Melissa Dockeray's 17-year-old son is nonverbal and non-ambulatory. He requires support for all aspects of daily living, including feeding and toileting, and 24/7 monitoring for a seizure disorder.
Considering he is medically fragile and technology dependent, there aren't many respite options for the family outside of a facility because of the essential equipment required. Unfortunately, for Dockeray and many other families who depend on respite service for basic survival, ErinoakKids' temporary pause of respite services has dealt families a hard blow.
For those who might not know, ErinoakKids Centre for Treatment and Development is the province's largest children's treatment centre, providing a broad range of medical, therapeutic and support services to children and youth with special needs.
"Respite opportunities for us mean that we have some time to dedicate to another typically developing son, busy as a hockey and baseball player. We very much plan those services strategically in January every year while we chalk out our activities and schedules," Dockeray, a teacher and resident of Oakville, shared.
In winter, her son can use the service for the weekend overnight, whereas in summer, the family gets help for one week at least.
Dockeray's younger son has a hockey tournament at the end of June that both her husband and she want to attend. Unfortunately, just two weeks ago, she got a call from ErinOaks staff informing her of the cancellation of the respite service she booked for June. She also learnt that the temporary staff laid off are casual employees who might be hired back as permanent later.
According to the parents Oakville News spoke with, ErinoaksKids respite staff are caring and empathetic. They often move mountains to arrange additional respite opportunities several times when families need them. That being said, many of these parents won't be able to use the respite services and are frustrated over not being warned well in advance to plan alternate respite solutions for summer.
ErinoakKids Centre for Treatment and Development's President & CEO, Bridget Fewtrell, confirmed over an email to Oakville News that the paused respite services are expected to resume mid-summer. She also stated that the staff have had individual conversations with all families impacted to discuss the plans and their individual circumstances and will remain in touch as they re-open registration.
According to the service provider, respite is largely unfunded and is provided sporadically and only when resources are available.
"As a result of an active fundraising campaign and the generosity of our donors, we will be able to offer this critical service on a more continuous basis (up to 44 weeks per year) to about 40% more families than present day, when we re-open. With more resources, we will be able to move away from the use of casual staff in providing this program to offering full and part-time permanent positions to those interested in supporting children with disabilities," Fewtrell added, explaining the rationale behind the temporary pause in service.
In light of the program's redesign, the parents still wonder why ErinoaksKids must close down for three months to bring in this expansion.
"In the summer, we all need a break, and usually, we have to book months in advance. The lady who called was reading a script. She had no additional answers as to why they were shutting down the services. It was much later when they released a press release due to the backlash," Dockeray pointed out.