Parents with disabilities fight to keep their kids

MONTPELIER, Vermont – At 2:20 p.m., Alice Goltz put on her uniform and made her way to the corner of Union Elementary School to start her shift as a crossing guard. Every afternoon, she watches the parents pull up their cars in line like clockwork. And every afternoon, she looks at the children she helps cross the street and thinks of the daughter she lost.

“I didn’t give up my child,” Goltz said. “She was stolen from me.”

In 2007, Goltz gave birth to a baby girl. But before she left the hospital, she says two men from the Vermont Department of Children and Families walked into her room. A hospital nurse had tipped them off, she says. The men told Goltz that because of her disability, she couldn’t go home with the baby alone. 

The 44-year-old has Fragile X Syndrome, a condition that results in a mild cognitive disability. She also has tremors in her arms when she’s under stress, a disorder called Dystonia. But Goltz insists that neither should disqualify her from taking care of her child.

“I feel like my rights were violated as a parent with a disability,” she said. “You may learn differently than I do…It may take me longer, I may have to do things differently than you do as a parent, but no parent should have to lose their child.”

Despite the number of rights people with disabilities have gained in the 25 years since Congress passed the Americans with Disabilities Act, a very basic one remains elusive: the right to be a parent. According to the National Council on Disability, there are more than 4 million parents living with disabilities, and up to a staggering 80 percent of those with intellectual or developmental disabilities have their children removed from their homes. In 37 states, a disability can be used as an automatic strike against parents seeking custody – without any assessment to determine whether that disability impacts their ability to be a good mother or father. 

The Vermont DCF disagreed. They tried to work with Goltz for a year, but none of the social workers were specifically trained in working with those with intellectual disabilities. The agency called for a final assessment of Goltz’s parenting – this time without Susan Yuan.

Jessie Lorenz calls her own battle through the court system one of the most demoralizing experiences of her life.

“I felt like all of the accomplishments that I've made getting through school, buying a house, running an agency, having a baby, they had no value," she said. "I felt like I was seen for being just a blind person who needed help.”

For two years, Lorenz fought a custody battle in a divorce lawsuit to keep her daughter, Jean. The San Francisco mother was born blind and says the system just wasn't equipped to value parents with disabilities. Parents who are deaf or blind have reported extremely high rates of child removal and loss of parental rights, according to the National Council on Disability.

“Sometimes when you think, ‘blind parent,’ people automatically think, 'Oh, how are you going to keep that child safe? What if she runs into traffic? What if she picks up a rock and swallows it?'" she said. "And they're basing their attitudes on their own misconception about what blindness is.”

Lorenz had to prove to the courts that Jean would be safe. She hired a professional to evaluate the safety of her home. She used an occupational therapist to analyze her adaptive parenting techniques. She fitted her home with 16 security cameras that friends or family could tap into if needed. In the end, the fight to keep her child cost her $33,000. She had to throw an occasional “Let’s raise money for Jessie’s attorney” party, but says every bit of it was worth it.

“You know if you ever wonder what motivates somebody in these types of situations, it's pretty easy. It's your kid, it's an innate thing to fight for your kid,” Lorenz said. “It's in my DNA to raise that kid....I'm going to see it through.”

The Americans with Disabilities Act is proving to be on the side of mothers like Lorenz. Earlier this year, the Department of Justice accused the Massachusetts DCF of making discriminatory assumptions about a mother with a mild intellectual disability, and failing to reasonably modify its policies and procedures to accommodate her – in violation of the wide-ranging civil rights act. It was the first time the federal government had applied the 25-year-old law to a parenting case. 

In a landmark ruling in March, the Massachusetts court granted the mother custody of her child two years after she was taken by the state.

“The Department of Justice finally stepping in and ensuring the rights of both the parent and the child are protected I think is monumental,” says Lorenz, executive director of the Independent Living Resource Center in San Francisco. “I hope that it will make other states and court systems think twice about their own stereotypes and negative assertions about parents with disabilities, because they're wrong, they're inaccurate and they harm families.”

At 8 a.m. in the Lorenz household, the skills of an adaptive parent are on full display.  Lorenz fixes her daughter breakfast with the help of a talking microwave. They read a picture book together with a braille overlay. And by 9 a.m., they’re off to school. Jean climbs onto Lorenz’s back while their guide dog leads the way. A morning filled with healthy doses of oatmeal, hugs, and chaos – all very normal when raising a 4-year-old girl.

“The daughter that you saw today, the wild child....She's growing up in a world where disability is seen as a limitation,” Lorenz said. “But I'm raising her in a community where disability doesn't matter.”

Lorenz was able to prove her own skill to the court and won full custody of her daughter in 2013. It’s a victory she credits to her knowledge of her rights and access to the necessary resources. For those who are less connected, Lorenz says it can be a fight that never ends.