As parents, we love our children and want the best for them however sometimes their disability forces parents to seek additional care.
Parents in the Saint John and St. Stephen region were very happy when they learned they were finally getting respite homes in their regions. September was coming, and it was bringing long awaited help – and then the rug was pulled out from under these parents with almost no notice at all.
On top of the multiple issues this caused, it left parents with almost no time to seek out home care for the start of the school year.
In the words of Crystal Bateman, one of the parents who was desperately waiting on the arrival of this care:
When we found out a respite home was going to open, we felt relief. It’s difficult to find someone trustworthy, and someone who is physically and mentally capable of caring for him. At least in a respite home, the staff are supervised, trained, and held accountable… As a parent of a child with such high needs, it was a lot of concern taken away. We knew he would be safe and cared for. We could have a break and focus on ourselves and our other two children, even if only for 24-48 hours a month. And knowing the needs of the families in Saint John, we were considering ourselves fortunate to get that. When we were told it wasn’t happening, that tiny glimmer of hope was gone. We spent the whole summer with no respite, no support…but at least we had September to look forward to. Now we are back to square one, reaching out to as many people in politics as possible, trying to get some relief care.
Nathaniel is now 15, and regardless of his diagnosis – which so many use to identify him – he is first and foremost a person and not his diagnosis. Just like all teenagers, he needs love, guidance, support, affection, and patience; however, because he is also severely autistic, nonverbal and globally delayed, he has many specific and specialized requirements. Developmentally he is a toddler.
Nathaniel’s special requirements include, but are not limited to being nonverbal, a flight risk, not being fully toilet-trained, requiring his bedding washed daily, and requiring a rigid routine. He also has aggressive tendencies such as pinching, grabbing and biting. His parents are unable to take him to the grocery store, playgrounds, doctor appointments without risking him pinching or biting.
While at school, Nathaniel is kept isolated in a different room and always has two educational assistants with him. He does not intermingle with his peers, which is contrary to Policy 322- Inclusion. He gets some basic programming, no life skills, limited ‘academics.’ This will simply increase his at-risk behaviours, as he is never taught any method of socialization while at school.
The closing of ‘life skills’ rooms approximately 10 years ago in New Brunswick was a huge oversight for which Nathaniel is still paying the price today. If the “normal school” system is unable to provide for his necessary accommodations, then a respite care home that focuses on life skills and social interactions such as Eden Park is a necessity, not a privilege.
Outside of school, Nathaniel is unable to spend quality time with his siblings. There is no extended family to help, and he rarely has a support worker as it is quite difficult to find one where Nathaniel is of large stature, not easily redirected, and can be violent.
Eden Park and Tara House are the only respite care facilities with full-time children under their care. There is a long wait list to enter.
Both of Nathaniel’s parents work, and his mother suffers from multiple invisible disabilities (fibromyalgia, trigeminal neuralgia, occipital neuralgia and anxiety). No one within the family, be it the parents, Nathaniel or his siblings have a social life. The pandemic exemplified the many health dangers of being isolated. The lack of respite care guarantees this family will remain socially isolated. What will the long-term costs of this be?
When Nathaniel’s parents were told a respite care home was going to open, they felt relief. They always found it difficult to find someone trustworthy, someone both physically and mentally capable of caring for him. Although they would love to have Nathanial home with them, like all other teenagers, a respite care home would allow them some time to recuperate, to spend quality time with their other children, to clean their home- to just be like all other families.
According to Nathaniel’s mother, Crystal, “In a respite home, the staff are supervised, trained and held accountable.” These are very important qualities sought out by parents of a child with such high needs.
“Proper respite care training alleviates so many of the concerns parents of children with such needs face daily. We knew he would be safe and cared for. And knowing the great needs of so many parents in the Saint John area, we felt very fortunate to be one of the families scheduled to receive assistance. And then a couple weeks ago, the rug was pulled out from under our feet when the Higgs government said that the two previously announced respite care homes would not be opening,” said Bateman.
The Higgs government said that the homes would not be opening because of costs. At the same time, the government is boasting a budget surplus of $135 million in five months.
To the Premier and Finance Minister, how many other families were crushed with the quiet whisper, not even a formal announcement, that the respite homes would not open? Do you even know how many families desperately need this service? We ask that a formal review of the numbers of families requiring respite care occur immediately in New Brunswick, and then, that you explain to each and every family why, as per Mr. Steeves words “they are not worthy” of this investment?
Shelley Petit is the chairperson of the New Brunswick Coalition of Persons with Disabilities.