The roles of ALS Canada, LHINs and ALS clinics in helping people diagnosed with ALS in Ontario

If you are diagnosed with ALS in Ontario, you can access information, care and support through a few different sources: ALS Canada, your ALS clinic, and the LHIN (Local Health Integration Network, formerly known as the CCAC or Community Care Access Centre). Understanding the different role of each organization can help you decide who to contact when you have questions or new needs.

If you are unsure about the different roles of ALS Canada, LHINs and ALS clinics, we have put together a brief summary of who does what to provide some clarification.

ALS Canada

“At ALS Canada, we help people navigate the health care system,” says Lisa Droppo, Vice President of Client Services for ALS Canada, “so oftentimes, contacting your ALS Canada Regional Manager is a good place to start.”

ALS Canada Regional Managers are often considered a “listening ear” for people with ALS and their families. They offer practical support by answering questions and helping connect you with other healthcare providers and community supports, acting as a liaison and advocating on your behalf when needed. Although they do not provide medical advice or make any referrals themselves, Regional Managers can fill in the gap between clinic appointments and LHIN Care Coordinator visits when you need to be able to access an expert resource.  Throughout your journey with ALS, Regional Managers will stay in touch with you to provide practical and emotional support through face-to-face visits or by phone or email. They also facilitate monthly support groups for people with ALS and their caregivers, and support local fundraising efforts such as the annual WALK for ALS in communities throughout Ontario.

Another service ALS Canada provides is access to equipment like wheelchairs, ramps and lifts that help people with ALS to cope with declining mobility and communication. While not every equipment need can be met, there are a range of items available as listed on the website. Some equipment is provided on loan free of charge, while other equipment is made available through a funding allowance or financial assistance. Regardless, access to this equipment can help to offset some of the financial burdens of living with ALS, which can cost a family between $150,000 to $250,000. Generally, requests for equipment are made by allied health professionals such as occupational therapists or nurses who can identify the type of equipment that is most suitable and take any measurements needed to ensure safety and comfort.

ALS Canada is a charitable organization, which means that donors fund all of its activities. These include all of the services and support described above as well as a national research program that runs grant competitions to fund the best ALS research in Canada; and provincial and federal advocacy to drive policy change and better system access for the population of Canadians who are living with ALS. Outside of Ontario, provincial ALS Societies provide services and support (which vary by province) to people living with ALS within their borders and contribute to federal advocacy efforts as well as the national research program.

ALS Clinics

Although some people with ALS are diagnosed by a community neurologist who is not associated with an ALS clinic, most people receive their confirmed diagnosis at an ALS clinic. Located within hospitals across the province, ALS clinics provide specialized clinical care that includes ongoing monitoring of symptoms as well as treatments and adaptations that can address some of the symptoms of ALS while helping to improve safety and comfort.

Different ALS clinics have different care teams: all will have a lead physician (usually a neurologist or physiatrist who are experts in ALS) while some will also have respirologists (breathing); occupational therapists (functional ability); speech-language pathologists, (communication, eating, drinking, and swallowing); and more. Many clinics are actively involved in ALS research by running clinical trials and other studies to discover effective treatments for ALS.

On average, someone living with ALS will have an ALS clinic appointment once every three to six months. There are five ALS clinics across Ontario: Hamilton, Kingston, London, Ottawa, and Toronto and their details are all provided on ALS Canada’s website. If there is no ALS clinic in your area, you will need a referral from your family doctor or neurologist to attend an ALS clinic in Toronto or London that accepts clients outside of its immediate geographical area.

LHIN (Local Health Integration Network)

As ALS progresses, it is likely that additional support is needed at home with daily tasks like dressing, bathing, eating meals, and moving from one place to another. LHINs are government-funded agencies that offer services such as in-home care from personal support workers (PSWs) and allied health professionals for people who qualify for support.

You do not need a referral to contact your local LHIN. Once you complete their telephone intake assessment, you will be connected with a LHIN Care Coordinator to help identify your needs and develop a personalized care plan. LHIN Care Coordinators are regulated health professionals with expertise in nursing, social work, occupational therapy, physiotherapy or speech therapy who work directly with you in your home.

The LHIN Care Coordinator assigned to you will talk to you about your goals, answer questions about services available in the home or in the community, and conduct a health care assessment in order to develop a customized care plan that will maximize your comfort and mobility. Support can take a variety of forms. For example, your Care Coordinator may conduct an eligibility assessment for in-home care services such as PSWs to help with daily living. Your Care Coordinator may also identify and arrange consultations with relevant health professionals such as occupational therapists, physical therapists, speech language pathologists and dieticians who can help you manage your mobility, communication and nutrition.

Striving to optimally support people living with ALS

Back at ALS Canada, Vice President of Client Services Lisa Droppo knows it can be challenging to find help if you or a loved one has ALS. “Services are not necessarily delivered in the same way from one part of the province to the next,” she acknowledges, but adds that “we are all looking at opportunities to ensure service delivery is efficient and family-focused.”

Lisa describes the example of a successful project in Central LHIN Region (which covers sections of northern Toronto, Etobicoke, York Region and South Simcoe County) to create an Integrated Team for ALS. The project saw ALS Canada Regional Managers and LHIN Care Coordinators working side by side to support people living with ALS. Collaboration among the various team members is important, especially in the case of a disease like ALS that can progress rapidly.

Another example is a situation in which the ALS Canada Regional Manager may notice a dramatic change in a person’s condition. “Perhaps the LHIN Care Coordinator isn’t due to come in for some time,” says Lisa. “The ALS Canada Regional Manager will call to request a reassessment by the LHIN Care Coordinator or work with the ALS Clinic Coordinator to help the family obtain additional services.”

ALS takes an enormous toll – physically, emotionally, and socially. From the loving support offered by family and friends to the practical support and medical care needed while living with the disease, there are many of us working to make the journey a little bit easier.

Posted in: Support & Services