A recently published research report lays bare, province by province, how our country’s universal health care program is failing people with SCI—and how the situation in BC is among the worst in Canada.
Two issues ago, we published a feature about the unfair and often dangerous lack of funding for urinary catheter supplies that peers with SCI, here in BC and in other provinces, continually deal with (Fee to Pee, Summer 2022). You might recall that the story explained how there seems to be growing awareness of the problem of peers who rely on these essential supplies being forced to pay for them out of pocket, and how those who simply can’t afford to do this often resort to using—and more alarmingly, reusing—inferior products and techniques despite the risk of dangerous UTIs and other complications such as autonomic dysreflexia (AD).
Part of that feature focused on how University of Manitoba researcher Dr. Kristine Cowley was leading a team working on a research report that would attempt to confirm the disparities between provinces when it comes to funding urinary supplies, along with other essential supports and services such as mobility devices and attendant services. In October, that report was completed and published. Disappointingly, but unsurprisingly, it paints a damning picture of how our well-intentioned universal health care system is failing SCI peers in every province—and how BC is among the most problematic.
The report is titled Identifying Jurisdictional Gaps in Providing Essential Attendant Services, Medical Supplies, and Assistive Devices Needed by Canadians Living with Spinal Cord Injury.
Cowley, who is herself an SCI peer, co-authored the report with four collaborators: University of Manitoba associate professor and OT Dr. Jacquie Ripat, SCI Ontario Director of Public Policy Peter Athanasopoulos, medical writer and consultant John Gregory, and University of Manitoba grad student Peter Warkentin. Funding was provided by the University of Manitoba and SCI Ontario.
Identifying Jurisdictional Gaps in Providing Essential Attendant Services, Medical Supplies, and Assistive Devices Needed by Canadians Living with Spinal Cord Injury.
The report is a highly detailed analysis of how each provincial government health ministry provides—or fails to provide—funding that addresses the essential needs of people with SCI in three key areas: attendant services, medical supplies for neurogenic bladder and bowel, and mobility equipment, including wheelchairs, seating, and lift and transfer devices. At 91 pages, it might sound like a lengthy read, but it’s safe to say that most readers can find what they need in the report’s executive summary and in the sections that outline what’s available or not available in their own province.
At first glance, readers will quickly discover how bluntly and unapologetically it describes the critical nature of the services, supports and supplies it deals with. Here at SCI BC, it sometimes seems to us that, over the years, Canadians with SCI have had to resign themselves to having to practically beg (unsuccessfully, for the most part) for meaningful levels of government assistance when it comes to these supports—and being quietly grateful when a bone is tossed their way. This report bluntly rejects this mindset, beginning on the first page of the executive summary with this statement: “In this report, essential needs are defined as medical services, supplies or equipment that, if withheld, could result in death of a person with SCI within days or weeks.” It’s a clear and bold reminder that these supports are not luxuries or wish list options—they are, in fact, medical necessities that are absolutely critical for people with SCI to stay healthy and alive, and that the original intent of our universal health care system was to provide them as required.
On the same pages, the authors also succinctly spell out what they believe to be the primary reason for the problem: the devolution of decision-making to the provinces. “Today…there are limited processes in place to systematically identify ‘essential, publicly-fundable’ services and supplies between provinces/territories,” wrote the authors. “Thus, although universal health care is federally-mandated and transfer payments are provided to each province/territory, there is quite a bit of autonomy in determining health care delivery levels and financial coverage of medical services and supplies within each jurisdiction.”
The executive summary also condenses the report’s findings into six main points, which can be found at the end of the blog (note that, for conciseness, they have been slightly altered where we felt it was possible without changing the intent or meaning). But the researchers didn’t stop with simply pointing out the problems—the executive summary also contains five recommendations for change.
After the executive summary, the report then presents the situation in each province in detail, beginning with BC (the provincial breakdowns are ordered from west to east coast). For our province, the key takeaways, reprinted verbatim from the report, are as follows:
- There is a lack of health care workers, especially in remote areas.
- Lack of health support workers leads to increased reliance on family and friends as well as moves to institutional care facilities, even when inappropriate.
- Home support scheduling is viewed as too rigid; and assessments often viewed as prescribing inadequate care hours.
- Provision and approval of care at a regional health authority restricts ability to move from one health authority to another.
- Public provision of neurogenic bladder and bowel management supplies and wheelchairs is limited only to those receiving Employment and Assistance for Persons with Disabilities (EAPD). Funding model inadvertently encourages people to stay on disability or income assistance to retain coverage.
- Coverage for catheters goes against the Canadian Urological Association’s recommendation of single-use coated catheters for management of neurogenic bladder function (Campeau et al, 2020).
- Lack of affordable housing compounds all these issues.
These key takeaways are explained in detail in the following pages of the report.
Together, it all paints a picture of a frustratingly overly-complex mishmash of rules, regulations, inadequate funding, and often grossly unfair discrepancies in supply and services provision based on individual circumstances rather than basic human need.
While no province comes anywhere close to providing a perfect situation for people with SCI, it’s interesting to note that BC can only be seen as close to the bottom of the heap. Consider, for instance, the arcane practice of means testing as a way of restricting access to these critical, life-sustaining services and supports. There are just two provinces that use means testing for all three categories of attendant care, neurogenic bladder and bowel supplies, and mobility devices: BC and Newfoundland.
That’s not to suggest that there are any provinces or territories that can claim significantly better approaches. For example, only the province of Saskatchewan provides intermittent catheters free of charge to people with SCI. Even then, only four per day are provided as opposed to the six to eight recommended by the Canadian Urological Society (CUA)—and those catheters are among the least expensive available. In its conclusion, the document’s authors again pull no punches. “This research demonstrates the stark reality that, for the most part, the ten provinces expect Canadians with spinal cord injury to pay out of pocket for essential health services, supplies and equipment,” they wrote. “Citizens are means tested to determine co-payments. These findings call into question whether our provincial and federal governments are meeting the tenets of the Canada Health Act and the Convention on the Rights of Persons with Disabilities in Canada.”
The question now is what will happen to this report.
Dr. Chris McBride, Executive Director of SCI BC, believes the report is well-researched and written, and he’s working with SCI BC’s provincial counterparts, including report co-sponsor SCI Ontario, to develop a plan for all members of the SCI Canada federation to promote it and leverage it for change.
“For anyone familiar with the issue or who lives with the challenges our systems impose, there will be no surprises in this report,” McBride says. “We’ve known for decades that these funding inadequacies and discrepancies exist. But what this document does so well is remove the ambiguities and unknowns, and pinpoint for the first time the specific nature of the problems in every jurisdiction, BC included. The document now becomes a starting point for engaging our partners and stakeholders in a specific conversation about how we can work together to effect the much needed changes to the supports provided for these essential services, supplies, and devices.
“Here in BC, we have seen the provincial government make progressive changes to supports for other essential supplies, such as the recent announcement about removing the financial barriers to accessing menstrual supplies as part of its poverty reduction strategy.
Working with our members and partners, we will encourage the government to apply the same logical thinking to covering the essential core services, supplies, and devices outlined in the report, for not only would equitable coverage support the province’s poverty reduction strategy, it will also support the goals of the Accessible BC Act. Most importantly, we are talking about people and we must make sure everyone knows that we are taking about supports for things that are essential for people with SCI to live: essential to stay alive and essential to live as healthy and active participants in civil society. Yes, there is a cost to this, but the investment required will ultimately lead to a reduced burden on the health system and to economic benefits through participation in the labour force and the economy as a whole.”
We’ll publish any developments with this report in future issues of The Spin.
Identifying Jurisdictional Gaps in Providing Essential Attendant Services, Medical Supplies, and Assistive Devices Needed by Canadians Living with Spinal Cord Injury
OVERALL FINDINGS
- There are significant disparities and inequalities between provinces for each domain of essential need.
- Essential services and supplies are often difficult to access or request, involving complicated financial and functional assessments performed only by designated personnel.
- Despite having a great deal of expertise regarding their needs and a time horizon of decades of continual need for these services and supplies, those with SCI are relegated to passive recipient roles and subjected to repeat assessments of financial and functional status to receive minimal and often inadequate essential health care services, supplies or equipment. Furthermore, the allowance for earned income is too low to be able to afford these essential services, supplies and equipment. This leads to inappropriate reuse of supplies and creates strong disincentives to leave income assistance realms and enter the paid workforce.
- There are substantial inequities and shortages in essential attendant services. Means testing exists for attendant services/ home care for activities of daily living (ADL) in 5/10 provinces…with many charging an individual with SCI thousands of dollars per year once the person earns income above the poverty line…Generally, provinces restrict services to ‘in home only’ or have severe scheduling restrictions that make outside employment or training difficult or impossible to maintain. Also, substantial shortages in health care workers are reported…Scheduling and lack of access to services is exacerbated for those living in rural or Indigenous settings, which is further complicated by a lack of accessible housing. This often forces those with SCI to relocate to urban locations to obtain needed attendant services for ADL. Failure of community health care workers to make scheduled appointments in private home care provision settings places those with SCI at risk and puts unreasonable pressure on family and friends. Alternate delivery models exist (e.g., self-managed attendant care) which may alleviate scheduling or service location issues, but payment levels are inadequate, forcing service limitations that impair the health of those with SCI. Once care needs exceed a certain undefined ‘threshold’, those with SCI are often encouraged to seek life in institutions rather than remain active members of their communities.
- Means testing exists for essential bladder and bowel management supplies in 9/10 provinces (all but SK). Supplies are often severely limited such that recommendations of the Canadian Urological Society (CUA) cannot be achieved. The CUA recommends single-use hydrophilic coated catheters for all person with neurogenic bladder dysfunction, necessitating 6-8 catheters per day…In contrast, provinces limit catheters to 1-4 per day of ‘the most inexpensive option available’. Further, public provision of these essential supplies in many provinces are limited to those living under the poverty line or receiving some form of social assistance.
- Means testing exists for provision of essential wheelchair, seating, and lift and transfer devices in 4/10 provinces…or is based on providing a piece of equipment from a loans inventory program in 6/10 provinces. Programs are administered by health authorities in 3/10 provinces…or relegated to charities in 3/10 provinces…Wording in policy documents “most inexpensive suitable option” does not address the concept of a customized, functionally adequate wheelchair that considers the person’s pre-injury level of activity, employment and education interests and functional status. Provision of wheelchairs appears to be determined by contracts negotiated with national suppliers or availability of items in a loaned equipment pool that do not meet the individualized functional needs of each person with SCI. Most programs provide only one or a few models of wheelchairs and do not appear to have mechanisms in place to update available technology based on medical advances.
CONCLUSIONS AND RECOMMENDATIONS
- Overall, because of the lack of clarity and discrepancies across and within provincial jurisdictions regarding these three domains, a nonpartisan, objective scientific review committee/body should determine definitions of essential health care in Canada and identify minimal acceptable standards of care and treatment options. Recommendations for an acceptable standard of care/service should be determined by research-based evidence and reflect evolving changes in technology and medical advances. This will help to level the playing field across the country such that a person living with SCI in one province/territory will have the same access to essential medical supplies and services regardless of income.
- Attendant services for ADL are an essential health need and means testing-based provision of service in certain jurisdictions contravenes concepts of universality of health care in Canada. Current levels of attendant services are inadequate in many jurisdictions. Lack of access leaves those with SCI (and other disabilities) at significant risk and extremely limits their ability to remain active contributing members in Canadian society. Levels and quality of care need to increase.
- Means testing and limitations to the availability and coverage of medically necessary bladder and bowel management supplies is dangerously shortsighted and can lead to substantial increases in long-term costs to society through secondary complications such as urinary tract infections (UTIs), pressure injuries, and skin tears. More importantly, it leads to increased related morbidities, negative health outcomes and a reduced quality of life for individuals living with SCI.
- Power and manual wheelchairs for those unable to ambulate due to SCI are an essential need. Means testing and a lack of access to functionally appropriate equipment in a timely fashion exacerbates wait times for hospital discharge, and limits employment and educational opportunities and community participation of those with SCI. Provision of functionally appropriate wheelchairs should be introduced or improved in jurisdictions across Canada to meet the concept of universality of health care.
- A basic minimum allowance for essential medical supplies and services should be considered for those living with SCI, and these persons should be given greater autonomy in determining the characteristics of the services and supplies that meet their needs. In other words, essential health care services and supplies should be defined by functional need rather than earned income.
