Exploring the Rights of Disabled Parents : Families: A recent law guarantees a wide range of services and protections to disabled people. But does it guarantee them help in raising children?
The quiet effort to take the child away from Leigh Campbell-Earl and Bill Earl began, as such cases often do, with an anonymous telephone call to county social services workers: There is a woman in East Lansing, Mich., about to have a baby, the caller said, and she is far too disabled to care for it. Her husband uses a wheelchair, too. Shouldn’t the county investigate?
No one knows how many people with severe disabilities are becoming parents. The independent living movement that has led thousands of Americans with disabilities to take jobs and move into their own apartments has had an incalculable romantic side effect.
Men and women who used to be kept at home are falling in love and having children in circumstances that the medical community and legal system are almost completely unprepared for.
Campbell-Earl and Earl find themselves at the center of a complex battle over the rights and responsibilities of disabled parents. Can, for example, people who are so disabled that they need round-the-clock care meet the demands of raising children? Should the government provide support services to help disabled parents care for their children? Or, as some argue, would these children be better off if they were placed in foster homes or adopted by parents who could bring them up without government assistance?
The Michigan husband and wife, both 29, have cerebral palsy, a condition of impaired muscle power and coordination with many causes and symptoms, often arising from brain damage at or before birth.
Their daughter, Natalie, was born May 5 with no apparent disabilities. They have kept the child at home with the help of the United Cerebral Palsy Assn. and several friends, including a young woman who has a mild case of cerebral palsy.
The problem for the Michigan couple is that they cannot pay for a professional caretaker to tend the baby, a solution that many affluent parents with disabilities have relied on to keep their children.
Campbell-Earl and Earl have asked the department of social services in Ingham County, Mich., for assistance but have been told that there is no help available for non-disabled children. County social workers have also made it clear that they will put Natalie in foster care if there is no one capable of caring for the child in the apartment.
On Aug. 7 Campbell-Earl testified and submitted a statement from her husband during a public hearing at the Michigan State Capitol on discrimination against disabled parents. Little that has happened to them so far, or to other parents with disabilities who have fought efforts to remove their children, gives much encouragement to similar couples considering parenthood.
“It is stable, for a while,” said Bill Earl, whose grasp of the issues is masked by his extremely slow, somewhat distorted speech. “We just don’t know how long it is going to last.”
There are at least 43 million Americans with some form of disability, making them society’s largest minority group. Until the last two or three decades, most lived in institutions or with family and friends who assumed they would never be capable of leading adult lives on their own.
But with the passage of the Americans with Disabilities Act, people like Campbell-Earl and Earl are guaranteed a wide range of services and protections from discrimination, which may include even the right to attendant help for their child.
Societal attitudes have changed so quickly, and computer and medical technologies have so increased their productivity and creativity that Americans with disabilities are entering modern life, and encountering its joys and dangers at a breathtaking rate.
“As a society, we have encouraged people with disabilities to live independently by removing architectural barriers, to become self-sufficient by providing job training and rehabilitation programs,” said Deborah Kaplan, a California attorney and parent who, like her husband, uses a wheelchair while raising a very active 6-year-old boy. “Having our own families and children is a natural result of this public policy.”
Like many people with cerebral palsy, the Michigan couple suffered neurological damage because of problems during birth. Cerebral palsy can have many causes, including injury and disease. Symptoms vary widely from mild unsteadiness and occasional seizures to spastic movements, mental retardation and loss of sight, vision and speech.
Campbell-Earl and Earl have no mental impairment, but both have difficulty speaking clearly, and Campbell-Earl is learning to use a voice synthesizer. She cannot walk or use her arms and controls her wheelchair with her left foot. Earl also uses a wheelchair but has more use of his arms.
Both are unemployed and depend on Social Security disability payments. The Ingham County Department of Social Services also provides attendants to care for the couple.
Earl is looking for work as an advocacy worker specializing in disability rights. He has served on the board of the local chapter of the United Cerebral Palsy Assn. At the August hearing before the state legislature, Earl said in a prepared statement, “Most people don’t want to pay taxes. I look forward to the day when I can say, ‘I am a taxpayer.’ ”
Campbell-Earl and Earl met in a nursing home in Grand Rapids when they were 15. Romance blossomed much later, after they had attended college. They found they were both lovers of books and movies, and they developed a passion for matching wits at rummy.
They married in 1987 and, although the pregnancy was a surprise, they had already considered some of the logistics of caring for a child. They quickly notified county social workers and asked for advice and assistance in raising the child. The request was ignored.
Compared to other cases, Campbell-Earl and Earl are fortunate to have kept Natalie as long as they have. In the most dramatic disabled parenting case, authorities in 1987 and 1988 took two children away from Tiffany Callo, a San Jose, Calif., mother, and arranged their adoption despite a long and often bitter court fight.
The Michigan couple has some advantages over Callo. They have more sophistication than Callo had when her children were born about the legal and political status of people with disabilities. They also have access to the new regulations of the Americans with Disabilities Act, which may be the premier civil rights legislation of the 1990s.
“Under ADA, the county has an obligation to provide permanency planning to that family, to make some reasonable accommodation to their needs. That could take the form of personal assistance, environmental modification or a piece of equipment,” said Allan Bergman, director of governmental activities for the United Cerebral Palsy Assn. Inc.
Disability rights advocates have focused in particular on Title 2 of the ADA, which bars discrimination on the basis of disability by state and local governments.
Ingham County officials say they do not accept the disability activists’ interpretation of the ADA and that even if they did, they do not have the money to provide care for Natalie Campbell-Earl.
What’s more, the attendants who look after Campbell-Earl and Earl for 17 hours every day are not authorized to care for Natalie as well, because the baby has no disabilities and is therefore ineligible for government services.
At the same time, the county is responsible for protecting the child from any physical danger caused by her parents’ inability to walk or to lift her.
Charles Peller, spokesman for the state department of social services, said what the couple needs is 24-hour home care for their baby, which would cost an estimated $3,000 a month.
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