|
On May 27th, almost 70 people gathered at the Rivers Casino representing families and their children to discuss challenges, concerns, recommendations and resources to help their loved ones at different stages of their lives on a variety of topics. Vision for Equality and Philadelphia Coordinated Health Care (PCHC) collaborated to jointly host this inaugural “Supporting Families” Event. It included a multi-disciplinary panel moderated by Melissa DiSipio, PCHC Director. Melissa started by outlining the agenda for the day and describing the panel. She also explained the services of Philadelphia Coordinated Health Care (PCHC) as the Southeast Region Health Care Quality Unit (HCQU) and how they can support families in Philadelphia and the surrounding counties.
The integrated panel participants started with Maureen Devaney (Co-Director, Vision for Equality), who provided an overview of the history of Vision for Equality and the long-standing challenges for families registered in the Intellectual Disability System in Philadelphia. Marjorie Anderson shared a heart-felt story about her daughter who has disabilities and the time and care it takes to support her. She also described the sibling relationship with her son and his future feelings about care-taking needs and responsibilities. Marjorie helped set the tone for the panel and the day perfectly by being honest and open about her concerns as a parent.
Ana Pacheco, explained her new role as the System Navigator for Vision for Equality in conjunction with IDS and talked about the importance of registration. Justin Gagnon, Nursing Services Consultant, SE Region ODP stressed the importance of long-term planning for individuals and end-of-life decision making discussions for families and teams. Amy Nemirow, the SE Region ODP Clinical Director talked about the importance of clear and open communication with teams regarding “dual-diagnosis” issues. She also explained the use of “Telehealth” for Behavioral/Mental Health and how to access it.
After lunch, David Gates discussed a short presentation alongside Maureen and Ana explaining the recent general cuts to the federal share of Medicaid which may necessitate state cuts to waivers and general Medicaid services. The federal Medicaid cuts that pose the greatest risk to waivers will be felt starting in the state fiscal year starting July 2027. David reminded the audience of things people can do now to organize to fight these cuts, both at the state and federal level.
During the “Question and Answer” session with the event attendees, resources were shared with the group. Some of the questions and concerns expressed by the audience included finding competent and committed support staff and developing a long-term plan to improve the system. There were also additional questions about the impending changes to Medicaid and how to navigate complex medical issues with insurance. All of the panel participants stressed the importance of “Advocacy” and offered suggestions and ideas to family members. The group decided that this would be the first of meetings “yet to come”! So, if you missed this meeting and want to get involved, please stay tuned for future meetings. We will continue this collaboration going forward to give a voice to families for these issues.
Reflections and Highlights by: Melissa DiSipio, PCHC Director
| 
