SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders’ Post

You don't want to miss out on our August ALS Learning Series Learn how to effectively advocate for yourself and communicate with your ALS care team in this special session led by Dr. Ambereen Mehta and Dr. Suzana Makowski, experts in ALS palliative care. Designed for people living with ALS, their families, and caregivers. This session will offer practical tips to ensure your voice is heard and your needs are met, promoting a team-based approach to care. https://buff.ly/3WFWtta

ALL TOGETHER NOW! But seriously, as therapists, we all need to be practicing empathy, patience, and compassion even for our more challenging patients. But for those who reallllllly make us want to scream and shout, how do we stay grounded and keep our cool? Clinical supervisors, what's your best advice for working with patients who can get a bit...rowdy? Drop it below. Make sure you all follow @kategoch_rdh for more awesome posts like this! #clinicalsupervision #clinicalsupervisor #lmft #lcsw #supervisionsimplified

Ready to tackle the rising challenge of verbal escalations in healthcare? Learn how to encourage safe environments for employees and patients with insights from Children's Hospital Colorado. Join us as we recap the highlights from our recent Pediatric Collaborative, featuring Shawna Grissom, MS, CCLS, CEIM, CPXP and Shelby Chapman. Learn how to implement de-escalation measures, foster deep connections between patient families and employees, and more. Don't miss out on valuable strategies and lessons learned! Read more and watch the full presentation at https://bit.ly/3WdeJeL #PediatricHealthcare #HumanUnderstanding #PatientExperience

"Planning for the end of our lives is just as important as planning how we want to live our lives." This Advance Care Plan Day #ACPDay2024 Tracy Reed, Clinical Lead for End of Life Care at EPUT, explains what an Advance Care Plan is - and why every adult should think about creating one. Read more: https://lnkd.in/dGkQhkPW #DyingMattersAwarenessWeek

Children with medical complexity often have substantial medical needs and their caregivers must make many challenging care decisions. Over time, caregivers tend to become more involved in decisions, but until now it has been unclear what skills they develop that facilitate this engagement. #SKResearch led by Dr. Kate Nelson in the Journal of Pain and Symptom Management finds that parents of children with medical complexity change how they approach decision-making as they learn more about the health-care system and their child’s condition(s). This also results in strong relationships with providers and a greater sense of agency and confidence. Nelson hopes that knowing the specific skills parents develop to support their family and child with medical complexities may inform future interventions to support skill-building and empower new caregivers. Read ➡️ https://bit.ly/3zbauH5

Sometimes clients need more support than what can be provided in therapy. And it’s up to you to determine when to make a referral to a higher level of care (HLOC). Fortunately, with Rula, you don’t have to navigate this process alone. Our platform provides opportunities to connect with other providers who understand the HLOC landscape so that you never have to worry about making decisions in isolation again. Plus, our care coordinators can help lift the administrative burden of making a HLOC referral so that you can continue to focus on providing exceptional care for your clients. Learn more about becoming a provider at Rula here: https://lnkd.in/gzqJeNvQ

Empowering Families with Knowledge 𝐓𝐡𝐞 𝐒𝐨𝐜𝐢𝐚𝐥 𝐌𝐨𝐝𝐞𝐥 𝐕𝐞𝐫𝐬𝐞𝐬 𝐓𝐡𝐞 𝐌𝐞𝐝𝐢𝐜𝐚𝐥 𝐌𝐨𝐝𝐞𝐥. → Let's break it down: The Social Model: → Focuses on lifestyle and community → Offers limited assistance, like medication management → Emphasizes independence with minimal care support The Medical Model: → Prioritizes high levels of care, including skilled nursing → Provides comprehensive assistance, including mobility support → Tailored for those needing extensive help with daily activities → Some facilities boast an "enhanced license," signifying their ability to offer more than basic care services. This distinction is crucial for families seeking the right level of support for their loved ones. → The challenge? Understanding a community's capabilities and limits. Assisted living facilities often assist with daily activities but typically do not provide intensive care like wheelchair or hoist lift support, which is usually available in more medical-focused environments. → Our mission is clear: By comprehending the nuances between the social and medical models, we can streamline the selection process for families. → Ready to navigate the complexities of senior care? It starts with informed choices. Let's find the perfect fit for your loved ones together. We know the who, what, when, where, and how to make the process seamless. Reach out to us at CarePatrol of Connecticut & New York🫡

🚨 Advocacy Alert: Take Action to Fix Prior Authorization! 🚨 Medically necessary physical therapy services are being delayed, affecting patient outcomes due to lengthy prior authorization processes. The Improving Seniors' Timely Access to Care Act (H.R. 8702/S. 4532) can help by streamlining these processes, creating faster approvals, increasing transparency, and making it easier for healthcare providers to deliver the care older adults need. Please take 2 minutes to contact your representatives and ask them to cosponsor this critical bill. Your voice can make a difference in improving care for older adults and reducing delays!

The study’s authors recorded 39 conversations between doctors and caregivers to patients who were undergoing prolonged mechanical ventilation in intensive care units between 2012 and 2017. They coded transcriptions of the conversations across 17 categories such as caregiver health literacy, physician empathy (defined as “statements by the medical team that acknowledge caregivers’ emotions”); power differentials (defined as “deferral to expertise or position; dismissal or condescension); and missed opportunities for empathic responses (defined as “instances where the medical team failed to respond to the caregiver’s emotional statements.”) https://lnkd.in/ervQeQXu

If you're looking for memory care for a loved one, it's important that you learn as much as possible about each potential option. For instance, you should research and ask about each community's approach to clinical care and staff training. To learn more about questions you should ask when looking at memory care communities, visit our blog using the link below. https://bit.ly/49589d7 #eldercare #seniorcare