Development of a National Center for Pediatric Palliative Care Homes
to Fill the Gap in Unmet Overnight Respite and Children’s Care Needs
Open Letter of Support
July 31, 2023
To Interested Stakeholders, Thought-Leaders, and Supporters:
We are a coalition of existing and emerging freestanding Pediatric Palliative Care Home programs (“Like Houses”/”Children’s Respite Homes of America”), predominantly 501(c)(3) non-profit organizations from across the United States that are bound together through a shared passion that families in our communities critically NEED us. We believe that by supporting a National “Center of Excellence” Leadership initiative, we can leverage strategic and operational best practices, shape a conceptual framework, facilitate consensus, craft guidance for messaging, and champion evidence-based research that will inform federal and state advocacy priorities to amplify a shared voice and seat at the table for decision making.
Helen House opened in 1982 in Oxford, England and began the global community-based Children’s Palliative Care Home movement. To qualify for services means your child is not expected to live a long life. The goal is to connect with a family the moment they discover their child has a life-limiting or life-threatening condition, often at diagnosis, and then support the entire journey by providing much needed All-Inclusive Care, including respite, palliative care and, when needed, end-of-life hospice services. Although often referred globally as a “hospice home,” typically less than 20% of the services are for end-of-life care. The majority (80%+) is often providing planned overnight respite and palliative care support for children with life-threatening conditions and their families.
Momentum is building amongst our “Like House” coalition. A handful of U.S. communities are already operating this care model; George Mark Children’s House (opened 2004), Ryan House (opened 2010), Crescent Cove (opened 2018), and A Rosie Place for Children (opened 2010) successfully providing overnight respite services, and Almost Home Kids (opened 2009) providing transition services and respite. Together, we have served thousands of children and families with much needed overnight respite or end-of-life services. To achieve the same penetration as the United Kingdom, our U.S. population would have 266 homes. Thankfully, there are another 15+ emerging programs already in development, many having secured 501(c)(3) status. We are continuing to grow our coalition and plan to add additional programs on an ongoing basis.
While family homes are an ideal environment, there are many competing forces that increase pressure on family caregivers and raise the critical need for supplementary out-of-home solutions. These include universal nursing staff shortages particularly hitting pediatric home health, advancements in medical care leading to longer lives for children with life-threatening conditions that extends home care which families need to support, and the compounding of insufficient reimbursement financing and payment methods to compensate providers pushing a reliance on philanthropic rescues or no help.
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Development of a National Center for Pediatric Palliative Care Homes to Fill the Gap in Unmet Overnight Respite and Children’s Care Needs
Benefits of National “Center of Excellence” Leadership:
Existing house stakeholders are eager to contribute information, insights, and data that can be combined into a collective knowledge base and disseminated to enhance adoption, implementation, and scaling of this care model to improve quality of life in more communities.
Our shared priorities include the following:
Standardizing definitions - facilitating consensus and crafting guidance for messaging and alignment to help positioning and policy.
Championing evidence-based research - developing and executing evidence-based research study plans to impact and support policy changes (licensing and reimbursement).
Shaping the conceptual framework - "business plan" – draw from global best practices to provide the local adaption guidance emerging communities desperately seek.
Advocating – developing strategies and priorities to inform State & Federal legislation and policy efforts to achieve Medicaid reimbursement for sustainable operations.
We are in support of the creation of a “Like House” National Leadership team. Each of our programs is willing to participate and share relevant local metric data, best practice insights, and operational guidance within our capacity for the purpose of developing a national knowledge resource center that will support our collective objectives and priorities.
Existing U.S. “Like Houses”:
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