East Bay Innovations’ Post

I'm really proud to have played a small part in the 2024 President’s Committee for People with Intellectual Disabilities Report to the President. The 2024 report focuses on HCBS and four issues that are critical to people with I/DD in community living: 1. Direct support professionals (DSP) and the DSP labor shortage crisis. 2. Employment and how employment of people with I/DD can be supported to advance competitive integrated employment in communities. 3. Community living and the additional critical supports to promote independence and community inclusion in the areas of housing, safety, technological supports, and transportation. 4. Federal supports and the impact of federal public entitlement programs, like Supplemental Security Income (SSI), Medicaid, and Medicare.

Here is my 411 for the start of a new year: 2024. January should be a time of reflecting on years past filled with accomplishments little or huge, people met or have gone, opportunities seized or missed… yet, something that will continue expanding is the NUMBER LINE that is called Medicaid Waiver services Interest list! The unprecedented growth of this list is for long term care services as found within Home and Community Services (HCS) — is considered about a 15 YEAR wait list. You read that correct. Or even Community Living Assistance and Support Services (CLASS) list - albeit shorter list in comparison to HCS. I urge you to call your zoned Local Intellectual Developmental Disabilities Authority Services (LIDDA) such as Harris Center or Bluebonnet Trails Community Services to place disabled person(s) name on the waitlist for (various) Medicaid Services. (Find yours in link below). It is your responsibility to keep up with specified interest list number and contact info annually! Here’s a list of all Texas’ LIDDAs: https://lnkd.in/gkrUa_gC

This #LearningDisabilityWeek we want to highlight the #TurningPoint60 object - DNACPR decision note, protecting the rights of people with a learning disability. ➡ The Covid-19 pandemic saw an increase in the number of DNACPR (do not attempt cardiopulmonary resuscitation) decisions being issued for people with a learning disability – without the involvement of them or their families. In March and April 2020, at the start of the pandemic, Learning Disability England found that 1 in 5 organisations had seen DNAPCRs placed in people’s medical records without consultation.  We couldn't let this continue. As Julie Bass, our Chief Executive said at the time: "It's not only illegal but outrageous that a doctor would decide not to save someone just because they have a learning disability. They have the same right to life as anyone else." 💙 📣 Together with Learning Disability England, we quickly published a free checklist and guide to support disabled people, families, and care staff in challenging illegal ‘do not resuscitate’ decisions.  https://lnkd.in/e8-as9wf #LearningDisability #Support #DNACPR #SupportedLiving #SocialEnterprise

As a leader in disability services, it’s never difficult to see the good in people. Our Direct Support Professionals (DSPs) embody what the world needs more of—individuals who think of and support others selflessly. Their incredible work often goes unnoticed because they work nights, weekends, and holidays, showing their compassion and commitment when only the person receiving support is there to witness it. DSPs wear many hats: they are teachers, counselors, chefs, medication managers, mood-enhancers, and house coordinators, all rolled into one. Today, The Arc Jacksonville recognized a few outstanding DSPs who work in our community homes. Here’s what they had to say about their surprise recognition: • Agent of Change: “I love to help people. By helping others in their daily lives, I know I am in the right place.” • Rookie of the Year: “I just come in and give it all I have.” • Compassion Award: “You have to love what you do and give your residents your all!” • Person Centered Award: “I have worked here for 13 years and love each resident. I came to America to be rich, and my friend reminded me it wasn’t about the money. What I do is so important and makes me happy.” DSPs are unseen heroes in our community and the heart of disability services and I am so fortunate to get to work with and learn from them everyday. ❤️. #DisabilityServices #DirectSupportProfessionals #CommunityHeroes #Compassion #Dedication

I wanted to share the publication of an article in the Journal on Quality and Patient Safety this past September on how actively adopting healthcare organizations are implementing accommodations for people with communication disabilities https://lnkd.in/gqx8csY8

Sharing some positive NDIS stories that might bring a smile and some inspiration: 1. **Support Coordination**: This guide really highlights how crucial support coordinators are in helping NDIS participants manage their plans, access services, and reach their goals. It shows how the right support can make the NDIS a transformative experience. [Read more here.](https://lnkd.in/grWMzEZK) 2. **Overcoming Isolation**: In Dubbo, Laura Portelli's game shop is a welcoming haven for people with neurodivergent conditions, tackling social isolation in regional areas through community and creativity. [Read more here.](https://lnkd.in/gP6fsTcQ) 3. **Sports as a Lifeline**: Wendy Passfield's journey through 100 surgeries to find a new lease on life through sports is truly inspiring. Her story shows the power of community support and physical activity in recovery. [Read more here.](https://lnkd.in/gSuijhcE) 4. **Breaking Barriers in the Arts**: Sarah Goninon, an actor with a disability, defied societal barriers to perform at the Venice Biennale, proving that talent and determination can shine through. [Read more here.](https://lnkd.in/gu2XjdRK) 5. **Improved Access to Specialist Support**: More students at state government specialist schools will soon have access to NDIS navigators, ensuring they receive the care and resources needed to thrive. [Read more here.](https://lnkd.in/ghkBXDWp) These stories remind us that while challenges exist, the NDIS is making a positive impact. Let's keep advocating for improvements and sharing these uplifting moments. Have you seen positive changes in your community thanks to the NDIS? Share your stories below! P.S. Repost this to spread the positivity! Thank you!

Renee Fisher is a single mum from Frankston, an NDIS participant, with two school age kids who are NDIS participants. She is a brilliant analyst of our service system, a racy writer, and an advocate for system change. She is standing as a candidate for the seat of #Isaacs in Melbourne (Parkdale, Carrum and Dandenong South) for #DemocracyFirst. The seat is held by Attorney-General Mark Dreyfus. Renee is part of a movement of users of services in #disability, #mentalhealth,#agedcare, #veterans support and #familyservices who are fighting back against being abused, trivialised and patronised by our political class. Renee worked in #marketing for BMW before becoming a single mum. That world has given way to a new one, but Renee has no fear of the political class. "It is all show, the power and prestige. They are paper tigers really, as weak as water". "So, you still believe there's a real, substantial difference between the #Coalition and #Labor? That's adorable. It's like mistaking the trunk and the tail of an elephant for different creatures when, in reality, it's the same beast trampling over our #rights and freedoms. It's not Left versus Right anymore; it's a unified push towards a corporate dystopia. And let's be real – both parties are leading us down a path that doesn't end well for the #common folk. They’re not opponents; they’re collaborators in a grand scheme that #benefits the few at the expense of the many." #WhatWeWant 1. The resignation of #BillShorten as Minister for NDIS and #RebeccaFalkingham as CEO of NDIS. 2. A complete #overhaul of the culture and operations of #NDIS so it can fulfill the original purpose of NDIS. 3. Total reform of our #schools so teaching and learning can be personalised for each child, with parents coached in how to be co-educators of their kids. 4. A complete overhaul of how we organise #mentalhealth and #agedcare so that users of services have an individual budget with which to purchase supports to suit each individual. 5. A complete restructure of #Centrelink so that it actually helps people get back on their feet instead of humiliating them. ___ "I want to get 1,000 #volunteers to help me in Isaacs. If I do, I will be elected. I know I can win this, because I know people appreciate deeply how I can advocate for change and persuade others to become involved." ___ #Express your interest in being a candidate for #DemocracyFirst. We have one primary goal in the coming election - to replace career politicians in Canberra with people who have some real world experience and know what they are doing. Express your interest here: https://lnkd.in/gB7mz-3d The time for #complaining about the state of the country is over. It's now time to act and to #lead in fixing things. #Join us today https://lnkd.in/gB7mz-3d Share this post to cast the net widely.

“While we know things might change when Carly gets older, if something unexpected should happen to her, colleagues now know what type of things she likes, and what brings her comfort.” Brilliant outcomes from Somerset NHS Foundation Trust End of Life Care Team 👏 Read the article below to see how they have used No Barriers Here with people with learning disabilities living in care homes as part of a #QualityImprovement #ACP programme. https://lnkd.in/eYHpWKFx #palliativecare #futurecare #advancecareplanning #equity #carehomes #qualityimprovement #learningdisabilities

Immediate Advocacy Needed - Deadline: Today @3PM On Tuesday, March 5, the Illinois Senate Judiciary Committee is scheduled to vote on SB 3559, the Anti-Retaliation in Nursing Homes Act. This bill is a short term step to bringing greater freedom to people with disabilities. Two things you can do, before 3pm on Tuesday, March 5th: 1. Send a letter to your Illinois senators and representative: https://lnkd.in/gMePU6VF 2. Complete a witness slip as a proponent: https://lnkd.in/gSb8CeRR Directions to Fill Out a Witness Slip 1. For firm /business/agency: put your organization, or "self" 2. For representation: put your organization, or "self" 3. Mark yourself as a PROPONENT 4. Under testimony, select “Record of Appearance Only.” 5. Accept the terms and click “Create(Slip). The Anti-Retaliation in Nursing Homes Act would give residents the right to take legal action if retaliated against by nursing home staff. This bill would give nursing home residents freedom of speech, and human dignity while in a facility. Such immediate steps give greater freedom for people still stuck in institutions, which enables greater autonomy and ability to advocate for themselves to get back into the community. As we work to bring freedom to live fully in the community, and strengthen the values of independent living, we also know that many of our people, still stuck in nursing facilities, routinely face retaliation from management when they speak up about mistreatment or their desire to transition into the community. Research supports that fear of retaliation is widespread, and silences the voices of people with disabilities. Please share widely and quickly!

ECTA Center eNotes for February 16, 2024 are available. In this issue: - IDEA Part C Early Intervention Family Survey Data for Federal Fiscal Year 2021 - Response Rate and Representativeness Calculator - Assistive Technology Devices and Services for Children With Disabilities Under the IDEA - Step Up AT - Child Maltreatment 2022 - March of Dimes Report 2023 - A 100-Year Review of Research on Black Families https://lnkd.in/gRBNDt8Y