Priority Issues Overview
2015
About MS:
An estimated 9,000 British Columbians live with multiple sclerosis (MS), a chronic neurological disease that attacks the central nervous system. MS may lead to a number of debilitating symptoms, including permanent disability. Most people living with MS are diagnosed during their working years – between the ages of 15 to 40 – just when they are raising families, paying down mortgages, saving money for retirement and contributing to the community. The progression of MS may result in temporary or permanent absences from work and 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 Multiple Sclerosis Society. For over 60 years we have provided hope and help to people with MS. This includes improved services, access to treatments and therapies, enhancing the rights of people living with disabilities and creating greater supports for caregivers.
The Multiple Sclerosis Society recognizes the challenging economic times that our province faces. The MS Society’s key priority issues outline ways health care, employment and social programs can be delivered economically and compassionately. The following provides an overview of our key priorities for 2015.
Access to coordinated quality lifelong care and treatments
People with MS, those with other diseases of the brain, and people with disabilities need equitable access to a continuum of appropriate, high quality home supports and treatment options in order to maintain their independence, live in their own homes and participate in community life. The Government of BC needs to:
· Invest in comprehensive home care for people with long term chronic health conditions such as MS so that they may remain in their own homes
· Create a range of age-appropriate housing and residential care options for people who cannot remain at home
· Improve rehabilitation services in the community, ie. physiotherapy, occupational therapy, vocational rehabilitation, for people living with MS
· Provide timely access and public reimbursement to all Health Canada-approved MS therapies.
Job retention
People with MS often struggle to continue working. Most jobs are not flexible enough to accommodate their needs – and government programs do not support part time work. The federal and provincial governments need to improve job retention and better coordinate income and disability benefits for people impacted by MS and other episodic disabilities.
· Expand labour market agreements and other employment funding programs to provide early intervention and other services to support job retention as a priority to improve employment participation rate among those living with an episodic disability such as MS.
Support for Caregivers
MS affects the entire family. Spouses, mothers, fathers and children as well as friends become caregivers – integral to the health and well-being of people with MS and they too struggle financially. Many find it difficult to keep fulltime jobs while they carry out their vital duties as caregivers – and government support is not adequate of flexible enough to cover their basic living costs. A caregiver allowance has the potential to reduce the likelihood for care recipients to be admitted to long term care, as noted in the preliminary study of the Nova Scotia Caregiver Benefit. The provincial government should:
· Support caregivers by offering a fully refundable caregiver tax credit, following the example of the Government of Manitoba.
· Review the outcomes of the Nova Scotia Caregiver Benefit related to reduction in residential care admissions and cost savings.
Access to government services, programs and benefits accessible for people living with episodic disabilities
Many people in BC live with episodic disabilities and the numbers are increasing. Episodic disabilities are lifelong conditions that are characterized by periods of good health interrupted by periods of illness or disability. For people living with MS, these periods may vary in severity, length and frequency from one person to another. The Government of British Columbia must:
· Ensure that British Columbians dealing with episodic disability can have access to disability programs, services, and benefits.
Summary
The recommendations above require investments of new funds, but also require the Government of BC to make commitments within existing programs and initiatives that will improve the health, social, and financial status of people affected by MS and others with episodic disabilities or chronic illnesses.
Action now would lead to improved supports to help people with MS continue to live and work independently and contribute meaningfully to their communities.