LEWISTON — The local parents of a woman with autism and other disabilities are suing the state, claiming their daughter can’t return to Maine and live here safely because the treatments she needs aren’t allowed by Maine’s Department of Health and Human Services.
Deana and Kregg Kane are seeking $1 million to cover the cost of having their daughter, now 20 years old, treated in a program at a residential setting in Maryland, alleging the department is in violation of the Americans with Disabilities Act.
In their complaint, filed Friday in U.S. District Court in Portland, the Kanes said their daughter was diagnosed with autism, disruptive, impulse-control and conduct disorders, as well as intermittent explosive disorder.
Declared incompetent, she is under the legal guardianship of her parents.
When she was 5 years old, she started attending the Margaret Murphy Centers for Children in Auburn, which specializes in programming for children with disabilities, including autism. The girl “exhibited difficulties with aggression and self-abuse,” according to the civil complaint.
Eleven years later, when she was 16, she was engaging in “4.2 incidents of aggression or self-abuse per day,” the complaint says.
But her behavior worsened, according to the complaint, because DHHS wouldn’t allow her to be treated with applied behavioral analysis, or ABA, a program designed to “reduce problem behaviors and increase appropriate skills for individuals with intellectual disabilities, autism and related disorders.”
The complaint says ABA is recognized as the standard of care by the U.S. Surgeon General, the National Institute of Mental Health and the Centers for Disease Control. Other than ABA, “no scientifically validated treatment mechanism has had success in teaching people with disabilities … to reduce or eliminate problem behaviors.”
By the time she was 18 years old, the girl had blinded herself in one eye. Roughly six months later, “her harmful behaviors had increased to 414 per day,” the complaint says.
Because of the girl’s dangerous behavior, the Auburn center referred her to the neurobehavioral unit of the Kennedy Krieger Institute of Baltimore, Maryland. She was admitted there in June 2018.
At that time, her behavior included punching herself in the face, slamming her body into walls and floor, and pulling her hair, according to the complaint.
She was aggressive toward others and ran from caregivers.
The Maryland institution is nationally recognized as an expert in the field of ABA, according to the complaint.
After five months at that institution, the teen’s harmful behaviors had dropped to a rate of less than one per hour and “she was ready to be discharged into an appropriate setting in the community.”
In August 2018, personnel at the institution and Maine’s DHHS started planning her return to Maine. Officials at the institution stressed the need for a community placement that would include an ABA-based behavior plan.
The state balked, saying state law and regulation barred the ABA procedures used by the institution, according to the complaint.
“There is no clinical or scientific justification for DHHS’ refusal to allow the use of her ABA-based treatment,” the suit says.
“Defendants’ actions in this case are such a substantial departure from accepted professional judgment, practice or standards as to demonstrate that no professional judgment at all was exercised.”
In September 2018, the teen’s insurance stopped paying for her hospital bills at the Maryland institute, saying she no longer needed treatment there. Since then, the Kanes have been billed for the full cost of her treatment there, totaling more than $1 million, according to the complaint.
The couple, on behalf of their daughter, is seeking a jury trial.
DHHS spokeswoman Jackie Farwell said the department is unable to comment on pending litigation, but added, “MaineCare covers Applied Behavior Analysis, including in community settings.”
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