PPPCC Meeting Minutes for November 2, 2007

Hosted by "The Children’s Home"

1. PPPCC Updates
   1. Introduction of Brian Litzinger from Senator Jane Orie’s office – We invited Mr. Litzinger to attend the meeting to educate Senator Orie about this issue and the Statewide Taskforce. He assured of us Senator Orie’s support and how this fits with her seat on the Youth Committee on the Senate. He also encouraged us to contact and educate other local legislators as well.
2. Parent Resource Network is for parents in NICU – Kelly Fraasch founder of this organization was not in attendance. This is a new organization in Pittsburgh. Kelly is a parent who experienced the NICU with her daughter’s birth. She is representing her organization as a member on PPPCC.  She has donated a 1800 line for phone calls regarding the taskforce to be filtered through to Meghan’s Phone. The website for her organization is www.parentresourcenetwork.org.
3. Tribune Review Story – Carol May updated us stating that journalist Louis Fabergas spent 5 days with Carol, followed one patient’s journey and spoke with two bereaved parents as well as with Joanne Wolfe from Boston for his story. There is no publish date yet but it will be a Sunday Newspaper article. Carol is going to ask him if he can put our website and the state website at the end of the article.   Also, Guy Wathen the Photojournalist is still working with Carol and asking to spend six months with her for his story. She will update us as things progress.                                                                                                       
4. Speaker’s Bureau

                                                              i.      Jane handed out sheets for people to review and to use to list topics that they would be interested in presenting.

                                                            ii.      We discussed putting this form on the blog for people to fill out to give everyone an idea of what topics are being covered and to spark ideas for topics. This is an ongoing process to be discussed further at future meetings

5. Website – Tony and Jane

                                                              i.      www.pppcc.net

We discussed updating the website with the following format:

                                                            ii.      Welcome page – mission, vision, what we are doing now, statewide info.

                                                          iii.      2^nd screen – palliative care and end of life or just palliative care?

1.      World health Organization statement?

2.      End of life as a piece but not synonymous with palliative care

3.      maybe list as a “broad range of services including….statement about end of life  or as a child approaches end of life.

4.      include uniqueness of pediatric palliative care

                                                          iv.       Should there be a “History of the Coalition” on the site? YES – with separate links to each thing.

                                                            v.      Resource Map – group voted to keep it, but make it linkable. For now Helping Hands Healing Hearts will be the link snce their entire website is resources for families.

                                                          vi.      Should there be another section to list grief support – YES.  Helping Hands has this already, so would we be reinventing the wheel?  Maybe put a link to the Helping Hands site and then list where there are grief groups, link to Good Grief, links to other local resources (Compassionate Friends)

Any copy of any text, e-mail to Tony and he will integrate into site

                                                        vii.      We also discussed whether information on website should be broken into the public site and a members link for professionals to access for the blog and other professional information. Another option is to maintain the two separate sites we have now. This is an ongoing discussion.

                                                      viii.      Tony discussed changing the site design to pastel colors and butterflies rather than vines.  He felt the pastels and butterflies would be a more positive visual picture “sharing of life”. He is looking for suggestions on layout and format.

                                                          ix.      Tony and Meghan will meet to change the website for immediate use for families who will receive our letter about the taskforce.

6. Tools for Families

                                                              i.      My Wishes

1.      Meghan ordered 25 copies of “My Wishes” for Kids.  She will have these at the next meeting.  They are available on line at www.agingwithdignity.org/mywishes.html

                                                            ii.      Care Plan Books

1.      different examples were shared

a.       All About Me – Akron Children’s

b.      Seattle Children’s

c.       Washington Children’s

d.      Western Reserve

e.       Children’s Hospital Oncology Department Family handbook (section for business cards)

2.      subcommittee (Dorothy, Christy Myer, Laura Partridge, Donna; Jane will check to see who else is on committee)  to continue to work on development of own Care Plan books using these others as examples.  We can put it on website for families to download. 

3.      Dorothy will contact someone regarding “Gems of Care” – IPPC

7. Akron Conference – Will be discussed next meeting
8. Update on HCR Panel – Will be discussed at next meeting
9. Lifespan legislation – Mary Jo

                                                              i.      LifeSpan legislation was passed, now need the funding

                                                            ii.      MJ working with Senator Spector

                                                          iii.      When funded, states must apply for funds.  3 to 5 states will be funded in first year, then so many each year after until all 50 states are funded.

                                                          iv.      Process –agency applies for funds, must work with state coalition and ADRC. Agency must co-apply with these other agencies.  This is a broad spectrum of respite and providers for all ages and all disabilities.  Parameters involve reimbursing families, providers, recruitment.  Everyone must work together.

                                                            v.      94.8 million dollars for national lifespan respite

                                                          vi.      November 30, 2007 – Lifespan Respite Summit in Harrisburg – Jill Kagan will be there.  She will talk about legislation, etc. to bring the funding to PA.

                                                        vii.      Oregon, Nebraska, Wisconsin, and Oklahoma will most likely be the first states awarded as they already have state-funded respite

                                                      viii.      PA needs to get in place for next cycle.

                                                          ix.      For more info – ARCHRespite.org – link to National Coalition and legislation

                                                            x.      Spector ready to take this to the Senate Floor

10. 501c3 – Will be discussed at later meeting

2. Statewide Taskforce
   1. Letter

                                                              i.      Draft distributed – needs some changes.  Meghan will re-do and distribute.  It was suggested to print out application and include with letter.  Everyone should then copy and distribute to families.

                                                            ii.      Meghan is talking to organizations regarding distribution of letter

                                                          iii.      Letter will be put on website

2. Statewide co-chair meeting – 1^st week of December – applications should be turned in by then. Co-Chairs will be reviewing applications and placing applicants into subcommittees according to their top three choices of interest areas listed on application.
3. Statewide Taskforce meeting – Saturday January 12 from 9 – 4:30 at Holiday Inn, Harrisburg East

                                                              i.      12 topic subcommittees –  Applicants choose top 3 areas of interest on the application. Each applicant will be placed on one subcommittee

                                                            ii.      Subcommittees will also look at age differences in relation to palliative and hospice care service needs.

                                                          iii.      Each subcommittee will write a subchapter for overall report

                                                          iv.      Need families and providers for committee

                                                            v.      5 co-chairs – Meghan and Carol are 2 of the 5

                                                          vi.      Transportation

1.      $1200 - $1500 for 1 coach bus with bathroom.  This includes driver gratuity.  Bus can hold 55 people. (Approx. $30/person)

2.      Laidlaw can provide a school bus for $600

3.      we would need pick up and drop off site (maybe TCI or church in Fox Chapel)

4.      Helping Hands may be able to subsidize for people with hardships. 

5.      Renting vans was discussed, but the liability is too high.

Next Meeting:  Thursday, November 29 TCI from 9-11.

Note time change due to Uma Ramaswamy attending -

Suggested there be one more meeting before 1/12