Bill 77, an Act to Provide Services to Persons with Developmental Disabilities, to Repeal
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Bill 77, An Act to provide services to persons with developmental disabilities, to repeal the Developmental Services Act and to amend certain other statutes
Written Submission of
ARCH Disability Law Centre
To the
Standing Committee on Social Policy
August 12, 2008
Kerri Joffe and Lana Kerzner ARCH Disability Law Centre 425 Bloor Street East, Suite 110 Toronto, Ontario, M4W 3R5 (416) 482-8255 or 1-866-482-2724 (Voice) (416) 482-1254 or 1-866-482-2728 (TTY) (416) 482-2981 or 1-866-881-2723 (Fax) www.archdisabilitylaw.ca [email protected] [email protected]
1 Summary of ARCH’s Recommendations
In this submission, ARCH makes recommendations regarding the following;
1. The Need for a Preamble and a Purpose Provision 2. Concern Regarding Regulations 3. Rights for People with Developmental Disabilities 4. Mental Capacity and Decision Making 5. The Need for Provisions to Address Abuse 6. Tenancy Rights and Protections 7. The Obligation to Promote Fairness in Decision-Making 8. Appeals of Eligibility Decisions 9. Complaints and Appeals about Services 10. Application of the Statutory Powers Procedure Act to Appeals of Eligibility Decisions and Complaints and Appeal about Services 11.The Need for an Advocate 12.Inspections and Enforcement 13.Personal Information 14.Restraints 15.Waiting Lists 16.Labour Concerns and Collective Agreements 17.Transitioning of Children and Youth into the Bill 77 Legislative Scheme
2 A. INTRODUCTION
ARCH supports the creation of new developmental services legislation in Ontario. In this respect, we welcome the introduction of Bill 77. However, ARCH does not support Bill 77 as it is currently drafted in that, in our view, it does not create a developmental services system that is based on fundamental values of full citizenship and inclusion. Its failure to address rights, complaints and appeals and abuse, for example, cause great concern that the lives of people with developmental disabilities will not be improved notwithstanding legislative reform.
Bill 77 does not promote rights for people with developmental disabilities. Rather, it focuses disproportionately on details of service provision and funding without sufficient regard to the impact that these programs have on people with developmental disabilities. In particular, while Bill 77 is extensive and detailed, it does little to address the concerns we hear. It is ARCH’s view that these problems have arisen, in part, from the flaws and gaps of the current Developmental Services Act and its associated regulations. Legislative reform is long overdue and we urge the Committee to harness this opportunity to ensure that the flaws in the current system will not be repeated.
In this submission we propose amendments and additions to Bill 77 that would create a rights-based framework for people with developmental disabilities who receive government services and funding. Our submission also identifies areas of Bill 77 that could benefit from greater clarity or detail. Where appropriate, we propose language that could be adopted as amendments to Bill 77. In each instance we comment on the rationale for proposing the change or addition and set out our recommendation. A list of all our recommendations is included as an appendix to this submission.
Our comments and recommendations are put forward with the intent of improving the safety, quality of life and protection of the rights of people with developmental
3 disabilities. In each instance, our perspective is informed by our years of legal advocacy on behalf of Ontarians with developmental disabilities.
B. TERMINOLOGY
In our submission we use the term “developmental disability” as this is the term used in Bill 77. In doing so, we note that there are various views regarding the most appropriate language and we defer to members of the community and people with disabilities themselves regarding appropriate terminology.
C. ARCH AND ARCH’S EXPERIENCE WITH PEOPLE WITH DEVELOPMENTAL DISABILITIES
C.1. About ARCH
ARCH is an Ontario-based community legal clinic that is dedicated to defending and advancing the equality rights of people with disabilities. ARCH is governed by a volunteer board of directors, a majority of whom are people with disabilities. We provide a telephone summary advice and referral service to Ontarians with disabilities and represent individuals as well as provincial and national disability organizations in test case litigation at all levels of tribunals and courts. We provide education to people with disabilities on disability rights and to the legal profession about disability law. We make submissions on matters of policy and law reform. ARCH maintains a web site on disability law at: www.archdisabilitylaw.ca.
ARCH’s experience with people who have developmental disabilities is broad and is based on our contacts with people with disabilities themselves, their families and support people, advocates and community organizations. ARCH regularly hears concerns about the delivery of supports and services to people with developmental disabilities, and ARCH staff provide legal information and advice as part of our summary advice and referral service to individuals who have a developmental disability. ARCH has represented clients in litigation
4 dealing with developmental services issues.1 We have engaged in discussions of these issues with consumer and advocacy groups and have conducted legal and non-legal research on supports and services for people who have developmental disabilities.
C.2. Experiences of People with Developmental Disabilities who contact ARCH: Rights Violations and Other Concerns
ARCH’s fundamental concerns regarding developmental services relate to injustices and abuse to which people with developmental disabilities are subject in their receipt of services, especially in group homes. In preparing our submission, we reviewed records of calls from people with developmental disabilities, their families and service providers made to our summary advice and referral service over the past five years. The majority of concerns relate to serious rights deprivations in group homes that, in our view, society would never tolerate in the lives of people who do not have disabilities.
People complain about all forms of abuse in group homes that create a living hell both for the individual and those who support him/her. We have been told about people being dragged down stairs, being left in the cold without blankets, being prevented from seeing family and friends, experiencing neglect relating to medical needs and having their cherished personal belongings stolen. People have been refused transfer requests despite an existing abusive situation. However, they have also been forced to move from one group home to another without regard to their wishes or the disruption created in their lives. Over and over we hear of desperate and failed attempts to resolve these situations through
1 ARCH was co-counsel in N.(R.) (Litigation Guardian of) v. Ontario (Minister of Community, Family and Children's Services) (2004), 70 O.R. (3d) 420, [2004] O.J. No. 1135 (Div. Ct.), which considered the delivery of services under the Child and Family Services Act, R.S.O. 1990, c.C.11, to a child with severe developmental disabilities. ARCH was counsel to People First of Canada and the Canadian Association for Community Living in the Supreme Court of Canada’s consideration of Nova Scotia (Minister of Health) v. J.J., [2005] 1 S.C.R. 177. In that case the Supreme Court considered the interpretation of the Adult Protection Act. R.S.N.S. 1989, c. 2, of Nova Scotia, which aims to protect adults with developmental disabilities from abuse and neglect.
5 the group home and/or the Ministry of Community and Social Services that funds the homes.
The following are some examples of the experiences of people with developmental disabilities who contact ARCH. We have reported the examples in a generic form to protect anonymity.
A person with a developmental disability who lived in a group home was often left without blankets in the cold. This person was also confined to a “timeout room” for significant periods of time, where self-inflicted injuries occurred as a result of the disability. Many family members report that staff at the group home do not return their phone calls, do not transfer their calls to their family members or do not give their family members messages. A family member reported that his relative with a developmental disability often had bruises and had told him that she had been dragged down the stairs by group home staff. A person with a developmental disability was forced not to attend behaviour therapy appointments and was forced to miss doctors’ appointments. A person with a developmental disability was not permitted to leave the group home with his parents for longer than 45 minutes at a time. Staff at a group home did not take appropriate actions to maintain the blood sugar of a person with a developmental disability who had diabetes. A group home informed the family that their relative with a developmental disability was exhibiting behavioural problems. The group home gave the family two options: their relative would have to be drugged if they wanted him to remain at the group home, or he would have to be transferred to a group home far away.
6 D. ARCH’s RECOMMENDATIONS
D.1. The Need for a Preamble and a Purpose Provision
Preambles and purpose sections are important components of an Act. A preamble sets out important facts or considerations that led to the enactment of the legislation. It may also set out goals the legislation aspires to achieve and principles the legislation is meant to implement.
A purpose provision sets out the governing principles or policies of legislation or the objectives it is meant to achieve.2
During the four days of public hearings, the Standing Committee heard many stakeholders call for the addition of a preamble to Bill 77. People with developmental disabilities, their families and service providers all feel that transformation is desperately needed in the developmental services sector, and they have called for the addition of a preamble to Bill 77 to set out the principles and values that will guide such transformation.
The government, too, is aware of the need for transformation in this sector. During Parliamentary debates, Minister Meilleur spoke about Bill 77 as legislation that will transform Ontario’s developmental services into a modern system of supports and services for people with developmental disabilities. She stated that Bill 77 recognizes that people with developmental disabilities can live independently in their communities with the right supports, and that the government is committed to creating a system that is based on citizenship, fairness, accessibility, accountability and sustainability.3 In short, both government and the community agree that the new developmental services system should have as its primary aim the support of people with developmental
2 R. Sullivan, Sullivan on the Construction of Statutes, 5th ed. (Markham: LexisNexis, 2008) at pg. 387. 3 Ontario, Legislative Assembly, Debates (May 26, 2008) at 2042-2043.
7 disabilities to live as full citizens in their communities. In ARCH’s view, legislation that aims to set new social policy and transform a sector must clearly say so – we need to know where we’re going in order to get there.
Bill 77 is being introduced at a time when the closure of all of Ontario’s developmental services institutions is imminent, and there is a growing recognition that people with developmental disabilities are people first. Since one of the functions of a preamble is to set out important facts or considerations that led to the enactment of the legislation, it is particularly apt to include a preamble at this time in order to mark this important moment in the history of developmental services in Ontario.
Although different, a preamble and a purpose provision are both authoritative sources of information regarding the manner in which an Act is to be implemented, interpreted and applied. ARCH submits that both are required in this legislation. These components serve the important and practical function of guiding the way in which the law is to be interpreted, applied and implemented. Both are relied on to understand the legislative intent and values behind a given Act. They may also be relied on to resolve any ambiguity in the Act, determine the scope of the Act or generally understand the meaning and effect of legislative language.4 A preamble and purpose provision will help to ensure that the Ministry, directors, inspectors, application centres, service agencies and others who are charged with implementing Bill 77 will carry out their duties in a way that achieves the goal of enhancing the citizenship and social inclusion of people with developmental disabilities. In addition, a preamble and purpose provision will help to ensure that courts and administrative tribunals will interpret and apply the law in a way that achieves these goals.
A preamble and a purpose provision also serve important law making functions. Inserting these components will ensure that the legislative scheme is internally
4 Legislation Act, S.O. 2006, c. 21, Sch. F, s.69; R. Sullivan, Sullivan on the Construction of Statutes, 5th ed. (Markham: LexisNexis, 2008) at pg. 270-271, 384-386.
8 consistent by providing a lens through which to evaluate the rest of the Bill. Moreover, these components will also assist future policy makers and legislators to create regulations and policy directives that are in harmony with the rest of the Act. A preamble and a purpose provision apply to any regulations that are made pursuant to an Act. Therefore, the objectives and values set out in the preamble and purpose sections will influence the regulations that are made and the way in which such regulations are interpreted and applied.5
The legislature must not miss this opportunity to entrench important values and goals in the legislation and to ensure that Bill 77 will be implemented in a manner that achieves these values and goals.
Recommendations:
1.) ARCH recommends that a preamble and a purpose provision be added to Bill 77.
2.) ARCH recommends the addition of a preamble that includes the following statements:
The people of Ontario and their government:
believe that people with developmental disabilities are equal and valued citizens of the province of Ontario and enjoy all the rights of citizenship, including, but not limited to, equal protection and equal benefit of law, access to justice, health care, education, and transportation;
recognize that many people with developmental disabilities experience barriers that prevent them from enjoying their rights of citizenship and hinder their full participation in the life of the province on an equal basis with others;
5 R. Sullivan, Sullivan on the Construction of Statutes, 5th ed. (Markham: LexisNexis, 2008) at pg. 368.
9 believe that funds and services provided to people with developmental disabilities must enhance their opportunities to enjoy the benefits and fulfill the duties of citizenship and to participate in the life of the province on an equal basis with others;
affirm that people with developmental disabilities have the right to self- determination, which includes the right to make decisions about their lives;
believe in public accountability and transparency to demonstrate that developmental services are governed and operated in a way that reflects the public interest, and promotes effective and efficient delivery of high- quality services to all people with developmental disabilities who choose to access such services;
believe in clear and consistent standards of care and services, supported by a strong compliance, inspection and enforcement system;
recognize the responsibility to take action where such standards under this Act are not being met, or where the care, safety, security and rights of people with developmental disabilities might be compromised;
3.) ARCH recommends the addition of a purpose provision that includes the following statements:
The purpose of this Act is to provide for services and supports that will advance the inclusion and participation of people with developmental disabilities in the life of the province.
The fundamental principle to be applied in the interpretation of this Act and anything required or permitted under this Act is that developmental
10 services must be administered, delivered and monitored so that people with developmental disabilities may live with dignity and in security, safety and comfort and have their physical, psychological, social, spiritual and cultural needs adequately met.
D.2. Concern Regarding Regulations
Several fundamental aspects of the new scheme envisioned by Bill 77 are left to be addressed entirely in the regulations. These include regulation making powers relating to reviews of eligibility determinations (s.36(a)), quality assurance (s.36(b)) and practices and procedures relating to complaints (s.37(p)).
It is ARCH’s opinion that this is a serious flaw in the Bill that has the potential to lead to its failure to achieve positive change for people with developmental disabilities. The language employed in sections 36 and 37 of the Bill state that regulations may be made. There is no requirement to do so and, in fact, we worry that regulations may never become a reality on several important matters. It is therefore essential that some matters which are currently to be dealt with in the regulations, such as reviews of eligibility and complaint procedures, be incorporated directly in the statute instead. Regulations are intended to be a vehicle used to fill in details of a statute rather than to address entire and fundamental aspects of that statute6, as has been done in Bill 77.
Further, we are concerned that the regulations contemplated by Bill 77 will not address the needs of the developmental services sector as they will not have the benefit of public comment. Regulations are not typically subject to the same level of scrutiny as statutes and thus there is not the same assurance of fairness and clarity.7
Recommendations:
6 David J. Mullan, Administrative Law (Toronto: Irwin Law, 2001) at Ch. 7-A (QL). 7 David J. Mullan, Administrative Law (Toronto: Irwin Law, 2001) at Ch. 7-A (QL).
11 1.) ARCH submits that reviews of eligibility determinations, quality assurance and practices and procedures relating to complaints which Bill 77 leaves to be addressed in the regulations, be addressed comprehensively in the statute itself. See sections in this submission about complaints and appeals for further details.
2.) ARCH submits that it is essential that a public consultation requirement be incorporated directly into the Bill so that there is an obligation to provide a public notice and comment procedure on those matters which are left to the regulations. Such a procedure has been incorporated into other Ontario statutes8. Community Living Ontario, too, has articulated the need for such consultation.9
D. 3 Rights for People with Developmental Disabilities
Bill 77 is extensive and detailed but does little to address the concerns we hear. It is ARCH’s view that the concerns have arisen, in part, from the flaws and gaps of the current Developmental Services Act and its associated regulations. There is an absence of a clear statutory framework establishing rights for people with developmental disabilities. A vision of full participation and citizenship requires that the dignity and well-being of people who have developmental disabilities be respected. It is our submission that substantive rights need to be enshrined in law in order for this to occur. These rights are largely absent from Bill 77. It is our grave fear that without amendments to the Bill to remedy this omission, people with developmental disabilities will have no legal tools with which to address their concerns. New laws will exist but the lives of people to whom these laws are aimed at will remain unchanged.
8 Personal Health Information Protection Act, 2004, S.O. 2004, c.3, Sched. A; Commitment to the Future of Medicare Act, 2004, S.O. 2004, c. 5; Quality of Care Information Protection Act, 2004, S.O. 2004, c. 3, Sched. B; Local Health System Integration Act, 2006, S.O. 2006, c. 4; Freedom of Information and Protection of Privacy Act, R.S.O. 1990, c. F.31; Ontario Drug Benefit Act, R.S.O. 1990, c. O.10; Drug Interchangeability and Dispensing Fee Act, R.S.O. 1990, c. P.23. See also David J. Mullan, Administrative Law (Toronto: Irwin Law, 2001) at Ch. 7-C (QL). 9 Community Living Ontario, Response to Bill 77 An Act to provide services to persons with developmental disabilities, to repeal the Developmental Services Act and to amend certain other statutes, submitted to the Standing Committee on Social Policy; August 2008, at pg. 15.
12 Recommendations:
The Need for a Bill of Rights
1.) ARCH recommends that Bill 77 include statutory provision for substantive rights for people who have developmental disabilities. These should be set out in a separate section and referred to as a Bill of Rights. These should apply both with respect to funding and services. Specific rights relevant to the developmental services regime must be identified and articulated in the Bill of Rights.
At a minimum, these rights should include, but not be limited to, the right to: Live free from discrimination, harassment and abuse Raise concerns or recommend changes and complain without interference and without fear of coercion, discrimination or reprisal Respect for their dignity and promotion of autonomy Be dealt with by the service provider in a manner that recognizes the person’s individuality and that is sensitive to and responds to the person’s needs and preferences, including preferences based on ethnic, spiritual, linguistic, familial and cultural factors. Be informed of programs and services and the laws, protocols, policies and complaint procedures that govern them Enjoy personal privacy, including expectations of daily living such as the freedom to have private telephone conversations A healthy, clean physical environment A nourishing diet, exercise and access to health care Have personal decisions respected Have privacy of and access to personal information
13 Similar Bills of Rights are enshrined elsewhere in Ontario laws, notably in the Long-Term Care Act10 and the Long-Term Care Homes Act11. We do not recommend a wholesale adoption of these as rights must be tailored to the context of people with developmental disabilities.
2.) ARCH submits that there must be a specific provision in the legislation that states that the Act, regulations, policy directives and all agreements between the Crown, service providers and those receiving services be interpreted so as to advance the objectives set out in the Bill of Rights.
3.) ARCH submits that the legislation must deem service providers to have entered into a contract with each person receiving a services from the service provider, agreeing to respect and promote the Bill of Rights.
4.) ARCH recommends that the Bill of Rights must be in plain language and available in accessible formats, such as pictograms.
5.) ARCH recommends that there must be a requirement that people in receipt of funding and services be made aware of the Bill of Rights.
D.4. Mental Capacity and Decision Making
There are a wide range of contexts in which issues of mental capacity arise in the lives of people who have developmental disabilities. These include decisions regarding supports and services covered by Bill 77, such as decisions to apply for programs or funding, including the choice to access one program over another, and decisions about all aspects of residential support services. Considerations of mental capacity are bound to arise in the context of people who have developmental disabilities. This is certainly not the case for all
10 Long Term Care Act,1994, S.O. 1994, c.26, s.3. 11 Long Term Care Homes Act, 2007, S.O. 2007, c.8, s.3. Note that the Long Term Care Homes Act is not yet in force.
14 recipients of services or funding. However, it is an inevitable reality that must be addressed in Bill 77.
Bill 77 makes no mention of mental capacity and the appropriate role of decision making supports and legally valid substitute decision-makers. This must be remedied to ensure that appropriate and fair decision-making processes are in place for people who are either mentally capable or incapable of making specific decisions.
Such processes are in line with the Ministry of Community and social Services’ stated approach to the transformation of developmental services. As stated by Community Living Ontario “[t]he notion of enhancing citizenship rights of people who have an intellectual disability has been central to all of the discussions of recent years related to transformation. Central to the idea of citizenship is the right to autonomy and choice of the person to make decisions pertaining to his or her life and to have personal control over how their life is conducted.”12 In this context, Bill 77 contains three fundamental flaws:
1.) It removes the right of mentally capable adults to make their own decisions. It allows for decisions to be made by others on behalf of people with developmental disabilities who have sufficient mental capacity to make their own decisions. 2.) It does not sufficiently recognize the role of supports for people who need assistance to make decisions. 3.) It does not provide for a last resort mechanism in which a legally valid substitute decision-maker makes decisions on behalf of a person who is not mentally capable to make specific decision(s).
12 Community Living Ontario, Response to Bill 77 An Act to provide services to persons with developmental disabilities, to repeal the Developmental Services Act and to amend certain other statutes, submitted to the Standing Committee on Social Policy; August 2008, at pg. 4.
15 In sum, Bill 77 is inconsistent with the recent decision of the Ontario Divisional Court in Gray v. Ontario where the Court stated that “…the consent of a developmentally disabled adult or his or her substitute decision-maker is required to any choice of community residential placement.”13
The following provisions of Bill 77 are illustrative:
Applications for Services or Funding
1.) An application for services or funding may be made “on behalf of a person with a developmental disability, by a member of the person’s family, by the person’s caregiver or by any other person.” (s.13(2)). Thus, a member of the person’s family, a caregiver or any other person may apply for services or funding on behalf of a person who is fully mentally capable to do so on their own. So, if Jane, for example, does not wish to live in a group home, her neighbour who paternalistically believes this to be the best option for her, can apply on Jane’s behalf, without Jane’s consent, for such a placement. This is so even though Jane is mentally capable to make this decision herself. This kind of intrusion in a person’s life is the utmost violation of their right to live as they choose and to make autonomous decisions. An adult who does not have a disability would be horrified to learn that their neighbor applied for them to rent an apartment without their direction or consent. It is unacceptable and a violation of law that people with developmental disabilities are not accorded the same right to make choices.
Direct Funding Agreements
2.) Subsection 11(2) provides that any person acting on behalf of a person with a developmental disability may enter a direct funding agreement with an application centre. This section is an equally appalling violation of law and
13 (2006), 264 D.L.R. (4th) 717 at para 33.
16 human dignity as it allows any person to enter into a contract on behalf of a person with a developmental disability who may be fully capable of doing so on their own. It allows for the complete removal of that person’s autonomy with no justification for doing so.
These provisions are alarming and objectionable in today’s society in which people without disabilities expect and plan their lives on the basis that they have the right to live as they choose. Bill 77 accords unequal treatment to people who have developmental disabilities in that they do not have the same right to make such choices. It embodies a view that people who have developmental disabilities are mentally incapable in all circumstances, and it flies in the face of current Canadian laws. Bill 77 thus, still incorporates the earlier paternalistic approach that viewed people with disabilities as in need of care and charity. In addressing mental capacity, Bill 77 must be consistent with decisions of the Supreme Court of Canada. In the context of mental capacity, the Supreme Court has stated that “unwarranted findings of incapacity severely infringe upon a person’s right to self-determination”.14 The Court also recently advanced the value to be placed in autonomous decision-making in relation to people with developmental disabilities in Nova Scotia (Minister of Health) v. J.J. The Charter too confirms the priority to be given to individual rights.15
In certain statutes where diminished capacity is likely to arise, there is an explicit recognition of presumed capacity. This prevents the all too frequent occurrence of treating an individual as though he or she is incapable solely on the basis that they have a disability. Both the Health Care Consent Act and the Substitute Decisions Act contain sections which state that individuals are presumed to be capable. People are entitled to rely on this presumption unless there are reasonable grounds to believe that the person is incapable.16 All interactions with
14 Starson v. Swayze, [2003] 1 S.C.R. 722 at para. 75. 15 Weisstub, D. N. (1990). Enquiry on mental competency: Final report. Toronto, Ont.: Enquiry on Mental Competency at pg. 48. 16 Health Care Consent Act,1996, S.O. 1996, c. 2, Sched. A, ss. 4(2) and (3); Substitute Decisions Act, 1992, S.O. 1992, c. 30, s.2.
17 people who have developmental disabilities must assume mental capacity to conduct ones affairs unless there is proof to the contrary. This presumption is fundamental to protecting an individual’s autonomy, independence and ability to control one’s own life.
It is essential that the decision-making scheme in Bill 77 incorporate the concept of supported decision-making. It is this concept which has been embraced by people with developmental disabilities and the United Nations Convention on the Rights of Persons with Disabilities17 and it would be ironic that legislation that exclusively focuses on people with developmental disabilities ignores the model of decision-making which they embrace.
Supported decision-making is not a new concept in Canada. It has been incorporated into legislation in other provinces.18 It has also been recognized by legal writers and Ontario courts.19
The concept of supported decision making aims to preserve the autonomy and dignity of people with disabilities. It recognizes the role of supports to allow people to exercise their legal capacity to make decisions. The possibilities of supports include family, friends, trusted others and assistive technologies. A
17 Convention on the Rights of Persons with Disabilities, G.A. Res. 61/106, 76th plen. Mtg., U.N. Doc A/Res/61/106 [adopted by consensus at the UN on Dec. 13, 2006], Article 12. Canada signed the Convention on March 30, 2007 but has not ratified it. The Convention came into force on May 3, 2008. 18 See, for example: a) The Vulnerable Persons Living with a Mental Disability Act, C.C.S.M. c.V90, s.6(1): “… “supported decision making” refers to the process whereby a vulnerable person is enabled to make and communicate decisions with respect to personal care or his or her property and in which advice, support or assistance is provided to the vulnerable person by members of his or her support network.” and s.6(2): “Supported decision making … should be respected and recognized as an important means of enhancing the self-determination, independence and dignity of a vulnerable person.” and b) British Columbia Representation Agreement Act, R.S.B.C. 1996, c.405. 19See, for example: Koch (Re) (1997), 33 O.R. (3d) 485 (Gen. Div.) at pg. 521, Gray v. Ontario (2006), 264 D.L.R. (4th) 717 at para. 47, and Fram, S. V. (1987). Final report of the Advisory Committee on Substitute Decision Making for Mentally Incapable Persons. Toronto, Ont.: Advisory Committee on Substitute Decision Making for Incapable Persons pg. 7 and 49.
18 personal network of people can be designated to assist a person in making decisions.20
Recommendations:
1.) A complete scheme regarding mental capacity and decision-making must be added to Bill 77. This scheme must be guided by the following principles: a.) People with developmental disabilities who are mentally capable have the legal right to make all decisions relating to all aspects of developmental services covered by Bill 77. This includes the fundamental decisions relating to applying for services and funding, and entering into direct funding agreements. b.) Supported decision-making must be recognized directly in the Bill. An individual’s right to make decisions should not be removed unless the supports needed to make decisions are unavailable. c.) The Bill should provide a legislative mechanism to explicitly recognize the types of supports that people with developmental disabilities access in making decisions. Consideration should be made of the Advocacy Office which we recommend playing a role in this regard. d.) The Bill should include a scheme for appointing and acknowledging a substitute-decision-maker ONLY as a last resort. The Bill should explicitly state that substitute decision-making is a last resort. This statement is necessary because historically for many people with developmental disabilities substitute decision-making has been looked at first rather than last.21 e.) The Bill must contain detailed provisions relating to appointing substitute decision-makers. Substitute decision-making should : Be tied to specific decisions
Be guided by fair processes
20 Michael Bach,“Supported Decision-Making under Article 12 of the UN Convention on the Rights of Persons with Disabilities: Elements of a Model” (November 2007) [unpublished]. 21 Ibid. at pg. 1.
19 Be guided by processes which are easy to navigate and do not pose a financial burden on those involved
Include a right to challenge findings of incapacity and other related decisions
Include regular opportunities to re-evaluate the substitute decision-making mechanism in place f.) All sections of Bill 77 which are inconsistent with the above recommendations must be removed or amended to accord with these recommendations, including but not limited to subsections 11(2) and 13(2).
2.) Because of the complexity of this issue and the fundamental importance of it to the self-determination and citizenship of people with developmental disabilities, ARCH recommends that in fashioning a solution and drafting the necessary provisions, consultations take place with those in the legal community who are experts in mental capacity law as well as with people with developmental disabilities and the organizations and others who support them.
3.) While there are laws in Ontario which deal specifically with these issues, most notably the Substitute Decisions Act, ARCH warns against relying solely on that Act which does not contemplate the unique context of developmental services and this Bill.
D.5 The Need for Provisions to Address Abuse
The complete omission in Bill 77 of specific provisions for addressing abuse is a mystery to ARCH in view of the documented research22, confirmed by ARCH’s
22 National studies demonstrate that people with disabilities are abused at a higher rate compared to people without disabilities. Research demonstrates that people with disabilities are many times more likely to experience abuse as compared to people without disabilities of the same age and gender. Liz Stimpson & Margaret Best, Courage Above All: Sexual Assault Against Women with Disabilities (Toronto: DisAbled Women’s Network (DAWN, 1991) at pg. 6. DAWN estimates that 83% of women with disabilities will be sexually abused in their lifetime. Roeher Institute, Harm’s
20 experience, relating to abuse of people with developmental disabilities. It has been estimated that over the course of their lifetimes, people who have a developmental disability are at least one and a half to two times more likely to experience abuse than people who do not have disabilities.23 Community Living Ontario, in their written response to Bill 77, also expresses concerns relating to abuse.24
Detailed legislative provisions regarding abuse, especially in relation to those populations most affected by it, are not new to Ontario legislation. Both the Long-Term Care Act25 and the not yet in force Long-Term Care Homes Act26 contain comprehensive provisions relating to abuse.
Recommendations:
1.) ARCH submits that because of the severity and prevalence of abuse it is imperative that the statutory framework address situations of abuse which occur in the context of services and programs for people who have developmental disabilities. This must be addressed specifically, directly and comprehensively.
2.) The legislative scheme which ARCH proposes to address abuse should, at a minimum, require the following: Duties relating to preventing, recognizing and addressing abuse Duties of both the Ministry and service providers in the context of abuse
Way: The Many Faces of Violence and Abuse against Persons with Disabilities (North York: Roeher Institute, 1995) at pg. 8. The Roeher Institute suggests that 60% of persons with disabilities are likely to experience some type of violence in their adult lives. Doris Rajan, Violence Against Women with Disabilities – Overview Paper (Ottawa: Minister of Public Works and Government Services Canada, 2004) at pg. 2. 23 Kristine Ericson, Barry Isaacs & Nitza Perlman, “Enhancing Communication with Persons with Developmental Disabilities: The Special Case of Interviewing Victim-Witnesses of Sexual Abuse” in Ivan Brown & Marie Percy, eds., Developmental Disabilities in Ontario, 2nd ed. (Ontario: Ontario Association on Developmental Disabilities, 2003) at pg. 465. 24 Community Living Ontario, Response to Bill 77 An Act to provide services to persons with developmental disabilities, to repeal the Developmental Services Act and to amend certain other statutes, submitted to the Standing Committee on Social Policy; August 2008, at pg. 13. 25 Long Term Care Act,1994, S.O. 1994 c.26, ss.3(1)1, 26. 26 Long Term Care Homes Act, 2007, S.O. 2007, c.8, ss.19, 20.
21 Duties relating to educating Ministry staff, service providers and people with disabilities about abuse Remedies for abuse Detailed policies about abuse Notification of the policies should be given to those affected Investigation and reporting obligations
3.) The legislative provisions relating to abuse must address all forms of abuse to which people with developmental disabilities are currently and are likely to be subject to in the future.
4.) The legislative must provide a detailed and comprehensive definition of abuse that not only specifies the types of abuse covered, but that also defines these types. At a minimum, this should include physical, sexual, emotional/verbal and financial abuse as well as neglect, and each of these should be further defined.
D.6. Tenancy Rights and Protections
Many of the calls ARCH receives from people with developmental disabilities and their families concern group homes. A common complaint is that people are forced to move from one group home to another without their consent, regard to their wishes or the disruption created in their lives. Often, these “transfers” occur very quickly, leaving the person little time to consult with or notify family and support people. In fact, ARCH has received calls from families who have visited the group home, only to discover that their family member no longer lives there. ARCH is also aware of situations in which people with developmental disabilities have been evicted from group homes, with no plan for an alternative place to live, as a result of abusive provisions in service contracts.
22 These kinds of transfers and evictions have a fundamental impact on the lives of people with developmental disabilities and their families. People who are evicted from group homes may find themselves homeless or without the daily supports and services they need. They may not be able to access other group homes or supported living environments due to long waiting lists or lack of information about available resources, and their families may not have the capacity to provide the care and support they need. People who are transferred to a new group home may find themselves in an unfamiliar environment, far from community and family supports.
It is also important to note that tenants who do not have developmental disabilities have legal rights and protections that prevent them from being summarily evicted from their homes. The Residential Tenancies Act (RTA) provides protection for residential tenants from unlawful evictions and establishes a framework to balance the rights and responsibilities of residential landlords and tenants and to resolve disputes.27
In view of the essential nature of group homes and other supported living arrangements, ARCH submits that people with developmental disabilities need assurances enshrined in legislation that provide them with rights and protections against unlawful evictions and transfers.
The definition of services in Bill 77 contemplates four kinds of living arrangements where people with developmental disabilities may live and receive services: host family residences, intensive support residences, supported group living residences and supported independent living residences.28 Some of these residences may be covered by Part IX of the RTA, which is the part that applies to care homes. Care homes are homes are defined in the RTA as a residential complex this is occupied or intended to be occupied for the purpose of receiving 27 Residential Tenancies Act, 2006, S.O. 2006, c. 17, s. 1. 28 Bill 77, An Act to provide services to persons with developmental disabilities, to repeal the Developmental Services Act and to amend certain other statutes, 1st Sess., 39th Leg., Ontario, 2008, s.4(2).
23 care services, which include health care services and services that provide assistance with the activities of daily living.29 Whether or not the RTA applies to kinds of residences contemplated in Bill 77 will depend on whether the residence meets the definition of care homes in the RTA, what kinds of services are being provided to people with developmental disabilities in the residence, and whether the residence is exempted from the provisions of the RTA.30
People with developmental disabilities who are living in residences to which Part IX of the RTA does apply will have the benefit of the rights and protections contained in that Part. This includes a requirement that there be a written tenancy agreement that sets out what has been agreed to with respect to care services and meals;31 a right to consult with a third party with respect to this agreement and to cancel the agreement within five days;32 and a right not to be transferred out of the residence unless the landlord has applied to the Landlord and Tenant Board and the Board is satisfied that appropriate alternate accommodation is available and the level of care the landlord is able to provide cannot meet the person’s care needs when combined with the community services provided to the person.33
Although Part IX of the RTA may provide for some tenancy rights and protections for people with developmental disabilities, it does not provide for a comprehensive set of rights and protections that are necessary in the context of developmental services residences. For example, s. 140 of the RTA, which requires landlords to provide tenants with an information package before entering 29 Residential Tenancies Act, 2006, S.O. 2006, c. 17,,s. 2(1); see also O.Reg. 561/06, ss. 1, 2. 30 Residential Tenancies Act, ibid.; see O.Reg. 561/06, ss. 1, 2. for more detailed definitions of “care home” and “care services.” Pursuant to s. 2(1) of O.Reg. 561/06, services must include: 1. Nursing care 2. Administration and supervision of medication prescribed by a medical doctor 3. Assistance with feeding 4. Bathing assistance 5.Incontinence care 6. Dressing assistance 7. Assistance with personal hygiene 8. Ambulatory assistance 9. Personal emergency response services and can include activities of daily living if provided with other services. The Residential Tenancies Act exempts various kinds of living arrangements: see for example s. 5, which exempts living accommodation whose occupant or occupants are required to share a bathroom or kitchen facility with the owner, among other arrangements. 31 Residential Tenancies Act, ibid., s.139. 32 Ibid, s.141. 33 Ibid, s.148.
24 into a tenancy agreement, does not apply to residences that are subject to the Developmental Services Act.34 This exemption may be appropriate since people with developmental disabilities who live in residences may not need all the information contained in an information package, including information about charges and fees for the different types of accommodation and additional services available from the landlord.35 However, it is our submission that people with developmental disabilities who move into residences should receive information packages that contain information appropriate to that context. This could include information about our proposed Bill of Rights, minimum staffing and qualifications of staff, emergency plans, and procedures for making complaints.
In addition, people with developmental disabilities who live in residences to which Part IX of the RTA does not apply do not have the benefit of those rights and protections.
In view of this reality, ARCH recommends that the issue of tenancy rights and protections for people with developmental disabilities who live in residences contemplated by Bill 77 be carefully reviewed. People with developmental disabilities must have comprehensive and clear rights and protections from unlawful evictions and transfers.
D.7. The Obligation to Promote Fairness in Decision-Making
Fairness is an essential component of full citizenship. It is important to note that for the Ministry of Community and Social Services, fairness is also a legal duty. The courts have held that there is a duty of procedural fairness on the part of public authorities when they make decisions affecting rights, privileges or interests of an individual. In Baker v. Canada, the Supreme Court of Canada explained this duty as follows: 34 Section 6(1)(b) of the Residential Tenancies Act exempts s.140 from applying to developmental services homes. Section 56(6) of Bill 77 carries this exemption forward. 35 The information required to be included in the information package is contained in s. 47 of O.Reg. 561/06.
25 The values underlying the duty of procedural fairness relate to the principle that the individual or individuals affected should have the opportunity to present their case fully and fairly and have decisions affecting their rights, interests and privileges made using a fair, impartial and open process, appropriate to the statutory institutional and social context of the decision.36
This is a long-standing legal principle, which was recently applied by the Ontario Divisional Court in the context of funding for children who have a developmental disability.37 Given the monumental importance of decisions regarding access to funding and services for people with developmental disabilities and their families, the duty of procedural fairness is particularly applicable to these decisions.38
Recommendations:
1.) ARCH recommends that Bill 77 include a provision which states that decisions affecting the interests and rights of people with developmental disabilities are subject to procedural fairness and must be made according to clear, consistent, objective criteria.
2.) ARCH recommends that the Ministry ensure that its decision-making processes and administration of programs are guided by the standard of procedural fairness articulated in the jurisprudence. This includes ensuring the articulation of objective criteria for the decision-making process, ensuring that people are made aware of the criteria, providing detailed reasons for all decisions about funding and services, and providing an opportunity for people to address objections. The Ministry must ensure that all public authorities who make decisions pursuant to Bill 77 and its regulations are aware of the duty of procedural fairness.
36 [1999] 2 S.C.R. 817 at para. 28. 37N.(R.) (Litigation Guardian of) v. Ontario (Minister of Community, Family and Children’s Services), (2004), 70 O.R. (3d) 420,[2004] O.J. No. 1135 (Div. Ct.). 38 N.(R.) (Litigation Guardian of) v. Ontario (Minister of Community, Family and Children’s Services), (2004), 70 O.R. (3d) 420,[2004] O.J. No. 1135 (Div. Ct.) at paras. 25, 28.
26 D.8. Appeals of Eligibility Decisions
Bill 77 delegates to Application Centres the responsibility of deciding who will be entitled to access services and direct funding. Application Centres, therefore, will be charged with making decisions about eligibility for services or funding, which have an enormous impact on the lives of people with developmental disabilities and their families. The result of eligibility decisions is that people may be left without the vital services they need, such as group home placement, care at home or respite.
Bill 77 contemplates a review if an Application Centre decides that a person is not eligible for services or direct funding. Sections 15, 16, and 36(a) set out the review mechanism envisioned by the Bill. Section 15 requires that the Application Centre give notice in writing of its determination as to whether the applicant is eligible for services and funding under the Act and the reasons for the determination. If the Application Centre decides that the applicant is not eligible, a review may be requested.39
The conduct of the review, the person or entity who will conduct the review and the rules and procedures that will apply to the review are not dealt with in the Bill, but are left to be dealt with in regulations.40 It is unknown whether the review will be conducted by the same Application Centre that made the initial decision and what rights applicants will have to present new facts or evidence or challenge the initial decision.
In our view, this is wholly insufficient. It is not certain that the review process will be further defined by regulations, as the language used in s.36 gives the Minister
39Bill 77, An Act to provide services to persons with developmental disabilities, to repeal the Developmental Services Act and to amend certain other statutes, 1st Sess., 39th Leg., Ontario, 2008. 40 Ibid, ss. 16(2), 36(a).
27 discretion whether or not to make these regulations. Moreover, given the importance of the decision being made, an appeal is required.
ARCH submits that a full right of appeal for eligibility decisions must be incorporated into Bill 77. A full and fair appeal mechanism is a fundamental aspect of the developmental services system and therefore should be incorporated into the statute, not left to regulations.41
An appeal is necessary despite the fact that people may apply to a court for judicial review of eligibility decisions. A duty of procedural fairness applies to public authorities who make decisions that affect the interests, rights or benefits of individuals, and the courts can review these decisions on this basis. Judicial review proceedings often require legal representation, are costly and are not accessible to people with developmental disabilities and their families. Therefore, a full right of appeal with an accessible process is required.
It is essential that such appeals be made to a person or entity that is independent from the Application Centre. This is the only way to ensure that the appeal is unbiased and fair. We recommend that the appeal be to a Director appointed by the Minister, with an appeal of the Director’s decision available to a designated administrative tribunal or board.
It must be noted that appeals of administrative decisions to independent tribunals exist for many other government funded services. For example, the Social Benefits Tribunal reviews decisions regarding Ontario Disability Support Program benefits and Ontario Works benefits.42 The Health Services Appeal and Review Board (HSARB) reviews many health care decisions, including decisions of the Ontario Health Insurance Plan and decisions of agencies under the Long-Term
41 For a more detailed explanation of the differences between regulations and statute, and ARCH’s position on this issue with respect to Bill 77, see section D.2. Concerns Regarding Regulations on p. 10 of this submission. 42 Ontario Disability Support Program Act, 1997, S.O. 1997, c. 25, Sched. B, ss. 2, Part II; Ontario Works Act, 1997, S.O. 1997, c. 25, Sched. A, ss. 2, Part II.
28 Care Act.43 HSARB has also been designated as the tribunal that will review eligibility decisions regarding admission to long-term care homes.44 It is deeply troubling that Bill 77 does not extend similar statutory appeal rights to people with developmental disabilities.
It is crucial that the appeal process be accessible to people with developmental disabilities. For example, when the Application Centre notifies the person that he or she is not eligible, it must provide information about the appeal process, including how to appeal, to where the various appeals lie and what the time frames are for filing the appeals. This information must be in plain, accessible language.
In addition, the administrative board or tribunal that hears appeals must also be accessible for people with developmental disabilities. It must have procedures that are flexible and enable people with developmental disabilities to easily participate in the process. Tribunal members must have specialized knowledge of developmental services issues, training in working with people with developmental disabilities and an understanding of their obligation to accommodate people with development disabilities during the appeal process.
Fundamentally, a full, independent appeal is one way in which this legislation can give meaning to the goal of full citizenship by enabling people to exercise their rights to challenge decisions about access to services and funding to which they are entitled.
Recommendations:
1.) ARCH recommends that Bill 77 include a full right of appeal of eligibility decisions.
43 Ministry of Health Appeal and Review Boards Act, 1998, S.O. 1998, c. 18, Sched. H, s.6. 44 Ibid.; Long-Term Care Homes Act, 2007, S.O. 2007, c. 8, ss. 2, 53.
29 2.) The following elements must be included in Bill 77 in order to set out the full right of appeal: . A requirement that the Application Centre provide the applicant with information about the entire appeal process, as outlined above; . A provision that allows all parties to the appeal to make submissions to the Director; . A timeframe within which the Director must render his or her decision and provide the decision and written reasons to the applicant; . A provision setting out the powers of the Director on appeal, which could include affirming the decision of ineligibility or rescinding the decision and referring the matter back to the Application Centre to make a new decision in accordance with any directions the Director issues; . A provision requiring the designated administrative tribunal or board to ensure that its procedures are accessible to people with developmental disabilities and that its adjudicators have specialized knowledge and training, as outlined above; . A timeframe within which the administrative tribunal or board will begin a hearing after it receives the application for the appeal; . A requirement that the administrative tribunal or board notify each of the parties to the hearing of the time and place of the hearing well in advance; . A requirement that the administrative tribunal or board render its decision within a specified timeframe, promptly after the hearing; . A requirement that the administrative tribunal or board provide written reasons to the parties within a specified timeframe, promptly after the hearing; . A provision setting out the powers of the administrative tribunal or board after a hearing, which could include affirming the decision of ineligibility, rescinding the decision and referring the matter back to make a new decision in accordance with any directions the tribunal issues, or rescinding the decision and substituting its own opinion; and
30 . A prohibition barring any reprisal against an applicant who exercises the right to appeal.45
D.9. Complaints and Appeals about Services
It is deeply troubling to us that Bill 77 does not set out any process to enable people to make complaints about the services they receive. This is especially so in view of our submission that the Ministry of Community and Social Services must ensure that services are being provided that comply with the Act and any regulations or policy directives. This is integral to the provision of services in a way that ensures public accountability and transparency.
Bill 77 provides that the Lieutenant Governor in Council may make regulations governing practices and procedures relating to complaints.46 In our view this is unacceptable. As with the provisions relating to reviews of eligibility decisions, it is not certain that any complaint processes will in fact be defined by regulations, as the Lieutenant Governor has discretion whether or not to make these regulations. Moreover, the right to complain about services is vitally important in order to ensure quality, accountability and transparency in the provision of those services.47
People with developmental disabilities must be afforded the right to make complaints about services they receive, and especially when they do not meet the requirements set out in Bill 77 and any regulations or policy directives. Therefore, ARCH recommends that Bill 77 include a full complaint process. It is
45 Provisions of this kind can be found in many Ontario statutes, including the Long Term Care Act,1994, S.O. 1994, c.26, s. 3(1)7, the Long-Term Care Homes Act, 2007, S.O. 2007, c. 8, s. 26, and Ontario’s Human Rights Code, R.S.O. 1990, c. H. 19 at s.8. 46 Bill 77, An Act to provide services to persons with developmental disabilities, to repeal the Developmental Services Act and to amend certain other statutes, 1st Sess., 39th Leg., Ontario, 2008, s. 37(p). 47 For a more detailed explanation of the differences between regulations and statute, and ARCH’s position on this issue with respect to Bill 77, see section D.2. Concerns Regarding Regulations on p. 10 of this submission.
31 particularly important that the Bill include provisions allowing for complaints and appeals based on a violation of the rights set out in our proposed Bill of Rights.
It is common for complaint processes to be laid out in other legislation that governs government funded services. For example, the Long-Term Care Homes Act and the Long Term Care Act both contain provisions that establish a complaint process.48
Bill 77 should require every service provider to have a complaints process. Service providers must ensure that there are written procedures that explain how to initiate complaints and how the service provider deals with complaints. These procedures must be in plain, accessible language and must be given to the person when she or he begins receiving services. These procedures should include information on how to appeal decisions regarding complaints to a designated administrative tribunal or board.
In our view, Bill 77 must designate an independent administrative tribunal or board to hear appeals of service providers’ decisions regarding complaints. This tribunal or board would be the same body that is designated to hear appeals of eligibility decisions. The addition of a complaint mechanism to an independent tribunal is extremely important in order to ensure that people are able to assert their rights to receive services that are safe, respect their dignity, and enhance their full participation in society. The tribunal or board must have broad remedial powers so that it may make orders which adequately address the complaints brought before it.
Recommendations:
1.) ARCH recommends that Bill 77 include a full complaint process.
48 Long-Term Care Homes Act, 2007, S.O. 2007, c. 8, ss. 21-28; Long Term Care Act,1994, S.O. 1994, c.26, Part IX.
32 2.) The following elements must be included in Bill 77 in order to set out a full complaint process: . A requirement that every service provider create a written complaint process, as outlined above; . A timeframe within which a service provider must respond in writing to a complaint with a plan for addressing that complaint; . A requirement that every service provider who receives a written complaint must send a copy of the complaint and the service provider’s response to the Ministry of Community and Social Services; . A provision requiring the service provider to immediately investigate and take appropriate action in response to every alleged, suspected or witnessed incident of abuse or neglect of a person with a development disability who is receiving services from the service provider. This provision may also delegate regulation making powers should the Minister wish to designate other incidents that the service provider must investigate; . A timeframe within which the administrative tribunal or board will begin a hearing after it receives the application to appeal the service provider’s decision regarding the complaint; . A requirement that the administrative tribunal or board notify each of the parties to the hearing of the time and place of the hearing well in advance; . A requirement that the administrative tribunal or board render its decision within a specified timeframe, promptly after the hearing; . A requirement that the administrative tribunal or board provide written reasons to the parties within a specified timeframe, promptly after the hearing; . A provision setting out the powers of the administrative tribunal or board after a hearing, which could include affirming the decision of the service agency or overturning the decision and substituting its own remedies to address the complaint;
33 . A prohibition barring any reprisal against a person who exercises the right to complain.49
D. 10 Application of the Statutory Powers Procedure Act to Appeals of Eligibility Decisions and Complaints and Appeal about Services
The Statutory Powers Procedure Act (SPPA) provide for a host of procedural safeguards which ensure that decisions made by persons or entities to whom decision-making power is conferred by or under a statute are fair. Some of the safeguards provided for in the SPPA include provisions that: . require a tribunal to provide notice if it intends to dismiss a proceeding without a hearing (s. 4.6(2); . bar a tribunal member who deals with settlement issues from presiding over a hearing (s.5.3(4)); . empower the tribunal to make orders regarding exchange of evidence and witness statements before a hearing (s.5.4(1)); . require the tribunal to provide the parties with notice of the hearing (s. 6); . provide parties with a right to be represented at a hearing (s.10); and . set out what is and is not admissible as evidence at a hearing (s. 15).
The SPPA applies to decisions made by many administrative boards and tribunals in Ontario, including the Human Rights Tribunal of Ontario, the Social Benefits Tribunal, the Landlord and Tenant Board, the Workplace Safety Insurance Board, the Health Services Appeal and Review Board, and others. With respect to Bill 77, ARCH submits that the SPPA should apply to the administrative board or tribunal that we recommend be designated to hear appeals of eligibility decisions and appeals regarding complaints about services. Nothing in Bill 77 should exclude the application of the SPPA to these proceedings.
49 Provisions of this kind can be found in many Ontario statutes, including the Long Term Care Act,1994, S.O. 1994, c.26, s. 3(1)7, the Long-Term Care Homes Act, 2007, S.O. 2007, c. 8, s. 26, and Ontario’s Human Rights Code, R.S.O. 1990, c. H. 19 at s.8.
34 D.11. The Need for an Advocate
The power imbalance between people with developmental disabilities on the one hand and organizations, staff and the Ministry on the other, has been a long- standing reality. People with developmental disabilities often feel powerless to complain when they are dissatisfied with a denial of funding or services, the amount of funding or services they receive, quality of services or abuse. They often cannot afford to hire a lawyer. Even if Bill 77 is amended, as we recommend, to include fair, clear and user-friendly complaints and appeals processes, there is still a need for an independent advocate to ensure access to these mechanisms and equalize the power imbalance.
The role of independent advocates in similar situations of power imbalance and abuse has been recognized in Ontario with respect to children in the Office of the Provincial Advocate for Children and Youth50 and the Psychiatric Patient Advocate Office51.
Recommendations:
1.) ARCH submits that Bill 77 should be amended to create legislative authority for the creation of an advocacy office. The office should be independent and provide advocacy in relation to services and funding. It should also provide education about rights. 2.) ARCH recommends that the views of the community of people with developmental disabilities be elicited in fashioning such an office which is most responsive to their needs.
50 Provincial Advocate for Children and Youth Act, 2007, S.O. 2007, c. 9. Also see the website of the Office of the Provincial Advocate for Children and Youth at
35 D.12. Inspections and Enforcement
In ARCH’s view, it is essential that Bill 77 require and empower the Ministry of Community and Social Services to ensure that safe, quality services are being provided to people with developmental disabilities. This is necessary because of the fundamentally important nature of the services to the lives of people with developmental disabilities.
It is also necessary because people with developmental disabilities are particularly vulnerable in the context of service delivery, and therefore cannot always protect themselves. People with developmental disabilities are often dependent on the services they receive, whether in a group home setting or otherwise, for their personal care needs, nutrition, health, recreation, socialization, management of their finances and property, and many other aspects of daily life. As a result of this dependence, people with developmental disabilities may be reluctant to make complaints or challenging their service providers for fear of losing their services. They may also be subject to abuse and easily intimated into remaining silent. In addition, they may not know what their rights are or may not have any information about how to make a complaint. It is our submission that given this context of vulnerability, it is the Ministry’s responsibility to take proactive steps to ensure that services are being provided in compliance with Bill 77 and any regulations and policy directives.
The role of the government in inspecting, reporting and compliance measures is recognized in other Ontario legislation that governs the provision of publicly funded services to vulnerable individuals. For example, under the Public Hospitals Act and its regulations, the Minister of Health has the power to investigate and report on the quality of administration of a hospital and the quality of care and treatment of patients.52 When it comes into force, the Long-Term Care Homes Act will require that long-term care homes be inspected annually by
52 Public Hospitals Act, R.S.O. 1990, c. P.40, s. 8, 9.
36 inspectors appointed by the Minister of Health and Long-Term Care. Long-term care homes that do not comply with the Act or regulations may be subject to compliance orders.53
In our view, the Ministry must inspect all service agencies and application centres on an annual basis to ensure that the quality assurance framework established in the Act, regulations and policy directives is being met. The inspection reports produced as a result of annual inspections must be made publicly available. This public reporting ensures accountability, assists people with developmental disabilities and their families in their selection of services, and reassures the public that there is adherence to the compliance and enforcement framework of the legislation.
In addition to annual inspections, we submit that the Ministry must conduct an investigation in prescribed circumstances.54 These include situations in which a Director receives information that a person with a developmental disability has been abused or neglected by staff at a service agency or application centre; there has been improper or incompetent treatment or care of a person with a developmental disability which resulted in harm or risk of harm to the person; there has been unlawful conduct which resulted in harm or risk of harm to a person with a developmental disability; there has been misuse or misappropriation of a person with a developmental disability’s money; there has been misuse or misappropriation of funding provided to a service agency or application centre under the legislation; or a prohibition barring reprisal in this legislation has been violated. Information regarding any of these circumstances may be received by the Director as a result of an individual complaint about services, an annual inspection report, or in any other way.
53 Long-Term Care Homes Act, 2007, S.O. 2007, c. 8, ss. 141-153. 54 Mandatory investigations are provided for in other legislation. For example, the Coroners Act, R.S.O. 1990, c. C.37 provides that the coroner must investigate if a person dies in a group home (s.10(2)(d)). This will be carried forward into the new Developmental Services legislation by s. 48 of Bill 77.
37 The reports generated in response to investigations conducted into these prescribed circumstances must be anonymized. This is necessary in order to protect people’s right to privacy. Personal information, including information about physical and mental health, finances and family matters that is included in an inspection report must be treated with utmost respect and must be dealt with according to all applicable privacy legislation.
Section 29(1) empowers a Director to make a compliance order if a service agency or application centre has failed to comply with the Act, regulations or policy directives. Section 29(4) provides service agencies and application centres with the right to make submissions to the Director regarding a compliance order. In our view, people with developmental disabilities who are receiving the services to which the compliance order applies should also have the right to make submissions. While the order will be directed to service agencies or application centres, it will also have a direct or indirect impact on the individuals who receive the services.
Recommendations:
1.) ARCH recommends that Bill 77 be amended to provide for more robust inspection, reporting and enforcement provisions.
2.) With respect to reporting, the following elements must be included in Bill 77: . Section 25 must be amended to require service agencies to report to the Minister annually. Among other things, these reports must include any complaints the agency has received which it did not copy to the Minister and any measures the agency has undertaken to ensure that it is complying with the legislation, regulations and policy directives;
38 . A provision must be added to Bill 77 requiring application centres to report to the Minister annually. Among other things, these reports must include data on appeals of its decisions and any measures it has undertaken to ensure that it is complying with the legislation, regulations and policy directives.
3.) With respect to inspections, the following elements must be included in Bill 77: . Section 26 must be amended to require Directors to appoint inspectors. The new section should read: A Director shall appoint inspectors for the purposes of this Act; . A requirement that every service agency and application centre to which the Bill applies be inspected, without notice, at least once a year; . A provision requiring mandatory inspections in prescribed circumstances. These must include situations in which a Director receives information from any source indicating that: o A person with a developmental disability has been abused or neglected by staff at a service agency or application centre; o Improper or incompetent care of a person with a developmental disability resulted in harm or risk of harm to the person; o Unlawful conduct resulted in harm or risk of harm to a person with a developmental disability; o Misuse or misappropriation of a person with a developmental disability’s money; o Misuse or misappropriation of funding provided to a service agency or application centre under this legislation; o A prohibition barring reprisal in this legislation has been violated; . A requirement that inspectors will prepare an inspection report within a specified timeframe, promptly after completing the inspection; . A requirement that the inspection report will be provided to the Minister and the service agency or application centre;
39 . A requirement that the inspection report document any non-compliance with the legislation, regulations and policy directives that the inspector finds; . A requirement that inspection reports generated as a result of annual inspections are public documents and must be made available to members of the public; . A requirement that inspection reports generated as a result of investigations conducted in prescribed circumstances be anonymized to protect the privacy of those affected; . A provision requiring that inspectors appointed by the Minister receive training in relation to their powers of inspection and the procedures they must follow, investigative techniques, problems and concerns that commonly arise in the development services sector, and interacting with and accommodating people with developmental disabilities. This provision is necessary in order for the compliance, inspection and enforcement framework of Bill 77 to be meaningful and comprehensive; and . A prohibition barring any reprisal against any person who provides information regarding an inspection to an inspector or Director.
4.) With respect to enforcement, the following elements must be included in Bill 77: . Section 29 must be amended to require a Director to make a compliance order if the service agency or application centre has failed to comply with the Act, regulations or policy directives. The new section should read: Subject to subsection (3), a Director shall make an order under subsection (2) … . A provision should be added to s. 29 providing people with developmental disabilities who will be affected by the proposed compliance order with the right to make submissions regarding the order;
40 . Section 29(5) should be amended to require the Director to also consider the submissions of any people with developmental disabilities who will be affected by the proposed order; and . A provision should be added to the Bill stating that an order in respect of non-compliance with the Act, regulations or policy directives does not affect the liability of any person to conviction for an offence arising from the non-compliance.
D.13. Personal Information
Bill 77 contains one very sparse section (s.34) that addresses personal information. However, it also makes reference to the Freedom of Information and Protection of Privacy Act in relation to the definition of “personal information” (s.34(5)). It is ARCH’s submission that the protection of such information relating to people with developmental disabilities who receive funding or services is incomplete and/or unclear and that this must be addressed.
The collection, use and disclosure of personal information, including health information, is of particular importance to people with disabilities. Compared to the general population, an enormous volume of records and information is compiled regarding people with disabilities. This is particularly so in relation to developmental services and Bill 77. This is so, for example, in relation to the application process (s.13(5)(b)) and determinations of eligibility (s.14(3)) as well as throughout the provision of residential support services. At various stages of the application process and receipt of funding and services, highly sensitive information will be collected, including details of assessments relating to the nature of the individual’s disability and their disability-specific service needs relating to their activities of daily living, their family and personal supports.
In view of this reality, people with developmental disabilities need assurances enshrined in legislation that protect the privacy of their information and that
41 appropriately address the collection, use and disclosure of it. They also need, as is typical in comprehensive privacy legislation schemes,55 legal rights to access and correct their records and processes for easily and inexpensively asserting these rights.
The provisions in section 34 of Bill 77 primarily address collection of personal information by the Minister. This scheme is a very incomplete one which does not protect the privacy and access interests that are so fundamental to people with developmental disabilities. It is unclear whether other Ontario privacy legislation provides the complete protection required in view of the fact that records in this context are mixed, in that they contain both health information and non-health information.
Recommendation: 1.) ARCH recommends that the issue of privacy of, access to and collection of all records used in the provision of funds and services covered by Bill 77 be carefully reviewed to ensure that comprehensive and clear protections exist.
D.14. Restraints
Concerns regarding the real potential for serious injury and death in the use of restraints used in the provision of developmental services has been recognized in the current regulations to the Developmental Services Act.56 Bill 77 provides that the Lieutenant Governor in Council may make regulations respecting the rules governing physical restraint of residents and the training of staff in relation to the use of physical restraint (s.37(n)).
While addressing the issue of restraints is not an easy one, and on which various views exist, it is ARCH’s belief that there is agreement on the ultimate goal: to
55 See, for example, the Personal Health Information Protection Act, 2004, S.O. 2004, c. 3, Sched. A. 56 R.R.O. 1990, Reg. 272, Part VI.
42 ensure the health and safety of all people with developmental disabilities who receive services.
ARCH notes that s.37(n) contains a limited understanding of restraints in that it refers only to “physical restraints”. A restraint has been defined as much broader than that in that it can include anything intentionally used to limit the movement or behaviour of an individual and over which the individual has no control.57 Thus other forms of restraints may pose problems of equal magnitude, such as “environmental restraints” which include barriers which confine an individual to a specific space such as locked doors. In fact, ARCH has heard concerns raised about people in group homes who are forced to stay in their rooms against their will. Recommendation: 1.) ARCH recommends that s.37(n) be re-examined to include a broader regulation-making power relating to restraints, which is consistent with current views of people with developmental disabilities and organizations and people who support them.
D.15. Waiting Lists
In order for a new framework in Ontario to responsibly and adequately address the needs of its citizens with developmental disabilities, it must ensure that the services and funding required by an individual are provided as needed and in accordance with planning that is centered on the individual.
In ARCH’s submission, Section 19 of Bill 77 (prioritization and waiting lists) effectively relieves the Application Centre and Ministry from providing sufficient and adequate services and funding, even though eligibility criteria are met. Subsection 7(2)3 permits the Director to issue policy directives to Application Centres with regards to the management of waiting lists. Additionally, sections 17 to 21 provide that if an applicant is determined to be eligible, the Application
57 Advocacy Centre for the Elderly, Long-Term Care Facilities in Ontario: The Advocate’s Manual, 3rd ed, (Toronto: Advocacy Centre for the Elderly, 2004) at pg. 5.52.
43 Centre is to assess and prioritize requests for services and funding and may create a waiting list for their delivery.
The current language in this Bill allows for people to wait in perpetuity for services and funding with no guarantee that they will ever be received. Thus the sections relating to waiting lists have the potential to render meaningless the entire object of the new developmental services scheme created by Bill 77. Fiscal constraints and budgetary issues are the concerns of Government, not the individual with a developmental disability who requires funds and services to live within, and be an active member of his/her community. Individuals must not be left to the mercy of government budgetary considerations without the existence of safeguards ensuring access to much needed services.
The anti-discrimination and equality provisions of the Ontario Human Rights Code (Code) and the Canadian Charter of Rights and Freedoms (Charter) have at their core, values of dignity, autonomy, accommodation and inclusion. Accommodation mandates that steps be taken to facilitate the participation of people with disabilities in all aspects of community life. Meaningful inclusion in society will not be achieved for people who are maintained on waiting lists indefinitely.
Recommendations
1.) ARCH recommends that all sections that allow for the creation of, and relate to, waiting lists be struck from Bill 77.
2.) Since the need to address scarce resources is a reality, the legislation must create a mechanism for doing so which ensures that all those in need of funds and services receive them. The legislation must contain provisions to address situations where those funds and services are not immediately available,
44 but at the same time guarantees that needs will be met rather than being put off indefinitely. In this regard, the legislation should require that: a.) Application centres must ensure that all urgent and emergency needs are met immediately. b.) Application centres must make every effort to provide funds and services immediately in non-urgent situations c.) When it is completely impossible to provide the services and funding identified in the service profile immediately, the application centre should be required to: ensure that interim and/or alternate services and funding are put in place AND create a concrete plan for fulfilling unmet needs with a guarantee that those needs will be met in a specified way and within a specific time period. This approach will allow individuals and their supports/families to plan for the future, knowing what to expect and when.
D.16. Labour Concerns and Collective Agreements
The developmental services sector poses a significant, difficult and unique tension between the labour and employment rights of workers and the rights of people with developmental disabilities to live in peace and security within the walls of their own home. For people receiving residential services covered by Bill 77, their home is also concurrently a workplace for those providing services within the home. The conflicting roles within the home were no more evident than in the summer of 2007 during work stoppages at many group homes across the province.
ARCH submits that this matter is of utmost importance and that safeguards need to be put into place to avoid the devastating consequences of 2007. In fact, the
45 Law Commission of Ontario has recognized this critical issue and approved a project to consider it and related problems.58
Community Living Ontario too has identified this issue. It recommends that this sector be identified as a no-strike sector and that provisions under the Hospital Labour Disputes Arbitration Act (HLDAA) which impose an arbitrated settlement mechanism, be mirrored and included in Bill 77.59
Recommendation:
1.) ARCH recommends that a further consultation with all affected stakeholder must be undertaken to examine the complexity of the relevant legal framework and practical realities and to determine the most appropriate solution.
D.17. Transitioning of Children and Youth into the Bill 77 Legislative Scheme
Bill 77 is silent on the issue of the transitioning of children and youth into adulthood and accessing services under the Bill’s scheme once they reach 18 years of age. The concerns voiced to ARCH by people with developmental disabilities and their families, however, highlight transitioning concerns. The difficulty arises when services previously received are no longer available and individuals are expected to begin understanding and exploring a new system which poses new challenges, barriers and expectations. This omission exacerbates the challenges posed by the silos which exist between various government ministries and agencies.
The change or enhancement of services should take place pursuant to person centered planning and not for ministerial jurisdictional reasons. In other words,
58 Law Commission of Ontario, Current Projects, online at
46 people with developmental disabilities should not be required to jump more hoops to receive critical supports and services. Rather, Ministries should respond in a more dynamic and collaborative way to ensure continuity and stability in the lives of its citizens.
Although securing services and accommodations may be a challenge, once a child begins school, services are, for the most part, provided under one roof. For example, Policy/Program Memorandum No. 8160 provides for the sharing of the provision of health support services among the Ministries of Health, Education, and Community and Social Services within the child’s school. As they leave the school system, they are faced with the challenges of securing similar services through different avenues.
A regulation under the Education Act61 provides at s. 6(4)62 that transition plans be developed for students in order to plan for post graduation. While ARCH is not expressing a view as to the effectiveness of this provision, it illustrates the legislative incorporation of transition planning. Bill 77, in contrast, does not address this issue. How or will the proposed developmental services framework support and enhance the transitioning process?
Recommendation:
1.) ARCH recommends that Bill 77 be amended to include a provision which provides that the application and eligibility process occur before individuals attain 18 years of age, in order to facilitate the transition. It is further recommended that Government consider other areas of collaboration and flexibility to achieve the ultimate goal of a seamless transition into adult services and programs. +
60 Ontario Ministry of Education, Policy/Program Memorandum No. 81, July 19, 1984; available online at
47