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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
- Barbara Biley -
  
• 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
- Barbara Biley -
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.
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.
- Yi Nicholls -
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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