Program for Children and Youth with Special Health Care Needs

As we head into a few days of rest with friends and family,?our program team is feeling grateful for this community. We want to express our thanks to every one of you for continuing to advocate for and work toward?improving health care systems for children and youth with special health care needs. We are honored to support, partner with, and work alongside you. ?? https://lnkd.in/gH4_BzSn

In the final week of #NationalFamilyCaregivingMonth, we're sharing an opinion piece written by Meg Comeau, MHA, of the Boston University School of Social Work. Meg reflects on two commonly used terms for measuring children’s quality of life and family well-being: “family burden” and “complexity.” As a professional in the field of children with medical complexity (CMC), and a parent of a young adult born with a complex genetic syndrome, Meg states that, “... ?????????? ?????????????? ?????? ?????? ???????????? ???? ???? ?????????? ???? ?????? ???? ???? ???????????? ??????????????. ???????? ?????? ?????? ?????? ???????????? ???????????? ???? ???? ?????????????? ???????????????????? ????????????????????????????????. ???????? ?????? ?????? ???????????? ???? ???????????????? ???? ?????? ?????????????? ???????? ???????????????? ????; ?????? ?????????????? ???????? ?????? ???????????????????? ???????????????? ???? ?????????????? ????.” Read the full article: https://lnkd.in/gKzqQHdU

The November 2024 CYSHCN Network Newsletter highlights a new online course about language access in health care, the final virtual cafe in the Future of Care for Children with Medical Complexity series, events focused on family engagement, a look at a new Medicaid benefit in California, and more. ?? ???????? ?????? ?????? ??????????: https://lnkd.in/gK8P6CMS Subscribe: https://lnkd.in/gDNc7WWR

As we continue our participation in National Family Caregivers Month, we’re sharing an issue brief from NASHP | National Academy for State Health Policy that describes how different states are strategizing to support family caregivers of children and youth with special health care needs (CYSHCN). States such as Colorado and Oklahoma are implementing programs to meet the unmet health and social needs of caregivers, from alleviating financial burdens to providing mental health resources. Read more about these family support services:?https://lnkd.in/g2UBWQzb

Don’t miss "The Future of Care for Children with Medical Complexity Virtual Café #6: "Sustainability and Strategic Partnerships" on ???????????????? ?? ???? ?????? ????! Richard Antonelli. MD, MS, FAAP, Jeffrey Schiff MD, MBA, FAAP, from AcademyHealth and Meg Comeau, MHA, from the Center for Innovation in Social Work & Health at BU School of Social Work will discuss a strategic yet practical perspective for advancing sustainable care coordination / integration. They will also share a pragmatic approach involving a series of small steps that result in radical changes over time and emphasize the key role of collaborative leadership with families in sustainability efforts. Join the discussion to learn strategies for making progress towards meaningful sustainability and strategic partnerships in systems of care. This event is the sixth and final installment of an interdisciplinary virtual café-style series led by the Center for Innovation in Social Work & Health at BU School of Social Work. This work is funded by the Lucile Packard Foundation for Children's Health. ? ???????????????? ?????? ???????? ?????????????? ??????é ??????????: https://lnkd.in/geFxaWX7 Interested in past cafes? Access recordings and materials here: https://lnkd.in/gSATfYQP [Image Description: Accompanying image is from the event webpage for “The Future of Care for CMC Virtual Café #6.” The image is of a father and son sharing a moment of joy and laughter in an outdoor setting. The son is in a wheelchair, wearing a blue long-sleeved shirt, and has dark brown hair. The father is wearing a colorful, plaid button-up shirt and has light brown hair.]

Continuing our participation in National Family Caregivers Month, today we’re sharing a project spearheaded by one of our grantees. Children Now's Caregiver Advocacy Circle is a community of caregivers in California who support each other in their children's health advocacy efforts. Through the Circle, Children Now supports caregivers as they participate in state-level advisory groups and engage in policymaking opportunities. Children Now offers technical assistance and guidance on navigating discussions and decision-making processes, empowering caregivers in their advocacy work. #NationalFamilyCaregiversMonth #NFCMonth #familycaregivers Learn more about the Caregiver Advocacy Circle: https://lnkd.in/e7EJeeaK

"Families need to be viewed as colleagues in not only their child's care, but in policy and program development, implementation, and evaluation. A core foundation of family-centered care." This insight was shared at the first café in “The Future of Care for Children with Medical Complexity Virtual Café Series” led by the Center for Innovation in Social Work & Health at BU School of Social Work. Café #1: “Where We Are Now and Where We Need to Go” provided an overview of key topics, frameworks, and emerging trends to advance the quality of life and well-being of children with medical complexity and their families. The insights, family-driven priorities, and actionable ideas from this rich discussion between family leaders and health care professionals were captured in 3 products: 1.??????? ???????????????? ?????????????????? 2.????????? ??????????????????????? 3.??????? ?????????????? ?????????????? (featured below) Visit our resource page for Café #1 to explore these products and view the café recording. This work was supported by the Lucile Packard Foundation for Children's Health. https://lnkd.in/gSATfYQP

Families and advocates: Is your child with complex care needs eligible for Supplemental Security Income??Do you know how to file for benefits or appeals for denials??Check out this workshop on Wednesday from?Support for Families of Children with Disabilities?and?Disability Rights California. ?????? ?????????????????????? & ???????????? ?????? ???????????????? ?????????? ???? ?????????? ?????? November 13 @ 6-7:30 pm PT https://lnkd.in/g7cUdiQG

Family members of children and youth with special health care needs (CYSHCN) often become full-time caregivers. There are many contributing factors, including a shortage of high-quality home nursing care, insufficient insurance coverage for home-based care, and lack of flexibility in parents' jobs. In fact, 20% of parents of CYSHCN must reduce their work hours or leave their jobs altogether to manage care for their child. This can create significant financial challenges for families.? In honor of National Family Caregivers Month, over the next few weeks, we'll be sharing research and resources related to family caregivers, especially on the issue of paid family caregiving. To kick us off, this webinar recording provides an overview of the relevant laws, proposed models, and potential policy solutions related to paid family caregiving for children with medical complexity:? https://lnkd.in/gkY55XJN #NationalFamilyCaregiversMonth #NFCMonth #familycaregivers?

Timely opinion piece from California Health Report's disability rights columnist Jennifer McLelland on the potential impact of today's election on the Affordable Care Act and what that could mean for families of children and youth with special health care needs (CYSHCN). The Lucile Packard Foundation for Children's Health supports solutions journalism focused on CYSHCN. https://lnkd.in/gXS9_Cbw?