Friday, September 9, 2016

Diane Coleman: Disability Advocates Push for Better Healthcare for Jerika Bolen

http://notdeadyet.org/2016/09/disability-advocates-push-for-better-healthcare-for-jerika-bolen.html

Jerika Bolen
Photo: Live for Jerika Bolen
Many have heard of 14-year-old Jerika Bolen’s plans to die, which received extensive news coverage over the summer. Disability advocates may have wondered why the story didn’t appear in the NDY blog sooner. The short answer is that, behind the scenes, we were trying to push for better health care, especially expert quality pain relief to address the primary reason Jerika stated for wanting to die. We were trying to respond to her comments about her life.


On Sunday, Jerika was scheduled to go into hospice, even though her disability is no where near the “terminal” stages. For twelve hours a day, at night, she uses breathing support, a biPAP, similar to the more common CPAP, with a breathing mask. (I use one about 20 hours a day for a similar neuromuscular condition.) As Carrie Lucas of Disabled Parents Rights wrote in our letter to the Wisconsin Department of Children and Families:
This non-terminally ill child is reportedly going to be placed into hospice sometime in August. While Ms. Bolen maintains optimal respiratory health using a bipap machine with a mask to assist breathing at night, she is able to breathe to sustain life without that device for a very long period of time daily. The only way her breathing will stop is to discontinue any form of breathing support, including her bipap, while administering a sufficient dose of morphine to suppress her breathing – in short euthanasia. If this plan goes forward, it goes beyond the allowed “double effect” of making a hospice patient comfortable even if it may also shorten life. Ms. Bolen is not terminal and being comforted through the dying process, but rather her death could only be induced with medication.
Many of those who joined in our letter are adults with Jerika’s specific diagnosis, SMA Type II, NMD United. Many of us remember middle school as a difficult time, combining the usual teenage issues with the experience of a highly stigmatized identity in our image conscious society. 

Diane Coleman, President NDY
And we have big questions about her reported 38 surgeries and high levels of pain, questions about the competence of her doctors. So we urged the state agency to intervene and secure better quality health care and pain relief for Jerika, as well as disability competent mental health counseling.

Based on news coverage of our August 4th letter, Disability groups seek to intervene in teen’s plan to die, the Wisconsin protection and advocacy organization reportedly made the same request.

But as of today, we don’t know whether Jerika and her mother decided to continue with the plan to enter hospice, we don’t know whether the Wisconsin Department of Children and Families decided to intervene and secure better health care for Jerika, and we don’t know whether the hospice provider is willing to deliver enough medication over a sufficient period of time to produce total respiratory failure in a 14-year-old disabled girl who only uses non-invasive breathing support 12 hours a night and is not really terminally ill.