Lean On Me
It’s no secret navigating the health care system can be challenging. It’s like a giant maze with care offered over here, equipment available over there, and support services provided someplace else. It can be confusing, frustrating and completely overwhelming especially if you or a loved one is simultaneously dealing with the symptoms of amyotrophic lateral sclerosis (ALS).
The ALS Society and the CLSC can help you: the ALS Society offers different information, support and guidance programs, while the CLSC provides home services as well as help connect you with other health care partners
Your CLSC: a tremendous resource
“The team at your local neighborhood CLSC deals with all aspects of the health care system on a daily basis. We work in collaboration with many different partners,” says Nathalie Beauvais, an occupational therapist at the CLSC Lac-Saint-Louis. “Reach out and ask for help, we’ll do whatever we can to support you.”
Ms Beauvais explains that a lot of people living with ALS may not turn to their CLSC or the ALS Society because they have heard about long waiting lists or don’t know what is available. Others might believe their situation is so unique, no solution is available; others simply don’t want to be a burden.
“It’s true, waiting lists are a reality, but please, don’t let this stop you from calling us and asking for support,” says Janet Gregory, a social worker with the CLSC Lac-Saint-Louis. “Call the CLSC at any stage of the disease, of course, the earlier the better”.
Ms. Beauvais was instrumental in starting a ‘buddy system’ at the CLSC Lac-Saint-Louis. When a client with ALS calls for support, both an occupational therapist and a social worker meet with the client and their caregivers at home. Our model involves these two health care professionals working together. They coordinate the CLSC services and referring to other professionals as needed. “ALS can be overwhelming for clients as well as workers. The needs are numerous, both physically and emotionally. This model provides a more global approach and a more supported situation for the workers”, says Ms. Gregory. Not all CLSCs have such a model in place. Some workers may be alone dealing with ALS clients. We are strongly encouraging other workers to contact the ALS Society for information about different resources, ideas and support.
Getting to know and trusting each other is key
During the initial visit, the CLSC Lac-Saint-Louis health care workers meet with the client and caregiver to get a better understanding of the situation. They determine the need for equipment, modifications to the home and support services. Nothing is done without the client’s consent and everything is done at the client’s rhythm. The CLSC team makes recommendations, but ultimately clients decide when they are ready.
“Our model allows the client and caregiver to get to know and to develop a bond of trust with the health care professionals who will be responsible for their care,” explains Ms. Beauvais. This approach allows us to better adapt to a variety of needs because every situation is different.
Array of services available
Some of the services available to clients with ALS include small or specialized equipments, home adaptations to improve accessibility and to ease providing care, and support services (for example, help with care routines, meal preparation, respite for caregivers). There are procedures and criteria for these services. For example, specific equipment is required in order to receive certain services. The workers can define and clarify what needs to be done.
“It’s a reality of our health care system that the amount and type of services available to clients varies from one CLSC to the next,” says Ms. Gregory, “But, this shouldn’t stop them from asking for whatever type of help they need. If your CLSC can’t provide it, maybe the ALS Society of Quebec’s equipment loan and financial assistance programs can fill the void.” We think of situations when ALS Society helped financially for the rental of a temporary ramp, for massages to help with pain, or for electric recliners.
“We don’t want those living with ALS to suffer alone and in isolation. The team at your local CLSC and the ALS Society of Quebec can make a difference in your life. We do our best to make things easier so you can enjoy the best quality of life possible,” says Ms. Gregory.
To register or to learn more about the services available at your local CLSC and at the ALS Society of Quebec click here.