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Parents With Disabilities: These Moms Live In Fear Of Losing Their Kids

"My kids were fully cared for. There was no danger to them. I did the right thing, but I got screwed."
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Nicole Reid has been battling postpartum anxiety since the birth of her daughter five years ago. The symptoms include panic attacks, heart palpitations, worrying thoughts and insomnia. Her treatment plan includes medication and regular visits to a psychiatrist. Sometimes it takes a few tries to find the right med combinations, but Reid has remained committed to the maintenance of her mental health.

In April 2014, on the third day of starting a new prescription, she began experiencing a depression that left her emotionally and physically unwell. “I was throwing up, sleeping for hours and I’d start crying at the drop of a hat,” she says. “It was scary.”

The stay-at-home mom called her doctor, who told her she was likely experiencing side effects from the new meds. Since he couldn’t fit her in to his schedule immediately to change them, he advised her to go to the emergency room. So Reid and her husband went to their local hospital in Newmarket, Ont., leaving their two children with her brother-in-law.

A hospital crisis worker asked Reid about her medical history and the different kinds of medication she’d taken. She asked the 27-year-old mom about her plan for the care of her children while she dealt with her current situation. Reid told the crisis worker that her husband would care for them, and that she didn’t feel she was a danger to herself or anyone else.

After 10 minutes, the crisis worker ordered Reid to spend 72 hours in the mental health wing of the hospital for further evaluation, and the Children’s Aid Society (CAS) was notified.

"I was distraught," remembers Reid. "I felt like she rushed to judgment. I felt like the depression and anxiety was clearly my fault because usually CAS only comes when there's an issue with the family. But there was no issue."

Reid spent the night at the hospital alone and afraid.

The next day a psychiatrist assessed her, deemed her not to be a threat to her children, changed her medication and Reid was allowed to return home.

When she walked in the door, her husband said CAS had called and would be coming to their home to interview them and their children.

Reid felt horrible. During the first visit, the CAS worker asked if she could speak with her 11-year-old stepson privately. “I wanted to say no,” Reid says, “But the CAS is kind of like the police. What am I going to say?”

Her stepson later told her the CAS worker asked him what Mommy does when she’s sad, whether Reid spent a lot of her time sleeping, if he was happy and if he wanted anything to change.

The worker also asked Reid to sign paperwork allowing CAS to speak with her psychiatrist. “I signed it because I was scared,” says Reid. “I didn’t know my rights.”

Three weeks later, the worker came back to do a follow-up interview. A month after that, Reid received a letter in the mail informing her that the investigation and case had been closed.

Reid isn’t alone in her experience. Disability advocates say mothers with mental and physical disabilities face greater scrutiny and are at higher risk of losing custody of their children than able-bodied mothers. And that possibility instills tremendous fear.

Fighting Stereotypes

Historically, society has been worried about people with disabilities becoming parents. Up until the 1970s, Alberta and B.C. had Sexual Sterilization Acts, under which the provincial governments had the power to force sterilization on targeted groups of people, including those with disabilities.

Even today, disabled mothers are often told that having children will “worsen their conditions, that their disabilities will be passed on to their children, and that they won’t be competent mothers,” says Bonnie Brayton, the executive director of Disabled Women’s Network of Canada (DAWN).

“When I was pregnant, I got a really strong message from my doctor and gynecologist that they didn’t think I should have another child,” recalls Brayton, who has post-polio syndrome.

“In reality, I could have. There was a lot of anxiety that they projected on me that I don’t know in retrospect was appropriate. I terminated the pregnancy.”

When they do have children, “the majority of parents with disabilities have a fear of their children being apprehended, because you know you are being watched -- right, wrong or otherwise,” says Melanie Moore, who works with disabled parents at Toronto’s Centre for Independent Living. “Because you have a disability, you are at a greater risk of having CAS called.”

Moore is visually impaired and has a son. When he accidentally burned his hand on the stove (not an uncommon occurrence among kids), she rehearsed what she would say to the doctors and nurses in the taxi on the way to the hospital. She wanted to avoid a potential CAS investigation.

“The attitudinal barriers come from the larger community that think people with disabilities can’t parent,” says Moore. “We can.”

Parenting just looks a little different for those with disabilities. While Moore gets her son ready for school just like everyone else, “the aids that I may use to travel while taking him to school or daycare include: a guide dog or a cane,” she explains. “For myself, in preparing for work, I use a colour detector, which says what colour my clothes are. Some parents however, may need more supports if they have multiple disabilities.”

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Parenting With Disabilities

Rate Of Removal

The federal government doesn’t have a “single, official definition of disability,” but DAWN says a disability includes “mobility, sensory and intellectual or mental impairments, as well as chronic illness, mental health challenges or physical differences that limit functioning.”

According to Statistics Canada, approximately one million Canadians are parents living with mental or physical disabilities, and more than half are moms.

A 2012 report released by the National Council on Disability in the U.S. found that "removal rates" for parents with a psychiatric or intellectual disability were as high as 80 per cent, and parents who are deaf or blind report very high rates of child removal or loss of parenting rights.

"If you find those numbers astounding, I would suggest it's higher in Canada," Moore says.

One of the only Canadian reports on the subject was released last fall. It documented the experiences of 25 moms with disabilities, and was published by the West Coast Women's Legal Education and Action Fund (LEAF).

The report concluded that mothers with a mental health diagnosis in Canada were three times more likely to have been involved with child protection services than mothers without a diagnosis.

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LEAF launched its investigation following the 2012 case of Maricyl Palisoc and Charles Wilton, an Ontario couple with cerebral palsy. Late in Palisoc’s pregnancy, CAS threatened to remove their baby unless they provided 24-hour care by an "able-bodied attendant."

Cerebral palsy affects motor skills and speech and CAS workers were concerned over how the parents would physically care for their baby. Friends stepped in to help pay the cost of a full-time caregiver and their son, William, was allowed to stay.

A year later, in 2013, the Toronto Star followed up with the family in their home in an assisted-living facility. They have personal care workers on site around the clock and the couple is able to deal with much of William’s needs on their own.

“We both will help…William deal with whatever comes along as a family,” Palisoc told The Star. “We are not worried.”

The Power Of Fear

Although support services like the ones used by Palisoc and Wilton can help provide relief, the fear of scrutiny can prevent moms with disabilities from accessing the help they need.

“This happens to a lot of disabled mothers,” says Jewelles Smith, a project co-ordinator for DAWN who is based in B.C. “Even if they are struggling, they are afraid to ask for help, because you’re seen as a bad parent failing to meet all the needs of your children and it must be because of your disability.”

Smith, who is now collecting stories of moms with disabilities for her PhD, has post-traumatic stress disorder and spina bifida. When she was working on her master’s degree, stress caused her physical symptoms to flare up, and she was worried about what might happen if she reached out for help. Her sons were eight and 10 at the time.

“When the ministry becomes involved in any way, that's when a high loss of custody occurs. And regaining custody is almost impossible if you are a disabled mother in Canada," she says.

Risk Of Custody Loss

Toronto child protection lawyer Tammy Law is currently helping a client fight for custody of her seven-month-old baby. CAS apprehended the baby minutes after she was born in a Toronto hospital last fall.

Law's client can't read as a result of a severe cognitive disability. The court decided that places the baby in danger, so Law is working to get CAS and the courts to understand that despite her client’s disability, she is capable of parental care.

“We are getting her in touch with the appropriate support workers, getting the appropriate resources,” says Law, who wonders why CAS didn’t help with this before the baby was born.

Caroline Newton, communications director at the Ontario Association of Children’s Aid Societies, says all parents are asked the same questions during an investigation — regardless of whether they have a disability or not.

“About 90 per cent of the work we do with families and kids involve the child staying in the home. So it could be that as the system or the Children’s Aid Society works through that, they may have questions. They want to connect the mom or dad with local community resources, which might be able to support them in their parenting.

“But, in essence, it’s the same process that we use for all families. It’s based on parental capacity and there is this specific process that is in the eligibility spectrum. We don’t see it as a category of concern.”

Support And Solutions

Advocates disagree. Child protection workers and front-line health care staff must be better educated on how disabilities affect parenting, according to the LEAF report, and the government needs to provide better support services to make sure children can remain with parents with disabilities when its in the best interest of the child.

“Social workers across Canada are not really trained to understand what disabled mothering looks like,” says Smith. “They may not have experienced disability at all.”

Smith believes lawyers and judges also need to be educated on disabled parenting. "Those sorts of people in official positions need a reality check,” she says.

Bonnie Brayton, who heads DAWN, suggests improving support in the early stages as well. “Mothers with disabilities have unique parenting needs, including adapted cribs and change tables for mothers with physical limitations and flashing baby monitors for mothers with hearing impairments,” she says.

Research has shown adaptive baby equipment helps parent-child interaction, but Brayton says it’s not currently funded by the Canadian government. And accessing funded assistance is a separate hurdle. Personal care attendants are barred from helping disabled parents with their childcare tasks, so parents in need must apply for these services separately.

“Instead of a system supporting the most vulnerable mother who needs the additional support, she’s instead being made to constantly try to prove she can be a mother,” says Brayton.

Reid thought she was being a responsible parent by going to the emergency room. Six months after she filed a complaint with the hospital that called CAS, she received an apology. "The hospital would not issue anything in writing, which was frustrating," says Reid. "All I got was: 'I'm sorry this happened, but that's our job.'"

"All I wanted was a fix to my meds. My kids were fully cared for. There was no danger to them. I did the right thing, but I got screwed."

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