Every time a home care worker ups and leaves, Hawkes Bay’s Miranda Mouland is forced to go through the same bureaucratic process to find someone new to care for her son Dana.
The 38-year-old, who was diagnosed with retinitis pigmentosa at age 10 and has been blind since he was 12, moved home last year after suffering a stroke that left him paralyzed on his left side. It means he now requires help to eat, shower, shave, dress, walk and go to the toilet.
He needs around-the-clock care, Dana says. He says trying to find a home care worker on the Northern Peninsula is torture.
“I know I’m not alone,” he said, “and that’s why I want others to hear my story.”
“There are people along this coast that have to go through the same thing because there just aren’t enough care workers here.”
The process when a caregiver leaves is always the same.
First his mother advertises in the local newspaper, then she hangs notices on billboards from River of Ponds to Flowers Cove. Finally she contacts registered home care companies to see if they have any workers in the region.
Mouland says the answer from those companies is always the same.
“They say no,” she said.
“There is a shortage of home care workers on this coast. Everyone knows that. Everyone who has a family member who needs help knows that.”
In a twist of fate Mouland knows of a local home care worker with 19 years experience who would love to care for Dana — herself.
But, she says, because legislation prevents parents from caring for their children, she is unable to become his full-time caregiver.
“Look, I know as good as anyone that there are people who abuse the system but this needs to be changed,” she said.
“You’ve just got to take one look at our situation — walk in our shoes for just one day and see what we have to go through.”
After their last home care worker left in April, Mouland was given a reprieve and was paid to care for her son, but only for 40 hours per week.
That contract runs out on September 22 which means the whole process of trying to find a home care worker will start again.
“It frightens me to death every time we have to go through this process,” Dana said. “I get stressed out because I don’t know what’s going to happen, I don’t know if we are going to find someone and when we do I don’t know how long they are going to stay for and to think that my mom is here and is willing to do it but can’t is ridiculous.”
“Who’s more qualified to care for disabled people than their families? Who else will be there for the disabled person and not just for the cheque at the end of the week or for their stamps?” Mouland adds.
With that in mind, the Moulands are calling on others in the same situation to contact them so they can petition the government to amend what Ms. Mouland brands a “sick system.”
What do they plan to do next?
“If we can all band together, if all the people on the Northern Peninsula join forces, we can make a difference,” Mouland said.
“This is not just about us, this about everyone in the same situation.”
Mouland has bigger plans.
“If we can all come together, we could take a bus down to St. John’s down to the steps of government and tell them that this needs to be changed,” she said.
“We have a voice and we need to use it.”
A health department spokeswoman said providing appropriate care for people in their own homes is a priority for the provincial government as part of the long-term care and community support services system.
Although the department does not comment on specific cases, she said the government has taken steps to ensure the availability and quality of services are in place, with the government spending more than $100 million on the program since 2006.
“Home support program services are intended to supplement, not to replace, care provided by the family/support network, therefore, employment of family members as home support workers is not permitted except in special circumstances as defined by an assessment process,” she said in an emailed statement to the Pen.
“Exceptions are considered in extreme situations where it is clearly demonstrated that client needs would not be met or met with the same level of quality. Approved exceptions are monitored, time limited and reviewed.”
She said the issue of family members providing care for their direct family was raised during the province-wide consultation process last year.
That process was held to help develop a plan for long-term care and community supports, which is now in its final stages. In the meantime, if you are in a situation similar to the Moulands, you can contact them at (709) 248-5154.
The Northern Pen