August 4, 2016
Eloise Anderson
Secretary
Wisconsin Department of Children and Families 201 East Washington Avenue, Second Floor P.O. Box 8916
Madison, WI 53708-8916 eloise.anderson@wisconsin.gov
Dear Ms. Anderson,
We are writing as concerned disability rights advocates and organizations about a teenaged Wisconsin girl who is experiencing medical child abuse and neglect. Jerika Bolen is a 14-year-old Appleton child who has type II spinal muscular atrophy (SMA), a neuromuscular disease. Ms. Bolen is reportedly suicidal, and seeking assistance to end her life.
Type II SMA is not a condition that is typically fatal in children. In fact, while some people with SMA die in younger adulthood due to respiratory complications, people with type II SMA often live into their 60s, 70s and beyond. Certainly, without euthanasia, SMA would not result in death for a fourteen-year- old who is receiving appropriate medical care. Our experience as disability rights advocates, many of whom have SMA and similar neuromuscular conditions, is that people with Type II SMA and the level of function that Ms. Bolen has as a teenager, live long into adulthood.
Ms. Bolen has had a well-publicized (and financially successful) fund raising campaign to support her major last wish for a farewell prom. This suicidal teen, rather than getting treatment for her suicidality, is supported by her mother in carrying out her suicide. This is a child protection issue. 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.
Ms. Bolen is reported to have undergone over 30 surgeries (more than one every six months), which is neither typical treatment for SMA, nor comports with standards of care of individuals with neuromuscular diseases. Ms. Bolen reports being in pain, and provides that as a reason to support her suicidality. However, her own reported descriptions of pain management do not correspond to the basics of well managed pain. (e.g. For example, in one article, she reported that she waits to take medication until her pain is at a level 8 on a scale of 10, while pain management physicians advocate taking medication much earlier, “nipping it in the bud” to prevent pain from reaching that level, rather than playing catch-up.)
Many people have severe pain, but pain is not a reason to support suicide – particularly in a teenager. If Ms. Bolen had juvenile rheumatoid arthritis, for example, would she be supported in her suicide? Most likely not; rather it is her status of using a wheelchair and part time breathing support that creates support for her suicide. This is a form of disability discrimination.
We are in no way advocating that this child be removed from her loving family, and we know the Wisconsin Department of Children and Families supports intervention to strengthen families and protect children by “changing any circumstances in the home which might harm the child.” Wisc. Stat. § 48.01(1). We believe this family could be helped and strengthened by being supported to obtain appropriate mental health care for Ms. Boden, as well as proper medical care to treat her pain.
Our experiences as disabled adults, and having grown up with neuromuscular diseases, is that we know being a teenager – particularly a 14-year- old teenager – is difficult. Many of us experienced suicidality at that age, and fortunately received mental health assistance to prevent suicide or other forms of support to get us through our struggles in a society that devalues people with disabilities. We are thankful we had families and doctors that supported us to get us through the difficulties of adolescence, so that we could go on to live productive adult lives. We are now parents ourselves, professors, lawyers, social workers, teachers, advocates, and more.
Wisconsin statutes define neglect as the “failure, refusal or inability on the part of a caregiver, for reasons other than poverty, to provide necessary care, food, clothing, medical or dental care or shelter so as to seriously endanger the physical health of the child.” Wisc. Stat. § 48.02(12g). It defines abuse in part as “emotional damage for which the child’s parent, guardian or legal custodian has neglected, refused or been unable for reasons other than poverty to obtain the necessary treatment or to take steps to ameliorate the symptoms.” Wisc. Stat. § 48.02(1)(gm).
Ms. Bolen is clearly suicidal. This teenager deserves intervention, rather than assistance to end her life. If your department needs assistance locating doctors and specialists who are experts in treating spinal muscular atrophy, referrals are available. For assistance in pursuing appropriate medical referrals, please contact Diane Coleman at dcoleman@notdeadyet.org.
Sincerely,
Carrie Ann Lucas, J.D., C.W.L.S. Executive Director
Disabled Parents’ Rights
Diane Coleman, J.D., President/CEO
Not Dead Yet
Emily Wolinsky, M.A. President
NMD United
Ari Ne’eman, President
Autistic Self Advocacy Network