Pittsburgh Pediatric Palliative Care Coalition
|
Mission Statement
The Pittsburgh Pediatric Palliative Care Coalition is committed to providing
leadership and advocacy in understanding and promoting palliative and
end-of-life care for children with life limiting conditions.
Vision Statement
PPPCC acts as an advocate and educational resource, facilitating
relationships by encouraging support among children, their families,
professional service providers, legislative and regulatory agencies and funding
sources.
Current Local Initiatives
Dear Family,
When our children were diagnosed with a life
limiting illness our lives changed forever. Navigating medical, educational and
community services while trying to maintain employment and create the best
quality of life for our families left us feeling overwhelmed and isolated. Over
the past two years our coalition, The Pittsburgh Pediatric Palliative Care
Coalition, has been working to improve services in our region. Our work has been
recognized as crucial by the State of Pennsylvania. We now have the opportunity
to bring families throughout Pennsylvania together to share our stories and
voice our concerns to an audience that will listen. Out of this dialogue we will
create action with the goal of improving services for children with life
limiting illnesses and their families.
On January 12, 2008, Pennsylvania’s Department of
Public Welfare will convene a meeting of the Pennsylvania Statewide Taskforce
for Pediatric Palliative and End of Life Care in Harrisburg. The taskforce will
consist of at least 51% families and 49% service providers, legislators and
those who are interested in this issue. Would you consider joining us and
becoming one of the taskforce families?
If you are interested in participating, the most
important thing to do is to fill out a registration form. This form is
enclosed in this letter and also can be filled out online at Pennsylvania’s
Department of Public Welfare website
www.dpw.state.pa.us . Once at the site go to DPW KEYWORD, scroll down
and click on “PPHC TASK FORCE”. This website has the registration form and
further information about the taskforce. If you prefer, you may fill out the
enclosed registration and mail it to the address listed on the form.
Information about the work our local coalition has
been doing here in Western Pennsylvania can be found at our website
www.pppcc.net. You can also contact us at 1-877-647-4373 ext. 707. If you
need transportation to Harrisburg please contact us at the phone number above.
We have rented a bus with first come first serve availability at a cost of
$30.00 per person. There is financial assistance available for those in need.
Who better to champion the cause of pediatric
palliative and hospice care than those whose lives have been affected by a life
limiting illness. Speak to an audience that has asked to listen. Many voices can
speak as one!
Sincerely,
Meghan O’Donnell Beth
Westbrook
Parent Parent
Co-Founder PPPCC Steering Committee PPPCC
Co-Chair PPHC
Current State-wide Initiatives
Pennsylvania's Department of Public Welfare - Pediatric
Palliative and Hospice Care Initiative
The Honorable Estelle B. Richman, Secretary of the Department of Public
Welfare, is creating and convening the Pediatric Palliative and Hospice Care (PPHC)
Task Force to examine issues surrounding supportive care for children with
life-limiting diagnoses in Pennsylvania. Members of the PPHC Task Force will be
charged with developing a comprehensive report that examines Pennsylvania’s
current human services delivery system for palliative and hospice care for its
children. The task force will ultimately publish a report that will identify
challenges Pennsylvania’s children and their families encounter when searching
for and receiving care at the end of life, while simultaneously developing
recommendations that will resolve those challenges.
The PPHC Task Force will be comprised of a statewide pool of family members,
advocates, MD/DO’s, nurses, researchers, hospice workers, hospice volunteers,
researchers, medical ethicists, social workers, therapeutic professionals,
psychologists, religious/spiritual professionals, legislators, legislative
staffers and state agency staffers. It is our goal to have a general membership
that includes at least 51 percent family participation in an effort to ensure
that the challenges and recommendations the PPHC Task Force identifies are
informed and driven by the first-hand experiences of Pennsylvania families that
have loved, advocated, and provided care for a child with a life-limiting
diagnosis. In an effort to recruit a diverse, statewide group of PPHC Task Force
participants, our task force application process will be open to members of the
general public who have personal or professional experiences with end-of-life
care for children. It is important to note that the PPHC Task Force will not be
diagnosis specific, because we are attempting to improve the general human
service delivery system for all children with any type of life-limiting
diagnosis.
|
