Highlights of the July 12 - Meeting

 Meeting Summary

• Discussion of CHI presentation and survey results

• Where do we go from here?

• Medicaid waiver and Funding sources

• Program development and improvement

• Statewide Coalition

• Subcommittees

• Bayer Center for Non Profit

 Discussion of CHI and Survey Results

Briefly reviewed Children's Hospice International (CHI) presentation and their role providing technical assistance for 1915c State waiver application. Reviewed contacts provided by CHI in the Eastern part of Pennsylvania who are also interested in pursuing waiver funding for pediatric palliative and end-of-life care. Discussed need for program development in case-management, respite and end-of-life care in the Pittsburgh region.

Children's Hospice International - http://www.chionline.org/

Where do we go from here?

Medicaid Waiver and Other Funding
An article was presented from July 10, 2005 edition of the Pittsburgh Post Gazette reporting Pennsylvania’s recent push to combine waivers and require parents of special needs children to cost-share for services according to income guidelines. Despite this concern, all members in attendance were interested in moving forward with Medicaid waiver option but also interested in exploring other funding sources.

Discussed other funding possibilities such as recent NIH grant to improve pediatric palliative care. Grant information presented as well as website. http://grant.nih.gov/grants/guide/pa-files/PA-04-057.html. Discussed need for coordination of funding effort and possibility of expanding to statewide effort to ensure best outcomes.

Program Development and Improvement
Discussed need for program development as a joint effort of the Coalition to ensure comprehensive and adequate services for families and children and avoid duplication and gaps in services. Respite, case-management, palliative, end-of-life care and bereavement were the areas of focus.

Statewide Coalition
Discussed need for statewide coalition for pediatric palliative care to strengthen push for waivers, expanded funding sources and appropriate program development.  Learned about current statewide coalition “Every Child Deserves a Medical Home” from Susan Davis at Every Child Inc.  Discussed possibility of linking with this existing coalition.  A presentation by members of PPPCC will be scheduled with this coalition to explore this possibility further.  Brief overview of PA’s first statewide delegation on improving end-of-life care was given. Meeting was held on June 27^th in Harrisburg. Meghan O’Donnell, MSW from Forbes hospice and Carol May, Nurse Manager of Children’s Hospital Supportive Care Program were the only pediatric representation statewide. Findings from the delegation will be written up in a report and presented to Governor Rendell.

Note: An email received on August 11^th  from CHI stating that Judy Henderson from Cheribum’s Village in Philadelphia has set up a meeting with state secretary of Heath and Welfare,  Estelle Richman, to pursue the 1915c waiver. A list of others in the Philadelphia area interested in this has been emailed as well and will be contacted this week. Updates will follow.

Also Bob Batz from the Pittsburgh Post Gazette is writing an article on Pediatric Palliative Care in the Pittsburgh area. He found our website, was very impressed and is interviewing members of the coalition!

Subcommittees
The following two subcommittees were developed as a result of this meeting to address funding and programmatic needs.

Funding Committee – This committee will explore expanding funding options (such as private insurance coverage and grant opportunities) and pursue 1915c Medicaid waiver. The first meeting of this committee will be hosted by Carolyn Brinkley at the Children’s Home. A date and time will be emailed to members of this committee.

Program Development – This committee will explore program development in specific areas of need such as respite, case-management, hospice and bereavement care. This committee will work together to expand and improve existing services in the Pittsburgh region. This meeting will be hosted by Every Child Inc. A date and time will be emailed to members of this committee

Meghan O'Donnell will contact members to create subcommittee membership. Subcommittee hosts will schedule meetings and contact members via email. 

These are the members of each subcommittee as of 8/15/05.

If you have not been contacted or have not had time to respond regarding your interest in subcommittee membership, please email me at meghan27@earthlink.net and I will be sure to add your name to your choice of committee and forward it to the appropriate committee host.  Thanks! 

Program Development Subcommittee Members

• Children’s Home – Carolyn Brinkley

• Every Child Inc. – Susan Davis

• Children’s Institute – David Miles

• Western School for Blind Children – Donna Salovay

• Children’s Hospital - Carol May

• Forbes Hospice – Dan Leger and Meghan O’Donnell

• Make-a-Wish – Amber Koch

• Highmark – Julie Reichert, Leeanne Moore and Amy Foster

• Three Rivers Hospice –

• Extended Family Care – Laura Partridge

• Ronald McDonald House – Bill Grattan

• Family Member – Mark Pastoria

• SIDS of PA – Eileen Carlins

• Interim Healthcare – Sandra Chipparelli and Ollie Lowmiller

• Care Unlimited – Dean White

 Funding Subcommittee Members

• Allegheny Respite Care Coalition – Mary Jo Alimena Caruso

• Associate Professor of Medicine Univ. of Pittsburgh – Tony Bauer

• Forbes Hospice – MaryAnne Fello and Meghan O’Donnell

• Children’s Home of Pittsburgh – Carolyn Brinkley

• Every Child Inc. – Susan Davis

• Care Unlimited – Dean White

Bayer Center for Nonprofit
Yvonne VanHaitsma thanked everyone for their involvement in the coalition and the overwhelming support completing the study. Her role as a consultant is now completed. She is interested in maintaining contact with the coalition and helping when she is able. She encouraged the coalition to continue with it’s mission to address the many needs of the families in the Pittsburgh area. We thank Yvonne and the Bayer Center for their commitment and assistance with launching the Coalition and conducting the family survey.

The next PPPCC meeting will be held in early November following the subcommittee meetings.
Date and time will be emailed to coalition members in September.