ALS is a very expensive disease, whether one lives at home or in an institution. Institutional care imposes a heavy burden on taxpayers. Home care is much less costly, but the expense falls principally on the family, and often becomes exorbitant in terms of their ability to pay. This is true even though various agencies and groups provide some form of help. The assistance provided by the ALS Society becomes, for many people, a critical factor in their remaining in the much more desirable and less costly home setting.

The person with ALS may need some form of supporting device when diagnosed, and in almost all cases, proceed through a bewildering variety of equipment: scooter, walker, manual and power wheel chairs, transfer seat, ceiling lift, stair glide, porch lift, hands-free toilet, ventilator… The list goes on and on. It may be that no other disease requires so much equipment or care. At the same time the requirement for attendant and nursing care is increasing.

Funding assistance for these requirements may be available through government and other programs.

Below is a list of various types of equipment required by a person with ALS. This list is by no means complete as each person may require additional items.

• Cervical collar
• Porch lift
• Leg splints
• Software/Switch computer
• Raised toilet seat
• Switches
• Scooter
• Home renovations
• Custom seating
• Communication devices
• Batteries
• Bed
• Walkers
• Special mattress
• Manual wheelchair
• Ramping
• Electric wheelchair
• Sturdy Lift, installed
• Easy-lift chair

Other in-home care, for example nursing assistants, homemakers, etc., means additional cost.

When you have first been diagnosed with ALS, there are many things to consider. One is when and what to tell your employer. This is very much a personal decision depending on your condition and personality, as well as your employment situation.

Checking out the benefits in your employer's group insurance is certainly a first step, though at this stage you may not yet be aware of the full range of your potential needs. The pension plan may be another area worth checking into. All of this can be done before telling your employer you have ALS.

When do you tell your employer?

Here are some things to consider.

• Can you hide your symptoms from your employer?
• Are you working on a project that you want to finish, before telling your employer?
• Should you tell your employer so that they have adequate time to plan how to accommodate you in the work place or plan for your replacement? (In many provinces it is a legal requirement to “accommodate” a person with a disability such as ALS.)

Do not sign anything regarding your termination without first getting legal advice. Legal termination minimums are usually linked to years of service.

Be careful about doing anything that might restrict your access to group benefits.

What protections do you have under provincial labour legislation?

Consider getting advice from a lawyer who specializes in human rights, provincial employment standards and labour legislation.