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 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 removal of children from their parents are sometimes necessary.
In Arlington Heights, Jenn Thomas, a 36-year-old mom who has cerebral palsy, says her 8-year-old twins occasionally complain about having to do a few extra chores around the house to help her. Her daughter, Abigail, nods and smiles upon hearing this, but says for the most part, their lives are “kind of normal.”
Sometimes, they ride on the chair with her – especially son, Noah, because he, like his father, D.J., is a “little person,” the term used by the family and others for someone genetically predisposed to having unusually short stature.
“I want them to enjoy activities and not be limited because I am limited,” she said.
So she coordinates with neighbors to help get the kids to swimming, cello lessons or basketball practice. Or she arranges for “paratransit,” a bus service for riders with disabilities and their families.
Friends also helped redesign their kitchen to make it more accessible.
The new report stresses that improved networks of support for disabled parents – encompassing transportation, housing, health care, and outside intervention when appropriate – should be welcomed, and not viewed as evidence that the parents on their own are incapable.
When children do face removal from their disabled parents, those parents may encounter barriers to meaningful participation in their legal cases, the report says. For example, financially struggling parents may have to rely on a court-appointed attorney with no special knowledge about the effects of disability.
Kaney O’Neill of Des Plaines, Ill., a quadriplegic Navy veteran, endured an 18-month legal battle to keep custody of her young son. Her ex-boyfriend filed for custody in 2009, when the boy was 10 weeks old, alleging that O’Neill was “not a fit and proper person” to care for the child because of her disability.
Refuting the allegation, with legal help from Ella Callow, Kaney demonstrated how she had prepared for motherhood by working with an occupational therapy program, adapting her house, securing specialized baby-care equipment, and using personal assistants to help her as needed.
“I lived in fear every single day that my son would be taken away from me,” said O’Neill, 36. “In a lot of ways it made me a better mother because I felt that I had a lot to prove.”
She says her son, who taught himself to climb up his mother’s wheel chair into her lap, is now going to preschool twice a week and is thriving.
“If you are a parent with a disability, you don’t have a role model – you have to figure out how you’re going to be a mother and overcome challenges,” she said.
For disabled women who either cannot bear children or choose not to, the possible option of adoption often can be complicated. Some foreign countries, notably China, rule out disabled people as potential adoptive parents.
Elizabeth Pazdral of Davis, Calif., who wears a brace and uses crutches to walk because of cerebral palsy, said she encountered discrimination several years ago when she and her husband sought to adopt a child. She said one local adoption agency billed her an advance fee of $3,400, then advised that there were “serious reservations” about her ability to be a parent.
“I think it was dishonest to take my money and then tell me they were worried,” said the 4-foot-tall Pazdral, 42, who is executive director of the California State Independent Living Council.
Initially distraught, Pazdral obtained legal help, paid for an occupational therapist to come to her house to assess her capabilities, and researched how other parents with disabilities had succeeded in raising children. The efforts paid off: The adoption agency dropped its objections, and in May 2008, Pazdral and her husband, a Stanford University physicist, adopted a baby girl named Madeleine.
“It was a huge life change – but that’s true for any new parent,” Pazdral said, recounting sleep-deprived nights, higher levels of chronic pain, and the challenge of maintaining one’s energy level.
“But I start with the joy I get from being her mother – the rightness I feel,” Pazdral said. “It’s the best thing I have ever done with my life.”