CPCC 2020 Accomplishments
CPCC Board Member, Gabrielle Tazzia, has been appointed as CPCCM’s family/parent representative to the National Coalition Hospice and Palliative Care’s newly formed Pediatric initiated Palliative Care Task Force’s Family Advisory Council.
Collaborating with 11 Michigan State University Scholar Students since August on 2 research projects:
Developed and an online survey designed to work out the viability of Michigan’s current hospice providers offering specialized pediatric palliative care in the future
Identified parents with a medically challenged child who have agreed to be interviewed to help us learn about the challenges they face in getting their child the support they need. Information from these, as well as from other initiatives, will be used by CPCCM to further our mission of educating and advocating for increased services.
Although we were not able to meet in person in November 2020, our fall webinar series, focused on Caring for the Caregivers, enabled a combined 174 participants to attend the sessions. Attendees included coalition members and folks from other states to learn and share experiences and insights. We want to thank the experts who headlined the four sessions:
• September's session on Mood Lifters, highlighted the adaptation of a proven support program that is helping parents of children with serious illness.
• October's session on respite care highlighted the remarkable A Rosie Place in South Bend, Indiana, followed by a review of what is available in Michigan for respite care and what is needed.
• November's webinar featured the personal story of a palliative care parents Brent and Stacey Lotterman highlighted many of the still unmet needs of parents.
• December was the final session of the series. Kurt Scholler, meditation, and mindfulness instructor shared his expertise by giving participants an introduction to techniques that can help caregivers and professionals.
This month, Governor Whitmer signed into law bills that will allow schools to accept do-not-resuscitate (DNR) orders when appropriately supported by the children's caregivers. The coalition has been advocating on behalf of this legislation for several years.
Bi-monthly e-newsletters are in place to ensure our members are kept up-to-date on important information and resources.
www.childpalliative.org is updated regularly with relevant articles from the media, updates on important legislation, new resources and happenings within the CPCCM community.
The Charlie Waller Legacy Fund was created to provide financial assistance to families facing financial difficulties as a result of having a child living with a medically complex condition or who have had a child die of any cause. Charlie Waller was just 2 years old when he was diagnosed with a form of brain cancer that took Charlie’s life in December 2013 at the age of five.