What would Florence Say? Intensive Care of Medicalized Children at Home

Last modified by Doug Maynard on 2019/11/15 19:17

Florence Nightengale was a nurse most famous for raising an alarm socially and politically to relay that wounded soldiers were being being delivered poor care by overworked medical staff in the face of what she saw as official indifference. Today, publicly funded pediatric homecare programming in Ontario is identified as a setting where serious care-related problems are being encountered by mothers with complex care children. In this series of talks and discussions, four mother-advocates who have themselves provided extensive complex care at home, talk about the problems they and others have experienced. They further suggest steps that need to be taken in order to ameliorate the delivery of care at home to highly vulnerable and medically complex children in Ontario. These advocates, from diverse backgrounds, have published and spoken publicly about their concerns. This webinar will be delivered in four parts:

  • What does Success Look like For Us? Should we Place Solutions in Health  Care or Community or Both? (D. Thomson)
  • Support of Maternally Complex Care in Medicalized Childhood Settings: From the Trenches of Litigation (S. Jennings)
  • Lack of Trained Staff in the Community to Nurse Kids Who Live at Home: Impacts on Families of this Health Care Failure. (M. White)
  • Building Capacity Through Policy and Lived Experiences for Children with Medical Complexity and their Families  in Ontario (S. Severino)

headshot2.jpg Donna Thomson BFA, BEd, DTIE  @Thomsod

Donna Thomson is a caregiver, author and activist.  She is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (McArthur and Co., 2010 and The House of Anansi Press, 2014). Donna’s son Nicholas has severe cerebral palsy and is medically complex. Donna also cared for her mother who died in August of 2018 at the age of 96. She is a board director of Kids Brain Health Network (KBHN) and is a co-instructor of an online course in family engagement in research at McMaster University. She also teaches families how to advocate for care at The Advocacy School and at Huddol.com. 

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Sheila Jennings M.A., LL.B., PhD.  @SheilaKJennings

Sheila Jennings is a former practicing family and child welfare lawyer.  She is currently a sessional instructor in the Faculty of Legal Studies at Ontario Tech University.  Sheila has a master’s degree in Critical Disability Studies, where her area of research focus was pediatric home-care in the context of human rights and provincial experiences.  In the spring Sheila defended her doctoral dissertation entitled “The Right To Support: Severely Disabled Children And Their Mothers” undertaken at Osgoode Hall Law School. She has published in the areas of disability support and the law and is the Ontario lead with Moms Stop The Harm (MSTH), which is a national network of Canadian families whose loved ones died from drug related harms or who have struggled with substance use.  Last but not least, Sheila is the mother of three amazing young adults.

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Marcy White M.S.W., M.B.A.  @MarcyFWhite

Marcy White BSc, MSW, MBA, enjoyed a career in the investment industry until her son, Jacob was born in 2002. Her academic degrees did not prepare her for caring for Jacob, who was born with Pelizaeus-Merzbacher disease (PMD). Since Jacob’s diagnosis at 10-months-old, Marcy has become an advocate for her son. Marcy is the author of The Boy Who Can: The Jacob Trossman Story and has published many articles about the challenges of parenting a child with complex care needs. She co-founded curepmd.com to educate people about PMD and fund research into finding a treatment. Marcy lives in Toronto with her husband, Andrew, and their three children, Jacob, Sierra and Jamie.

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Samadhi Severino M.A., PhD student @samadhimora

Samadhi is a mother, caregiver, and a PhD Student in Health Policy & Equity at York University. She is currently sits on the Research Ethics Board as a member for Public Health Ontario. She is also a health & disability policy consultant, and research assistant with York University School of Nursing. Samadhi has a masters degree in Critical Disabilities Studies, where her area of research focused on the inequities of accessing home care supports for the parents of children with complex needs in Ontario. Her doctoral research focuses on medical assistance in Canada for People with Disabilities examining home care and palliative care access. Additionally, she is has on going under publications on how to support students with disabilities in clinical placement and home care access for children with complex needs. She previously sat on the technical working group for the family managed care program for Children with Medically Complex Needs through the Ministry of Health & Long Term Care of Ontario. Samadhi lives with her two sons (one with medically complex needs), Kian, and Ethan in East Gwillimbury, Ontario.

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Created by Paula Robeson on 2019/09/30 16:35