Karol Sobon’s Post

“School holidays are the "loneliest time." Caregiving Youth are even more isolated during the summer when school is out. This recent BBC article (https://lnkd.in/eKWNt9sZ) highlighted young carers' challenges during summer break. The situation is the same for kids who are caregivers in the US. With schools no longer providing structure, caregiving hours often increase for these young people. This increase in responsibility can lead to social isolation, emotional strain, and difficulty managing their own well-being. Unlike the UK, the US lacks formal government support systems for Caregiving Youth. They aren't recognized as a distinct population with unique needs due to their age and student status. There are glimmers of hope. A recent US Government Accountability Office survey (results pending) is exploring this issue. The Senate Lifespan Respite Care Reauthorization Act (S. 4325), introduced by Senator Susan Collins and Senator Tammy Baldwin, expands the definition of family caregiver to include Caregiving Youth. Additionally, National caregiving advocacy organizations like ARCH National Respite Network and Resource Center, Rosalynn Carter Institute for Caregivers, National Alliance for Caregiving, and National Health Council are beginning to join us in raising awareness about this issue. We've received notable national media coverage from the TODAY Show, Wall Street Journal, USA Today, FOX News Network, and others. We need to do more. As Saul Becker - Carers Trust Ambassador wrote last year: "Why isn't the USA learning from the positive policies, services, and interventions for young caregivers in other countries?" "Why are young caregivers in the USA still largely invisible, hidden, and ignored? For these children, this amounts to punishing them for caregiving. Why would any country want to do that to its children and young people?" ### American Association of Caregiving Youth (AACY) Connie Siskowski, RN, PhD Feylyn Lewis, PhD Brian Duke Andy McGowan

Caregiving makes it possible for people with disabilities to live full, independent lives. Easterseals stands with the 82% of Americans who believe accessible care should be a national priority, as families should not have to shoulder the financial and emotional burden without assistance. Not only does increasing access to care improve the lives of caregivers, but it also uplifts our economy. A recent survey found that 67% of caregivers reported caregiving has impacted their personal finances. Furthermore, 33% of people–especially women–have had to leave a job because of caregiving responsibilities. Caregiving benefits help make work more feasible, reduce employee turnover rate, and can be a critical factor for many when deciding whether or not to accept a job offer. That’s why Easterseals is working to provide for caregivers nationwide. Additionally, we are proud to offer our Respite Services and Caregiver Support program, which provides much needed support to our communities’ deeply valued caregivers. #CareCantWait Learn more about the data-driven case for caregiving here @Pivotal Ventures: https://lnkd.in/gyuCUigh

💫 Our next Reimagining Child Care (RCC) Research Study Grantee Spotlight is Economic Security Project (ESP)! ESP advocates for transforming the economy through innovative campaigns, interventions, and research. ESP’s Cash as Care campaign promotes guaranteed income for care providers and families, advocating that cash is necessary to transform the care ecosystem and is a fundamental determinant of health and well-being.    The RCC Research Study, funded by RWJF, tells the story of ESP’s Cash as Care work. This initiative is shifting the narrative around care by promoting the idea that guaranteed income supports parents and caregivers. ESP is mobilizing individuals through community engagement and events, organizing public support by building coalitions and partnerships, and positioning cash as a core component of the care movement by demonstrating its benefits and fostering collaboration among funders and policymakers. Within these efforts, ESP also deeply ties in the role cash plays to promote health and well-being for carers. These efforts aim to integrate guaranteed income into broader care infrastructure and policy.    ESP’s Cash as Care Campaign: https://lnkd.in/emHgunv3   RCC Research study: https://lnkd.in/gfGjx9b9 #childcare #RWJF 

“Families struggling to afford home care leading to more youth caregivers: advocate Connie Siskowski, RN, PhD, president of the American Association of Caregiving Youth (AACY), said the economy and an aging population needing more complex care has led to more youth caregivers.” 'Families struggling to afford home care leading to more youth caregivers' | America Reports | Fox News Media | Video link: https://lnkd.in/eb9KS2Wz Our Personal Take: The Growing Crisis of Youth Caregiving continues Gaining National Media Attention (and Here's Why That Matters) We are encouraged to see the increasing national conversation around Caregiving Youth. More and more people are recognizing this critical issue, from the recent Wall Street Journal article to the WPTV feature, the recent GAO survey (results pending), our partnership with Rhode Island Department of Education, and more – including the increase of changemakers, healthcare leaders, and others interacting with us through social media. Why national and local news coverage matter: Awareness: Increased media attention brings Caregiving Youth into the national spotlight. This helps educate the public about young caregivers' challenges and the need for support. Advocacy: Media coverage is a powerful tool for advocacy. It can spark conversations with policymakers, leading to identification, legislation, and funding for programs that support Caregiving Youth. Funding: Increased awareness can lead to increased funding for resources and support program development for young caregivers at school, at home, and in their communities. AACY relies on individual donors and grants for funding. There's still much work to do. Join us. ** Connie Siskowski, RN, PhD Elizabeth (Betsy) Olson, Feylyn Lewis, PhD, Melinda Kavanaugh, PhD, LCSW, Hannah Hutler-Boyd, Andy McGowan, Brian Duke

“The needs of caregivers in rural areas are acute and it’s time for a reinvestment in our social care infrastructure.” Jennifer Whittaker, PhD, marking this year’s #NationalRuralHealthDay, outlines what a caregiving agenda could mean for rural Pennsylvania in a new blog post and details policy actions that could positively impact rural families and communities. #PowerOfRural https://lnkd.in/e7uytGbN

This fall, the Surgeon General released a report on American parents' mental health and well-being, and IT IS NOT GOOD. For #NationalRuralHealthDay, I write about how many of the contributors — like parental social isolation, financial strain and economic instability, and lack of access to mental and behavioral supports — are felt in unique ways by families living in rural PA. Caregivers everywhere need a #caregivingagenda that includes: -Paid family and medical leave -Investments in affordable and high-quality child care supports -Increased direct economic supports alongside investments in social programs -Expanded access to mental and behavioral supports for caregivers -Investments in vibrant public spaces and social infrastructure

I have been saying “Adult Day is the Future of Senior Care” for a long time now. However, it mostly falls on deaf ears . . . until now! Today’s story in our local paper is proof that more people are becoming “aware” of adult day and the many benefits it has to offer. As I think about the future of long term care, we are entering an era of significant change. There will be way more options, more payer sources, and greater variety. You’ll have traditional care options fighting against the change. You’ll have others who are super innovative. You’ll have some states that continue to over regulate long term care. Other states will fund new care innovations. Regardless, for every product or service that exists there is an adoption life cycle. The adoption life cycle for adult day will take place in these five stages. 1. Awareness (*we are here*) - Small underground attention - Obscure media attention (primarily local) - High skepticism - Lack of providers 2. Early Adopters - Increased acceptance by families and other senior care providers - Additional media attention (regional distribution) - More provider options available - More family caregivers frequently using adult day 3. Early Majority - Multiple adult day providers reach large regional markets - More prominent national media attention - Increased standardization across states and regions - Adult day becomes more mainstream (mentioned in most long term care conversations) 4. Late Majority - Adult day is mainstream - Large national media coverage - Big investments made in adult day (mergers, acquisitions, consolidations) - Multiple large adult day providers 5. Skeptics - My favorite people. . . the skeptics! Lol. This is the stage when all the skeptics raise the white flag and finally accept the fact that Adult Day is a mainstream solution. The last 40 years adult day has lagged behind “almost dormant” and primarily serving young adults and seniors on Medicaid programs. However, due to an exponential increase in the cost of care, cost of living, decrease in pension programs, stagnant wage growth, inflation, adult day has become an extremely attractive option for the middle market who historically relied on home care or assisted living. Over the next 5 years, I predict the long term care option known as adult day will transition from an awareness stage to the early adopters stage. As the caregiving burden increases and the responsibility falls on a fewer number of family caregivers, flexible daytime care options will become increasingly more important to meet the needs of families caring for a loved one. This is just the beginning. Adult day is the future of senior care!! ActivAge is coming to a city near you! Join the movement and together we can change the world!! #adultdaycare #seniorcare #longtermcare #costofcare #affordability #homecare #seniorliving #futureofcare #adultday #familycaregivers

NEW SURVEY from AARP New York: 75% of NYC #caregivers are stressed financially and emotionally because of increased expenses they incur while caring for a loved one, while balancing work responsibilities and home duties. #AARPNY survey of 1,345 registered voters age 40-plus showed that unpaid family caregivers expect more support from the state. @govkathyhochul and the State legislature needs to allocate more funding for services our loves ones deserve. AARP New York is advocating for the following in the final 2024-25 state budget: Eliminate Waiting Lists, Increased Transparency of the waiting lists and more Nursing Home Oversight. Our loved ones deserve to receive quality care! Read more: https://lnkd.in/ekjNaXwn #caregiversupport

Who Are Caregiving Youth? Caregiving Youth are young people under the age of 18 years who provide care or support for family, relatives, or household member(s) of any age who require assistance due to chronic (3 months or more) illness, age-related decline, disability, or other health condition. There Are over 5,400,000 Caregiving Youth in the U.S. -More than 70% assist a parent, grandparent, or great-grandparent. -Many care for disabled siblings or other family members. -34% help more than one person in the household. Source: Caregiving in the U.S. 2020 – AARP Research Report – National Alliance for Caregiving (National Alliance for Caregiving) and AARP. Why Should We Care? Caregiving for a loved one is among the most demanding, challenging, and rewarding human activities. Although children are commonly thought of as the recipients of care — rather than the givers — children all over the world participate actively in caregiving every day. The U.S. does not yet have formal policies or support systems in place for these young people as we do for adult caregivers. Furthermore, schools do not typically identify or provide support for Caregiving Youth, which puts them at risk for academic, social, and emotional challenges.