As a tearful father recounts his latest trip to Surrey Memorial Hospital to get help for his autistic son, his voice breaks.
He apologizes.
“I’m afraid tomorrow he’s going to have a blood clot in his brain. He’s got bruises… What am I going to do here?” says an overwhelmed Bimal Chand (pictured with Akash).
“I don’t want that phone to ring and say that something’s gone wrong, and he’s not going to live. I live for my son. I’ve fought for my son his whole life.”
Bimal’s 18-year old son Akash was diagnosed with autism at age five and displays “self-injurious behaviour.” This has increased in frequency and intensity in the last six months, says his father.
Akash repeatedly hits himself in the head, causing extensive bruising as well as cuts, his father explains.
During a 10-minute visit to the Now’s newsroom, Akash hit himself at least a dozen times.
Bimal says he feels helpless, unable to obtain resources to help his son. But it doesn’t appear to be from lack of trying.
Bimal takes his son to hospital regularly. Three times in the last month, he says.
But his son has repeatedly been sent home, he explains, and the family is told, “there is nothing we can do,” only for Akash to hurt himself again a short time later.
The latest hospital visit was on Feb. 22, Bimal says, where they saw a psychologist and there was discussion about “possible bipolar, possible schizophrenic,” but no diagnosis made.
Akash also received a brain scan during that visit, to ensure no damage has been caused through his self-abuse, he added.
Akash was kept overnight and released the next day, he said.
“How can he be released?” questioned his father. “He’s going to go home and he’s going to beat himself up again. We’re going to bring him back again. We’re going through this over and over.”
(Akash, pictured, after a recent self-abuse incident. Photo submitted)
Though Bimal says Akash has a social worker through the Ministry of Family and Child Development, he says he has been unable to obtain necessary resources for his son. He says he approached the ministry yet again after the latest hospital release.
“I said my son is going home now, we need some help at home, as soon as we can get it. (They said), ‘I’m sorry Mr. Chand, we can’t do anything about this.’… Something’s triggered him, something’s happened, the last six months we’ve been talking to the ministry, having our meetings, and it’s just meetings. No actions… He’s beating himself up at home. We need some help here. I don’t know where to go.”
To top all of that off, Bimal has an 11-year old son – who also has autism – watching this go on.
The two boys go between their mother Savita’s Surrey home and Bimal’s home in Burnaby, after a separation.
“My son cries to me…” Bimal said breaking down to tears again, and pausing.
In 2013, Akash’s school, L.A. Matheson Secondary, requested extra resources for him after the boy began “demonstrating a significant increase in self-injurous behaviour (hitting head and face with his hand)” according to the application to Fraser Health.
The teacher writes, “We have tried to figure out why Akash is doing this (dental pain, sinus discomfort, over-stimulation, under-stimulation) but we have been unable to ascertain one reason and how to support him.”
A Psychoeducational Assessment, dated January 2016, notes Akash’s “head-hitting history has ranged in severity (full fist to his face sometimes caused bruising) and frequency, from 200 times per day to approximately 30 to 40 times a day” and that it is “particularly worrisome that his difficulties expressing his needs and some of his anxious reactions could endanger his health and safety.”
It was also stated in this assessment that his parents “are looking for available community resources to assist in reducing their son’s self-injurous behaviours and worrisome mood swings.”
This isn’t the first time the Chand family has taken their story to the press.
In 2001, Bimal was part of a Vancouver Sun story featuring parents of children with disabilities who said their children were being discriminated against because they couldn’t attend preschools and daycare centres without the extra support they needed in those environments.
The government had promised funding increases, as more than 500 children awaited the “Supported Childcare” money, according to the news story.
Two-year-old Akash, described as nonverbal and hyperactive in the article, could not take part in traditional daycare settings, and instead required a one-to-one aide.
Bimal told the newspaper he couldn’t afford to pay for the aide, and was home for three months caring for his child.
“I want to get back to work,” he said in 2011. “The ministry called me up and said we have a foster home for my son. I don’t want him to go to a foster home. He’s very well-loved here. I have a day-care setting that has a spot. They just need supported child-care funding for a one-to-one aide.”
Bimal said that effort was successful, and after the news story, he received the funding he so desperately sought.
But now, he may be looking at a break from work again, with few alternatives left.
“For the past two weeks I’ve been emailing the premier’s office, ministry offices, and I’ve gotten no response from anybody. The only response I got was from you guys,” he told the Now.
“It’s sad what people have to do. I hope this helps out other families,” Bimal said of sharing his family’s story.
“This is not only about my son anymore.”
(Akash during a recent visit to the Now newsroom.)
The Now connected Bimal to Faith Bodnar, executive director of Inclusion BC, to see if she could determine why this family has seemingly been left out in the cold. Bodnar met with Bimal and said the situation is “horrific.”
“For this family to be in such dire crisis and so completely distressed about their son is indicative that transition planning has been woefully inadequate, if it happened at all,” she told the Now.
“Families just don’t arrive in crisis when their children are 18. It takes years of needs not being met to be in this position. This isn’t even about falling through the cracks, this family has advocated well and they have hit brick wall, after brick wall. It is shameful and completely unnecessary and the cost to this family and this young man is extremely high, never mind the added costs of crisis intervention, which is always much greater than if we responded to families in a timely and respectful manner.”
Inclusion BC is an organization that, since 1995, has fought for the rights of people with developmental disabilities and their families.
Given the complexity of Akash’s needs, Bodnar says transition planning should have started four to five years ago.
“There needed to have been much better ongoing support for the family, which they didn’t have,” she added.
Bodnar explained the Ministry of Child and Family Development (MCFD) should connect with Community Living British Columbia during youth to adult transition, well before someone turns 19. She said Akash was also connected to Services to Adults with Developmental Disabilities, a Ministry of Social Development and Social Innovation program that identifies transitioning youth with complex needs that cross a few ministries.
Bodnar said there are a number of local organizations that could help this family and she’s surprised they haven’t been connected to them.
“Families deal with what they are told,” she said.
“To expect them to navigate government systems and also deal with the crises caused by the neglect in these systems is just too much.”
Bodnar said she wonders “how this young man’s recent behaviours are related to the lack of appropriate supports he and his family have received. Even with challenging behaviour, there is tremendous expertise in the community. What is needed is the will of our government to fund access to this expertise.”
This family’s story points to a larger problem, Bodnar stressed.
“It’s a crisis driven system because of the decision of our government not to adequately fund programs and services for families and adults with developmental disabilities,” she said. “We absolutely know the need. It’s simply a decision not to support families who have children with developmental disabilities. This becomes most acute at times of transition. It’s no wonder families lose hope.
“My worry is the people we never even hear about.”
In an emailed response, an MCFD spokesperson declined to discuss Akash’s case, citing privacy law, but said: “In circumstances like this the ministry would look to extend services like autism funding, respite help for the parents, and one-to-one assistance…. Further, children and youth with complex challenges often require that we work with a range of service and health care providers. To that end we would look to connect the family with doctors, hospitals or specialists to seek appropriate assessments and medical assistance where needed, and to develop strategies for treatment.”
Fraser Health spokeswoman Tasleem Juma told the Now, “There is a process to ensure the smooth transition of services from youth to adult supports” and that it can occur “between the ages of 17 and 21 years.”
