ALS Canada 2013 Annual Report_Layout 1 5/8/14 2:04 PM Page 1 CANADA OUR MISSION ALS Canada is committed to: • Support research towards a cure for ALS. • Support provincial ALS societies in their provision of quality care for persons living with ALS. • Build public awareness of ALS and its impact. ALS Canada 2013 Annual Report_Layout 1 5/8/14 2:04 PM Page 3 POweR thROUgh COLLeCtIve ACtION As Chair of ALS Canada’s board, ALS Canada has firmly planted I have witnessed over the past the foundational work to year the power of collective anchor the organization action as our staff and towards a sustainable future. volunteers focus to deliver on In 2013 we broke new ground our organization’s key areas: through the power of Cure, Careand Collaboration. collective action across the ALS Community. Strength- The ALS Community in Canada ening our client relationships is a strong, collaborative team. to deliver on a better service World-class researchers are a model; collectively harnessing part of that team. This year, ideas from the research community to build a strategic framework members of ALS Canada’s Scientific & Medical Advisory Council towards a new vision; forming collaborative programs along with (SMAC), the Board of Directors and ALS Canada staff developed a the members of the Federation; all poised the organization to be comprehensive research strategy and set the direction on how we can positioned to take bold actions needed for clients and families work together to accelerate finding a therapeutic discovery for ALS. living with ALS. As a result, ALS Canada will focus our research program on translational research. We will continue to be a part of world-renowned research And it was this ground work that was the impetus to elevate ALS initiatives with a clear goal: advance ALS Research from bench to Canada’s client service model to better address clients’ needs. We bedside. did this through collaboration with our clients. Clients provided us feedback on what was working and what wasn’t and stemming “ we are a collective committed team and continue to work together to make “ Our Inspiration to excel Comes from life better for people living with ALS the Clients we Serve ” across Canada ” from those conversations the Client Services model was changed to reflect what was needed in our programs. The results were We have also continued to focus our Client Services division on astounding. This year alone, over 1100 clients in Ontario were providing consistent quality programs and service to clients and provided access to home care, palliative care or long term care. families across Ontario. We’ve connected to clients, bringing them into the conversation on how we can best meet their growing needs. Awareness and advocacy were also key priorities. Thanks to The collaboration and feedback has been invaluable and has given ALS volunteers and donors, the word spread amongst national " You know the saying about a flower growing in Canada insight to enhance existing programs to meet those needs. communities about ALS, raising millions of dollars to support clients and fund ALS research. ALS Canada’s Federation Council, representing each provincial ALS the dark? A small ray of light finds its way and Society across Canada, has developed working committees to It is the ALS Canada research program, made up of a world-class strengthen and build new programs that will make a difference for research community, that this year came together and built a new the flower will reach for that. I made a choice clients and families across the country. Working together, the ALS vision for our future: to discover a new therapeutic breakthrough, to reach for my light and leave a footprint Societies across Canada continue to ensure people with ALS and their through a national network, for ALS by 2017. As a team, we will families receive the support and assistance they need. succeed. of beauty. I am a fighter with an We have increased our organizational capacity and expanded our In review of this year, I am extremely proud of the depth and senior volunteer talent pool to include six new board members: Josette scope of our work that has been accomplished. It is because of invisible opponent. Melanson, Dyana McLellan, Jane Williamson, Dr. Lorne Zinman, an entire community: researchers, clinicians, volunteers, our I do not know when to give up. " Tammy Moore and Melanie York – who all bring a multitude of diverse board of directors and donors that make ALS Canada a leading skills and expertise. organization. – Matthew Foley, ALS Client Thank you to the volunteers and donors who have dedicated their time, talent and resources to collectively power our organization forward in support of our clients and families from coast to coast. Sincerely, Sincerely, Lanny McInnes, Chair Lindee David, Chief Executive Officer 1 ALS Canada 2013 Annual Report_Layout 1 5/8/14 2:04 PM Page 5 StReNgtheNINg ReLAtIONShIPS “ we are not diminished because we have ALS. we will not be defined or swallowed up by this disease. we are and will always be exceptional human beings” Melanie York, ALS Canada Board Member ALS Canada’s client services are delivered by a compassionate Learnings team of professionals focused on meeting the needs of ALS Ontario • 97% of respondents were very satisfied or satisfied clients and their families. This year we worked together to with timeliness and advanced notification for Client Services in Numbers strengthen relationships with our community partners in equipment delivery palliative care, hospice, community care and occupational therapy to deliver quality programs and services. • 100% of respondents indicated the equipment loan pool has been of value to them This was the year we engaged clients and families, conversing and soliciting opinions regarding our service model. We • Clients learned about the equipment program embarked on gathering quantitative data from clients on two primarily from ALS clinic staff and Occupational key areas: the ALS equipment program and overall client Therapists experiences. The information gathered was invaluable and Two common themes emerged: 1 – inability to access was the precipice to improve both areas within the information regarding equipment available 2 – concerns that organization. equipment delivered did not meet the client’s needs. We are committed to working together as a unified unit. It is Response because of the collective action of the entire Client Services team that has been the catalyst for ALS Canada to be able to In response, we created a pilot project in Toronto that increase services to clients and caregivers, and enhance the changed the logistics of our equipment program moving it knowledge of community personnel about ALS. Of the 1117 from a loan pool model to a rental/purchase program. Ontario clients registered with us, 923 clients and their family Accomplished by partnering with Shoppers Home Health Care members received direct service. (SHHC), this new model has delivered: eliminating a delivery 270 fee, decreasing the transaction time to receive equipment in New clients A Year in Review for Client Services seven days and decreasing equipment maintenance. The year started with an internal review to improve the way During this time clients also started to receive their own we delivered our services. As a result of that review, we personal custom seating system. We worked in conjunction introduced a new service model that re-aligned the service with Occupational Therapists to ensure clients received the 2600 regions of our current resources in accordance with the local right seating the first time. Requests for Community Care Access Centres. The purpose: to ensure a 923 equipment Regional Manager was available to all clients regardless of Milestones Direct service to clients and families where they lived in the province. A pictorial list of equipment was placed on the ALS Canada 1117 We embarked on a six month quantitative study of the website, to provide clients better insight into what the total clients equipment program, soliciting feedback from clients around medical equipment looks like and what equipment was satisfaction levels from our services, the equipment they available. received and knowledge of resources ALS Canada provided. We launched a pilot transportation fund for clients living in 1900 the Durham region. The fund set at $500 per client is used to Pieces of Did you know clients who have a household income of assist clients in covering transportation costs to attend equipment distributed 1100 less than $80,000.00 and require seating devices through medical appointments. home visits ADP can receive funding from ALS Canada. 3500 100 Contacts were made 2 Support groups ALS Canada 2013 Annual Report_Layout 1 5/8/14 2:04 PM Page 7 If you are thinking of donating money for a A COLLeCtIve vOICe good cause, donate to ALS research. You’ll be glad you did. You will know when you get hit “I’m still struggling with the profound implications of what this with this disease, and more and more people disease will do to me and my wife and two teenage kids. The prospect of what awaits me as this illness takes hold is terrifying. are, you will want to make sure that we Our lives are being torn apart, and to add to the emotional bur- make progress on the research so that ALS den we also face significant care expenses that are not covered by the medical system that we have come to rely on.” patients have a hope for survival Brian Parsons, diagnosed with ALS in May of 2013 – Zehra Madenli, ALS Client Over $150,000 $49,108 $36,467 direct costs for the average indirect costs annually in costs (direct and indirect) course of the disease (3.4 (lost income for the years) (home renovations, patient and family mobility equipment, medica- members) tions, medical devices and Once again, we visited officials in Ottawa to services such as portable lobby for reform to the Compassionate ventilators, physical therapy) Care Benefits (CCB) policy.