Millions of Americans with disabilities have gained innumerable rights and opportunities since Congress passed landmark legislation on their behalf in 1990. And yet advocates say barriers and bias still abound when it comes to one basic human right: to be a parent.
A Kansas City, Mo., couple had their daughter taken into custody by the state two days after her birth because both parents were blind. A Chicago mother, because she is quadriplegic, endured an 18-month legal battle to keep custody of her young son. A California woman paid an advance fee to an adoption agency, then was told she might be unfit to adopt because she has cerebral palsy.
Such cases are found nationwide, according to a new report by the National Council on Disability, an independent federal agency. The 445-page document is viewed by the disability-rights community as by far the most comprehensive ever on the topic — simultaneously an encyclopedic accounting of the status quo and an emotional plea for change.
"Parents with disabilities continue to be the only distinct community that has to fight to retain — and sometimes gain — custody of their own children," said autism-rights activist Ari Ne'eman, a member of the council. "The need to correct this unfair bias could not be more urgent or clear."
The U.S. legal system is not adequately protecting the rights of parents with disabilities, the report says, citing child welfare laws in most states allowing courts to determine that a parent is unfit on the basis of a disability. Terminating parental rights on such grounds "clearly violates" the intent of the 1990 Americans with Disabilities Act, the report contends.
Child-welfare experts, responding to the report, said they shared its goals of expanding supports for disabled parents and striving to keep their families together. But they said removals of children from their parents — notably in cases of significant intellectual disabilities — are sometimes necessary even if wrenching.
"At the end of the day, the child's interest in having permanence and stability has to be the priority over the interests of their parents," said Judith Schagrin, a veteran child-welfare administrator in Maryland.
In the bulk of difficult cases, ensuring vital support for disabled parents may be all that's needed to eliminate risks or lessen problems, many advocates say.
The new report, titled "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children," estimates that 6.1 million U.S. children have disabled parents. It says these parents are more at risk than other parents of losing custody of their children, including removal rates as high as 80 percent for parents with psychiatric or intellectual disabilities.
Parents with all types of disabilities — physical or mental — are more likely to lose custody of their children after divorce, have more difficulty accessing assisted-reproductive treatments to bear children, and face significant barriers to adopting children, the report says.
A Windsor, Colo., woman with disabilities says the prejudice she encountered prompted her to go to law school, to better defend her own rights and those of other disabled parents.
Carrie Ann Lucas uses a power wheelchair and is reliant on a ventilator due to a form of muscular dystrophy. She is a single mother of four adopted children, ages 22, 17, 13 and 11, all of whom also have disabilities, including two who use wheelchairs and three with intellectual disabilities.
Lucas says she's been the subject of several investigations by child welfare officials that she attributed to bias linked to her disabilities.
"Each one of these referrals that gets accepted for investigation causes a great deal of stress, not only for me, but for my children," Lucas wrote in an email.
She said the investigations dated back to her first efforts to adopt Heather, her biological niece, in 1999, after the girl was placed in foster care. At one point in a long procedural struggle, a social worker told a judge that "there was no way that handicapped woman could care for that handicapped child."
"We are nearly 13 years later, and Heather is still doing very well," Lucas wrote.
As a lawyer, Lucas has represented many other parents with disabilities.
The lead author of the new report, disability-rights lawyer Robyn Powell, says her goal was to challenge presumptions that disabled people can't be effective parents.
"Of course there are going to be some parents with disabilities who would be lousy parents — that's the same with parents without disabilities," she said. "If there is neglect, is it due to the disability? And can it be rectified by providing the necessary support?"
Ella Callow, a lawyer with the National Center for Parents with Disabilities and their Families, said the report raises fundamental questions about America's social priorities — given that state and federal laws value both the well-being of children and the rights of disabled people.
"If we really believe that families are the key unit on which society is built, then we have to enable these families to be healthy and functioning, even at public expense," Callow said. "We know foster care isn't a good place for children to be — they do better with their own parents, at their own home."