April 4, 2020

Concerns of People with Disabilities During COVID-19

Immediate Need for Government Action to Support People with Disabilities and People Receiving Home Care

Interview, Paul Gauthier, Executive Director, BC's Individualized Funding Resource Centre Society
BC Government Emergency Financial Aid Still Leaves People on Income and Disability Assistance Below Poverty Line - Yi Nicholls

Concerns of People with Disabilities During COVID-19

Immediate Need for Government Action to
Support People with Disabilities and
People Receiving Home Care

The government of British Columbia has responded to the crisis in long-term care facilities that existed prior to the COVID-19 pandemic but has been thrust into the spotlight by virtue of the number of facilities experiencing outbreaks and the high proportion of deaths from COVID-19 in long-term care facilities. Orders were issued by the Provincial Health Officer on March 26 that are meant to ensure that workers will only work in one long-term care facility. More is needed, including guarantees of personal protective equipment, child care for workers, etc., and workers and health care unions continue to fight for what is necessary.

In all the measures that have been taken by the provincial and federal governments, the extremely difficult situation facing people with disabilities and others receiving home care has received no attention. In British Columbia there are no directives regarding measures necessary to protect the health and well-being of the home care workers and the people receiving the service, with the consequence that throughout the province there are a myriad of protocols and some workers report that they have received no instructions at all as to how to protect themselves and those they care for. Such services are provided by the public Health Authorities as well as by a number of agencies that are based on providing services for private profit.

Besides those who receive home care through the Health Authorities or private agencies, there are over 1,200 people with disabilities and seniors who receive government funding to hire, train and manage their care providers. In some cases the individual receiving the care is the employer, in some cases it is the family of an individual receiving care. The provincial government program that provides the funding is Choice in Supports for Independent Living (CSIL). Many individuals require 24-hour attendant care and in most cases hire several caregivers. Many caregivers work for more than one employer which can include other CSIL employers, agencies, Health Authorities, long-term care facilities, and more. The orders that have been issued by the Provincial Health Officer make no reference to home care workers or to CSIL employers, which has created a situation of confusion. One of the five Health Authorities, Island Health, has sent a letter to CSIL employers on Vancouver Island implying that the "one employer" order regarding long-term care facilities will also be applied to CSIL employers and employees. The letter states "Island Health needs to have some staff identifier information from you so that we can collate and determine a plan to assign staff a single site. [...] This is the information we request from you to support our attempts to limit or reduce worker mobility from one site to another during the current public health emergency and the serious hazards that may result from workers traveling between sites if they have been exposed to infection." Neither the Provincial Health Officer nor any other Health Authority has contacted CSIL employers. Workers who have been instructed that they have to choose "one site" if they work in long-term care do not know whether they would be able to continue to work in home care or for a CSIL employer if they choose one long-term care facility as their "one site."

It is unconscionable that the provincial government has not only failed to address the needs of British Columbians with disabilities, particularly those who manage their own care, but has allowed the proliferation of misinformation and disinformation and has failed to communicate with BC's Individualized Funding Resource Centre Society (IFRC). The organization was established by CSIL employers -- individuals and families of people with disabilities and seniors who receive CSIL funding -- to help them succeed on the CSIL program and other individualized funding programs in BC.

At this time, when there is open discussion about rationing of care should the pandemic overwhelm the capacity of the health care system to provide the necessary care for everyone, people with disabilities are raising the alarm. Advocates, including people with disabilities, point out that even in 'normal' times, the issue of Medical Assistance in Dying (MAiD) is presented to people with disabilities when no one would even think of having such a conversation with others.

One of these advocates is Paul Gauthier, the Executive Director of the IFRC Society. Speaking to Workers' Forum about the very real danger facing people with disabilities today, Paul said, "I am shocked and appalled a lot of times that the system is feeling that it's okay to talk about MAiD so quickly. Most people with disabilities that choose to use MAiD do so because they are not getting the appropriate supports to start with, and so they don't want to be a burden to their family, they don't want to be a burden to society and so what ends up happening is that they feel that this is the only alternative. I think more and more people are starting to use that option because the system isn't providing enough home support hours for people to be able to live, not just getting up and going to bed at night, but the quality of life that needs to happen during the day." Canadians, not just people with disabilities and their advocates, reject the characterization that any human being is a "burden" on the health care system, that some lives are less valuable than others, that some are dispensable. Seniors, adults and children with chronic health conditions and physical and developmental disabilities have a right to the best health care society can provide.

On March 28, the Association of CSIL Employers (ACE) wrote to the Ministry of Health requesting that the Ministry:

1. Clarify and communicate to the respective health authorities and the CSIL community the impact and effect of orders of our provincial health officer as it relates to community care in British Columbia;

2. Permit individuals on the CSIL program the ability to hire immediate family members during this pandemic;

3. Temporarily suspend the requirement to obtain prior approval to utilize agencies for emergency staffing;

4. Ensure that sufficient supplies of medical equipment, i.e. masks, gloves, sanitizer, cleaning supplies, are available to high risk CSIL employers and their staff and that the costs associated with these supplies and/or medical equipment is accessible and supplemented through current or additional CSIL funding;

5. Ensure that CSIL employers have access to additional funding from their respective health authority to manage emergency employment circumstances such as in situations where staff is unable to come into work;

6. Ensure that CSIL employers have the ability to have their employees, should they be comfortable, accompany them if hospitalized;

7. Ensure that ACE is engaged in all decision-making process as it relates to CSIL employers.

The Ministry of Health and the Health Authorities must immediately take action to implement these demands.

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Interview, Paul Gauthier, Executive Director, BC's Individualized Funding Resource Centre Society

Paul Gauthier is the Executive Director of B.C.'s Individualized Funding Resource Centre Society (IFRCS) which was established to help people succeed on the Choices in Support for Independent Living (CSIL) Program and other individualized funding programs in British Columbia. The Centre supports individuals and families of people with disabilities and seniors whose funding is received from the province for home care. For more information visit: www.ifrcsociety.org. He spoke to Workers' Forum on March 22.

Workers' Forum: What is the impact on people with disabilities of both the pandemic and measures taken by government?

Paul Gauthier: This is an important discussion. There are many vulnerable communities; Indigenous people, women in abusive situations, seniors and others. Government is responding to some but there has not been a word about what's happening for people with disabilities. People with disabilities have specific needs, including the needs of younger people with disabilities, different needs of people with physical and developmental disabilities, but at the end of the day there's a lot of common components around physical care, emotional supports, and others. We are concerned about the recent announcement by government that workers who are working in a facility are not allowed to work in any other facility, without any real clear direction of what that means. I am concerned that all of a sudden someone who would be maybe working with me because I happen to be somebody in a wheelchair myself, means that if they happen to be working in a facility and they get their greater hours there, ultimately they're going to have to say "Paul, I'm sorry, I can't come to you." All of a sudden my morning person isn't available any more. And it's happening at a snap, right? Also what's happening is for people with disabilities if you're getting funding from CSIL [Choice in Supports for Independent Living], where the funds come to you directly, as an employer we're not even getting a chance to react. We're getting a phone call, many people are starting to get phone calls from their workers saying "I've been told by my other employer that I have to pick which one I'm going to work for." For now the direction is about facility to facility, it actually doesn't state that you can't work with a private client, a private employer technically speaking, it doesn't address us yet. Maybe that's the intent but I don't believe it was the intent. They're concerned about facility to facility at the moment. For the health care workers I don't think we should be saying "don't go to work." We need to be making sure that they have the face masks, gloves, all the equipment they need, and training on handwashing, things like that. There is an urgent need for government to get these supplies out to the health care workers. People with disabilities have asked government for assistance around getting access to masks, gloves, hand sanitizer because it's needed. And it's not just needed because of COVID-19. For many people with disabilities they actually need that for their personal care routines to start with. And then all of a sudden there's none available. Something needs to be done and it needs to be done now for people with disabilities who do hire on their own, so that they can protect their workers, so they can protect themselves. I am really worried about this. I'm worried about this kind of direction, but I'm also wanting to make sure that government is a bit more lenient for people with disabilities on how perhaps they choose to use some of the CSIL dollars to support giving their staff what they need as well. There are very strong rules about what's allowed and not allowed.

WF: Can you give an example of that?

PG: I think in emergency circumstances people with disabilities need to be able to hire whoever they need to get the support. On the CSIL program you are allowed to hire family members but to do so you have to go through quite a process to be allowed to have your mom work for you, or your husband or wife. Under this circumstance there should be a way to be able to allow that to just automatically be okay during this pandemic. In many cases the reason that the person is getting support is that family is not able to do it. Families need to work and there is too often pressure on families to provide care. We see a lot of it when it comes to people who become disabled as a result of a car accident. You're married and it's expected that the husband or the wife is to care for the individual, which causes so many social problems. Spouses should not be forced, - whether or not this is a good plan should be up to them to determine. In these circumstances the rules should be relaxed.

I think government also needs to understand that restricting care workers to only one employer is affecting not just their livelihood but the well-being and safety of those two or three individual clients that they're working for. We have to figure out how to ensure the health and safety of caregivers while making sure that vulnerable people are not dying for other reasons.

WF: The system was not functioning appropriately to meet everyone's needs in 'normal' times so is it accurate to say that when you go into crisis you're not starting from a safe place, you're starting from a place that's already unsafe?

PG: Exactly, and I think we need to look at other things like MAiD, doctor-assisted suicide. This gets mentioned to people with disabilities way too early. I think more and more people are starting to use that option because the system isn't providing enough home support hours for people to be able to live, not just about getting up and going to bed at night, but the quality of life that needs to happen during the day. With home support someone who uses a ventilator can live a very good life now. In the past somebody on a ventilator had to be in an extended care facility and be treated by nurses. Now somebody on a ventilator can be out in the community living a full life, being engaged, being involved, but they need somebody 24 hours a day with them and that is the reality and workers should be paid a reasonable rate to be there for that 24 hours. Government has to take measures to ensure that any new measures take into account and guarantee the care that is needed by people with disabilities.

WF: Besides the prohibition of caregivers working for more than one employer and how that may impact people with disabilities and how that could be addressed, do you have any other suggestions? For example, can any of the workers who are not able to work right now, like daycare workers, because their workplaces have shut down, be mobilized?

PG: Yes. One of the things that is high on my list is that this is the population that would be able to work well with many of our CSIL employers who will be looking for more caregivers. There are many people with disabilities that don't need a lot of significant medical care. Many of them are people like me who can verbalize how to do my personal care, feed me and so on. I can tell them what to do. There are so many workers out there that are in the 'hospitality' industry, working on cruise ships, things like that, so many amazing skilled workers that would be able to work so well with us. Frankly, people with disabilities love to be able to have a worker who they can just talk to and that they can communicate with as they're doing the care, chat about what is happening in the world. They would have to follow all the hand-washing techniques and all those things, maybe have to wear a mask, but CSIL employers will make sure that all those things happen with somebody that may not have the experience in being a care aide.

Please publish my email address (paul@ifrcsociety.org) for people who are looking for other work and are open to working with people with disabilities and being able to help both with doing some personal care such as bathing and showering, helping with meal preparation and a bit of housekeeping. As long as they're open to learning how to do the personal care, when someone is brand new we are willing to explain in detail.

(Photos: IFRC)

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BC Government Emergency Financial Aid
Still Leaves People on Income and Disability Assistance Below Poverty Line

On April 2, BC's Social Development and Poverty Reduction Minister Shane Simpson announced that the provincial government would be providing a $300 per month "crisis supplement" for three months during the COVID-19 pandemic. Simpson said the supplement will go to 205,000 British Columbians on income and disability assistance, and 58,000 low-income seniors. This comes to a total of $78 million, out of an amount of $1.1 billion the province has designated in financial support measures (announced on March 23), to assist people whose income has been affected, assistance with rent, a pause in the payment of student loans and assistance for those unable to pay monthly bills.

For the next three months, those on basic income assistance will now receive $1,060, while those on disability assistance will receive $1,428. A single parent with two kids on disability receives $1,609 a month, for a total of $1,909 with the supplement. Notably, the emergency supplement still leaves people on income and disability assistance below the poverty line, which the BC government puts at $1,666.66 income per month for a single person. Besides those receiving income and disability assistance, there are another 250,000 British Columbians who live below the poverty line.

The BC government has ended claw-backs for people receiving income or disability assistance who are eligible for the new $2,000 Canada Emergency Response Benefit. However, it is not allowing those on disability to be eligible for the $500 COVID-19 grant to help renters.

This situation raises the key question of why in a modern society the direction of the economy cannot be organized to ensure that the most vulnerable in society can be provided the means to live in dignity, and that this is not a matter of short-term emergency measures but requires the people to organize for a fundamental change in the direction of the economy.

It also underscores the necessity for working people to make their claims on the society, especially during times of crisis, so that governments cannot be permitted to abandon their social responsibility. The $300 per month temporary emergency supplement likely would not have come without the intervention of various rights and advocacy organizations that on March 20 issued seven emergency measures through the BC Poverty Reduction Coalition. Those demands are as follows:

- Provide an immediate significant monthly raise to income and disability rates in BC, with immediate distribution.

- End all the claw backs of both earned and unearned income from those on income and disability assistance to allow people to retain as much income as possible.

- Provide provincial financial support for those who are not eligible for Employment Insurance benefits.

- Implement a province-wide moratorium on all evictions. (The BC government announced such a measure on March 23.)

- Seize hotel, hostel, and other available shelter assets through-out the province to provide those who are homeless and unsheltered, and those sheltered in unsafe, crowded conditions, a safe place to live and access sanitation for a minimum of three months, with planning in place to ensure transition to viable long-term homes after.

- Organize and fund a province-wide, province-led emergency home food delivery system, in collaboration with municipalities, targeting low-income households isolated at home due to existing health conditions, age status and general risk to COVID-19, and increase funding for non profit front-line community agencies providing meal programs in BC to purchase what they need.

- Implement a six-month period of interest and repayment relief for all holders of provincial student loans, effective immediately. (The province announced on March 23 that it will freeze BC student loan payments for six months.)

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