CPCC Accomplishments

 

​

• Received proceeds in 2022 from a fundraiser to offer the Mood Lifters Program, a mental health and well-being support to any parent of a child in Michigan with a life-limiting condition at very low cost.

 

• Continue to advocate for Michigan Medicaid and CSHCS to finalize plans for a home-based support program for Michigan children with high medical complexity not receiving services in established multi-disciplinary clinics.

 

• Due to the pandemic, held the 2021 annual full-day conference online, with 98 people participating. The theme was “Walk in our Shoes: The Challenges Michigan Families Face Raising a Medically Complex Child”.

 

• Highlighted at CPCC’s 2021 virtual conference a study on respite service challenges and opportunities that has resulted in a working group at Michigan’s Children’s Special Health Care Services to re-examine and expand the respite benefit.

 

• In 2021, 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.

 

• In 2020 and 2021, CPCC collaborated with 11 Michigan State University Scholar Students on 2 research projects:

• Developed and initiated an online survey designed to work out the viability of Michigan’s current hospice providers offering specialized pediatric palliative care in the future

• Identified and videotaped parents with a medically challenged child in rural areas who 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.

 

• Created the Charlie Waller Legacy Fund in 2021 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.

 

• Implemented 4 webinars with the theme, “Caring for the Caregivers” in 2020, in lieu of our in-person annual conference, cancelled due to the pandemic. The webinars provided families and healthcare providers the opportunity to learn from others. All recordings are available on the webpage.

 

• Formed 5 member-led groups in 2021 for interested members to discuss and plan for future actions in the areas of advocacy, education and telehealth, perinatal, bereavement and respite care.

 

• Keep you informed and up-to-date with bi-monthly electronic newsletters.

 

• Revised www.childpalliative.org with an expanded resource page and links and added a newsletter archive and “In the News” articles of interest to provide you relevant information.

 

• Formed 5 member-led groups in 2021 for interested members to discuss and plan for future actions in the areas of advocacy, education and telehealth, perinatal, bereavement and respite care.