Finding Support and Care for ALS Patients and Families in Ontario

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive neurodegenerative disorder that impacts the nerve cells in the brain and spinal cord responsible for muscle movement. As the disease advances, it leads to muscle weakness, paralysis, and respiratory failure.

Receiving an ALS diagnosis means facing incredibly difficult physical, emotional, and practical challenges for both the patient and their loved ones. However, while ALS remains incurable and fatal, there are many resources and support services available across Ontario to help improve quality of life and ease the immense burden for those living with this disease.  

ALS Clinics and Treatment Centers

Ontario is home to several multidisciplinary ALS clinics and treatment centers that take a comprehensive team approach to managing care and supporting patients and families through each stage of the illness. These specialized clinics provide:

• Access to ALS-specialized neurologists, nurses, dietitians, respiratory therapists, speech language pathologists, occupational therapists, physiotherapists, social workers, and other allied health professionals coordinated in one location
• Information and assistance understanding treatment options and clinical trial opportunities
• Help navigating and accessing equipment, assistive technologies, home modifications, and community resources as needs progress
• Support groups and counseling services
• Latest research updates and opportunities to participate in studies
  

Major ALS clinics are located at Toronto General Hospital, London Health Sciences Centre, the Ottawa Hospital, Thunder Bay Regional Health Sciences Centre, and Hamilton Health Sciences.

Equipment Loan Services

To help maintain mobility, function, independence and quality of life as ALS advances, patients often require an extensive array of equipment and assistive technologies. The Ontario government provides coverage for certain ALS equipment through the Assistive Devices Program (ADP).

The ALS Society of Canada also operates equipment loan services in many Ontario communities to help fill gaps in affording expensive supportive equipment like mobility aids, lift devices, communication tools, and more. They provide these items at no cost through recycling gently used donations from others.

Community Care and Home Care

Beyond clinical treatment, ALS patients also require various community and home care supports to maintain safety, comfort, and quality of life, especially in later stages. In Ontario, resources include:

• Home and Community Care Support Services which coordinate professional home nursing care, personal support workers, therapists, and respite services to reduce caregiver burnout
• Special dietary meal services and feeding tube supports
• Mental health counseling and support groups
• Transportation services, mobility transit and accessible parking permits
• Home modification subsidies to make living spaces ALS-friendly
• Long-term care home application support if residential needs arise
  

Your ALS clinic team social worker can be invaluable to connect you with these services through your local health integration network.

Hospice and End-of-Life Care

One of the most difficult challenges families face is preparing for and accessing quality hospice and end-of-life care when the time comes. ALS Ontario offers educational resources, advance care planning assistance, and referrals to hospice care providers across the province.

Many local hospices like the Hospice of Windsor and Essex County have specialized ALS support programs and trained staff to provide tailored palliative and respite care. The Better Living Community Health Centre in Toronto also has an ALS-focused support program and equipment clinic.

Financial Assistance

Due to the various costs associated with ALS care over time like home modifications, equipment, transportation, homecare needs, and lost income for patients or caregivers having to leave work, the financial strain can be significant. Fortunately, there are some financial assistance resources:

• The Ontario Disability Support Program provides income support and other benefits
• The federal Disability Tax Credit offers tax relief for extensive condition-related costs
• The ALS Society of Canada has a supporting youth, caregivers, and equipment fund
• Many local ALS associations offer various financial aid grants and subsidies
  

Legal Planning Support

It's wise for any ALS patient to promptly prepare legal, financial, and end-of-life affairs due to the progressive nature of the disease. The ALS Society has a guide to support navigating documentation like Power of Attorney, wills, trusts, and advance care directives.

Lawyer referral services through the Ontario Law Society, legal aid clinics, andPro Bono Ontario's Free Wills program can help make this process easier and more affordable.

Support and Community

Beyond the medical aspects, connecting with others navigating the ALS journey can provide invaluable emotional support and advice through this difficult diagnosis. Local ALS Societies organize support groups, educational events, recreational outings, online forums, equipment services and more to foster a caring community.

Major chapters are located in Toronto, Ottawa, London, Windsor, Sudbury and Thunder Bay. The ALS Canada website also has a virtual support group that anyone in Ontario can join.

While the ALS journey is filled with immense challenges, having access to the right medical care, equipment, therapies, community services, and support networks can help improve daily life as you face this diagnosis. Ontario has many passionate organizations waiting to help you access those invaluable resources every step of the way.