ANZMES (Associated NZ ME Society Inc.)’s Post

New rule re: healthcare and Section 504 from HHS. From an accessibility standpoint, it addresses digital accessibility (website, mobile, and kiosks) and medical device accessibility, telehealth and home care, and more.

This is an important read. Even here in California where services for people with IDD are supposed to be fully covered under the entitlements outlined in the Lanterman Act, we are seeing long wait lists ("referral lists") due to low reimbursement rates leading to low pay rates for Direct Service Professionals (DSPs). This is causing serious staff shortages. And now, there is a proposal to further delay rate increases here in California. How can we not prioritize the needs of one of the state's most vulnerable populations? THIS HAS TO STOP! #DSP #directsupportprofessional #IDD

Here is the final rule.

Did you know? In many countries, diabetes is recognized as a disability. 🌎 This can give access to essential benefits, like better healthcare and job protection. 📊 With over 37 million people in the US diagnosed with diabetes, understanding your rights can make a big difference. 💪 Learn more and protect your future! #goodhealthcare #country #disability #benefits #rights #difference #right #understand #access #diabetes Read the full article now👉https://loom.ly/dyn7iOI

Together with our Health and Social Care Professionals (HSCP) colleagues we have repeatedly identified systemic failures within the roll out of Progressing Disability Services  that are placing children, families and staff at risk. We have called for appropriate consultation and meaningful engagement with services, children and families, clinicians and professional representatives to ensure that concerns raised would be addressed. We have engaged with the HSE, Department of Health, Disability Operations, including the National Improvement Lead for Disabilities, Disability Clinical Care Programme and Ministers, and have made key recommendations to support positive change within Children’s Disability Services. We are concerned that engagement by the HSE with our professions has been tokenistic, with no meaningful outcomes to date. The promised changes have not been implemented within the last 2 years and risks continue to escalate. This is extremely alarming. https://lnkd.in/eaCTmHe6

From a patient experience perspective, this is good news for patients with disabilities. But 50 years in the making through advocacy… patient experience leaders, advocates, and followers, let’s not allow decades to pass before making real changes to how patients experience healthcare. #hhs #ada #healthcare #healthcarediscrimination #disabilities #access #healthequity #patientexperience https://lnkd.in/eWzf3Qb4

Lack of disability data impedes healthcare equity: Addressing the absence of health data on people with disabilities is the essential first step health systems and policy makers can take to reduce care inequity and improve outcomes for this population: https://lnkd.in/ggJfBZcy

#NDIS Flawed Consultation Process After-the-Fact Announcements: #Reforms & initiatives are often announced only after decisions have already been made, #undermining the value of any subsequent consultation. This approach suggests a top-down decision-making process rather than a genuine partnership with the disability community. Tokenistic #Consultations appear to be more of a formality rather than a substantive engagement. Feedback from individuals & representative groups may not be meaningfully incorporated into the final decisions. Lack of Transparency. The specific methods & #outcomes of consultations are often not clear. There's limited visibility into how feedback has influenced decisions, if at all. Representation Issues. The selection of Disability Representative & Carer Organisations DO NOT capture the diversity of voices within the disability community. Smaller or less well-connected #organizations & individuals may feel excluded from the process. Speed of Implementation. Announcing significant changes without adequate lead time can create anxiety & confusion among participants & their families. There needs to be a clear & detailed roadmap for how changes will be implemented & how current participants will be supported through transitions. Improved planning processes should be participant-centered, not just administratively efficient.Participants should have real control over their plans & funding. #Lifetime Planning Approach. Transparency & flexibility are crucial, but this must be matched with a commitment to regularly review & adapt plans to the changing needs of participants. Clear criteria & transparent decision-making processes are #essential to avoid arbitrary or inconsistent outcomes. Participants & their families should be involved in these decisions. There needs to be clarity on what constitutes "evidence-based" & how these supports are identified & validated. Participant #experiences & preferences should be considered alongside empirical evidence. Provider Fraud & Non-Compliance. Efforts to combat fraud are necessary, but they should not come at the cost of creating additional #bureaucratic hurdles for genuine participants & providers. There must be a balance between oversight & flexibility. Engage with the #disability community before finalizing decisions to ensure their input genuinely shapes the outcome. Use a variety of methods to gather feedback, including surveys, focus groups, and public forums. Publish detailed reports on how consultations were conducted, what feedback was received, and how it influenced the final decisions. Ensure these reports are accessible to all stakeholders. Marie J. Mark Sweeney Graham Taylor Samantha Connor Peter Gregory Jarrod Sandell-Hay Shirley Humphris https://lnkd.in/gsDUaszX

Intersection of long COVID and disability highlighted in CDC study The data show that nearly three million Pa. adults reported being disabled, costing the state $42 billion dollars a year in health care costs By Hanna Webster Just as coronavirus transmission fluctuated in waves, so too have our responses to it. The world is four years from the acute phase of the pandemic, but not without lasting impact — including those who have maintained debilitating symptoms from COVID, adding to a large population of people with disabilities. This is highlighted in a new, large-scale study conducted by the Centers for Disease Control and Prevention. The data, released July 16, found that more than one in four adults — over 70 million Americans — reported having a disability in 2022. The largest study conducted by the CDC to capture the scope of disability in the U.S. and representing 245 million people, the authors found that nearly half of those over 65 reported being disabled, and that long COVID symptoms were present in 11% of those who reported disabilities, versus 7% of those without disabilities. Researchers are learning more about the mysterious condition of long COVID as the nation moves further away from the acute stages of the pandemic, which has killed an estimated 7 million people worldwide, and 1 million in the U.S. alone. The CDC has calculated that of those who survive, up to 35% qualify as ever having long COVID, which can be characterized by several symptoms such as brain fog, fatigue, dizziness, weakness, headaches and a rapid heartbeat. “For the first time, we’re so pleased to be able to present data by disability status on the presence of long COVID at the state level and at the national level,” said Joseph Holbrook, team lead for the CDC’s data and health science team, who worked on the study. “States can use this information to understand the health status of their population with disabilities and to tailor state programs for people with disabilities.” Continued....please click on banner below to access and finish reading this piece. Posted by Larry Cole