Supporting families as they navigate the progression of ALS
Last fall, The ALS Society of Quebec was pleased to announce that over 79,000 generous Quebecers raised $2,660 000 through the Ice Bucket Challenge. The funds are being allocated to two important areas: the national research program with ALS Canada, in which funds are being matched by Brain Canada, and the expansion of existing services in the province of Quebec which include: the purchase of specialized equipment not covered by government agencies, psychosocial counselling for the whole family, providing information related to the condition, financial aid programs, home adaptations, support groups and social activities for our members. The funds will also be used to develop new services that address the most pressing needs of the ALS community, for years to come.
Caring for the caregiver: Respite Care Pilot Program aims to support families of people living with ALS
In December 2014, the ALS Society of Quebec conducted a CROP survey with its members—people living with ALS, their caregivers and healthcare providers—to get feedback on the Society’s services and determine their most pressing needs. One of the main findings of the survey was the need for respite care. The Society has quickly moved to launch a pilot program to address this.
Claudine Cook, Executive Director of the ALS Society of Quebec, extends the Society’s thanks to everyone who participated in the survey. “Feedback from the survey showed that not only is respite care a vital issue, but that it means different things to different people,” she says. “ALS is a complex disease and family members can have very different needs at various stages. Our new respite care program is designed to support families in meaningful ways that will complement the services already available to them.”
The Respite Care Program is being launched thanks to the hugely successful Ice Bucket Challenge (IBC) in 2014, which coincides with ALS Society of Quebec board member, Chantal Lanthier`s proposal for such a program, shortly before the IBC made headlines.
How the program works
Initially, the Respite Care Program will take the form of a six-month pilot project. Members of the ALS Society of Quebec will be eligible to receive up to $1,500 annually, to reimburse expenses for respite care, in order for those caring for someone with ALS to find additional support or the opportunity to take a break from their ongoing responsibilities. Diane Tkalec, ALS Society of Quebec board member and Respite Care Program committee member explains that the idea is to help maintain health and wellness by reducing stress. Not only will funds be provided, but families will be able to choose the services that suit their specific needs. Examples include getting help from local homecare providers for days, nights or weekends or spending time at an adapted care facility.
Ms. Cook says that the program is another way that the ALS Society of Quebec is working to partner with families. “This project adds to the services and programs we currently offer across the province by giving families funds to support their health and well-being.”
Families must request respite care services through their CLSC (social worker or occupational therapist); a form to request reimbursement will be made available to members. Any questions about the program may be sent to Kate Busch at the ALS Society of Quebec.
Additional funds will help support children’s activities
The ALS Society of Quebec is also pleased to announce a second new financial support program, one that will help fund extra-curricular activities for children of people diagnosed with ALS. The program will provide up to $300 a year, per child, for children under the age of 18.
“We are starting to see younger adults developing ALS,” says Ms. Cook, “many of whom have school-age children. For many of these families, there is not enough time or resources to focus on what their children need. Our new financial aid program will help families continue their child’s extra-curricular activities whether it’s sports, lessons or summer camp.”
The program goals are to promote and support the healthy development of children whose parents have ALS with the added benefit of providing parents peace of mind that their children will have opportunities for play and activities.
For more information on our services and programs and how we can support you, please visit our website at sla-quebec.ca or contact Kate Busch at [email protected], or call 1-877-725-7725 ext. 109.
Continuously improving our website
The ALS Society of Quebec is very proud of its new website which provides information and updates on living with ALS, the Society’s activities, and our many fundraising events. We are committed to continuously enhancing the content and the resource section to help you in your journey with ALS. For example, we now have an “ALS Nutritional Toolkit” which was developed this past spring by a graduate student specializing in nutrition for people with neurodegenerative diseases. You can download your free copy by visiting our site. We’d like to get your input too so if you have tips and tools to share, please send them to us at [email protected] !
The CROP survey results also showed that you’d like more information on research and clinical trials. We’ve taken note and will work with the research community to keep you up to date.
Make sure to consult our website regularly, sign up for our newsletters, ‘like’ us on Facebook, and follow us on Twitter to keep up with all our latest news and information
For more information on our services and programs and how we can support you, please do not hesitate to contact us!