Child protection authorities were first asked to investigate an Appleton teenager’s decision to die more than a month ago, according to information obtained by USA TODAY Network-Wisconsin.
The disability rights groups that filed the referrals hoping to halt 14-year-old Jerika Bolen’s plans to enter hospice care and cease treatment of an incurable disease say they still have not received word from state or county officials on whether any action is being pursued.
“We hope they’re doing what they’re supposed to be doing,” said Mitchell Hagopian, attorney for Disability Rights Wisconsin. “They’re the emergency responders. We’re not.”
Two child protection referrals cite child neglect on the part of Jerika's mother, Jen Bolen, as their basis for seeking an investigation. They refer to Jerika’s desire to undergo hospice care as a suicide plan.
Melissa Blom, manager of Outagamie County’s Children, Youth and Families Division, declined comment on Tuesday, citing confidentiality of child welfare cases. Officials with the Wisconsin Department of Children and Families, which received one of the two referrals, couldn't be reached on Wednesday for comment.
Jerika suffers from spinal muscular atrophy type 2. She and her mother, Jen Bolen, said earlier this summer that Jerika would cease treatment, including her use of a ventilator that assists her breathing for 12 hours a day, in early September.
Jerika’s treatment status is unknown. Jen Bolen declined any further comment regarding her daughter’s current or forthcoming medical care. Their whereabouts are unknown.
Colorado-based Disabled Parents Rights and three other disability organizations sent a joint letter on Aug. 4 to the Wisconsin Department of Children and Families seeking intervention.
"Ms. Bolen is clearly suicidal," the letter states. "This teenager deserves intervention rather than assistance to end her life."
Disability Rights Wisconsin made its own request in an Aug. 17 letter to county child protection agencies citing Wisconsin’s child neglect statute.
The law in part defines neglect as a caregiver’s “failure, refusal or inability” to provide “medical or dental care or shelter so as to seriously endanger the physical health of the child.”
Hagopian said a child protection investigation would provide an appropriate check on a life-and-death decision. He suspects an investigation would rely heavily on the opinions of Jerika’s care team. A probe wouldn't necessarily change Jerika's plans.
“Maybe there’s some reason we don’t see that palliative care is appropriate,” he said.
Jerika was diagnosed as a baby with spinal muscular atrophy, often referred to as SMA. The incurable disease destroys nerve cells in the brain stem and spinal cord that control voluntary muscle activity. Jerika has never walked, and today her movement is mostly limited to her head and hands. She said she's in constant, significant pain and recognizes her already limited physical capabilities will continue to decrease.
Her story drew an outpouring of support from across the country this summer. More than 1,000 people arrived when her family, friends and care team held her last-wish prom, dubbed J’s Last Dance, in late July.
Hagopian said his organization advocates for self-determination in medical care for adults, but argues children don't have the capacity for those decisions. He questioned Jen Bolen's support of her daughter's decision.
"The fact that her daughter has expressed a wish to end her life in this fashion is not the deciding factor," he wrote in the request for an investigation.
Lisa Pugh, public policy director for Disability Rights Wisconsin, questions whether Jerika's decision was based on the best information. Medical professionals sometimes make poor assumptions when counseling disabled patients on quality-of-life issues, she said.
“We’d never want somebody’s opportunity to be narrowed by someone else’s assumption of what their life will look like,” Pugh said.