Home Care for ALS
Home care is non-medical care provided in the home, either by loved ones or paid caregivers. Home care can include assistance with dressing, bathing, eating, getting to the toilet, and moving around.

Providing 24/7 care can be challenging for family members, no matter how much love and energy you have to offer. Finding additional help is an important part of creating a balanced and sustainable long-term plan.

Help from family and friends

There is probably more support available than you realize. Family and friends often want to help, but may not be sure what they can do. If you are open to it, a family member or friend can coordinate volunteer home care and other assistance through online tools like Care Connection, Lotsa Helping Hands, and Caring Bridge.
Decide what arrangement works best for you. Regularly scheduled days and times can allow you to exercise, run errands, meet friends for lunch, etc. ​​

Professional caregivers

Another option is paying an individual caregiver who can come to your home on a set schedule. ​Rates will vary. Hiring an individual caregiver should be less expensive than an agency, but there may not be a backup option if your caregiver gets sick or goes on vacation. You will be responsible for paperwork like tax forms and other standard employer insurance and benefits. ​

Home care agencies

You can also choose to hire an agency that will send trained caregivers to your home on a predetermined schedule. Agencies will take care of the paperwork, logistics, and training.

​Agencies are more expensive than individual caregivers, but you will be ensured consistency and reliability. If your regular caregiver cannot make it, another will fill in. Rates will vary by agency and location.

How do I find a professional caregiver or agency?

Selecting the right person or agency is important. It is worth doing research up front and conducting a thorough interview process to make sure you find the right match. We suggest asking your local ALS organization, family, and friends for local recommendations. Interview at least two or three individuals or agencies. For peace of mind, you can also choose to run a national background check on individual caregivers.

What should professional caregivers do?

When you are paying someone to enter your home and provide care, you should be very happy with the quality of service that you receive. If not, you have every right to advocate for yourself. You can begin by bringing up your concerns with the agency or individual.

​If you still feel unsatisfied, uncomfortable, or untrusting—for any reason—you have the right to change caregivers, whether it means requesting another person from the agency or finding a new agency altogether. You are paying, so you should feel very comfortable with the person who is spending so much time in your home.
A good professional caregiver should:
  • Be punctual, reliable, and trustworthy
  • Be kind, patient, and friendly
  • Abide by your prior written and verbal agreements
  • Respect your house rules and personal requests
  • Attend to your needs first, such as dressing, bathing, shaving, brushing teeth, clipping nails, etc.
  • Be proactive and go the extra mile (not just plop down on the couch and watch TV!)
  • Help out around the house when there is downtime. This can include cleaning, laundry, changing sheets, doing dishes, running errands, etc. Make a list before each visit.

Note: Professional caregivers who are not medically trained are not allowed to hand off or administer medication or liquid food supplements for the feeding tube.

Who pays?

Aside from support from family and friends, non-medical home care can be expensive. Whereas medical care is often covered by insurance, you will likely have to pay out of pocket for non-medical home care, unless:

  • You qualify for long-term care through your state’s Medicaid program
  • You purchased a long-term care policy before your ALS diagnosis, which should help cover medically necessary services and personal care services, both inside and outside the home
  • You qualify for assistance with a short-term assistance respite program; ask your local ALS organization about options

​Veterans: The VA may pay for up to 30 days of respite care a year, either at your home or in a VA community living center. You can also use service-connected compensation to pay for home care.

Long-term Care through Medicaid

Medicaid has a program that helps qualifying individuals receive long-term care in their homes, assisted living facilities, and skilled nursing facilities. This program is separate from Medicaid health insurance, and eligibility guidelines are different. Some people who do not qualify for Medicaid health insurance may qualify for long-term care assistance.