This Chapter will illustrate the application of the Framework through consideration of a current issue in the law as it affects persons with disabilities: the legal framework through which persons with disabilities receive supports in the community for needs related to activities of daily living, such as bathing, grooming, meals or taking of medication. Such services are sometimes referred to as “attendant services”.
This issue was chosen because although it is vital to the well-being of many persons with disabilities and is a recurrent topic of policy concern, the law in this area is under-examined. It is an area of the law that connects in a fundamental way to many of the principles that have been identified. It also illustrates a number of the key themes in this area of the law, including the “implementation gap”.
The intent of this illustration is not to provide a comprehensive description of this area of the law or to propose specific reform initiatives. Rather, the aim is to reflect on it in light of the principles and considerations that have been identified in this Report, and where possible, to discover some concerns and general directions for reform that arise from the application of these principles and considerations, with the intent to provide some foundation for further research and reform initiatives.
The evaluation is based on a review of the legislation, caselaw, government documents and relevant social science research.
Because this is not an area that has been subject to intensive scrutiny, there are a number of aspects where information is lacking, and further research is required to make a thorough assessment of the impact of the law on persons with disabilities. Should a thorough evaluation of the law be undertaken, further research on the implementation and effects of the law would be beneficial, and consultation with service providers, persons with disabilities and the groups that represent or advocate for them would be necessary to provide a more thorough evaluation of how this area of the law may affect persons with disabilities.
The law in this area affects both younger and older persons with disabilities, although the circumstances of the two groups tend to be somewhat different, as is briefly highlighted in the following section. The LCO’s sister project on the law as it affects older persons examined this area of the law from the perspective of older persons who are frail or who have disabilities. This Chapter will focus on the experiences of younger adults with disabilities. (This Chapter will not examine the legal framework for community supports for children. While an important area for review, it raises separate issues which would benefit from a more lengthy examination than would be possible within the scope of this Chapter.) The intent of these separate examinations is not to deny the areas of commonality between these two groups – indeed, there are several. However, it highlights, as has been emphasized throughout this Report, the importance of paying close attention to diversity within the experience of disability, to the impact of the life course on the experience of disability, and to particular contexts within the experience of disability. It is within this kind of close examination that the principles take on meaning and the Framework allows us to evaluate laws, policies and practices.
There are many types of community support services that are vital to the lives of persons with disabilities. This Chapter focuses on services related to activities of daily living under the Home Care and Community Services Act (HCCSA) and the Ministry of Community and Social Services Act (MCCSA), while recognizing that this is one small (although vital) piece of a broader spectrum of services. It refers only briefly to the more recent Social Inclusion Act. Many persons with disabilities will be arranging and receiving a range of services, often from a number of different programs and service providers, and this will affect their experiences related to attendant services. That is, it may be somewhat artificial to examine this issue in isolation from a consideration of other types of community supports, and it would be important, in a fuller examination, to consider in-depth how attendant services are related to other supports and services.
1. The Importance of Community Support Services
The United Nations Convention on the Rights of Persons with Disabilities (CRPD) identifies the fundamental importance of community support services in enabling persons with disabilities to live in and participate in their communities, and the central role that governments play in ensuring access to such supports. The CRPD provides in Article 19 that:
States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community….
Supports in the community for tasks related to activities of daily living are essential for some persons with disabilities to maintain the ability to live in the community. A 2002 analysis of the continuum of care for adults with physical disabilities based on comprehensive consultations with stakeholders, individuals and informal caregivers concluded, “Self-managed attendant services were considered to be ‘the most important of all the services’”, despite limited access across the country, because of their close connection to autonomy and community inclusion.
Without such services, the only option may be some form of institutionalized living. Institutionalized living is not only almost always a much less preferable option for individuals, reducing autonomy and social inclusion, it is much more expensive. Therefore, governments, including the government of Ontario, have invested in various types of community supports. Ontario’s Auditor General has noted,
The Ministry has recognized the dual benefit of enhancing home care services. Having people receive care in their homes whenever possible not only means better quality of life for the patient, it is also far more cost effective than housing a patient in a hospital, long-term-care facility, or other institutional setting to receive care. One CCAC we spoke to informed us that, for instance, personal support services can enable individuals who have moderate risks/needs to continue living independently in their homes. Not having these services could lead to deterioration in a client’s condition that could result in hospitalization or institutionalization.
Access to such personal services can be essential to all aspects of participating in and being included by the community – to obtaining training and education, holding down a job, raising a family and engaging in civic or community activities. Access to community support services therefore has ramifications for all aspects of the lives of those persons with disabilities who require them.
Supports may be provided informally, by family or friends. However, the needs of some persons with disabilities may exceed the capacity of family or friends to provide them, or some may not have sufficient networks to provide them. Further, sole reliance on family and friends may limit the ability of persons with disabilities to live independently and to make normal life transitions, such as living separately from parents. Finally, lack of formal supports may create intense pressure on family and friends providing informal supports. Where insufficient formal supports are provided, informal networks may collapse under the strain:
Traditional family roles are under stress, both health wise and financially and family supports will decline over time as the population ages. The lack of Attendant Services funding will mean that dependent adults remain with family well beyond the family’s ability to humanly, physically and financially cope – unable to transfer, living [in] inaccessible environments with inappropriate assistive devices, and then the family support dies.
2. Home Care and Attendant Services Supports
Both younger and older persons who have disabilities may need supports in the community. Because of the substantial numbers of older adults now needing supports to age in place, demographic trends that indicate a growing need in this respect, and the already acute pressures on long-term care and hospital systems, the needs of older adults who are frail or disabled have tended to receive more public attention in discussions of this issue, but the needs are equally acute for younger adults with disabilities. The needs of the two groups may differ somewhat, and it is important that systems have sufficient flexibility to address different needs.
Home care programs were originally established to provide care for people with long-term chronic illnesses, and most clients were over age 65. That is changing. Home care programs now provide services for people in all age groups with a much wider range of needs. But home care programs that were designed for the elderly may not be flexible enough to meet the…needs of people of all ages who have a disability…For example, unlike seniors who use home and community care to maintain their independence, people with disabilities need services that help them participate in the workplace and they want more control over their services.…
Older persons who are frail or have disabilities and require supports to age in the community have generally been provided with these supports through an “agency-based care model”, in which services are provided by staff or contractors of care provider organizations, and activities are directed through those agencies. In Ontario such services are mainly provided through Community Care Access Centres (CCACs) under the legislative scheme set out in the HCCSA. These services may include assistance with personal tasks such as bathing and grooming, homemaking services such as meal preparation and laundry, or other services such as caregiver supports or transportation. These services are generally referred to as “home care”.
While some younger adults with disabilities do access services through the home care (or agency care) model, the preferred type of service is often an “attendant services” model based on the independent living philosophy, in which the individual is able to direct their own care. Agency care approaches may be seen by persons with disabilities as being less consistent with values of independence, empowerment and security.
[I]ndividuals [with disabilities] do not like the more formal medical model of care. They consider it to be the equivalent of institutional care in another setting. People with disabilities want to maximize their independence and take control of their lives, their health and their bodies. They want to be able to train their own care attendants to their own specific and particular needs, and to direct their own care…People with disabilities find the rules and regulations of the formal care system to be too medically oriented and inflexible.
The attendant services model of community service supports has its roots in the independent living movement for persons with disabilities:
Attendant Services evolved out of the desire and the need of persons with disabilities to lead independent lives. It is a unique model which enables people with disabilities to direct their own services in the community. Before the advent of attendant services, most people with physical mobility disabilities would have remained in chronic-care hospitals, lived in institutions, or been cared for by family members long after the age when most non-disabled people would choose to live independently.
The Independent Living model embraces the notion that rights and responsibilities are shared between citizens and the state, focusing on building a society based on the principles of inclusion, equity, affordability and justice. It is founded on the right of people with disabilities to:
a. Live with dignity in their chosen community
b. Participate in all aspects of their life, and
c. Control and make decisions about their own lives.
The central aspect of attendant services is control by the client:
The key component in the provision of attendant services is self-direction of services by the consumer. The primary responsibility for the way services are delivered rests with the consumer; this means the consumer has to know:
1. What tasks (s)he needs the attendant to perform
2. When these tasks will be performed and
3. How the consumer wishes these tasks to be performed.
This Chapter will focus on Ontario’s attendant services, rather than home care services, as being more relevant to younger adults with disabilities. As is described in section B, attendant services may be provided through various service delivery models and legislative regimes.
3. Meeting the Need
Unfortunately, there is a general shortage of support services in the community, affecting both older and younger persons with disabilities. The Case Example in Chapter III.C.6 provides an illustration of the impact of lack of community services on First Nations older adults with disabilities and their communities. While the barriers and lack of support services in these communities are particularly severe, there are shortages in most communities. According to the 2001 Statistics Canada Participation and Activity Limitation Survey, about 70 per cent of adult Canadians with disabilities – 2.4 million individuals – required help with some type of daily activity due to their disability. About two-thirds of adults identifying a need for support in daily activities reported receiving it, while approximately one-quarter indicated that they receive some of the help they need, and 5 per cent indicated they received none of the help they need. Cost was the most frequently cited barrier to receiving support, with 52 per cent indicating that it was “too expensive”. Another 27 per cent said that “no informal help available” and 25 per cent said they “didn’t know where to obtain help”.
With changing demographics, shifting health care needs and expectations, and the fiscal effects of the recent economic downtown, the full spectrum of health care services is under pressure. For example, in 2008 the Ontario government announced that reduction of emergency room wait times was a top health care priority. The community support services system faces multiple pressing priorities, particularly because acute care and long-term care are also under pressure, and it has limited resources for meeting these priorities.
In 2008, Attendant Services served approximately 6,000 individuals across Ontario:
Direct Funded Services (under the MCSSA) received $2.1 million in funding;
Attendant Outreach Services (under the HCCSA) received $48.8 million; and
Assisted Living Services in Supported Housing (also under the HCCSA) received $80.2 million.
There were significant waitlists for all of these programs. In Toronto in 2008, the waitlist for the Assisted Living in Supported Housing and Attendant Outreach services was 900 individuals. Ten per cent of those on the waitlist were living in Alternate Level of Care beds, chronic care hospitals, or long-term care homes (which tend to be less appropriate and more costly settings) and 15 per cent were living with their parents. CILT, which manages Direct Funded services across the province, had over 450 individuals on its waitlist in 2007: on average, fewer than 30 spaces become available each year. As the Ontario Community Support Association has remarked
The ‘known’ waitlists for Attendant Services across the province can range from 4 to 10 years. The ‘turnover’ for attendant services is very low because people need these services for the rest of their lives. Many people do not bother to fill out application forms with such long wait times, so it is difficult to determine the true needs across the province.
B. Ontario’s Legal Framework for Attendant Services
Most attendant services in Ontario are currently provided under the HCCSA. The HCCSA regulates the provision of a range of community services which are delivered through the network of CCACs and other community agencies situated across the province. Attendant Services may be provided through the Attendant Outreach Services program and the Assisted Living in Supportive Housing program. Some younger adults with disabilities receive “home care” or other services that are coordinated through CCACs.
In addition to the services provided through the HCCSA, the MCSSA and the accompanying Grants for Disabilities regulation create a system whereby persons with disabilities can receive direct funding for attendant services, and can hire and direct their own attendant. This is sometimes referred to as “direct funded services”, in contrast to the agency funded services provided under the HCCSA.
Finally, the new Social Inclusion Act, 2008 and accompanying regulations provide a regime for the provision of a wide range of community support services (including direct funding) for persons with intellectual disabilities. These provisions are not yet fully in effect. Parts IV and V of the Social Inclusion Act will form an important part of the legislative landscape for receipt of community support services when they come fully into effect, and so will be briefly described below. However, since the structures for implementation of some aspects of this system are still under development, this Chapter will not attempt to evaluate the provisions of the Social Inclusion Act against the Framework.
Statistics about use of the programs under the HCCSA and the Direct Funding program are difficult to come by. The Canadian Home Care Association reported that in the fiscal year 2005-2006, Ontario’s community care program (under the HCCSA) served 303,605 individuals. Just over half – 54 per cent – of these individuals were over the age of 65, 11 per cent were children under the age of 18, and the remainder – approximately 35 per cent – were adults between the ages of 19 and 64. Some of the individuals making up this 35 per cent (108,079 individuals) were doubtless individuals living with disabilities, but others will have been individuals with short-term, acute care needs resulting from illness. A full 40 per cent of those assisted under the home care models were provided with “acute care substitution” services. It is therefore difficult to know how many younger individuals with disabilities are provided with long-term supports for community living under the HCCSA.
2. Home Care and Community Services Act
The stated purposes of the HCCSA include ensuring that “a wide range of community services is available to people in their own homes and in other community settings so that alternatives to institutional care exist”, providing “support and relief to relatives, friends, neighbours and others who provide care for a person at home”, promoting “equitable access to community services through the application of consistent eligibility criteria and uniform rules and procedures”, and integrating community services with other types of services, including those provided by hospitals and long-term care homes.
The HCCSA regulates the provision of the following services:
community support services, such as meals, transportation, caregiver support, home maintenance and recreational services;
homemaking services, such as housecleaning, laundry, shopping, banking, meal preparation and childcare;
personal support services, including assistance with or training for personal hygiene activities or routine personal activities of living; and
professional services, including nursing, occupational therapy, physiotherapy, social work, dietetics and similar services.
The services governed by the HCCSA that are of most relevance to this Chapter are the following:
Attendant Outreach Services: These services are generally provided in the homes of individuals on a pre-scheduled basis (some services are also provided in workplaces or educational institutions). There is a cap of 90 hours of service per month, unless a special exemption is obtained.
Assisted Living Services in Supportive Housing: As part of supportive housing, which provides accessible and affordable apartments for persons with disabilities, tenants may be provided with attendant services, either on-call or pre-scheduled. This program provides a combination of personal support and homemaking services, security checks or reassurance services, and care coordination. Services may also be provided to congregate or group homes.
Recipients of attendant services (through either program identified above) direct their attendants as they require, and are responsible for the decisions and training involved in the services they receive.
The HCCSA includes a Bill of Rights for those receiving services under its governance. This includes rights to
be dealt with in a courteous and respectful manner, and to be free of any type of abuse;
be dealt with in a way that respects autonomy, dignity and privacy;
be dealt with in a way that respects individuality, and is sensitive to needs related to ethnicity, language, culture, spirituality or family;
receive information about the community services he or she is receiving; the laws, rules and policies affecting the operation of the service provider; and the procedures for initiating a complaint;
participate in the assessment of his or her needs and in the development of a plan of service;
give or refuse consent to the provision of any service;
raise concerns or recommend changes in connection with the services provided or policies and decisions that affect his or her services; and
have records kept confidential.
Service Delivery Structure
The HCCSA gives the Minister of Health and Long-Term Care (MOHLTC) considerable latitude in the provision of services: services may be provided directly by the government; the government may pay others to provide community services, whether through grants and contributions, or financial assistance for operating expenditures or capital expenditures; or the government may make agreements with others for the provision of services. The Minister has the power to approve agencies to provide services and to approve premises for the provision of services, and may impose terms and conditions for approval.
Under the Local Health System Integration Act, Ontario has created 14 Local Health Integration Networks (LHINs) which are responsible for planning, funding, coordinating and integrating health care services in their areas. The LHINs allocate funds to agencies and service providers to provide the services regulated by the HCCSA. CCACs are approved agencies under section 5 of the HCCSA. They were created in 1996, replacing regional home care and placement services that had been criticized as fragmented and inequitable. Each CCAC is now accountable to one of the LHINs and every LHIN is accountable to the Ministry. The CCACs assess potential clients for service eligibility, approve clients for services and determine the allocation of available funds. The CCACs do not themselves provide services. In theory, non-profit and for-profit organizations may compete to provide services by bidding for contracts through a Request for Proposals. In practice, the competitive process has been suspended on a number of occasions. Services, including Attendant Services, may be administered through CCACs or other agencies.
Eligibility Criteria for Attendant Services
To be eligible for attendant services, applicants must satisfy the following criteria:
Be insured under the Health Insurance Act of Ontario (i.e., possess a valid Ontario Health Card);
Be at least 16 years of age or older;
Have a permanent physical disability and require physical assistance with activities of daily living such as bathing, dressing, transferring and toileting;
Be able to direct their own services. This means communicating with the attendants about what the individual wants done, when he or she wants it done and how; and
Be able to have any medical/professional needs met by the existing community health network on a visitation basis.
In Toronto, there is a centralized application process through the Project Information Centre at the Centre for Independent Living Toronto (CILT); outside Toronto, individuals must apply directly to each separate service provider.
For those who are searching for information about available community support services and about attendant services in particular, the main venues for information appear to be the websites of the LHINs, the CCACs and other agencies, and telephone information services. Not all CCACs list their telephone numbers on their home page: in some cases, recourse must be made to the Ministry of Health website. LCO staff seeking information through telephone services were often re-directed to the websites. That is, information is mainly available through the internet and in a print format.
A review of the community support services information provided through the websites of the 14 LHINs and CCACs revealed significant variance in the extent and format of information. Some CCACs provide video presentations on their services and options, although most rely exclusively on print information. The majority of information is presented in pdf files, which may pose barriers to persons with visual disabilities who use screen readers. Some CCACs provide documents in large print formats, though many do not. Some, though not all, regions provide information in French as well as English; information in other languages is not accessible. Some CCACs provide detailed information about service providers in their region, while others do not.
In Toronto, applications for attendant services appear to be centralized through CILT’s Project Information Centre (PIC) program, which simplifies the process considerably. Outside Toronto, it may be necessary for those seeking attendant services to apply to individual service providers. There is a searchable Ontario Attendant Services Directory maintained by CILT, to enable individuals to locate services in their area.
When an individual applies for community services to an agency under the HCCSA, the agency must conduct an assessment of the individual’s requirements, determine eligibility and create a written plan of service for each individual receiving services. The plan of service must be regularly reviewed to adapt to changing circumstances, and the individual must have an opportunity to participate fully in the development, evaluation and review of the plan of service. The plan of service must take into account the person’s preferences, including those based on ethnic, spiritual, linguistic, familial and cultural factors.
Services outlined in the plan of service must be provided within a reasonable time frame, and if services are not immediately available, the individual must be waitlisted.
Service providers must post in their premises a copy of the Bill of Rights and of any service accountability agreement into which they have entered. As well, each agency must provide to its clients or their substitute decision-makers a written notice outlining
their rights under the Bill of Rights,
the agency’s complaint procedures,
information regarding privacy and confidentiality issues, and
(if applicable) information about service accountability agreements entered into by the agency.
Agencies must also develop and implement plans for preventing, recognizing and addressing abuse of persons who receive services, as well as a quality management system. The HCCSA sets out requirements for the protection of the privacy and confidentiality of client information.
There is little information publicly available regarding training and education for service delivery staff. While the CCACs and other agencies no doubt consider the qualifications of staff in contracting with various service providers and as part of their quality management programs, the HCCSA and regulations do not set out any minimum requirements for staff qualifications or for ongoing training and education.
Oversight of Agencies
To be selected by the Ministry, an agency must first be approved. To be approved, the agency must abide by the Bill of Rights and operate with “competence, honesty, integrity and concern for the health, safety and well-being of the persons receiving the service”. The HCCSA requires the agencies to provide annual reports to the Ministry on their operation, and enables the Ministry to appoint program supervisors where necessary, as well as revoke or suspend approvals.
CCACs receive some information about clients’ experiences with their service providers from clients who choose to contact them and make complaints about their care, but there is no explicit requirement that CCACs ensure the adherence of service-providing agencies to the Bill of Rights. An explicit oversight requirement would enable CCACs to obtain comprehensive information about service providers’ compliance with the Bill of Rights across the province.
While the HCCSA requires every service-providing agency to “ensure that a quality management system is developed and implemented for monitoring, evaluating and improving the quality of the community services provided or arranged by the agency”, it does not specify what that system should involve. While the HCCSA allows the Minister to make regulations “governing the quality management system required to be developed and implemented”, there is currently no oversight requirement under the HCCSA or its regulations relating to quality management.
Similarly, while the HCCSA mandates that service providers provide timely services, and maintain waitlists, it sets no specific standards in these areas. There are no legislative requirements as to timeliness beyond that it be “reasonable under the circumstances”, no guidance as to how agencies should priorize service needs, and no requirements regarding qualifications and training for service staff. Not only does this lead to significant variances in policies and outcomes across the province, it reduces transparency and accountability within the system. Clients do not have a clear sense of the services to which they are entitled.
The CCACs have undertaken a number of initiatives to ensure that safe and quality care is provided “in the right place at the right time”. These include the standard use of Board Quality Committees, annual quality improvement plans, common client satisfaction surveys, common satisfaction surveys with contracted service providers, and satisfaction surveys with employees. CCACs may visit the premises of service providers and review performance data such as rates of referral acceptance and number of missed visits. At least one CCAC has made it a priority to conduct ad hoc visits to each of its 14 service providers, in order to observe the quality of services rendered.
The Auditor General’s office found that all three of the CCACs it visited had conducted ad hoc site visits to some of their service providers, though only one had commenced routine site visits to audit all of their service providers. These CCACs had identified some common issues related to monitoring and oversight. For example, three quarters of the service providers assessed had limited ability to assess whether their staff had delivered the required services in the client’s home in a timely manner, and a third of service providers did not evaluate personal support workers by actually observing them providing services to clients.
The Minister may appoint program supervisors, who may conduct inspections of community service providers (with a warrant where necessary) and who have power to copy and remove records.
The Minister may revoke or suspend approvals of agencies or premises designations where the Minister believes on reasonable grounds that there has been a contravention of the terms and conditions imposed by the Minister or of the Act or regulations, or breach of an agreement. The Minister may also “takeover” an agency, removing and replacing some or all of the directors or directly taking control of, operating or managing the agency or some part of it. These provisions do not, however, apply to CCACs. The Minister may issue directions on matters relating to the exercise of a CCAC’s rights and powers and the exercise of its duties under the law. As well, the Minister may appoint a supervisor in the public interest, who may, unless the appointment provides otherwise, exclusively exercise all the powers of the CCAC, its board or the Executive Director.
In late 2008, the Ministry announced a number of initiatives to strengthen the quality of services under the HCCSA, including
requiring CCACs to use “fairness advisors” for all requests for proposals,
requiring CCACs to publicly disclose their rationale for the selection of service providers at the conclusion of the request for proposals process,
introducing public reporting of performance measures, and
requiring all CCACs and service providers to develop annual continuous quality improvement plans.
Complaint Mechanisms and Enforcement
A study of the complaints received by three CCACs undertaken by the Auditor General of Ontario reported only a small number of formal complaints made by service recipients across Ontario to their local CCACs. In the first three quarters of the 2009/10 fiscal period, only approximately 3 to 8 out of 1,000 service recipients in these three CCACs had filed complaints. However, many concerns brought to the CCACs are not classified as formal complaints, but are simply resolved by case managers and included in the client files. These are considerably more frequent. In a review of the files of three CCACs, the Auditor General found approximately 1,300 “events” over a period over nine months at two of the CCACs, and more than 600 events in a period of six months at the third.
Accessing information about complaint mechanisms: Currently, the HCCSA requires that agencies inform a person receiving community services in writing of the proceedings for initiating complaints about their service providers. The provincial CCAC website contains a very brief explanation about how to initiate a complaint, suggesting that clients contact their local CCACs directly for further details. Information about the different routes for service quality complaints, or about the options for breaches of the “Bill of Rights” are not outlined in the public materials of the CCACs.
Complaint mechanisms: The Bill of Rights provisions of the HCCSA are a deemed contract between the service provider and the person receiving the service, so that the service recipient could, in theory, bring an action for breach of contract in order to enforce those rights. While in theory recourse to civil courts grants persons with disabilities an avenue outside the administrative system, in reality, such recourse is not accessible to most of the persons with disabilities receiving services under the HCCSA. Both the limited resources of Legal Aid Ontario and the lack of lawyers who are knowledgeable about this area of the law in Ontario pose a problem for persons with disabilities who might otherwise choose to pursue their case in court. In addition, the limited financial means of many of the persons with disabilities who rely on provincially-funded community support services may prevent those considering the option of pursuing lengthy and expensive court proceedings from doing so. Those who can afford civil litigation may decide to invest their resources in purchasing services out of pocket rather than to invest resources, time and energy into the uncertain process of civil litigation.
Recently, clients of community services have also been provided with the option of contacting the Long-Term Care Action Line (LTCAL) to receive information and assistance with issues regarding the services they receive. The LTCAL can facilitate the intake and referral of community service complaints. Upon request, clients may be referred to an Independent Complaints Facilitator to discuss their concerns. These Facilitators are required to contact the client within 10 business days of the referral, and can, with permission, contact the client’s CCAC to help address concerns.
Agencies approved to provide services are required to establish a process for receiving and reviewing complaints regarding
decisions about eligibility for services,
decisions to exclude a particular service from an individual’s plan of service,
decisions about the amount of service to be included in an individual’s plan of service,
decisions to terminate the provision of services to an individual,
the quality of service provided to an individual, and
violations of the provisions of the Bill of Rights. 
The agency must review and respond to all complaints regarding service quality or the Bill of Rights within 60 days. For all other types of complaints, the agency must give a written notice of its decision on the complaint within 60 days. Certain CCACs have an Ombudsperson who acts as a mediator between a client and his or her case worker, but others have only a client’s CCAC case manager as an initial point of contact for a client who wishes to make a complaint.
Appeals: Decisions not related to service quality or the Bill of Rights may be appealed to the Health Services Appeal and Review Board (HSARB). HSARB is then required to begin a hearing into the complaint within 30 days. HSARB may affirm the decision, rescind it and return the matter for a fresh decision, or rescind it and substitute it own decision for that of the agency. The decisions of HSARB are not appealable.
Systemic issues: Because the complaints mechanism is not centralized, it does not aid in gathering information at the provincial level about the care provided by various service providing agencies. Since complaints regarding quality of services do not require written responses, it may also be difficult to track exactly how many complaints are made, what their subject matters are, or how they are addressed. It also does not appear to facilitate the Ministry’s task of ensuring that high quality services are rendered uniformly across the province.
3. Ministry of Community and Social Services Act – Grants for Direct Funding
The MCSSA enables the Minister to “make a grant to or on behalf of a person who has a disability and who is at least sixteen years old, to assist the person in obtaining goods and services that the person requires as a result of the disability” or to make such grants to organizations or agencies with which the Crown has entered into an agreement, which will then transfer such grants to persons with disabilities. This is often referred to as “direct funding” or “self-directed funding”.
While it is generally recognized that self-directed funding will not be appropriate or desirable for all persons with disabilities, self-directed funding for attendant services allows persons with disabilities to manage their own needs, and is therefore perceived as enhancing the security, autonomy and dignity of those for whom it is appropriate. The Report on a 1997 Pilot Project on self-directed funding noted that:
Providing people with disabilities who use attendant services with the funding to hire and manage their own staff changes the usual relationship between consumers and attendants. With self-managed direct funding, the participants in this Pilot became the employers of their attendants, in most cases for the first time. Both self-managers and attendants pointed to the increased accountability to persons with disabilities that this change in the employer-employee relationship brought, and to the greater degree of mutual respect it fostered….
Direct funding provided to the participating self managers more control, choice, and flexibility in attendant services than they have had in the past. They pointed to the many ways in which this made a difference in their lives in terms of increased self-determination in all aspects of their lives, reduced vulnerability, greater independence, a stronger sense of self-esteem, more fulfilling personal relationships and increased social participation.
Under the Ontario Regulation 367/94, attendant workers may provide the following services:
turning a person in bed, lifting a person, positioning a person or transferring a person from one place to another,
assisting a person with washing, bathing, showering, shaving or personal grooming,
assisting a person with dressing or undressing,
catheterization, emptying and changing a leg bag, assisting a person with using the toilet or otherwise assisting a person with urination or bowel routines,
assisting a person with breathing, caring for a tracheostomy or caring for respiratory equipment,
assisting a person with eating,
assisting a person with meal preparation, dishwashing, laundry or other housekeeping tasks,
assisting a person with essential communication.
The Regulation sets out a complex set of eligibility criteria for receipt of Direct Funding Grants. To be eligible for direct grants for attendant services, the Regulation requires that
a) The person is at least 16 years old.
b) The person requires attendant services as a result of a permanent physical disability.
c) The attendant services required by the person include attendant services referred to in at least two of paragraphs 1 to 8 of subsection 1 (2), and at least one of the attendant services required by the person is referred to in paragraph 1, 2, 3 or 4 of the list of services provided above.
d) The attendant services required by the person have been stable over a period of at least one year.
e) The person’s care requirements can be met while the person resides in his or her home.
f) The person understands the nature of his or her disability and its impact on his or her ability to carry out the essential activities of daily living.
g) The person is aware of the type of attendant services he or she requires, the times at which he or she requires the attendant services, the number of hours of attendant services he or she requires and the manner in which the attendant services should be provided.
h) The person is capable of scheduling his or her attendant services and of making alternative arrangements to ensure that his or her requirements for attendant services are met in the event that an attendant worker is not available at a scheduled time.
i) The person is capable of training or arranging the training of, supervising, instructing and otherwise communicating with attendant workers.
j) The person is capable of recruiting, hiring and dismissing attendant workers.
k) The person is capable of understanding and carrying out the responsibilities that he or she would face as an employer of one or more attendant workers.
l) The person is capable of managing and accounting for the expenditure of the funds that the organization, agency or entity would grant to him or her.
m) The person is capable of evaluating the attendant services he or she would receive and of communicating his or her evaluation to others.
n) The person is prepared to undertake the functions referred to in clauses (h) to (m) and to assume the responsibility and risks inherent in undertaking those functions.
Notably, the program is restricted to adults (individuals over the age of 16) with physical disabilities (though it does not exclude individuals who have other disabilities in addition to physical disabilities). No definition of “physical disability” is provided in the legislation.
There is also a requirement that the need remain stable – both in the requirement that the physical disability be “permanent” and that service needs have been stable for a period of at least one year.
Finally, there is considerable emphasis on assessing the skills and understanding of the potential grant recipient for independently managing the administrative, financial and supervisory aspects of an employment relationship.
Service Delivery Model
Funding for services under the Direct Funding program flows directly to the provider agency (CILT in cooperation with the Ontario Network of Independent Living Centres), which then determines eligibility through an intensive application and interview process and administers the allocation of the grants. CILT provides a comprehensive application guide for the Direct Funding program.
Upon approval, the grant recipient then becomes the direct employer of the attendant, responsible for compliance with the Employment Standards Act, Human Rights Code, Income Tax Act and other laws relevant to the employment context. The provider agency may be able to provide supports and information regarding practical issues associated with being an employer, but the ultimate responsibility lies with the grant recipient.
CILT has set up a review mechanism for decisions related to eligibility for Direct Funding. If, after being interviewed, the applicant is declared ineligible for Direct Funding, the applicant can make a written request for a review. The request will be reviewed by an independent third party to determine whether the eligibility decision was both procedurally and substantively fair. If dissatisfied with the results of this review, the applicant may be able to appeal to HSARB.
Because the individual with a disability is the direct employer of the attendant, the attendant is directly accountable to the individual for services provided, and any issues with quality of service will be dealt with as an employment matter.
4. Provision of Community Support Services Under the Social Inclusion Act
The Social Inclusion Act, enacted in 2008 to replace the Developmental Services Act, marks a major transformation in the delivery of services and supports to persons with intellectual disabilities. It is intended to shift this sector away from institutionalized care and towards a “system of services and supports that will enable people with intellectual disabilities to exercise more independence, have greater decision-making power over their day-to-day lives, and ultimately live as full citizens in communities of their choosing”.
The Social Inclusion Act regulates the provision of a range of community support services, including those related to activities of daily living, community participation, caregiver respite, person-directed planning and others. Services and supports may be funded either through agreements with service agencies or through direct funding of persons with disabilities, administered through “application entities”. The provisions of the Act regarding direct funding have yet to come into force. Persons with intellectual disabilities may make application for services or supports to be provided either by service agencies, direct funding, or a combination of both.
“Funding entities” will develop service and support profiles for each eligible applicant, and will priorize the provision of supports and services, based on rules to be set out in policy directives.
Service agencies are bound by the terms and conditions of their funding agreements, and any performance standards and measures required by policy directive, as well as the quality assurance measures prescribed by regulation. Service agencies must report to the Minister as required, and must have in place written procedures for addressing complaints.
In terms of enforcement, the Act makes provision for inspections, and for the issuance of compliance orders. Where an agency fails to comply with such an order, the Minister may terminate any funding agreement with a service agency, or revoke the designations of funding or application entities. Agencies may also be subject to a takeover where there are reasonable grounds to believe that there has been misappropriation of funds or that the activities of a service agency are an immediate threat to the health, safety or well-being of those served.
While the Act has been praised for moving away from an institutional model of services and supports, and for enabling greater choice and control in selection and receipt of services for persons with intellectual disabilities, concerns have been expressed about the lack of a rights-based approach to the receipt of services and a desire for stronger enforcement mechanisms. As well, implementation of the provisions related to direct funding is still underway.
C. Evaluating the Legal Framework
The following evaluation of the law surrounding attendant services in Ontario is based on the questions set out in the Framework that composes Chapter IV of this Final Report. As not all questions from the Framework are applicable to this particular area of law, not all are addressed. In particular, this evaluation does not address the Framework’s “Step 2: Does the Legislative Development/Review Process Respect the Principles”, as it is focused on the current state of the law. The results are therefore presented in a narrative format, rather than question by question.
As was noted at the opening of this Chapter, this is not intended as an exhaustive review of this area of the law. Rather, it is a preliminary evaluation that points to areas of strength and of concern, and issues for further examination.
1. How Do the Principles Relate to the Context of the Law?
The law regarding attendant services and policy and practice in implementing it are profoundly connected to the realization of the principles for persons with disabilities. As Article 19 of the CRPD highlights, availability of supports in the community is essential to the ability of persons with disabilities to live in the community and avoid more institutionalized living arrangements, something which affects all of the principles but most particularly those of social inclusion and participation, and of fostering autonomy and independence. Provision of adequate supports may affect the ability of persons with disabilities to obtain or maintain employment, access education, participate in community activities or fulfil their roles as spouses, parents, friends and neighbours. That is, the effective achievement of the principles in this area will have a significant impact on the possibility of attaining the principles in all areas of life.
The way in which services are provided is as important to the realization of the principles as the fact of their provision. Disrespectful or abusive services can undermine the security, dignity and independence of persons with disabilities. Services which are inflexible, impersonal or not respectful of the diversity of persons with disabilities may undermine the principle of responding to diversity. As many persons with disabilities have pointed out, the ability to direct their own services can be fundamental to their autonomy.
As was briefly noted above, a lack of adequate supports may mean that those who provide informal supports for persons with disabilities may face significant strains in doing so, something that is particularly an issue of concern for aging parents of adults with disabilities. That is, the security and participation of those providing informal supports may also be affected by a lack of adequate appropriate formal supports and services for persons with disabilities who need them, highlighting the principle of membership in the broader community.
2. Does the Purpose of the Law Respect and Fulfil the Principles?
The purposes of the HCCSA, and particularly the provisions of the Bill of Rights, are well-aligned with the principles for persons with disabilities. The intent of the law is to promote positive outcomes for those who need supports to live in and fully participate in the community and to remove barriers by providing supports.
The primary purpose of the Act, ensuring “that a wide range of community services is available to people in their own homes and in other community settings so that alternatives to institutional care exist”, is central to the principle of social inclusion and participation. This is also closely linked to the principle of autonomy and independence, in that provision of supports in the community can give persons with disabilities a greater range of choices, as well as opportunities for education, employment and interpersonal and civic engagement.
The nature of the services provided under the Act is itself a recognition of the principle of diversity in human abilities, and the purpose section of the Act recognizes other aspects of diversity, including “the importance of a person’s needs and preferences, including preferences based on ethnic, spiritual, linguistic, familial and cultural factors”.
The principle of respect for dignity and worth is reflected in the explicit recognition in the Bill of Rights of the rights of those receiving services, including persons with disabilities, to be treated in a manner that “respects the person’s dignity and privacy and that promotes the person’s autonomy”, and to be dealt with “in a courteous and respectful manner and to be free from mental, physical and financial abuse by the service provider”, as well as rights to have the confidentiality of their information respected, and to raise concerns or recommend changes in connection with community services provided. There are no stereotypes or negative attitudes towards persons with disabilities embedded in the legislation.
The Act recognizes risks to the right to live in safety arising from the dynamics between service providers and those who receive attendant services, and includes measures to prevent abuse of clients by service providers.
The provisions of the MCSSA and the Grants for Persons with Disabilities Regulation are not explicit as to their purposes, but as with the HCSSA, their general intent – to provide persons with physical disabilities who can self-manage their services with the ability to obtain and direct the services they need to be included in the community – is clearly consistent with the principles of the Framework, particularly those of inclusion and participation, dignity and respect, and autonomy and independence.
Because direct funded services make the persons with the disability the employer, and thereby give her or him considerable control over the work and how it is done, this program is particularly closely tied to the principle of autonomy and independence. It is also seen as having positive effects on inclusion, in that users can target the services they receive more effectively, dignity and respect in that it transforms the relationship between the attendant and the person with a disability, and safety in that it reduces the risks of abuse by attendants.
A 2002 Report prepared for Health Canada reported that:
There was unanimous support for the Self-managed Attendant Services – Direct Funding program funded by the Ontario Ministry of Health and run through the Centre for Independent Living in Toronto…Participants commented that it was hard to access the program and it is not always the best option for some people, but at the same time they saw enormous potential for an expanded program, that they felt would be cost-effective, appropriate to their care needs, and retained elements of choice, flexibility, dignity and respect that are often absent from traditional modes of service delivery. 
Participants in CILT’s Direct Funding Pilot Project reported that using self-managed services increased respect for their privacy and dignity, their sense of security from mental, emotional or physical abuse, and especially their sense of autonomy and personal control. They noted that the program increased the trust and respect between themselves and their attendants, and their comfort with the very intimate nature of some of the tasks performed. Some self-managers reported that the program enabled them to move out of their parents’ home or meant that they did not have to return to living there.
It should be noted that it is generally accepted that, as beneficial as direct funded services are for those who desire them and for whom they are appropriate, not everyone has both the desire to self-direct their services and the skills to do so. For some individuals, agency-sourced attendant services will better meet their needs. The existence of both the Direct Funding program and the Attendant Services programs under the HCCSA thereby acknowledges the diversity among persons with disabilities. The provisions of the Social Inclusion Act enable eligible individuals to obtain services either through an agency or by direct funding, or through a mix of both. Of course, the degree to which this choice will be meaningful will depend on how the direct funding provisions are implemented and resourced.
3. Who is Affected by the Law and How Does this Relate to the Principles?
The HCCSA itself is a law of general application, affecting all those who need community supports, including those recovering from acute illness, older persons who are frail or need supports to age in place, and persons with disabilities. The Attendant Services that are provided under the HCCSA are, however, specifically targeted to persons with disabilities, as are the provisions of the MCSSA and regulation creating the Direct Funding program.
Attendant services programs are targeted to persons with physical disabilities, but do not exclude individuals with multiple disabilities, unless those disabilities create obstacles to self-direction of services. The new provisions under the Social Inclusion Act will create opportunities to access self-directed services for more individuals.
There were no statistics publicly available regarding the gender, linguistic, ethnic, religious or other makeup of the current client base for services under the HCCSA or the Direct Funding program, information that would be valuable in properly assessing the impact and effectiveness of the law on the diverse populace that it targets. Nor was there information publicly available regarding the impact of the eligibility criteria on different groups of persons with disabilities. Without such information, it is difficult to assess the impact of the eligibility criteria on the fulfillment of the principles.
4. Do the Processes Under the Law Respect the Principles?
As is noted above, the HCCSA sets out strong, positive principles and identifies purposes that are generally in harmony with the LCO’s principles and potentially very beneficial for persons with disabilities. Concerns regarding attendant services most frequently derive from the implementation of the law – particularly since the law provides considerable discretion to the agencies and the service providers as to how they implement the law.
Key implementation issues are a shortage of resources, broad discretion for agencies and service providers, and shortfalls in communication and education for both users and providers of attendant services. Because of these implementation issues, the legislation, although positive in intent, may not be effectively fulfilling the principles it was intended to promote.
A significant aspect of the challenges faced in providing adequate and appropriate community support services lies in the resource constraints faced by those responsible for allocating and providing services. As described above in section A.3, there are significant waitlists for all of Ontario’s attendant services programs.
As a result, the eligibility criteria as set out in legislation or policy lose some meaning, as a determination of eligibility may have little relation to the actual timely receipt of services. Given the central importance of these services to the achievement of the principles for persons with disabilities, and particularly the achievement of the principle of inclusion and participation, this shortage of resources raises significant concerns. Persons with disabilities may find themselves living in institutionalized settings, unable to make the transition to living independently from their parents, or otherwise unable to live in safety and be included in the community, as a result of these shortages.
Discretion and Accountability
A key concern with the processes under the HCCSA is that they provide wide discretion to the agencies (such as CCACs) and to the service providers themselves in terms of levels of service provided, quality management programs, complaints processes and provision of information, without also providing sufficiently strong mechanisms for transparency and accountability. The shortage of resources identified above, together with uneven distribution of those resources, makes the problem more acute. The Auditor General has noted that the CCACs vary widely in their eligibility criteria, waitlist policies, level of services provided and monitoring of the quality of care provided. For example, the Auditor General found that
The absence of standard service guidelines has resulted in each CCAC developing its own guidelines for frequency and duration of services. As a result, guidelines varied in the time allocated for each task and the frequency of service visits recommended. This means that the level of service offered may vary from one CCAC to another.
Therefore, despite the laudable principles and purposes underpinning the HCCSA, it is difficult to determine whether or not those principles are actually being achieved, or whether there is adequate opportunity to take remedial action if they are not.
Communication and Education
Adequate, appropriate information is essential to understanding options and making choices, and therefore to the principle of autonomy and independence. As well, lack of information can hinder the opportunity to derive the intended benefit from laws and programs, and therefore reduce the likelihood that the law or program will fulfil its intent (and thereby the principles). Because there is fragmentation in the provision of community support services for persons with disabilities, clear and accessible information will be especially important in helping individuals to navigate what may be a confusing system.
However, persons with disabilities may have difficulty locating the information they need to make informed choices about attendant services programs. CILT’s PIC program centralizes information about services in Toronto, but outside Toronto, the available information varies significantly across regions, is heavily dependent on websites, and is not always in accessible formats.
Training and information is also crucial for those who are delivering services, to ensure that services are provided effectively, and in accordance with the principles. The HCCSA does not set requirements for qualifications or ongoing training for service delivery personnel, and there is little information publicly available on this issue. A key concern that is frequently raised is high turnover among staff.
Recruitment and retention of staff is a serious concern, particularly given the much higher salaries and benefits in hospitals, long-term care homes and for the Developmental Support Workers in the Ministry of Community and Social Services.
This creates considerable difficulties for clients who are unable to build up relationships of trust with the individuals who are providing what are sometimes very personal services, and who must re-explain their needs to workers. It also likely creates difficulty in developing a skilled and experienced workforce, and in ensuring that the way in which services are provided respects the principles, particularly the principles of dignity and worth, and of living in safety.
For Direct Funded services, of course, the individuals themselves select workers who they believe have the skills and attitudes necessary to meet their needs, and provide the required training. In this way, these individuals have considerable control over the quality of services provided to them, within the limitations created by the local labour market and the level of funding provided. As noted above, users of the direct funding program have indicated that their approach has the capacity to fundamentally transform the relationship between users and providers of attendant services, increasing the respect with which the attendant services users are treated, and providing an additional safeguard against abuse.
5. Do the Complaint and Enforcement Mechanisms Respect the Principles?
An effective complaint mechanism is essential to identifying and addressing those circumstances in which a law, policy or practice is failing to respect the principles, whether at an individual or a systemic level. Lack of an effective complaint system, particularly in the context of such crucial and intimate services as attendant services, may place the individual receiving services at risk of disrespectful or even abusive treatment. Given the central importance of attendant services to the achievement of the principles by those who need them and the shortage of services, complaint mechanisms must take into account the significant power imbalance between users of attendant services and those who provide them.
In a research paper commissioned by the LCO, ARCH Disability Law Centre evaluated enforcement mechanisms under the Social Inclusion Act and identified four key elements of a proposed “human rights-based approach” to enforcement, founded on principles of accountability, accessibility, participation and independence. The four elements are rights education, both for individuals receiving services and those providing them; accessible, meaningful and transparent complaint mechanisms; appeals to independent administrative bodies; and peer advocacy committees to promote self-advocacy. While that paper considered these elements in the context of services for persons with intellectual disabilities, the elements are more broadly relevant across enforcement mechanisms affecting services for persons with disabilities, as means of promoting independence and autonomy through information and education, participation and inclusion through empowerment of persons with disabilities, and respect for dignity and safety through the creation of meaningful safeguards against disrespect and abuse.
Several issues have been raised concerning the adequacy of the complaints mechanisms under the HCCSA, including the complexity of the system, lack of access to a neutral third party, lack of access to information about complaints processes, and the lack of transparency and accountability in the complaints processes.
As was described earlier, there are different complaint options for different types of issues.
“Bill of Rights” issues may be the subject of a complaint to the agency, or may be treated as a breach of contract between the individual and the service provider.
Issues regarding service levels or eligibility must be brought to the attention of the agency. The agency must respond in writing, and decisions may be appealed to HSARB.
Service quality issues must be brought to the attention of the agency. The agency need not provide responses in writing, and there are no rights of appeal to HSARB.
For any issue, concerns may now be brought to the attention of the LTCAL.
The complaints process is therefore complex, with different alternatives for different issues, and may be confusing for affected individuals trying to determine their options and the possible outcomes. And because the HCCSA has no specific requirements regarding such complaint processes, they vary between agencies, making it harder for clients to navigate the system. These barriers to understanding and navigating the complaint system may undermine the principle of autonomy by making it more difficult for persons with disabilities to identify options and make informed choices about them.
As noted earlier, information about complaint processes is hard to locate, and mainly provided in written form. While certain clients are comfortable reading written materials and initiating a complaint, accessibility issues arise for service recipients who have visual or cognitive difficulties or experience language barriers (such as individuals who have ASL or LSQ as a first language). Understanding the complaints process is necessary to understanding the different options that are available to care recipients (for instance the difference between calling the LTCAL versus contacting a care provider directly). Without having access to consultation with a party who has information about the complaints procedure and can ensure that the client understands all available options, the written complaints procedure may not facilitate the process for all individuals. While some may be able to rely on family members or friends to seek additional information when necessary and to paint a complete picture of the process, not all will have access to such secondary sources of information. As such, the “written notice” requirement under the HCCSA may not, in actuality, take into account the needs of persons with disabilities and may not suffice to inform service recipients of the complaints procedure. In this way, the provisions and practices surrounding access to information may not fulfil the principle of responding to diversity.
Concerns have been raised about the lack of recourse to a neutral third party for many complaints. Complaints about quality of care or about decisions regarding eligibility or service levels must be made to the service-providing agency. In other words, individuals must complain about the services they are receiving to the providing agencies themselves. Decisions of the agencies regarding complaints about eligibility or service levels can be appealed to HSARB; however, this is not true for responses to complaints regarding quality of care, so that for these complaints there is at no stage any recourse to a true third party. In other words, for service level and eligibility issues, the first level of recourse is to complain to those responsible for providing that care, and for those who have received poor quality care, this is the only option.
The dynamics of attendant services and of the system may discourage service users from making complaints. Some recipients of services under the HCCSA (in the context of home care) report not using the complaint mechanisms available to them despite being dissatisfied by the care they receive. Service recipients often come to an understanding that the problems they are experiencing happen as a result of tensions within the community support sector. Some feel as though the power to improve the care they are receiving is out of their hands, and out of the hands of the individuals to whom they can complain. This intensifies their feeling of hopelessness and makes them less likely to complain even when they feel as though they are not receiving the care they need. In addition, some report that they do not want to complain because they fear that voicing their complaints about not receiving enough care could lead to their institutionalization. Others report not wanting to be seen as “troublemakers” for fear that it will negatively affect the care they receive. Given these dynamics, the fact that in most cases there is no independent body to hear the complaints likely worsens the task of complaining for persons with disabilities. The initiative by some CCACs to create an ombudsman may mitigate some of these difficulties: having the option to contact an ombudsperson instead of a client’s CCAC case manager increases the transparency of the complaints process and may make it a bit more comfortable for a client to file a complaint without being worried about confronting his or her caseworker directly.
In addition to raising questions of transparency, the lack of a mandatory neutral third party in the complaints process poses an accessibility problem: it may discourage adults from voicing their complaints. This can make it difficult for agencies to receive an accurate picture of service recipients’ experiences, and thereby to address systemic issues. A clearly articulated complaints mechanism within the HCCSA that includes a neutral third party would help to improve the accountability, accessibility and transparency of services provided under the HCCSA.
Overall then, there are significant gaps and shortfalls in the complaint and enforcement mechanisms for access to community supports under the HCCSA. Shortfalls in requirements and practices regarding the provision of information may undermine the principles of autonomy and of responding to diversity, a problem exacerbated by the complexity of the complaint system. A lack of clear and independent complaint processes may compromise the willingness of persons with disabilities to raise issues, and so may undermine the principles of dignity and worth, and of safety. Overall, in practice persons with disabilities, particularly those who experience socio-economic, linguistic or other barriers, may not be able to realize the principles that could and should be promoted through the law without a stronger complaint and enforcement mechanism.
A key benefit of the Direct Funding is the greater control and accountability it creates for persons with disabilities themselves. Issues with service quality can be dealt with directly through the employer-employee relationship. As CILT noted in evaluating the 1997 Pilot Project that tested many elements of what became the Direct Funded program,
The choice in and control over attendant services exercised by self-managers enabled them to reprimand attendants, or replace those whose performance proved to be unsatisfactory. Self-managers identified various reasons for reprimanding and dismissing attendants, including:
Disclosing confidential information;
Lack of respect for the self-manager’s beliefs; and
Reluctance to accept direction from the self-manager.
6. Do the Monitoring and Accountability Mechanisms Respect the Principles?
This discussion has highlighted the “implementation gap” for the law regarding access to attendant services. Legislation which is positive in purpose and generally in harmony with the LCO Framework principles may be, in practice, falling significantly short of its goals. In such circumstances, ongoing monitoring and evaluation of the implementation of the law and its outcomes may be of significant benefit.
As described above, the HCCSA does contain several mechanisms for Ministerial oversight, and CCACs have undertaken several initiatives to monitor and improve the quality of care. However, unlike under the Social Inclusion Act, there have been no quality assurance standards developed under the HCCSA, so that there may be considerable variance between agencies in this respect. There are no standards for timeliness of services or management of waitlists, issues of particular concern given the shortage of resources.
There is little information publicly available regarding the impact and effectiveness of the Direct Funding program. It does appear to have strong support from those it serves, the key issue being the lack of resources and resultant extraordinarily lengthy waitlists.
Because of these gaps in monitoring and oversight, it is difficult to determine the degree to which the law is fulfilling the principles. Given the discretion built into the system, the shortage of resources and the importance of the services to persons with disabilities enhanced monitoring and accountability measures might assist in promoting the realization of the principles to the degree possible at the present time.
D. Conclusion: Is the Law True to the Principles?
Attendant services are vital to the attainment of the principles, and in particular the principle of social inclusion and participation. Lack of effective access to attendant services may significantly compromise the ability of persons with disabilities to live in and engage with the broader community. The attendant services programs under both the HCCSA and the MCSSA are a practical recognition of the importance of these types of supports to persons with disabilities, and have the potential to significantly advance the achievement of the principles.
The purposes of both the HCCSA and the direct funding program under the MCSSA are well-aligned with the principles, and in particular the principle of social inclusion and participation. The direct funding program is highly regarded for its potential to increase autonomy and independence for those who use it.
The application of the Framework to law regarding attendant services highlights the common problem of the “implementation gap”.
· There is, in a number of areas, a lack of publicly available information with which to assess the degree to which the law fulfils the principles in practice. For example, it is not clear whether the law is having different effects based on gender, age, type or severity of disability, geographic location, or other factors.
· While the Direct Funding program under the MCCSA is an important element of the attendant services landscape, and is based on a philosophy that significantly advances the principles for those individuals for whom this form of program is appropriate, its potential is significantly constrained by a drastic shortage of resources to meet the demand.
· The HCCSA is largely discretionary rather than directive. Likely this was intended to provide for flexibility in meeting evolving and variable needs in a rapidly shifting environment. However, when combined with a lack of mechanisms for ensuring transparency and accountability, and an ongoing shortage of resources across the community support and health care sectors, it becomes difficult to determine the degree to which the law is fulfilling the principles as intended.
· The application of the Framework indicates some significant concerns about the complaint and enforcement mechanisms under the HCCSA. The complexity of the complaints system, shortfalls in the provision of information, lack of a neutral third party to address complaints, and power imbalances between users of attendant services and service providers may discourage persons with disabilities from complaining about inadequate, disrespectful or abusive services. This undermines the principles of dignity and worth and living in safety, as well as the potential of the law to assist persons with disabilities to achieve the principles.
These implementation issues are particularly troubling because those affected by the HCCSA are often living with long-term disabilities, will be highly dependent on the services provided, and therefore may have difficulty in obtaining information about and asserting their rights. In practice, the legislation may fall significantly short of respecting and promoting the positive principles that underlie its design.
Recognizing that a shortage of resources may make it very difficult to fully attain the principles in this area at this time, the concepts of progressive realization and “respect, protect, fulfill” point towards the importance of clearly identifying the shortfalls, immediately addressing these where possible, and developing an implementable plan for addressing these shortfalls within a reasonable timeframe. Stronger provisions regarding monitoring, transparency and accountability would enhance the ability to identify the most urgent issues, develop practical solutions, and create plans for better fulfilling the principles, as intended by the law.
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