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.
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Several groups want their opinions heard and demand an investigation.
A young teenager in Appleton, Wisconsin, has made a decision to commit suicide, after a life-long battle with Spinal Muscular Atrophy Type 2. She and her mother, Jen Bolen, said earlier this summer that Jerika would go without her ventilator while under hospice care in early September, essentially scheduling her own death.
“We would like to see this young women get appropriate health care and medical care and it’s clear under Wisconsin law that teenagers can not end their lives this way”, said Carrie Ann Lucas, the executive director of the Colorado based Disabled Parents’ Rights group. Jen Bolen declined any further comment regarding her daughter’s current or forthcoming medical care. “If child protection is not involved in Ms. Bolen’s situation, despite statute and caselaw that is clear that it is unlawful for children to terminate medical treatment, she is a victim of disability discrimination in addition to the medical neglect”.
Hagopian has said that his organization supports self-determination for medical care in adults.
Jerika said she’s in constant pain – about a seven on a scale of one to 10 on her best days. Medical professionals sometimes make poor assumptions when counseling disabled patients on quality-of-life issues, she said.
“I was fighting for my kid”, she said.
Though Jerika’s disease is progressive, it isn’t “acutely terminal”, Lucas said, and she questions whether simply withholding treatment would be sufficient to end her life quickly.
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. Others with disabilities have been sending letters to her via the Letters for Jerika campaign, which seeks to inform Bolan that a life with a disability is a life worth living.
“We’re talking about a 14-year-old child”. “Any other teen wishing to die receives suicide prevention, not suicide assistance”, Disabled Parents Rights group shared on its Facebook page.
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Lisa Pugh, public policy director for Disability Rights Wisconsin, couldn’t be reached for comment on Tuesday.
