Parents of teen with autism want to know why the province is telling them to give up custody

The parents of a Nova Scotia teen with autism who has complex care needs want to know why some families are being told by the Department of Community Services to give up custody of their children in order to get them into group homes. 

The option is used in only a handful of cases, but can present a devastating choice for those families.

"That was the shock of our lives that we would have to potentially give up our parental rights to give our child the care that they needed," the teen's mother said. "We adamantly, adamantly want to participate in his care." 

The teen's mother says she doesn't believe the Nova Scotia system has the flexibility to support families who have children with high-care needs while retaining their parental rights. 

The family wants to keep custody of their son, not only because they love him but because they want to continue to be his advocate and be involved in any decision-making while he's in a group home. 

Because he is a child in the care of the province, neither the teen in this story nor his parents can have their identities published by CBC News. 

The boy's parents say they were able to care for him at home until he was 14, but he became aggressive and would sometimes scratch or hit people. 

"There's other family members, pets, people in the household, and they weren't necessarily safe," the teen's mother said. There were times when she said her son would run out of the house and into the street unless he was watched constantly. 

"You're in the kitchen washing dishes, and there's no reasonable way that you can supervise a child that intensely [in order] to keep everybody safe," she said. 

In September 2020, the family made an agreement with the Department of Community Services to place their son in a group home where he could receive specialized care. However, the parents say they made it clear to department staff they were not prepared to sign away their custodial rights.

3 options

According to regulations attached to the province's Child and Family Services Act, families with children who've been diagnosed as having physical or intellectual disabilities that prevent them from living at home may enter into a "special needs agreement" with the department. 

There are three options under the regulations, according to an emailed statement from the Department of Community Services.

"We work with the family throughout this process to determine what type of special needs agreement would be most appropriate," the statement said. "This could mean agreeing to transfer care and custody of the child to the minister, [the family] retaining care and custody of the child while the child is placed in a child-caring program, or receiving supports and services while the child remains home with their family."

The statement said the department's goal is always to ensure children and youth are protected and families are supported. 

"We know children do better if they can stay in a loving home with people they already know, but in some cases, when a child has high-care needs and requires specialized care, a placement may be necessary."

The options presented to the family may depend on whether there's a spot open at a licensed facility and what sort of support the parents can continue to offer a child while they're in care, the statement said. 

The parents of the teen say they feel that provincial staff pressured them to accept the option to give up custody. 

But the family pushed back until department staff eventually agreed to the option to retain custody, the parents told CBC.

The mother says her understanding is that it would be easier for the department to fund the teen's placement if the family turned over custody.

Under the regulations, the period of agreement for transferring the care and custody of a child to the Minister of Community Services cannot be longer than one year, although the agreement can be renewed. 

'It was mortifying'

For a few months after the teen was placed in a group home last September things went well. His parents say he was "thriving" and making friends. But in the last few months the home began to have some challenges getting enough staff to fill all the shifts required to supervise their son, his parents say.

Just before the Easter weekend they were told that the boy would have to return home, but the family says they responded that they weren't able to safely take him home with the support they currently have in place. 

"There's just myself and my husband here. We have another child, and our house isn't a secured facility," his mother said. She said her husband instead volunteered to work at their son's facility to supplement his care. 

The mother says at that point they again felt pressured to give up custody of their son. 

"We were at that point again, where they were telling us that we would have to do that potentially to provide him with support," she said. 

"It was mortifying. Because it's not like we didn't want to [provide support]. We desperately wanted to. We made that abundantly clear." 

The mother says their son was moved twice in the days around the Easter weekend, and they were not told where he was going. 

They spent the weekend making repeated calls and sending emails to find out where their son was. They didn't learn of his whereabouts until the Tuesday following the long weekend, according to the family. 

CBC asked the Department of Community Services for a breakdown on how many special needs agreements have been made in each category and received the following breakdown of current cases: 

• Transfer care and custody to the Minister while placed in a facility: 3.
• Placed in a facility but custody retained by parents: 2.
• Services provided in child's home: 654.

CBC reached another family with a child with high-needs autism who was also presented with the choice of giving up rights to their child to gain a placement in a group home. In that case, they also did not give up custody of their daughter.

Planning for the future

The teen's mother acknowledges her son's care needs are complicated; he needs two employees to supervise him at all times. She and her husband worry if their son does not receive intensive care when he's young, he may not develop skills that could help him live more independently later in life.

"If your child needed to be on a ventilator and have complex medical issues, physical medical care, they would be in a hospital without question, with specialists and support," she said.

"But because it's autism, and it's behavioural, it's viewed very differently."