Parents with disabilities fight to keep their kids

Despite all the rights Americans with disabilities have gained in the last 25 years, the right to parent remains elusive

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. 

Fit to parent

Alice Goltz doesn't believe her mild cognitive disability and the tremors in her arms when under stress should disqualify her from taking care of her child.
Courtesy of Alice Goltz

To determine if Goltz was fit to parent, DCF called in their resident expert, Susan Yuan. Then a psychologist and parenting skills assessor at the University of Vermont’s Center on Disability and Community Inclusion, Yuan is one of just a handful of people in the country trained specifically to work with parents with disabilities. She was tasked with judging whether Goltz was up to the demands of single parenthood.  

Yuan conducted two assessments with positive results. With the husband and family out of the picture, she says Goltz needed further training, but could learn to parent the child alone.

“I definitely believe she's fit to be a parent. I still believe she's fit to be a parent,” Yuan told America Tonight. “I believe that she needed to build both her skills and her confidence....But you figure out how to teach them.”

Yuan calls Goltz stubborn and says she may seem outwardly difficult. But she noticed that Goltz was a fierce self-advocate and already had the drive to better herself.

“I've never met a parent who's more dedicated to her child than Alice,” said Yuan. 

People with intellectual disabilities are encouraged to have real lives and to have real relationships. There are going to be babies, so what we need to do is to build capacity around the country.

Susan Yuan


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.

Vermont's Agency of Human Services, which houses the Department for Children and Families.
America Tonight

The assessor, who lacked specialized training, asked Goltz to walk up a metal staircase while carrying her baby. The action triggered the tremors in her arms, resulting in negative marks.

“That assessment was really set up to try to show where her weaknesses were,” Yuan said.

All the same time, Yuan had been pushing to get Goltz into a highly selective program in Massachusetts, where residents live on their own with their children, receive constant workshops and parenting training, and have a supportive community and staff on call 24 hours a day. Yuan called this the perfect situation for someone like Goltz. But by the time Goltz had secured a place, Yuan says it was too late. 

Shortly after the final assessment, DCF took Goltz’s daughter into state custody and moved to terminate her parental rights. Goltz fought them for two years, all the way up to the Vermont Supreme Court. Each time, the courts sided with DCF, stating that they were acting in the best interest of the child.

“This is like being a prisoner,” Goltz said. “The only thing I don't have [is] handcuffs on me.”

Sheila Duranleau, the policy and operations manager at Vermont’s DCF, says these decisions aren't about a bias.

“The fact that a parent has a disability does not in itself result in us taking custody," she explained. "The question is, does the disability impact the parent's ability to safely parent?”

Duranleau says the answer isn’t always easy. Since parents with disabilities can only be meaningfully helped through individualized care, she acknowledged that money also plays a role.

“The resource issue is very real,” she said. “We have had for a long time individual supports and systems to support parents with disabilities, but they've come and gone, depending on the funding.” 

Alice Goltz fought for the right to keep her child for two years, all the way up to the Vermont Supreme Court.
Courtesy of Alice Goltz

In Vermont, each social worker handles an average workload of at least 17 families, often with multiple children. Duranleau says all of the social workers in her department are dedicated to doing the best they can for the children and families that they serve. But in an overworked system, the goal is always to keep children safe at all costs, which can mean erring on the side of caution.

“People are in crisis," Duranleau said. "Children are being abused and hurt, and nobody likes to see that and they have a lot of cases. It's very easy to feel overwhelmed with the work that they do."

Advocates for disability rights say the solution isn't to break up families and send children into the system. They say more support is the answer, so that the parents can be the parents they want to be. They also argue that the issue is becoming more urgent, as many Americans with disabilities are empowered to live more independent lives. 

As the president of the nonprofit Association for Successful Parenting, Yuan recently coordinated with the Vermont DCF to apply for a $500,000 federal grant that would enable them to develop a comprehensive system of supports for parents with disabilities. If funded, it could be a pioneering model for parents with disabilities all over the country.

“People with intellectual disabilities are encouraged to have real lives and to have real relationships,” Yuan said. “There are going to be babies, so what we need to do is to build capacity around the country.” 

Blind bias

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. 

It's an innate thing to fight for your kid.

Jessie Lorenz

executive director of ILRCSF

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.

Alice Goltz, the last time she saw her daughter.
Courtesy of Alice Goltz

“Parents with disabilities deserve an equal shake in this system,” she said. “And the Americans with Disabilities Act does apply to the court system. Ignorance of the law is not an excuse for ignoring the law.”

At the end of another busy afternoon at Union Elementary, Goltz walked back to her apartment and sat down in a living room plastered in photos of her baby girl. She pulls out a large stack of photo albums: Goltz with her baby at one month, two months, three months old. After the first two years, the pictures stop.

In 2010, Goltz’s daughter was adopted by her foster family. Her little girl is 8 years old now, and Goltz understands it’s likely too late to get her back. She points to a photo on the wall behind her that was taken the last time she saw her child, one year ago, by chance on a city street.

“When they said, 'This is Mommy Alice … there was a bond, like she was hugging me, she wasn’t letting me go,” Goltz said. “I was happy because even though they weren’t going to give me a visit, that God was going to make sure I have a visit.” 

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