Concerns Raised by Citizens With Disabilities Ontario Regarding Bill 175 and Patients' Rights

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Submission Re: Bill 175
Concerns with Patients’ Rights
June, 2020
Introduction
Citizens With Disabilities –
Ontario (CWDO) 
was
incorporated as a provincial
not-for-profit organization on
May 10, 2005.
CWDO is non-partisan
, with
a 
cross-disability focus
.
CWDO is the Ontario
representative for the
Council of Canadians with
Disabilities (CCD). 
We
participate in many CCD
initiatives and support CCD’s
pan-Canadian efforts.
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
2
Vision
Statement
Citizens With Disabilities - Ontario (CWDO) 
is committed to the rights
of all persons to participate fully in the civil, cultural, economic, political
and social life of their communities.
Image Credit: 
https://www.inclusionontario.ca/what-is-inclusion.html
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
3
Mission
Statement
CWDO actively promotes the
rights, freedoms and
responsibilities of persons with
disabilities through community
development, social action,
and member support and
referral.
Our primary activity is public
education and awareness
about the social and physical
barriers that prevent the full
inclusion of persons with
disabilities in Ontario.
Photo credit: 
www.coe.int
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
4
The Issue
No consultation of Bill of Rights
“Care” vs. “
services
 to promote independent living”
Language perpetuates stereotypes of persons with disabilities as
objects of pity and charity
Language entrenches “ableism” which undermines the value of
people living with disabilities
As current events illuminate, the existing Bill of Rights needs to be
strengthened, not 
demoted to regulation
Need to ensure broad consultation 
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
5
Concerns
“Care” vs. services to promote independent living
Concern that “care” is paternalistic rather than rights based
No acknowledgement of self-directed service, autonomy
Relegates  people with disabilities and seniors as “things” to be
looked after or “cared for”
I am not a patient unless I'm in a hospital or my doctor’s office
I AM A PERSON FIRST, WITH RIGHTS!
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
6
Validation of
Concerns
Lack of Protection
Fear of nursing homes - for example:
At 75, Arleen Reinsborough’s fear of nursing homes has her more
determined than ever to seek assisted suicide
https://www.thestar.com/news/canada/2019/01/20/hamilton-senior-in-unbearable-pain-wants-assisted-dying-to-save-
her-from-nursing-home.html
Nursing Home debacle exposed during COVID-19 Outbreaks
The Canadian Armed Forces’ May 26, 2020 scathing report exposed
the terrible conditions at five Ontario long-term care homes known
by all - including government - for years
Abuses, cockroaches, Inappropriate care and more
https://www.macleans.ca/wp-content/uploads/2020/05/JTFC-Observations-in-LTCF-in-ON.pdf
Murders - for example:
Serial killer nurse Elizabeth Wettlaufer slipped through cracks, even
though concerns and complaints were raised
Insufficient service levels for seniors and people with disabilities
living in the community – Well documented
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
7
My Story
1966 – I was forced to leave home permanently 
at the tender age of 7
in order to access services not available in the community 
1974 – I was told I would go to a nursing home at age 18 so had better
get used to
 
not having a
 
say in how I would live 
1976 – I was accepted into a pilot offering attendant services in the
community 
As an adult, I was able to direct my own services, live my own life, pay
my own rent and complete my education. 
1981 on – Immediately after graduating became gainfully employed
full time and continued working until I re
tired a
years ago.
Today -  I constantly live in fear that community services will be cut
back, and people like me will be forced back to institutions or that all
the institutional rules will come to bear in our personal homes
.
Few policy makers understand the importance of communit
y-
based
services, and of not treating us like we are sick in order to receive the
services we need to live independently.
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
8
Protections
Requested
1.
Keep the word “services” in the Act
2.
Entrench and codify “Rights for Patients, Consumers and
Clients” in the Act
3.
Hold broad consultation on the Act, including the “right” of
people to receive and direct their attendant services
4.
Recognize self-directed care models  as well as medical models
of service delivery
5.
Keep institutions out of our homes while allowing services to
flow in and out as needed
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
9
Outcomes:
Language
If “persons” are recognized in addition to patients:
Affirms the medical model is not the only model of service
Validates that people with disabilities are not “sick” even though
we need assistance with activities of daily living
Addresses ableism and negative stereotypes attributed to people
with disabilities
Acknowledges that services are provided in multiple home and
community settings
Protects the self-directed model of service which supports people
with disabilities to live in the community, with attendant services
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
10
Outcomes:
Bill of Rights
If Bill of Rights Are Entrenched
in the Act
Higher authority
Benefit of community
consultation
Higher accountability for
service providers
Better protection for patients
and others who receive service
in the community
Assurance to families, patients
and others who receive service
in the community that there is
recourse to address incidents
If Bill of Rights Are Delegated
to Regulation
Lowers authority
Community consultation not
required or could be very
limited
Less attention to rights by
service providers
Less protection for patients
and others who receive service
in the community
No assurance to families,
patients and others who
receive service in the
community that there is
recourse if things go awry
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
11
Presenter
Tracy Odell
President
Citizens With Disabilities – Ontario
(CWDO)
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
12
Contact
Information
Web: 
www.cwdo.org
Email: 
cwdo@tbaytel.net
Voice: 
807-473-0909
Contact CWDO
Social Media
Facebook:
www.facebook.com/cwdont/
Twitter: 
twitter.com/cwdo
Instagram:
https://www.instagram.com/
citizenswithdisabilities_on
Monday, June 15, 2020
Citizens With Disabilities – Ontario (CWDO)
13
Slide Note
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Citizens With Disabilities Ontario (CWDO) is advocating for the rights and independence of individuals with disabilities in Ontario. They express concerns over the existing Bill of Rights and emphasize the need for broad consultations to strengthen rather than demote it. CWDO highlights the importance of promoting independent living services over mere care, emphasizing the rights and autonomy of individuals with disabilities.

  • Disabilities
  • Patients Rights
  • Advocacy
  • Ontario
  • Independent Living

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  1. Submission Re: Bill 175 Concerns with Patients Rights June, 2020

  2. Citizens With Disabilities Ontario (CWDO) was incorporated as a provincial not-for-profit organization on May 10, 2005. CWDO is non-partisan, with a cross-disability focus. Introduction CWDO is the Ontario representative for the Council of Canadians with Disabilities (CCD). We participate in many CCD initiatives and support CCD s pan-Canadian efforts. 2 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

  3. Vision Statement Citizens With Disabilities - Ontario (CWDO) is committed to the rights of all persons to participate fully in the civil, cultural, economic, political and social life of their communities. Image Credit: https://www.inclusionontario.ca/what-is-inclusion.html 3 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

  4. CWDO actively promotes the rights, freedoms and responsibilities of persons with disabilities through community development, social action, and member support and referral. Mission Statement Our primary activity is public education and awareness about the social and physical barriers that prevent the full inclusion of persons with disabilities in Ontario. Photo credit: www.coe.int 4 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

  5. No consultation of Bill of Rights Care vs. servicesto promote independent living Language perpetuates stereotypes of persons with disabilities as objects of pity and charity Language entrenches ableism which undermines the value of people living with disabilities The Issue As current events illuminate, the existing Bill of Rights needs to be strengthened, not demoted to regulation Need to ensure broad consultation 5 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

  6. Care vs. services to promote independent living Concern that care is paternalistic rather than rights based No acknowledgement of self-directed service, autonomy Relegates people with disabilities and seniors as things to be looked after or cared for Concerns I am not a patient unless I'm in a hospital or my doctor s office I AM A PERSON FIRST, WITH RIGHTS! 6 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

  7. Lack of Protection Fear of nursing homes - for example: At 75, Arleen Reinsborough s fear of nursing homes has her more determined than ever to seek assisted suicide https://www.thestar.com/news/canada/2019/01/20/hamilton-senior-in-unbearable-pain-wants-assisted-dying-to-save- her-from-nursing-home.html Nursing Home debacle exposed during COVID-19 Outbreaks The Canadian Armed Forces May 26, 2020 scathing report exposed the terrible conditions at five Ontario long-term care homes known by all - including government - for years Abuses, cockroaches, Inappropriate care and more Validation of Concerns https://www.macleans.ca/wp-content/uploads/2020/05/JTFC-Observations-in-LTCF-in-ON.pdf Murders - for example: Serial killer nurse Elizabeth Wettlaufer slipped through cracks, even though concerns and complaints were raised Insufficient service levels for seniors and people with disabilities living in the community Well documented 7 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

  8. 1966 I was forced to leave home permanently at the tender age of 7 in order to access services not available in the community 1974 I was told I would go to a nursing home at age 18 so had better get used to not having a say in how I would live 1976 I was accepted into a pilot offering attendant services in the community As an adult, I was able to direct my own services, live my own life, pay my own rent and complete my education. 1981 on Immediately after graduating became gainfully employed full time and continued working until I retired ayears ago. Today - I constantly live in fear that community services will be cut back, and people like me will be forced back to institutions or that all the institutional rules will come to bear in our personal homes. Few policy makers understand the importance of community-based services, and of not treating us like we are sick in order to receive the services we need to live independently. My Story 8 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

  9. 1. Keep the word services in the Act 2. Entrench and codify Rights for Patients, Consumers and Clients in the Act Protections Requested 3. Hold broad consultation on the Act, including the right of people to receive and direct their attendant services 4. Recognize self-directed care models as well as medical models of service delivery 5. Keep institutions out of our homes while allowing services to flow in and out as needed 9 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

  10. If persons are recognized in addition to patients: Affirms the medical model is not the only model of service Validates that people with disabilities are not sick even though we need assistance with activities of daily living Outcomes: Language Addresses ableism and negative stereotypes attributed to people with disabilities Acknowledges that services are provided in multiple home and community settings Protects the self-directed model of service which supports people with disabilities to live in the community, with attendant services 10 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

  11. If Bill of Rights Are Entrenched in the Act If Bill of Rights Are Delegated to Regulation Lowers authority Community consultation not required or could be very limited Less attention to rights by service providers Less protection for patients and others who receive service in the community No assurance to families, patients and others who receive service in the community that there is recourse if things go awry Higher authority Benefit of community consultation Higher accountability for service providers Better protection for patients and others who receive service in the community Assurance to families, patients and others who receive service in the community that there is recourse to address incidents Outcomes: Bill of Rights 11 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

  12. Tracy Odell President Citizens With Disabilities Ontario (CWDO) Presenter 12 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

  13. Contact CWDO Social Media Facebook: www.facebook.com/cwdont/ Web: www.cwdo.org Contact Information Email: cwdo@tbaytel.net Twitter: twitter.com/cwdo Voice: 807-473-0909 Instagram: https://www.instagram.com/ citizenswithdisabilities_on 13 Monday, June 15, 2020 Citizens With Disabilities Ontario (CWDO)

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