Ontario Division 175 Bloor Street East Suite 700, North Tower Toronto, Ontario M4W 3R8 Telephone: (416) 922-6065 Toll Free: 1-800-268-7582 Fax: (416) 922-7538 www.mssociety.ca Submission Paper #2 to the Social Assistance Review MS Society of Canada, Ontario Division March 2012 Multiple Sclerosis (MS) is an unpredictable and often disabling disease of the brain and spinal cord that lasts a lifetime. Most people living with MS are diagnosed during their working yearsbetween the ages of 30 to 50 just when they are raising families, paying down mortgages, saving money for retirement and contributing to the community through taxes and in other ways. The progression of MS may result in prolonged or permanent absences from work and can increase the need to rely on disability pensions and social assistance programs for income security. People living with multiple sclerosis are at the heart of everything we do at the MS Society. For over 60 years, we have provided hope and help to people living with MS. This includes improved services, access to treatments and therapies, enhancing the rights of people living with disabilities and supporting caregivers. We are pleased that the Commission for the Review of Social Assistance has recognized many of the challenges identified in our August 2011 submission paper and posted on our website: http://bit.ly/zewbyy. The Multiple Sclerosis Society of Canada, Ontario Division, is pleased to provide a second submission paper in response to Discussion Paper 2: Approaches for Reform. In this second submission, we identify favourable approaches to reform. Our response will focus on the Ontario Disability Supports Program (ODSP), since those living with MS are more likely to apply and receive support from it than from Ontario Works (OW). Great programs are often created during difficult times. We recognize that the social assistance review is taking place during a period of challenging economic conditions. We are also aware that the Commission on the Reform of Ontario's Public Services (also known as the Drummond report) has recommended a number of cuts and caps on a wide variety of provincial government funding. We suggest, while it is useful to be mindful of these recommendations, the mandate for the review of social assistance should not be dictated by the limitation on social program growth but should also keep focused on the direction of the 2008 Poverty Reduction Strategy, on helping individuals and families escape poverty. This would ensure that social assistance in Ontario will be viable over the long-term in poor and in good economic times.
Issue 1: Reasonable Expectations and Necessary Supports to Employment Many people living with MS are employed when they first start experiencing MS symptoms and are then diagnosed. As the condition worsens, it affects their ability to remain in the workforce and forces them to make difficult and life altering decisions. Often, the attitudinal barriers of employers and a lack of workplace flexibility and accommodations are reasons why people living with episodic disabilities leave employment. Workplace accommodations and flexibility (for example, working from home, an accommodating office space, flexible working hours, or job-sharing) allow employees to keep their jobs and prevent them from turning to social assistance programs. Helping people living with disabilities to find employment is very important. Equally, and perhaps even more important, is the need to help people keep the jobs that that have when they first become disabled. MS is an excellent case in point since many with MS experience periods of worsening and improvement for an unpredictable period of time. Most are able to continue to work during this time, if they have appropriate accommodation in the workplace. Preventing people from leaving the workforce in the first place will ease the need to seek social assistance. Attitudinal barriers and a lack of workplace accommodations of employers need to be addressed through education and training. The government could provide a no-cost educational training to employers and their human resource departments to learn about workplace supports, workforce flexibility, recognizing indirect discrimination. Furthermore, training could also be provided to people with disabilities on self-advocacy and rights. A training program for employers could be built using existing resource guides for human resource professionals on the hiring and retention of those living with disabilities. Managing Episodic Disabilities is an online self-directed course, http://bit.ly/yhnfnx, established by the Canadian Working Group on HIV and Rehabilitation (CWGHR) that helps human resource professionals understand episodic disabilities and learn how to accommodate, encourage workplace participation and provide opportunities for people living with episodic disabilities. Features of Effective Services and Supports We are pleased that the Commission s Discussion Paper 2 recognizes the labour potential of people living with disabilities. Many Ontarians living with disabilities are willing and able to work to their full potential to complement needed disability income support when they are unable to work. Any employment service and support provided should be comprehensive in nature and meet individual needs. Comprehensive support would involve assessing the individual s work capacity, providing training to the potential employer, and following up with the individual and employer periodically to assess the success of the placement. Depending on the skill set and market demand, success is achievable since people living with disabilities are often seen as hard working individuals, who consistently demonstrate their worth to employers and colleagues. 2
Currently to qualify for employment training, the recipient must be able to return to work full time; those who can only work part time, or freelance, are not considered, nor are the types of disabilities individuals may have. For people living with MS who experience fatigue and/or chronic pain, working full-time is often not an option. Expanding training criteria and education opportunities to individuals who might be able to work part-time may broaden their skill sets, making them more employable for the future, and helping them to subsidize their income and become productive taxpaying members of society. We caution against the development of a standardized tool to assess the work capacity of people with disabilities. A tool may incorrectly identify a person living with a disability incapable of working or adversely may force an individual to take up work, regardless of their ability to do so. There is a question on whether a standard assessment tool could accurately gauge a person s capacity. People living with MS often face intermittent and indeterminate periods of disability for weeks, years or decades before the disease progresses and causes permanent disability. If created, a tool would need to capture this changing and progressive nature of the condition on a regular basis. A consistent application of the tool would add a layer of bureaucracy, which is undesirable for many recipients already navigating a system of complex regulations. People with disabilities have very personal requirements and abilities, have become disabled at various stages in their lives. Therefore, it is imperative to judge each case on its individual merits. More attention should be paid to persons with disabilities who want to return to work and provide them with supports and educational opportunities. If education is available, some clients can redirect their career opportunities and become active, productive members of society and will not need the supports of ODSP. To address workplace challenges, the government could take the lead in establishing a workplace task force to identify best practices and approaches it, and the business community, can take to accommodate employees living with episodic and permanent disabilities. Members of this task force should include employers from a variety of sectors, people with lived experiences, unions and non-profit organizations. Other examples of engagement-strategies and incentives that would be most effective in encouraging and supporting employers to hire more social assistance recipients would include the creation of a fund for small and medium businesses to support accommodations of people living with disabilities, the development of a guideline to identify workplace accommodations, the creation of an educational training program for both employers and low-income disabled persons and tax credits for employers who recruit people living with disabilities. Additionally, the government may want to consider establishing an award recognition program for businesses and organizations that find innovative ways of retaining and supporting employees living with disabilities. This would create opportunities to share best practices, encourage recruitment, and publicly recognize businesses and organizations that hire, train, and provide accommodation for employees living with disabilities. Recognition could also be 3
provided to businesses and organizations that achieve a certain percentage of recruitment of those living with disabilities. Access to Employment Services and Supports Employment services should be administered by the provincial government through Employment Ontario. Often, recipients are confused and find it difficult to navigate a complex system of employment supports because they deal with provincial and municipal levels of government. The sheer complexities of programs involved make it difficult for the end-user to navigate the system and receive proper supports in finding work. A simple, coordinated system would be more beneficial. The most effective approach would be to consolidate all current employment services (ODSP, Ontario Works) with EO providers. Consolidating the programs will create a uniform employment service that is consistent across the province. It will also eliminate employment program duplication and reduce the level of complexity for individuals accessing the service. Issue 2: Appropriate Benefit Structure Balancing Adequacy, Fairness and Incentives to Work We appreciate the complexities in finding an adequate level of benefits, in ensuring fairness between those who receive assistance and those who earn low wages, and in creating incentives for people to return to the labour market. Some ideas proposed in the discussion paper have more likelihood for success, in our view. People living with MS and disabilities would welcome the provision of extended health benefits. The costs associated with the management of MS are expensive (for example, the cost of disease modifying therapies (DMTs) can range from $20,000 to $40,000 a year) and are a large financial burden on the individual or family caregivers even with private insurance coverage. The MS Society is aware there are cases of people living with MS not taking DMTs because they cannot afford the costs. The suggestion to provide extended health benefits for all low-income Ontarians is a good one. Consideration might be given to using the Trillium Foundation as a potential source of funding. Alternatively, as suggested in the discussion paper, a pooled insurance program could be established for employers who currently do not offer benefits. In addition to providing extended health care benefits, a better-designed earned income supplement or an increase to the federal Working Income Tax Benefit (WITB) could be created more incentive to return to work. In terms of other options, the MS Society supports the excellent and practical recommendations in the paper, What Stops Us from Working? by John Stapleton, Stephanie Procyk and Lindsay Kochen. Some suggestions include: Increasing the Work-Related Benefit (WRB) to $150 a month; Implementing a 12-month, time-limited earnings exemption of $300 a month for the first year of earnings 4
Allowing Canada Pension Plan-Disability (CPP-D) recipients whose payments are too high for them to qualify for ODSP cash benefits to still qualify for ODSP ancillary benefits, such as housing and transportation; Assessing rent based on earnings after deductions; Continuing OSDP benefits throughout the reapplication for those who have lost CPP- D benefits; Increasing the Employment Start-up Benefit (ESUB) to $1,500. Just as importantly, the Commission should strongly consider an additional recommendation of creating a financial planning program for recipients of ODSP. Again here the emphasis should be placed on helping people return to work through housing incentives, educational/training incentives and avoiding claw backs when people with disabilities do find employment. In the long run, the system would benefit from these changes. Designing Benefits for People with Disabilities Designing a new program for people living with severe disabilities would require a common understanding and definition on what is meant by severe. It would also be necessary to distinguish the difference of a severe disability to one that is episodic, permanent or lesssevere. People living with MS have episodic and invisible (and sometimes permanent) disabilities. This can make it difficult for case workers and even medical doctors to determine or assess the disability of a person living with MS because it is always changing and sometimes even progressing. When an attack occurs, a person can develop a severe disability that may or may not be permanent. The government should avoid creating a program that may create more barriers for those with less severe disabilities to get assistance. It is our view that supplemental programs such as the Assistive Devices Program (ADP) should fall under ODSP, and it too should be reviewed. Here again, the rules to qualify for ADP are complex, and the process is too lengthy. A review on acceptance and denial of equipment requests is needed as well as a look into ensuring that there is equality in equipment requests throughout all areas of Ontario. People who rely on ODSP would be better served by a simpler and transparent application process of ADP. There is also the impression that with supplemental programs there is a veil of secrecy as to what benefits are available to recipients. Greater transparency of the supports is needed. Issue 3: Easier to Understand Complexity, Compliance and Risk Management When people turn to social assistance programs they do so during a stressful period in their life. If social assistance is to help in a time of need, it should be responsive and cases should be judged on an individual basis as each person s circumstance differs. The aim of the outcome is to help people integrate back into society and allow them to be as independent as they possibly 5
can be. Accordingly, the social assistance system should move from a surveillance approach toward an audit-based system of verification and monitoring since it would be most effective. Treatment of Assets If a person living with a disability requires temporary assistance, their assets should be protected, and they should be encouraged to accumulate wealth in savings programs such as RRSPs, RDSPs and TFSAs. An introduction of an Individual Development Accounts (IDA) is also favoured. For many people social assistance is often the last resort in seeking support. By the time an individual requires long-term assistance, it is likely they have already liquidated any assets. Issue 4: Viable over the Long Term In terms of improving integration and delivery, it is preferred that both OW and ODSP programs remain separate while integrating employment services and supports for those receiving social assistance. There are discrepancies between asset levels and requirements, and we want to ensure that the ODSP level for the protection of assets remains. Additionally, whatever the formula used in calculating a rate, it must be indexed to inflation to allow recipients to maintain the best standard of living. The MS Society continues to support Charles Beer s recommendation from his February 2010 independent review of the AODA, Charting a Path Forward, to designate the minister of Community and Social Services as the minister responsible for accessibility. Just as there are ministers responsible for seniors and women, so too should there be a minister responsible for accessibility. Issue 5: An Integrated Ontario Position on Income Security There is a growing disconnect between the federal and provincial programs. All federal programs assume that people have a work history. Those without previous work cannot reap the benefits. For those with a work history, the current mish-mash and interaction of social assistance programs in Canada results in claw-backs, and takes money away from those who need it most. Federal programs such as Employment Insurance (EI), Canada Pension Plan Disability (CPP-D), Workplace Safety and Insurance Board benefits (WSIB) require review and renegotiation while a provincial social program is restructured. The Ontario government s implementation of claw backs needs to be carefully reformulated in the short-term and ideally coordinated with all existing federally supported programs in the long-term. The review also provides an opportunity for the province to open a discussion on raising the level of minimum wage. 6
The provincial government should continue to upload social services and should not furthermore download the administration and funding of services, such as employment, to municipalities. A simple, coordinated system between all levels, with the bulk of services offered at the provincial level and improved coordination with several federal sponsored programs is what people living with disabilities need to help them live their lives as independently as possible. Conclusion The approaches favoured above require the government of Ontario to make a strong commitment to ensuring that a restructured social assistance program meets its mandate to help Ontarians escape poverty. A complete overhaul of the system will do much to improve the long-term social and economic position of people living with disabilities and chronic conditions like MS. The MS Society appreciates the opportunity to provide input into the second discussion paper of the social assistance review. We look forward to continuing the dialogue on improving social assistance for people living with MS, who are at the heart of everything that we do. For more information please contact: Natasha Mistry Senior Coordinator, Government Relations 416.922.6600 ext. 3193 natasha.mistry@mssociety.ca 7