I am writing to raise awareness and improve the health and safety of residents living under the VHA Shared Service/Directed Care Program. The COVID-19 pandemic has highlighted the ongoing concerns in long term care homes (Marrocco, Coke, and Kitts, 2021), yet the issues present in shared service living situations have received little attention.

As a 39-year-old with quadriplegia, I am more likely to experience poverty and less likely to be employed when compared with my able-bodied counterparts (Morris, et al., 2018). Fighting against the odds, as Founder and Director of IverFashion Inc., it is my goal to empower people with impairments by providing life changing wearable technologies combined with accessible fashionable designs (https://iverfashion.com/ Despite this, I am at the mercy of those who provide care and support for my complex healthcare needs. 

In VHA shared service/directed care environments, residents share support staff and are expected to be capable of directing their care. Accordingly, an assessment is conducted with a Case Coordinator to determine the amount of support and length of time required each day. The goal is to empower residents to reach a level of independence; however, there needs to be a level of trust between residents and care staff.

In the nine years that I have lived in a shared service environment, I have had to sacrifice my daily needs and decide which to prioritize because of staff shortages. I have found myself negotiating whether to receive assistance with showering, eating, or dressing and getting out for the day. Staff appear overworked and are often rushed. They often have little to no experience and are unable to address all these needs. There is a high staff turnover making it difficult to trust those who are responsible for my care - never knowing who is coming to get me up and ready for the day is most stressful. At times, I feel I am responsible for guiding care staff given their limited understanding of healthcare related tasks. This has impacted my mental health as I have the added burden of providing detailed instruction for staff as they attend to my various needs.

The best way to illustrate the severity of this situation is to have you imagine how you would feel if you were fully dependent on others for every basic need:

• Imagine having to choose between eating and showering that morning.
• Imagine being fearful to sleep because the CPAP mask that you rely on for oxygen has been improperly positioned.
• Imagine being left in bed all night unable to use the washroom.
• Imagine meeting someone for the first time who is responsible for lifting you out of bed with the immense fear that improper positioning will damage an ulcer that has taken 36 months to heal.

Prior to living in the VHA Shared Service/Directed Care Program, I was living with my mother and receiving home care through VHA Health and Home Care. This program involves care and support from a certified Personal Support Worker along with a supervisor. They took the time to pair workers and clients to their specific individual needs along with spiritual backgrounds, practices, and preferences ensuring compatibility. Sadly, I no longer receive this level of care.

Your party has committed to improving long term care with the hiring of more PSWs while increasing their wages to $25 an hour (https://liberal.ca/our-platform/ I am requesting that you extend that support to include shared service/directed care environments:

• Provide additional funding for shared service/directed care living environments: Staff shortages are commonplace, and they are rarely replaced. It is not unusual for staff to call in sick or not show up for a shift. Residents are left in their beds or wheelchairs for extended periods of time, and I have witnessed residents unable to use the washroom throughout the night due to staff shortages. This is unethical and inhumane. Additional funding would allow for more hiring and thorough training of new personnel.

• Ensuring that staff in these programs are required to hold PSW credentials with the associated wage increase: Presently, staff working under these programs are not required to be certified PSWs which places the residents at increased risk for harm and neglect. There is little incentive for staff to retain their positions given the low wages, and those that do decide to stay are often overworked and burnt out.

I would like to thank your party for prioritizing the inclusion of individuals with disabilities. In your party’s 2021 platform, the removal of barriers and discrimination facing individuals with disabilities is acknowledged. I ask that you extend this support to address the issues in shared service/directed care living environments and ensure that those who are willing and ready to pursue their dreams are not held back. As stated in your party’s platform, individuals with disabilities have the right to “enjoy the same quality of life all Canadians deserve.” 

References

Marrocco, F. N., Coke, A., & Kitts, J. (2021). Queen’s Printer for Ontario. Long-Term Care COVID-19 Commission: Final Report. ISBN: 978-1-7776961-2-2. Retrieved from:  https://files.ontario.ca/mltc-ltcc-final-report-en-2021-04-30.pdf

Morris, S., Fawcett, G., Brisebois, L., & Hughes, J. (2018). A demographic, employment and income profile of Canadians with disabilities aged 15 years and over, 2017. Statistics Canada. Catalogue no. 89-654-X2018002 ISBN 978-0-660-28689-1. Retrieved from: https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2018002-eng.htm