasing them out of pocket, often with the financial support of family. This reveals gaps in funding that is already sparse. 

“We claim, we claim as much as we can on income tax under medical expenses [but] most of its turned down”

Moreover, the government will not pay to repair devices that are acquired through non-governmental avenues. Participants report their assistive devices breaking down or malfunctioning on a fairly regular basis. UD16 goes on to say that, because the scooter provided to her brother by the government was inadequate for his everyday needs, her father purchased him a smaller scooter that was more compatible with public transit. When this scooter broke down, as it inevitably did, repairs were paid for out of pocket, or the device was left in disrepair because the government does not cover repairs on devices they did not provide.  

Obtaining and maintaining assistive devices and technologies can be made easier or more difficult for individuals with a disability, reflecting widespread issues of deservingness and connectivity. Certain characteristics increase one’s ability to receive funding for necessary equipment, namely youth, access to support networks, and disability that adheres to societal notions of deservingness. Disability intersects with other marginalized identities and social stigmas to shape whether a person is deemed as deserving of social support. For example, Thorp and Larner (2024) find that in a nationally representative study of Welsh and Scottish voters, claimants perceived as even slightly responsible for their disability are deemed less deserving of government support than those who were born with their disability. UD21 (older man caring for his daughter with Down syndrome) describes being able to get sufficient funding when the care recipient was under 18. They assert that their funding carried over into adulthood solely because their daughter has multiple disabilities, including developmental disorders. Had that not been the case, they likely would have become responsible for covering costs up to $20,000 when the porch or wheelchair lifts die and need replacement. This case speaks to the widespread issue of certain disabilities being viewed as more deserving of aid than others. 

Even amongst younger individuals with certain disabilities, obtaining and maintaining assistive devices and technologies depends on how connected they are to support networks. As previously discussed, government funding is sparse, forcing individuals and their families to seek out non-profit organizations. Oftentimes these non-profit organizations are found through informal caregiver networks and healthcare professionals, with social workers playing a minimal role. UD24 (older woman caring for her bedridden husband and daughter with autism) discusses her experience obtaining a hospital bed and mattress for her husband. She states that they “were very lucky in that [they] had a connection with Spinal Cord Injury Ontario,” (21:45 – 21:52) who had already provided them with wheelchairs. Having prior knowledge of the organization allowed UD24 to obtain a hospital bed when necessary. Contrastingly, UD25 (woman caring for a daughter born with a disability) was not made aware of potential sources of funding until her daughter was four years old. Currently, only the wheelchair and stander are subsidized by the government, all other equipment is paid for out-of-pocket, despite UD25’s daughter being a child. If, like UD21 and UD24, UD25 had been aware of funding sources from the non-profit sector, many more of her costs related to assistive devices would likely be covered. Gaps in government funding for assistive devices and technology force individuals with disabilities to depend on non-profit organizations, reinforcing societal notions of who is deserving of charity. Furthermore, pressure is put on caregivers to seek out these non-profit organizations, placing an additional burden on the caregiver. 

These challenges should guide policy solutions related to assistive technology, and interview participants offer some suggestions. UD30 suggests more government investment in private tech startups in the assistive technology industry to spur innovation. However, many of the interview participants recognize that the assistive technology that they have encountered frequently breaks down or are in need of repair. UD14 (46 y/o woman – caring for her daughter with quadriplegic cerebral palsy, mixed tone) notes, “On average, probably maybe once every two months, her wheelchair, something is breaking on her wheelchair. Or something is, you know, glitching on her talker device. All of these require my management and intervention” (00:20:20 – 00:21:28). In light of these experiences, Spektor and Fox’s discussion of the impact of planned obsolescence and profit motives on assistive devices (2020, 336-340) can highlight the risks of relying on private (for-profit) organizations for innovations/solutions. Other participants suggest simpler solutions, such as direct government funding for basic assistive devices and subsequent repairs, devices that are compatible with existing built environments, and more accessible infrastructure (including housing, public transportation, etc).