As New Brunswick’s Department of Social Development continues to look at the social assistance reform, I wanted to discuss the importance of home care. Home care workers are overworked, underpaid and do not have paid sick days. Oftentimes if a worker is unable to come to work, home care companies are not able to find replacements, leaving the elderly and people with disabilities in a vulnerable position.
I have cerebral palsy (CP). CP is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles.
I also have esophagitis osinophilic esophagitis (EoE), which is a chronic disease of the esophagus. Your esophagus is the muscular tube that carries food and liquids from your mouth to the stomach. EoE causes damage and inflammation, which can cause pain and may lead to trouble swallowing and food getting stuck in your throat. EoE is rare. But because it is a newly recognized disease, more people are now getting diagnosed with it.
I rely on home care workers to meet my daily needs. Help with personal care, meal prep, and range of motion stretches to name a few supports they provide me daily.
Having to go without a home care worker puts people in crisis mode if they need it. It forces people to rely on friends and family or neighbors if they are lucky enough to have that support.
If New Brunswick’s Household Income Policy would allow people to live together whether it would be a spousal relationship or a roommate this would allow for easier access to support when needed and avoid someone with a disability or an elderly person going into crisis mode.
Having home care support is not a luxury it is a necessity for many. Home care workers enable people to live at home for as long as possible and meet their daily needs. Having a home care worker can reduce stress on loved ones and help with someone’s mental health as they will also have companionship. So many people have talked about mental health issues with COVID-19 and being able to live with someone is not only a safety issue for some people but also reduces isolation and keeps cost low during these unthinkable times. I am grateful for the programs and resources that are available to me but so much work still has to be done to help our most vulnerable people.
Home care workers should get the ten sick days a year, as advocated for all workers by the New Brunswick Federation of Labour. There should also be standby home care staff for when a home care worker cannot come into work.
Allowing people living with disabilities to live with roommates takes the stress out of relying on home care for all their needs. For example, I received a phone call at 9am that my 12pm home care worker is not able to attend. Then what is a person left to do? You have to act quickly when you find out you will not be having home supports. Being able to live with people ensures you are not always left alone. This is not just about equality, this is also about safety and quality of life. If you are able to have a roommate live with you and keep your benefits, people with disabilities would not always be living in crisis mode. We would not have to worry about being left alone for days or left scrambling to find family members to help out. However, not everyone has supports from their family and friends that they can reach out too.
Some people with disabilities can work, however they may still require home care to get ready for work.
A person’s income determines the amount they must co-pay for home care. I hope that New Brunswick’s Social Development’s review of social assistance policies will consider putting a cap on home care co-payments that people must pay to get the service they need. People should not have to choose between having a job with decent income and home care support.
Having a disability is not something someone can control. I believe it the government’s job to assist those in need and reduce poverty rates do not create more barriers for people with disabilities. Let’s work together and make a more inclusive New Brunswick.
Kaitlyn Layden is a Saint John resident living with cerebral palsy. She loves coffee, her cat and is an advocate for those living with disabilities. She also owns the small business, Layden’s Keepsakes.
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