Sunday, March 25, 2007

Parents with disabilities face discrimination; fear losing children

An able ally for parents
Riccardi, Nicholas. Los Angeles Times, March 12, 2007.

DENVER -- Carrie Ann Lucas is confined to a wheelchair. She breathes with the aid of a ventilator. She cannot hear and can see only at close range.

She begins most days about 4 a.m. with newspapers and e-mails. About 5:30, she wakes her three disabled daughters. She and an aide dress the two who use wheelchairs. The girls cannot feed themselves, so Lucas and the aide plug feeding tubes into their bellies. She pours cereal for the one daughter who can eat on her own. She puts the girls on their school buses, the last leaving by 7:10.

Lucas cherishes these mornings, tough as they are, because she knows how hard it is to keep a family together.

She is one of a handful of attorneys in the country whose specialty is representing disabled parents like herself. Her mission: making sure they get the same chance as everyone else to be moms and dads.

According to the U.S. Census Bureau, 15 percent of all parents with children in the household have some disability. These parents are far more likely to have the government try to take their children away. Even Lucas lives in fear that social services may seize her children. She knows the sorrow of losing a child -- a 7-year-old girl whom she wanted to adopt was taken from her after a difficult court fight.

"I love my kids so much and I love being a parent so much, and I know my (clients) do too," said Lucas, 35, a wisecracking woman who once wrote an essay titled "one of the many joys of crip parenting."

"My clients have fought and fought and fought" to raise their children, she said. Her brassy voice wobbled as her eyes watered behind her tinted glasses. "It's just discrimination."

Lucas works her cases out of a seventh-floor office at the Colorado Cross-Disability Coalition in central Denver. The walls are papered with magazine articles about disabled parents. A bumper sticker in the shape of a shark that reads "Lawyer" is prominently displayed. More disabled people seek help from the coalition than Lucas, who carries about a dozen cases at a time, can handle.

Among those she has worked with was a deaf woman in suburban Denver, whose two toddlers were taken away and put up for adoption after social workers deemed her an unfit mother because she could not hear her children's cries for attention. Lucas could identify with her -- she sleeps with a sound-activated pager that vibrates when one of her daughters calls for her.

She advised attorneys for a wheelchair-bound mother in Montana who fended off requirements from social services that someone who could walk be in the house 24 hours a day if her kids were to live there.

Another client, a blind woman in Denver, was refused treatment at a fertility clinic because the staff there did not think she could be a proper mother. She was asked: "How are you going to drive your kid to soccer practice?" The woman lost: A jury ruled that the clinic had no obligation to treat her.

"It's really indicative of how people view parents with disabilities," Lucas said.

Still, Lucas readily acknowledges that some disabled people should not be parents. She herself admits that she's not a perfect parent. "I'm sure there are people who can do a better job than I can," Lucas said. A wealthier mother could afford to stay home with the children, but that wouldn't be a legitimate reason to take them, she said.

"We shouldn't be social-engineering families," Lucas said, "on the basis of things like poverty and disabilities."

The Lucas family lives in a middle-class neighborhood in south Denver, with a huge honey locust tree in the front yard and a short ramp to the front door. With ample space to turn wheelchairs, all Lucas had to do to make the house accessible was widen doorways to accommodate wheelchairs and lower kitchen and bathroom sinks and counters.

On a recent Sunday afternoon, Lucas wheeled into the living room, where bookshelves overflowed with law books. Propped on a shelf was a stuffed figure of Timmy, a character in a wheelchair from the cartoon "South Park." Heather, the oldest child, lay on the floor. She suffers from a rare condition that has left her deaf, unable to walk or fully sign, and looking far younger than her 16 years. Lucas pivoted Heather to face a box of toys and games, but the teen seemed uninterested. "She's mad about something," Lucas guessed.

In the middle of the room, transfixed by images on the flat-screen television, were Lucas' two other children, Adrianne, 8, who has cerebral palsy and uses a wheelchair, and Asiza, 11, who has a mild developmental disability. Asiza was bouncing as she watched a singsong segment showing children how to communicate in sign language.

Lucas turned to Adrianne and asked, "Can you sign 'imagination'?" Lucas tickled her daughter, who smiled and turned back to the show.

At the kitchen table, Lucas' younger sister, Courtney Lucas, 32, was making cookies. Courtney was working as Lucas' aide that Sunday. (Lucas gets assistance at home every day from helpers paid by Medicaid, and an assistant drives her to court appearances.) Courtney proudly talked about her sister: "She has, as long as I can remember, been the most stubborn person I've ever met. She's never been one to let anyone tell her she can't do something."

Carrie Ann Lucas grew up in a small town 57 miles northeast of Denver. She was healthy in her youth, playing basketball and running track. She went to college in Washington state and studied sports medicine. There she began developing unexplained bone tumors and excruciating muscle pain.

After graduation in 1993, Lucas moved to Saipan, where she taught at a beachfront school and scuba-dived regularly. Her illness advanced, and she had to go to Guam and Hawaii for medical treatment. She returned to Colorado after two years, and was eventually diagnosed with a rare degenerative disease called central core disorder that she knew would impose limits on her. She began using a wheelchair and lost her hearing.

She enrolled in seminary, but found that a pastor's life was not for her. "I'm just not that much of a touchy-feely person," she said.

Then, in 2000, Heather entered her world.

Social workers had taken Heather from Lucas' half-brother in Tennessee and placed her in foster care. When Lucas heard this, she made a snap decision. "I wasn't about to let my niece stay in foster care," she said.

Tennessee was skeptical Lucas would be a good parent. The caseworker made Lucas demonstrate repeatedly that she could care for the girl and required that she prove she could lift Heather's wheelchair into her rented van. She visited her niece several times and filled out form after form for almost a year -- while the child was in a Tennessee foster home -- before Tennessee let her adopt Heather.

Back in Colorado, Lucas ran into trouble. The straps on Heather's wheelchair clearly made her uncomfortable,so Lucas got rid of the restraints. One of Heather's teachers reported Lucas to social services for modifying the chair. Another reported Lucas for failing to cut her daughter's hair, saying she had unrealistically high expectations for the child's social life by letting her hair grow out. - WTF?

The complaints, though resolved in her favor, were an indication of the scrutiny that disabled parents face.

But that did not stop her from wanting to adopt Ariana, a 7-year-old in a wheelchair whose biological parents were giving her up. In Lucas' home with its lowered sink, Ariana was able to get herself a glass of water for the first time. "It was a level of mobility and access she'd never experienced," Lucas said.

Then Ariana's aunt and uncle decided they wanted to adopt the child. As biological relatives, they had priority. After 10 months, Lucas lost custody.

"Losing my kid was one of the worst things I've been through," Lucas said. It took three years before she was emotionally ready to adopt her other two children.

At the time, Lucas was working as a legal assistant at the Cross-Disability Coalition, where disabled parents sought help to hold on to their children. Even some of the group's disabled executives and board members found themselves fighting for their rights as parents.

"We realized if that's happening to us, who're really connected, who know our stuff, are professionals with advanced degrees, what's happening to other people?" Lucas said.

Lee Dancer, 39, feels lucky that he found Lucas. The airport concession worker has an IQ of 73, and social services took his newborn daughter more than two years ago. After years of court battles, Dancer went online and searched for attorneys who could help. "Even though she's got all these disabilities," Dancer said of Lucas, "she doesn't let anyone walk over her."

It was just in time -- the state had moved toterminate his parental rights, which could prevent him from seeing his daughter again.

"This is a very heartbreaking case," Donna Schmalberger, an assistant Arapahoe County attorney, told a judge last month as the trial opened in a suburban courthouse. Dancer and the girl's mother, who has a mild developmental disability, "desperately want to be able to parent (the child) but simply are not able to."

The case is ongoing, and Lucas sees it as another example of the government being too critical of disabled parents. She noted that Dancer had no problems helping to raise a 13-year-old son from another relationship. "Every parent can improve," she said, "but his skills are adequate."

Dancer's daughter is developmentally disabled, and one of Lucas' arguments for disabled parents is that they can serve as strong role models. It's why Lucas has gone out of her way to adopt disabled children.

Back in the Lucas home on that Sunday afternoon, Lucas and her sister split feeding duties. Courtney inserted a syringe of high-protein fluid into the tube that plugs into a shunt in Adrianne's belly while Lucas did the same with Heather. Asiza and Courtney's son Gavin frolicked around the living room.

Talk turned to past family camping trips in wheelchair-accessible cabins and an upcoming vacation to Florida. Then Asiza dashed up to Lucas and said, out of the blue: "Can I be a cowboy?"

Lucas turned in her wheelchair, fixed her glasses at Asiza, and reassured her child with words mothers have used for ages. "You," Lucas said firmly, "can be whatever you want to be."