When the child welfare system enters your life, there are already so many assumptions that you don’t have strengths as a parent. When you’re also disabled, often your limits are all anybody seems to see.

A report released 18 months ago by the National Council on Disability, “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children,” said that too often the child welfare system bases it judgments on prejudice, not on a disabled person’s true ability to parent. As a result, the removal rates of parents with disabilities who are investigated by child protective services are shockingly high, including 70-80% for parents with psychiatric disabilities and between 40-80% for parents with intellectual disabilities.

Here, Robyn Powell, attorney advisor to the National Council on Disability (NCD), discusses how bias affects parents with disabilities, how parents can fight bias, and the impact of the report.

Q: How does bias impact parents with disabilities when they come to the attention of the child welfare system?

A: To understand it, you really need to look back at the first half of the 20th century, when laws were passed in 30 states legalizing involuntary sterilization, or forced abortion, for people with disabilities. These laws were based on the belief that people with disabilities should not produce offspring, and that their children would be burdensome to society.

Today, there’s still this belief that people with disabilities cannot raise children and should not be having children. Despite the passage of the 1990 Americans with Disabilities Act, which prohibits discrimination against people with disabilities, we have child welfare laws in two-thirds of the states that say parents can have their rights terminated simply because they have a disability.

Part of the problem is lack of knowledge. We’ve heard repeatedly from people who work in child welfare that they don’t receive any training on disabilities. People making the decisions come in with their own perceptions, and those perceptions are often enough to decide that parents with disabilities can’t take care of their children.

For people with a physical disability, there’s often an assumption that these parents can’t take care of themselves independently, so how could they take care of child? People in child welfare don’t know about adaptive parenting equipment—equipment that allows parents with a physical disability to do things they might otherwise be unable to do, like pick a child up. They don’t know that a parent may be able to use a personal assistant or have people around them to do certain physical aspects of childcare. They often believe parents have to be able to do everything independently in order to be competent parents.

There is even more bias when it comes to parents with psychiatric disabilities.

Moreover, when we look at the assessments done with people with psychiatric disabilities, they are usually very one-size-fits-all, done in quick meetings with parents in the courthouse. But when parents have a psychiatric disability, their issues can be exacerbated just by being in court. Feeling angry, overwhelmed, worried and sad about their child’s removal can lead parents to be given inaccurate diagnoses. All this makes it more likely that these parents lose custody of their children.

When it comes to parents with intellectual disabilities, we hear countless stories of parents who had their child removed right after birth, or when the child entered school, primarily because they had an intellectual disability. There are also stories of parents with an intellectual disability who lost their child after they proactively asked for support, because the child welfare system assumed that meant they weren’t capable of parenting.

People with intellectual disabilities may need individualized trainings to address specific deficiencies, such as if a parent can’t cook, or has trouble keeping up with the child’s hygiene, or if money management is a challenge. Children of intellectually disabled parents often benefit from early childhood intervention services.

Still, there has been quite a bit of research that shows that outcomes for children raised by parents with intellectual disabilities are as good as for children raised by parents without intellectual disabilities. One study done in Denmark of 20 young adults found that despite some difficult childhood circumstances, including being bullied by their peers because of their mother’s disability, all the children found underlying strengths, and all but one maintained a close a relationship with their mother. Too often, the assessments of parents with intellectual disabilities are based on IQ, when there is plenty of research that shows that IQ is not an indicator of a person’s ability to parent.

Q: You had so many heartbreaking stories in your report. Can you share one that illustrates the kind of bias parents with disabilities face?

A: In researching our report we talked to a woman named Jean. She was a young mother with an intellectual disability living in a supportive living program in Florida with her 5-year-old daughter. On the basis of Jean’s disability, she had been assigned a social worker and had had an open child welfare case since her daughter was born. Jean received parent-child intervention services and things were going pretty well.

But when her daughter started kindergarten, people began to ask how she could promote her child’s well-being as her daughter advanced in school. They assessed Jean with IQ testing, interviewing and very limited observation, and they concluded that by middle school, Jean would be unable to help her daughter with homework, and that she might have trouble retaining any parental authority over her daughter.

Social workers decided to establish a relationship with the girl’s father, even though the girl had not had a relationship with him her whole life. The goal was to eventually switch custody to the father.

After a number of visits, however, Jean told the social workers she didn’t want her daughter visiting any longer. She said her daughter was scared to go, had become fearful of sleeping, and was wetting herself after being potty trained for years.

The social workers continued to insist that the daughter spend time with her father, until finally, after one visit, Jean observed evidence of sexual abuse. She contacted the police and the social workers, and eventually the father was sent to jail for the abuse.

Afterward, Jean’s attorney was able to have the case closed. But Jean was so scared that she fled the area with her daughter and no one has heard from her since. This is just one story that really shows how detrimental it can be when child welfare assumes that a parent is unfit because she has a disability.

Q: What advice do you have for parents with disabilities that have been affected by the child welfare system?

A: I would encourage parents to get their own evaluations by someone who has expertise in what a person with a disability really needs to parent effectively. Through the Looking Glass is a national organization that can help you find advocates or evaluators in your area who are skilled at working with people with disabilities.

A lot of times, parents are resistant to being labelled “disabled” because there is such bias out there. That’s understandable, because we know a parent’s disability is sometimes used against them.

At the same time, it’s important for parents to know that having a disability can also help your case. You and your lawyer can raise the Americans with Disabilities Act. You can say you would like a new assessment because you weren’t provided with appropriate accommodations, or you can say you are not being given the proper supports to help you parent given your disability.

I also encourage parents to get involved with local organizations working to support parents with disabilities to change the child welfare system. That advocacy can make a difference. Idaho, Kansas, and Missouri have really good laws that say that a person’s disabilities cannot be used to discriminate against them in child welfare cases. Moreover, since the release of our report in 2012—and because of parent advocacy— Oregon and Tennessee changed their laws relating to parents with disabilities and Massachusetts and Washington have similar bills pending in their legislatures. All the states that have changed their laws regarding parents with disabilities did so due to parent advocacy. But there is a lot that we are still fighting for.

For instance, a lot of people with a physical disability use a personal assistance service to complete every day activities. But most government-funded personal assistant services will not cover assistance with parenting. We are working to change that. We believe that if the definition of appropriate services included parenting services that would really broaden the ability of parents with disabilities to take care of their children.

We also believe all courts should be in compliance with the American Psychological Association’s guidelines when it comes to assessments. Assessments should be based on observations of parents in their homes and communities. We also think the courts should prohibit use of speculation—such as the assumption that all parents with a certain disability can’t parent their children. We would like courts to look at the actual person and how he or she is parenting, as well as what supports could be put in place to help that person parent better.

My last piece of advice for parents with disabilities is to try to connect with other parents with disabilities. All the research shows how important this is in supporting people with disabilities to parent successfully.