Complex Needs Working Group Report Improving Home Care and Community Services for Individuals with Intellectual Disabilities and Complex Care Needs June 8, 2017
Contents Executive Summary... 3 1 Introduction - Setting the Stage... 4 1.1 Home and Community Care... 5 2 Complex Needs Working Group... 6 3 Experiences of adults with intellectual disabilities: Themes and Considerations... 7 3.1 Choice and Dignity of Risk... 10 4 Recommendations... 10 4.1 Service Maximums... 11 4.2 System Navigation... 12 4.3 Assessment and Allocation of Services... 14 4.4 Awareness, Education, Training and Supports... 15 4.5 Technology Innovation... 18 4.6 Research... 18 4.7 Pilot Projects... 19 5 Conclusion... 21 6 Summary of Recommendations... 21 Appendix A Complex Needs Working Group Terms of Reference... 25 Appendix B Relevant Legislation and Regulations... 30 Appendix C Working Group Biographies... 33 Appendix D Literature Review... 36 2
Executive Summary Adults with intellectual disabilities and complex needs prioritize independence and choice and they wish to be active participants in society. However, they face challenges in being supported where they want to be, at home, with the appropriate home care and community services. Problems with system navigation and fragmentation add challenges. Their informal caregivers family and friends also need support to continue to provide care for their loved ones. The Complex Needs Working Group (Working Group) has been tasked with providing recommendations for improving home care and community services for adults with intellectual disabilities and complex needs. The Working Group has heard about the significant challenges faced by individuals with intellectual disabilities and complex needs and their caregivers. The Working Group also examined opportunities for change, including innovative ways of supporting individuals in the community. In this report, the Working Group is making eight recommendations. The recommendations address service maximums; system navigation; assessment and allocation of services; awareness, education and training; technology innovation; research; and pilot projects. The recommendations include short-term proposals for improvement in the delivery of home care and community services for individuals with intellectual disabilities and complex care needs and long-term proposals for home care and community services reform. These recommendations are a key first step in reforming home care and community services, enabling adults with intellectual disabilities and complex medical needs to remain where they wish to be, at home and supported in the community. 3
1. Introduction Setting the Stage People with intellectual disabilities want to be active participants in their communities. They rely on a range of services and supports that promote social inclusion and involvement. A number of community organizations large and small, local and provincial provide these services and advocate for Ontarians with intellectual disabilities. For example, Community Living Ontario is a non-profit, provincial association that advocates for people who have an intellectual disability to be fully included in all aspects of community life. The goal of Community Living Ontario is that all persons live in a state of dignity, share in all elements of living in the community, and have the opportunity to participate effectively. People with a developmental disability can still participate fully in their communities. They can be great athletes, artists, workers, advocates, neighbours and friends. They re an important part of the community and contribute to the strength of our province. Developmental Services Ontario We envision a world where everyone belongs, has equality, and is respected. All people of this world will have a sense of worth and opportunities to grow. The gifts, uniqueness and innate value of each person is celebrated, supported and acknowledged as essential to the completeness of the whole community. Community Living Ontario Ontario has moved to a community-based approach for what is still generally called developmental services sector, supporting and promoting independence and choice. In the past, Ontario had an institution-based system for people with intellectual disabilities, peaking in 1974, when the government operated 16 institutions in which more than 8,000 people lived. Attitudes towards people with intellectual disabilities began to shift as the community living movement spread across North America. Advocates argued that people with intellectual disabilities have the right to participate in community life, rather than in isolated institutional environments. In 1987, the Ministry of Community and Social Services announced that within 25 years it planned to close all remaining residential facilities. In March 2009, the last institution for the care of individuals with intellectual disabilities closed its doors. 4
There are a growing number of individuals who have both intellectual disabilities and complex medical needs. These individuals require care and service from a number of agencies and programs in order to remain at home or in the community. The Health Care Access Research and Developmental Disabilities Program (H-CARDD) has studied the health services of over 66,000 adults with intellectual disabilities and demonstrated that they have more complex health profiles and are more likely to use hospital-based services than adults without intellectual disabilities. As well, a 2017 joint report between H-CARDD and the Health System Performance Research Network found that overall; approximately 20 per cent of adults with intellectual disabilities fell in the top 5 per cent category of health care users. This would suggest that these adults are disproportionally represented in the high-cost users category. Developmental and health services also need to plan for an increase in older adults with intellectual disabilities in Ontario. These aging individuals are expected to have greater health care needs than the general population. Individuals with intellectual disabilities are living longer than ever before. Another 2014 H-CARDD report projected that the number of adults with intellectual disabilities over the age of 64 will be almost double what it was in 2008-10. Individuals with intellectual disabilities also age earlier and show levels of frailty earlier than the general population. The report also found that as early as 50 years of age, adults with intellectual disabilities show levels of frailty comparable to older adults (80 years and older) without intellectual disabilities. 1.1 Home and Community Care The Home Care and Community Services Act (the Act) governs the provision of government funded community services by approved agencies and service providers. The community services are community support services such as meal services, transportation and adult day programs; homemaking services; personal support services; and professional services such as nursing services. (See Appendix B for relevant legislation and regulations). Local Health Integration Networks (LHINs) a provide access to home and community care and arrange for home care services on behalf of eligible clients. For any individual, regardless of age or type of condition or service required, the care coordinator will assess a person s needs and determine eligibility for services. For each eligible person, the care coordinator will develop an individual plan of service that sets out the amount of service to be provided to each person. There are also community support service agencies that provide programs and services that can be accessed directly by clients without requiring a referral. The Act sets out services maximums for nursing services, homemaking services and personal support services. a On December 7, 2016 Ontario passed Bill 41: the Patients First Act, 2016. Legislative amendments include enabling Local Health Integration Networks ( LHINs) to assume responsibility for the management and delivery of home and community care services currently provided by Community Care Access Centres (CCACs). Transition of CCAC staff to LHINs began on May 3, 2017 and was completed on June 21, 2017. 5
Strengthening home and community care is one of the government s most important health care priorities. In May 2015, Ontario launched Patients First: A Roadmap to Strengthen Home and Community Care, the government s three-year plan to improve and expand home and community care. It includes ten steps to deliver better coordinated and integrated care in the community and closer to home. The goals for home and community care include putting clients and caregivers first, so that everyone who has needs that can be reasonably met in the home or community will receive support to do so, and improving the client and caregiver experience. The home care sector is serving an increasing number of high needs clients with complex health care needs. With appropriate home and community care these individuals can thrive and avoid or delay hospitalization or placement in a long-term care home. The more complex the person s care needs, the more important it is to provide coordinated and integrated care. There is also a growing aging population. Many adults with intellectual disabilities receiving home care services rely on informal caregivers for everyday supports. Aging caregivers may not be able to support family members inhome and/or may have high levels of caregiver distress. One of the first steps the government took as a result of its initiative to strengthen home and community care was to increase the level of nursing services permitted by regulation to address the needs of individuals with complex conditions. Ontario Regulation 386/99 under the Home Care and Community Services Act, 1994 (the Act) sets out the eligibility for and the maximum amount of home and community care services. Effective October 1, 2015, the Regulation 386/99 was amended, increasing the maximum on nursing services provided in the home from 120 visits per 30 day period (or four per day) to 150 per 30 day period (or five per day). 2. Complex Needs Working Group The Working Group has as its mandate to address proposals for home care and community services reform, both long and short term, for adults with intellectual disabilities who also have complex needs. The consultation process was initiated as part of a settlement agreement resulting from an application that was filed before the Human Rights Tribunal of Ontario relating to home care service maximums for nursing services. The themes and recommendations included in this report reflect the discussions and conclusions of the Working Group. The Working Group is co-chaired by the Director, Home and Community Care Branch, Ministry of Health and Long-Term Care and the Director of Policy, Community Living Ontario. Members include ministry and community representatives, including caregivers. Members have different perspectives but share a commitment to improve home and community care for adults with intellectual disabilities and complex needs. 6
The Working Group has held meetings, in person and by teleconference, on November 9, December 16, 2016, January 19, March 10, April 7, May 4 and May 29, 2017. The Working Group has examined challenges and opportunities for service delivery for adults with intellectual disabilities and complex needs at home and in the community. The Working Group has also heard a number of presentations about innovative ways of supporting adults with complex needs in the community. All recommendations were considered within the context of recognizing that many Ontarians have unique needs or face particular barriers to care because they speak French or are members of Indigenous communities or are members of other social, linguistic and cultural communities. While recommendations do not specifically address those unique considerations, it is intended that initiatives equally benefit people with different ethnic, spiritual, linguistic, familial and cultural contexts. While the situation of children with complex needs was outside the mandate of the Working Group, the recommendations within the report may also be applicable to children. The Working Group did not consider the situation of individuals with intellectual disabilities and complex needs who also have mental health or behavioural needs; however, the Working Group recognizes that this population would also benefit from proposals for home and community care reform. The Ministry of Community and Social Services (MCSS) has been working with the Ministry of Health and Long-Term Care (MOHLTC) to develop a Dual Diagnosis Framework for adults with intellectual disabilities and mental health issues, and Long-Term Care Home Guidelines for adults with intellectual disabilities. Both of these documents are expected to support the objectives and recommendations outlined below. For further information about the mandate, guiding principles, deliverables and meetings of the Working Group, see the Terms of Reference, Appendix C. 3. Experiences of Adults with Intellectual Disabilities: Themes and Considerations As part of its mandate, the Working Group examined the generalized experiences of persons with intellectual disabilities with the home care and community services system. As well, the Working Group heard about the experiences of identified individuals with intellectual disabilities whose desire to live in the community is circumscribed by their current access to home care and community services. b b To protect the privacy of the individuals who shared their stories, no names will be used. 7
P.R. has physical and intellectual disabilities following his stroke. The hours of personal support that P.R. receives are not enough to meet his needs. He wishes to remain in his own home although home care agencies are encouraging him to be placed in a long-term care home. His primary caregiver is his spouse who also suffers from illness and disability and has caregiver burnout. M has an intellectual disability and complex medical needs. She has a life threatening disorder and requires specialized nursing care. Her caregiver wants to continue being able to hire service providers through his own funding allocation. Her caregiver is concerned about funding being reduced, resulting in less hours of service. B has physical and intellectual disabilities and requires constant monitoring. He receives 14 hours of personal support a week but this is not enough to meet his needs. Some of these hours are lost if there is not a specially trained worker available and/or due to missed visits. His caregivers are suffering from stress and exhaustion. F.S. has acquired brain injury and cannot be left alone. His caregiver is burnt out and says that her son needs more than the 16 hours of week of support he is allocated. She also does not have the means to pay for an attendant to assist him with social activities and is concerned her son is isolated. The above stories and others shared with the group contained recurring themes: Challenges when transitioning from childhood to adulthood Services and programs change significantly when a medically complex youth reaches the age of 18. For example, the youth must transition to adult medical services and must find adult specialists. There is also a reduction in available services and supports for youth with intellectual disabilities upon reaching adulthood. c c As youth transition from MCYS to MCSS at age 18, the eligibility for developmental services and supports are different. 8
Challenges with system navigation, silos and fragmentation of services People receive services in multiple settings and from multiple organizations, each with their own processes and policies. There are also silos of care, vertical structures with little lateral integration or communication that provide services under different legislation. Caregivers and service providers may not be aware of the full range of services and supports available and, when they are aware, may have difficulty navigating. Caregivers are under stress and need support Caregivers play an essential role in supporting individuals with complex needs and intellectual disabilities to remain in the home. Given the high burden placed on these caregivers, they can experience negative impacts on their mental and physical health, potentially leading to caregiver distress. Importance of transparent and equitable allocation of services Individuals have the perception that their service hours are allocated arbitrarily. They emphasized the importance of having care that leads to equitable outcomes, regardless of where they live. Care decisions should be transparent to individuals and their families. Importance of service provision, including improving continuity of care Individuals with intellectual disabilities and complex medical needs, and their caregivers, rely on service providers to provide consistent and quality care. Maximizing quality and continuity, for example by reducing turnover and missed visits, is essential when supporting individuals at home and in the community. Minimizing the number of care providers interacting with individuals in this population is of significant value and importance. Desire for access to individualized funding for self-directed care Caregivers expressed a strong desire for increased access to self-directed funding, in which they are given an envelope of funding that they can use to organize services. Proposed benefits include more control, choice and flexibility of services. Importance of person-centred resources and integrated services Person-centred care, utilizing a range of integrated supports and services, focuses on the individual s and caregiver s goals. Services should be adapted to the unique capabilities, preferences and needs of the person receiving care. 9
Having the option of remaining in their homes and communities, rather than being directed to long-term care placement or other institutional settings The primary goal of home and community care is to help people with health care needs maximize their independence and thrive where they want to be, at home and in the community. The history of inappropriate institutionalization of people makes home or home-like settings outside of institutions particularly important for people with intellectual disabilities. 3.1 Choice and Dignity of Risk The Working Group has had meaningful discussions about the importance of personal choice and of framing choice in the appropriate context. Choice needs to be meaningful and informed, with options and information on alternatives. For example, before choosing a care setting outside the family home, the individual, and their family where appropriate, should be aware of alternative options. Each individual s autonomy and self-determination to make informed consent and meaningful choices should be respected, even if this involves an element of risk. Safety is a high priority in health care and traditional health care perspectives are centred on risk avoidance. However, the concept of dignity of risk honours and respects the right of an individual to make informed choices, even if those choices involve more risk than other options. For example, an individual with complex needs may choose to live alone, even if others consider their choice less safe than living in a setting with continuous supervision. The need for choice must be balanced with the amount of risk. To minimize risk, it is important to have a structured mechanism that includes risk identification, risk assessment, a risk management plan (including mitigation) and evaluation/validation of the risk support management plan. 4. Recommendations The Working Group has made eight recommendations. The recommendations include long-term proposals for home care and community services reform and short-term proposals for improvement in the delivery of home care and community services for persons with intellectual disabilities and complex care needs. 10
4.1 Service Maximums Recommendation 1 Propose Regulatory Amendment Personal Support and Nursing Service Maximums a) The Working Group recommends the introduction of an additional criterion in Regulation 386/99 under the Home Care and Community Support Services Act, 1994 that would give the home care program discretion to provide more than the maximum amount of nursing services and personal support services to clients with complex care needs: The proposed amendments would better support individuals with complex care needs when the required hours of nursing and/or personal support services go beyond what is permitted in the Regulation. The proposed amendment would help prevent or delay institutionalization by helping to ensure that client needs are met at home and in the community. b) The Working Group recommends the following definition for Complex Care Needs: Recommended Complex Care Needs Definition Care for complex clients refers to the constellation of individualized services, supports and resources provided by families and caregivers, service providers and community agencies with the goal of optimizing the person s health and functioning. Care needs become complex by virtue of a combination of breadth and depth. Breadth is characterized by multiple needs in diverse areas that require services and supports across multiple providers and sectors. Depth of these needs is characterized by their intensity and frequency. Complex care needs are intensive, requiring multi-faceted health care services and high utilization of health and other resources. Functional limitations (impairments, activity limitations and participation restrictions) require essential support for self-care, mobility and/or communications. Complex care needs are chronic and often lifelong. Complex care needs are associated with fragility: they may be unpredictable and unstable and are often technology/treatment dependent. The person s needs may be the result of complex medical, physical, developmental, intellectual, behavioural, housing and/or social needs. 11
As part of its mandate, the Working Group reviewed a number of definitions of complex care needs with a view towards developing a definition to guide their recommendations. Key considerations included that the definition should: Have interplay between intellectual disabilities and health to guide immediate recommendations and future considerations; Be based on individual needs rather than just the social structure and influence of the environment; and Be legally definable while taking policy into account. The Working Group also considered that the definition could extend to all age groups, including children and youth. c) The Working Group recommends that the appropriate system supports are put in place to ensure individuals can benefit appropriately from amendments to the service maximums. 4.2 System Navigation Recommendation 2 Increase Integration and Alignment of Services and Enhance System Navigation The Working Group recommends increasing integration and alignment through crosssectoral collaboration to improve service delivery for adults with intellectual disabilities and complex needs. To do that, MOHLTC should: a) Work with LHINs, MCSS, home and community care and acute care to improve transitions for individuals with intellectual disabilities and complex needs and enable seamless coordination of services. Strengthened linkages between home care and acute care support Patients First by improving access to the right care in the right place, delivering better coordinated and integrated care, improving transparency of the system. At the same time, a more patientcentred experience for home care clients is created when acute and home care providers contribute to care planning, are informed of care decisions and work together to facilitate transitions and the coordination of care between sectors. For example, a coordinated, shared care plan uses information technology to enable a multidisciplinary 12
team, such as physicians, home care nurses and developmental service workers, to collaborate seamlessly. It comprehensively addresses the full range of the individual s needs across all care settings and helps manage key transition periods. b) Work with MCSS and service providers to increase linkages between the developmental disabilities sector and the health sector. Operating in silos reduces coordination of care and increases system fragmentation. It is important to develop creative solutions to support those with intellectual disabilities and complex needs. The developmental disabilities sector has materials, policies and programs that are valuable resources as the ministry works towards improving delivery of home care and community services for persons with both intellectual disabilities and complex care needs. For example, health care services and supports can be embedded within the developmental disabilities model of person-directed planning. Collaboration enables information sharing and knowledge transfer. Decreasing silos and increasing collaboration is a key step in improving patient-centred care. c) Work with LHINs to promote the integration of care teams with patient and caregiver engagement at all levels of delivery. Team-based care with patient and caregiver engagement, along with care coordination activities, is critical in helping patients navigate care across settings and managing care transitions. A coordinated, patient-centred model can improve outcomes for complex clients. Care teams are designed to increase communication among members of a patient s circle of care. Forming meaningful partnerships with patients and caregivers increases engagement and builds trust through shared care planning especially during transition processes. Diverse staff teams draw on the strengths of many skill sets (e.g., Developmental Service Workers (DSWs), Registered Practical Nurses (RPNs), Personal Support Workers (PSWs) etc.) and take a holistic approach to managing the client s health. Centralization and specialization of caseloads can increase expertise and resource sharing. For example, Central LHIN has a case manager and five care coordinators focused specifically on intellectual disabilities. d) Support use of and access to Health Care Facilitators or System Navigators for individuals with intellectual disabilities and complex needs and their caregivers, as appropriate. A key role in integrated care teams is the health facilitator. At the individual level, health facilitation focuses on individual health outcomes through person-to-person work with people with intellectual disabilities. The essential responsibilities revolve around helping to identify, monitor and meet the health needs of the person with intellectual disabilities. The facilitator functions as a key contact for the patient, caregiver and health care providers. They assist the persons with intellectual disabilities to move through the 13
consultation process, from arranging appointments and follow-ups to identification of particular health and support needs in the community. For example, some Health Links have implemented a facilitator role embedded in primary care that develops a care plan and works closely with a range of providers within the circle of care to ensure the care plan is followed and care is coordinated. System navigators are also used frequently in other parts of the system, such as MCSS. It is important to expand the availability of health care facilitators, for example through cross sector collaboration with MCSS, create new positions, and explore how to build the role into care teams. e) Leverage Health Links program for individuals with intellectual disabilities and complex needs. Health Links improve care coordination and transitions between services. Patients have an individualized, coordinated plan, have care providers who ensure the plan is being followed, have support to ensure they are taking the right medications, and have a care provider they can call who knows them, is familiar with their situation and can help. Research has shown that individuals with intellectual disabilities are high cost users and fit the targeted population for Health Links. A pilot project should be developed to expand the number of individuals with intellectual disabilities supported by Health Links. Health Links in one or more geographic areas that have existing patient populations that are aligned with the target population of individuals with intellectual disabilities and complex needs could be utilized for the pilot project. The pilot project would enhance Health Links, for example through necessary guidance materials, engagement of key partners, guiding principles and best practices, to support the unique needs of individuals with intellectual disabilities and complex needs. 4.3 Assessment and Allocation of Services Recommendation 3 Support Transparent and Equitable Assessment and Allocation of Services a) The Working Group recommends maximizing ministry initiatives to ensure greater consistency and transparency in allocation of service hours to support individuals with intellectual disabilities and complex needs. One example is the Levels of Care Framework. A key initiative under Patients First: A Roadmap to Strengthen Home and Community Care, the Levels of Care Framework is intended to give patients and caregivers a better understanding of what care they can expect at home or in the community. The framework is also intended to ensure that Ontarians receive consistent, high-quality home and community care regardless of where they live through an updated approach to assessment and service allocation. 14
b) The Working Group recommends reviewing current research and decision support assessment tools and those under development to ensure or determine whether they are suited for individuals with intellectual disabilities. The Working Group noted that the Method for Assigning Priority Levels (MAPLe) is a decision-support system currently used for allocating home care resources. MAPLe scores may not be accurate for those with intellectual disabilities. The interrai suite of decision support assessment tools (such as interrai Home Care) inform and guide comprehensive care and service planning in community-based settings. There are other decision support assessment tools designed for individuals with intellectual disabilities currently under development or evaluation: Central CCAC (now Central LHIN) is piloting the interrai Intellectual Disability Assessment System (ID), a comprehensive, standardized instrument for evaluating the developmental needs, strengths, and preferences of persons with intellectual or developmental disabilities. Through H-CARDD, researchers have developed a frailty index specific for persons with intellectual and developmental disabilities based on items in the RAI-HC. The Supports Intensity Scale (SIS), developed by the American Association on Intellectual and Developmental Disabilities, is an assessment tool that measures an individual s support needs in personal, work-related, and social activities to identify and describe the types and intensity of the supports an individual requires. The SIS measures support needs related to protection and advocacy activities and areas of exceptional medical and behavioural need. It is used with the Application for Developmental Services and Supports (ADSS) to access MCSS funded services and supports through person-centred planning. 4.4 Awareness, Education, Training and Supports Recommendation 4 Increase Awareness About Available Resources, Tools and Supports for Caregivers a) The Working Group recommends developing additional resources and supports and promoting access to new and existing resources and supports for individuals with intellectual disabilities and complex care needs and their informal caregivers. Many adults with intellectual disabilities receiving home care services rely on informal caregivers for everyday supports. Education and training is important early in the process when caregivers are learning about strategies and supports. Caregivers need to be aware of the resources, areas of local innovation, support services and funding mechanisms that are available. Gaps in these resources should be identified and filled through an appropriate combination of the ministry, LHINs and service providers. 15
The Working Group proposes maximizing and expanding current initiatives to enhance caregiver supports. The ministry is investing in caregiver training and education programs to ensure caregivers have better access to information and resources to provide care and to also take care of themselves. The ministry has also engaged in consultations into how to improve navigation and coordination of caregiver resources. These consultations included an examination of the need for and potential roles for a lead caregiver organization in Ontario that will coordinate supports and resources for caregivers across the province. The Working Group strongly supports the development of such resources. b) The Working Group recommends expanding respite services, both in-home and out of home, to improve the quality of life of caregivers and individuals through a family and person-centred approach that is responsive to individual needs offered in a dynamic and flexible way. Respite services are provided through home care and community agencies. Some services receive government funding, including $40 million in home care services funded by the Ministry of Health and Long-Term Care, others are partly funded by the government or may rely entirely on fund-raising. Some services are provided without cost while others require copayment from the caregiver. It is important to increase the amount of respite services that are available in the home to support caregivers of adults with complex needs. Caregivers should have the option of both in-home and out of home respite services in order to select the respite service that best meets their needs. An example of respite services is The Ottawa Rotary Home, which seeks to improve the quality of life of caregivers while promoting the health and well-being of individuals with disabilities through a family and person-centred approach. Programs include day and overnight respite and residential services for individuals with physical and/or intellectual disabilities and complex medical needs and overnight and day respite for individuals with physical disabilities. The children s respite programs at The Ottawa Rotary Home are funded by the Ministry of Community of Social Services and the Ministry of Children and Youth Services. While adult respite programs are available, only a small portion of the capacity is government funded at this time. 16
Recommendation 5 Increase and Improve Training and Education for Service Providers a) The Working Group recommends expanding and improving training and education for care providers of adults with intellectual disabilities and complex needs. This capacitybuilding should: Build competency on issues related to complex needs patients Enhance provider confidence in their ability to support this unique group of patients Increase professionalism and consistency of care Raise the standard of performance to improve quality of care Help attract and retain skilled workers Be standardized and affordable Broaden knowledge of the range of services available for this population Education and training should build partnerships between health care and developmental services. Delivery of education opportunities should be prioritized by identifying agencies at the local level that have a large target population and a key interest in providing training and resources for service providers of adults with intellectual disabilities and complex needs. b) The Working Group recommends supporting the full scope of practice for unregulated workers, meeting the requirements of the Regulated Health Professions Act (RHPA) while ensuring positive outcomes and safety. The RHPA regulates certain practices, controlled acts, which pose a risk to the public if they are not performed by a qualified practitioner. However, there are exceptions where unregulated workers, such as developmental service workers, can perform some of the same acts if certain conditions are met. For example, MCSS provided funding for a pilot project with the Central CCAC (now Central LHIN), in partnership with Toronto developmental services agencies, to create an enabling environment, including training and support, to meet the requirements of RHPA. The CCAC nurse performs a controlled act and assesses if it can be taught to developmental services staff. If so, as part of the education process for the developmental services agency staff, the nurse completes a care plan for the individual regarding the specific controlled act. The nurse continues to provide direct care for controlled acts when the individual is unstable or the outcome is unpredictable or it occurs too infrequently. 17
4.5 Technology Innovation Recommendation 6 Promote, Encourage and Support Technology Innovation The Working Group recommends the expanded use of technology in order to enhance support and access to home and community care for individuals with intellectual disabilities and complex needs. Technology can support service providers who support individuals in northern/rural communities. Using technology to provide remote care and monitoring can support patients with a wide variety of clinical conditions and can be used by a range of health care providers working in different care settings. Technology should also be used in innovative ways to improve care coordination and communication by linking stakeholders, including caregivers, in the circle of care. For example, the Ottawa Rotary Home offers a suite of online training programs to the broader developmental services community across Ontario. The program provides training for front-line staff for procedures that are considered controlled acts. The goal is to increase the capacity of developmental service agencies to care for individuals as their health grows in complexity. 4.6 Research Recommendation 7 Fund Further Research on Individuals with Intellectual Disabilities and Complex Needs The Working Group recommends that MOHLTC continue to support research on health care utilization, including home and community care services for individuals with intellectual disabilities and complex medical needs. A literature review undertaken by MOHLTC, see Appendix D, noted that there is limited information on how to effectively provide home and community care services for people with intellectual disabilities. As well, most of the evidence pertained only to adults with intellectual disabilities rather than adults with intellectual disabilities who also have complex medical needs. More research is needed on individuals who have intellectual disabilities and complex medical needs. Of the existing research, H-CARDD s study demonstrates that individuals with intellectual disabilities are high-cost health users. However, this research does not parse out what is driving the system use. In addition, further research about care needs and system use could support the inclusion of some individuals with intellectual disabilities and complex medical needs in the Health Links program. 18
It is also important to have a knowledge transfer plan so research findings can be broadly disseminated, both internally with other ministries and externally to stakeholders. For example publication of research results should be shared with the developmental services sector, including Community Living Ontario. 4.7 Pilot Projects Recommendation 8 Fund and Support New Pilot Projects a) The Working Group recommends that two to three pilot projects utilizing a coordinated care model for individuals with intellectual disabilities and complex needs be tested to support clients and caregivers. The pilots should: Explore how the implementation of coordinated care planning changes care and service utilization for participants Integrate care planning in a way that considers caregiver needs for resources and supports Utilize a communications tool that includes all stakeholders involved Provide an opportunity for applied and/or collaborative research Investigate the experience of participants (including patients, caregivers and service providers) involved in the program Identify policy, program and system barriers for individuals with intellectual disabilities and complex needs Build in accountabilities and oversight mechanisms with clear lines of responsibility Monitor progress and learnings at key intervals Evaluate implementation and outcomes of the pilot project Propose tools, results and lessons learned to inform change b) The Working Group proposes utilizing local areas of innovation to create and implement additional innovative models of care, supporting individuals at home and in the community. For example, small-scale integrated living models may be a community alternative to long-term care or acute care. An integrated model of care should include activities of daily living within the community and an effective system of support as well as the benefits of cross-sector collaborative partnerships. 19
Local areas of innovation include a cross-sector complex care model, funded by MCSS and the Central LHIN, offering an individualized model of care that integrates services and supports into a single coordinated package including accessible housing, person-centred services, community integration and care coordination/case management. The model is designed and implemented by a partnership of March of Dimes Canada, Reena, Community Living York South, the Central LHIN and York Region Housing. Another example of local innovation is London Participation House which, in collaboration with the South West LHIN and South West CCAC (now transitioned to the South West LHIN), provides support to over 200 individuals with severe physical disabilities, intellectual disabilities or multiple disabilities and/or complex needs. Services include supportive housing, scheduled and emergency day and overnight respite and community programs. c) The Working Group also recommends applying learning from the proposed selfdirected care (SDC) pilot project, should it be implemented, to inform a future pilot project for SDC for adults with intellectual disabilities and complex needs. SDC is a key initiative under the Patients First: A Roadmap to Strengthen Home and Community Care. It is proposed that giving patients and caregivers greater control over selecting providers and how care is provided will result in higher quality care, improved continuity of care, improved patient health outcomes and improved patient and family satisfaction. Should the SDC pilot not include adults with intellectual disabilities and complex needs, learning from the pilot project should inform future SDC projects. A SDC pilot for adults with intellectual disabilities and complex needs should also give consideration to bringing together streams of funding, for example funding provided by MCSS. The pilot should also consider the right mix of approved workers, for example nurses, PSWs as well as DSWs. 20
5. Conclusion The Working Group hopes that these recommendations will drive the continued reform of home care and community services, enabling adults with intellectual disabilities and complex medical needs to remain where they want to be, at home, and in the community. It is imperative that government and community stakeholders, both in the health sector and developmental services sector, continue to work together to improvehome and community care for individuals with intellectual disabilities and complex needs. Success requires a long-term commitment to developing and implementing innovative mechanisms for change, in order to support individuals and their caregivers and reduce system complexity for those who are already in a complex situation. Moving forward with the recommendations is essential to address the current system challenges faced by individuals with intellectual disabilities and complex needs. Prioritization of recommendations is important, focusing on both short-term and longterm opportunities for reform. Stakeholder engagement during the process is critical. By working together to effect change, there is the potential to transform home and community care for adults with intellectual disabilities and complex needs and their caregivers, helping them to thrive at home and in the community. 6. Summary of Recommendations Recommendation 1 Propose Regulatory Amendment Personal Support and Nursing Service Maximums a) The Working Group recommends the introduction of an additional criterion in Regulation 386/99 under the Home Care and Community Support Services Act, 1994 that would give the home care program discretion to provide more than the maximum amount of nursing and personal support services to clients with complex care needs. b) The Working Group recommends the following definition for Complex Care Needs: Care for complex clients refers to the constellation of individualized services, supports and resources provided by families and caregivers, service providers and community agencies with the goal of optimizing the person s health and functioning. Care needs become complex by virtue of a combination of breadth and depth. Breadth is characterized by multiple needs in diverse areas that require services and supports across multiple providers and sectors. Depth of these needs is characterized by their intensity and frequency. 21
Complex care needs are intensive, requiring multi-faceted health care services and high utilization of health and other resources. Functional limitations (impairments, activity limitations and participation restrictions) require essential support for self-care, mobility and/or communications. Complex care needs are chronic and often lifelong. Complex care needs are associated with fragility: they may be unpredictable and unstable and are often technology/treatment dependent. The person s needs may be the result of complex medical, physical, developmental, intellectual, behavioural, housing and/or social needs. c) The Working Group recommends that the appropriate system supports are put in place to ensure individuals can benefit appropriately from amendments to the service maximums. Recommendation 2 Increase Integration and Alignment of Services and Enhance System Navigation The Working Group recommends increasing integration and alignment through crosssectorial collaboration to improve service delivery for adults with intellectual disabilities and complex needs. To do that, the Ministry of Health and Long-Term Care (MOHLTC) should: a) Work with LHINs, the Ministry of Community and Social Services (MCSS), home and community care and acute care to improve transitions for individuals with intellectual disabilities and complex needs and enable seamless coordination of services. b) Work with MCSS and service providers to increase linkages between the developmental disabilities sector and the health sector. c) Work with LHINs to promote the integration of care teams with patient and caregiver engagement at all levels of delivery. d) Support use of and access to Health Care Facilitators or System Navigators for individuals with intellectual disabilities and complex needs and their caregivers, as appropriate. e) Leverage Health Links program for individuals with intellectual disabilities and complex needs. 22
Recommendation 3 Support Transparent and Equitable Assessment and Allocation of Services a) The Working Group recommends maximizing ministry initiatives to ensure greater consistency and transparency in allocation of service hours to support individuals with intellectual disabilities and complex needs. b) The Working Group recommends reviewing current research and decision support assessment tools and those under development to ensure or determine whether they are suited for individuals with intellectual disabilities. Recommendation 4 Increase Awareness About Available Resources, Tools and Supports for Caregivers a) The Working Group recommends developing additional resources and supports and promoting access to new and existing resources and supports for individuals with intellectual disabilities and complex care needs and their informal caregivers. b) The Working Group recommends expanding respite services, both in-home and out of home, to improve the quality of life of caregivers and individuals through a family and person-centred approach that is responsive to individual needs offered in a dynamic and flexible way. Recommendation 5 Increase and Improve Training and Education for Service Providers a) The Working Group recommends expanding and improving training and education for care providers of adults with intellectual disabilities and complex needs. b) The Working Group recommends supporting the full scope of practice for unregulated workers, meeting the requirements of the Regulated Health Professions Act (RHPA) while ensuring positive outcomes and safety. 23
Recommendation 6 Promote, Encourage and Support Technology Innovation The Working Group recommends the expanded use of technology in order to enhance support and access to home and community care for individuals with intellectual disabilities and complex needs. Recommendation 7 Fund Further Research on Individuals with Intellectual Disabilities and Complex Needs The Working Group recommends that MOHLTC continue to support research on health care utilization, including home and community care services for individuals with intellectual disabilities and complex medical needs. Recommendation 8 Fund and Support New Pilot Projects a) The Working Group recommends that two to three pilot projects utilizing a coordinated care model for individuals with intellectual disabilities and complex needs be tested to support clients and caregivers. b) The Working Group proposes utilizing local areas of innovation to create and implement additional innovative models of care, supporting individuals at home and in the community. c) The Working Group also recommends applying learning from the proposed selfdirected care (SDC) pilot project, should it be implemented, to inform a future pilot project for SDC for adults with intellectual disabilities and complex needs. 24