No family deserves to spend their holiday season in the hospital — especially a first one!
West Grove, PA-area parents Elizabeth and Greg Lambert welcomed twin sons Tate and Oliver on June 9 — several weeks earlier than expected. While baby Oliver was able to graduate from the NICU and come home mid-July, brother Tate had further complications and had to be transferred to the Children’s Hospital of Philadelphia (CHOP), where he remained until December 12.
Hearts for Home Care (H4HC) helped to increase awareness of Tate’s case through advocacy and media work so that Tate could get home in time for Christmas.
Unable to find in-home nursing care due to low state funding
Tate is diagnosed with PURA syndrome — a rare genetic disorder that affects the nervous system — and recently received a tracheostomy to help him breathe. While the Lamberts were able to secure some home nursing coverage for Tate, they were not able to get the round-the-clock nursing care he needs. Overnight coverage was especially difficult — which is unfortunately common in Pennsylvania and across the US.
“Home care providers cannot compete with hospitals and nursing homes that can pay a premium wage for harder-to-cover shifts like weekends and overnights. In-home nurses who work overnight shifts deserve to be paid a fair and comparable wage for the lifesaving care they provide to individuals and the peace-of-mind they offer to their families.”Hearts for Home Care Deputy Executive Director Laura Ness.
Like many other states, the State of Pennsylvania has not adjusted funding for private duty nursing (PDN) services in several years. Home care nurses’ wages come from state dollars, and those wages can’t keep up without action from elected lawmakers. Stagnated rates mean that families with medically-fragile children like Tate struggle to find the home care nursing coverage they need.
Why advocacy is so important
Advocacy plays an important role in public policy work today because many legislators don’t understand the importance that home care plays in their communities unless advocates take a proactive role in showing them. That’s why Hearts for Home Care exists: So that families, clinicians, and the larger home care community can share their voices as one.
Hearts for Home Care has seen many babies stay in NICUs long past their discharge dates because of the shortage of home care nurses. So getting Baby Tate home in time for his first Christmas was a major priority this season.
Public awareness is key
When a H4HC team member saw a post about Baby Tate on Facebook, we knew that media support could help the family bring Tate home. H4HC worked to connect with mom Elizabeth and local news outlets to secure coverage on the issue and maximize the number of nurses that would hear about Tate’s case. Within two weeks, five local outlets published articles about Baby Tate and his need for a nurse, including the Chester County Press—which featured Tate’s story on its front page. Tate’s story also made its way to the public via Hearts for Home Care social media, MyChesCo, West Chester’s local Patch, Vista.Today, and BucksCo.Today.
On December 12, Baby Tate officially came home to enjoy the holidays surrounded by his family, friends, and twin brother Oliver!
In addition to recruiting reliable and compassionate nurses for Baby Tate’s case, H4HC wanted to make sure that media coverage explained the need for better legislative and state support for home care programs. Without advocates’ collective voices, decision-makers in DC and across state capitals may not understand their role in accessible home care services for vulnerable residents.