From the left, Deana Kane of Lewiston, daughters Brenna and Sylvia Kane, and father Kregg Kane. The family has sued the Maine Department of Health and Human Services over treatments for Brenna’s autism spectrum disorder. Photo courtesy of the Kane family

A Lewiston family has filed a federal lawsuit that claims the state is denying their daughter the recommended treatment for her autism spectrum disorder and other disabilities, and that her medical bills at an out-of-state hospital are adding up to more than $1 million.

The Kanes filed their complaint in U.S. District Court in Portland on Friday. It says their daughter, Brenna Kane, has been a patient since June 2018 at the Kennedy Krieger Institute in Maryland, a specialized hospital for adults and children with disabilities. When her treatment providers began to discuss a community placement with Maine Department of Health and Human Services, the state objected to certain components of her therapy plan.

The dispute has continued for more than a year and led to the lawsuit, which seeks a placement for Brenna and unspecified compensatory damages and attorneys fees.

“I won’t give up on Brenna, and I won’t give up on all the other kids that are going to need this,” her mother, Deana Kane, said in an interview.

The complaint alleges the state has objected to Applied Behavior Analysis, a broad type of therapy that is endorsed by the American Psychological Association. A DHHS spokeswoman said she could not comment on pending litigation, and she did not respond to a specific question about token economy therapy, which involves a reward system for positive behavior and is specifically mentioned in the complaint. The state will have the opportunity to file a response to the allegations in the complaint.

“MaineCare covers Applied Behavior Analysis, including in community settings,” spokeswoman Jackie Farwell wrote in an email.

The lawsuit says Brenna Kane has multiple disabilities, including autism spectrum disorder and intermittent explosive disorder. Starting when she was 5 years old, she attended the Margaret Murphy Center for Children, a specialized school for children with disabilities. One of her symptoms is incidents of aggression or self-harm, which became more frequent in recent years.

In an interview, her mother said she worried about her daughter’s safety and the safety of other people around her. Deana Kane described holding her daughter for hours and believing she was calm, only to see the girl immediately hit herself again when she was released. In early 2015, the complaint states she had roughly four incidents per day. By June 2018, the incidents had increased to more than 400 per day. In one instance, she blinded herself in one eye.

Her school referred Brenna Kane to the neurobehavioral unit at Kennedy Krieger, and she was admitted there on June 27, 2018. By November 2018, the treatment had reduced her harmful behavior to less than one incident per hour.

“I know on the day we brought her in (to Kennedy Krieger), I never dreamed it would be as good as it is now,” Deana Kane said. “I didn’t even fathom that. I’m so extremely proud of how hard she’s worked.”

The lawsuit does not detail the specific therapies prescribed for Brenna Kane, but her mother described her daughter’s routines.

Now 21 years old, Brenna Kane loves to watch videos and sing songs, especially the themes from her favorite shows, like “Zaboomafu” and “Blue’s Clues.” She has scheduled time for academic work, playing with others and playing alone. She also has a token economy. Every hour, she gets a star if she has followed her behavioral rules, which include not hurting herself. She can cash in her stars for rewards in “Brenna’s store,” which includes treats like stuffed animals, patterned socks and extra snacks.

The complaint states the staff at the Kennedy Krieger Institute soon began discussing options with Maine DHHS for Brenna Kane to move to a community-based clinical program. Her treatment providers in Baltimore stressed the need to follow the behavior plan that had been successful there and offered to train the staff at any future placement.

But Kane said rules for these therapies differ from state to state, and DHHS said certain aspects of the behavior plan were not allowed under Maine law and other regulations. The lawsuit did not specify which therapies were disputed, but did say Maine officials cited a law that generally prohibits anyone from denying people with intellectual disabilities or autism their personal property, like with the token economy therapy.

Kane said there were other barriers as well, and she said she is confident that any change in her daughter’s behavior plan will result in regression and self-harm. She also said some regulations have changed even as the family searches for the right placement for their daughter, further complicating that process. They have looked in and out of Maine, and while some options are promising, others have denied Brenna Kane because her need is so high. So the family has little clarity on their next steps.

In the meantime, the Kanes’ private insurance company covered the first few months of their daughter’s stay at Kennedy Krieger, but stopped paying when she was ready for a less intensive program. Brenna Kane is a MaineCare recipient, but her mother said they have not been able to get that insurance to pay for the hospitalization, either. So the unpaid bills from Kennedy Krieger have added up to more than $1 million as their daughter waits for placement in a group home or another facility.

Attorney Edmond Tiryak, who is based in Philadelphia and represented the family in their dispute with their private insurance company, is now also representing them in their federal lawsuit. He said DHHS “has turned its back on science.”

“This agency’s anti-science position has significantly harmed her and many other disabled individuals in Maine,” Tiryak said in a news release. “Their unfathomable refusal to permit ABA under these circumstances amounts to nothing other than abuse.”

Deana Kane said she understands that many laws have been put in place to protect people with disabilities from abuse. But they chose to file a lawsuit because she doesn’t want her daughter or other people with severe disabilities to struggle to access the treatments that are best for them.

“I need this for my daughter to be safe and access a happy life, but I need this to make change for all the kids and all the adults that suffer this way,” Deana Kane said.

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