the advocacy monitor

Independent Living News & Policy from the National Council on Independent Living

You’re Invited: White House Briefing for Americans with Disabilities

Source: White House

You are invited to a briefing for Americans with disabilities on Thursday, May 12 at 2:00 p.m. Eastern hosted by the White House Office of Public Engagement.

All are welcome! Please share with your email and social media networks.

ASL and CART will be provided.

Register for the call:

Support NCIL’s IL Appropriations Request: Contact Your Members of Congress!

Congress is getting to work on Fiscal Year 2023 (FY23) funding, and earlier this week NCIL submitted our formal appropriations request. We need support from the rest of the Independent Living network to boost this request and make sure Congress understands the importance of the Independent Living Program!

Take Action!

The Independent Living Program is one of our country’s most important investments, and we need to ensure FY23 appropriations include the substantial increase the program has desperately been waiting for.

NCIL requested a total funding amount of $250 million for the Independent Living line item (an increase of $131.8 million).

Congress has our request; now they need to hear from their constituents across the country! Call or email your Senators and Representatives and tell them that you support NCIL’s appropriations request for $250 million for the Independent Living Program. Tell them how vital the IL program is to their disabled constituents! It is essential that we keep the Independent Living Program in the conversation as Congress works to determine FY23 spending levels.

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NCIL Job Announcement: Director of Advocacy and Public Policy

The Director of Advocacy and Public Policy leads analysis of proposed legislative actions; determines the potential impact on people with disabilities, Centers for Independent Living, and Statewide Independent Living Councils; develops appropriate responses; maintains continuous relationships with government, other disability rights organizations, and other partners and stakeholders; and represents and protects NCIL’s interests. The Director of Advocacy and Public Policy works closely with the Executive Director, NCIL President, Vice President and the Legislative and Advocacy subcommittee chairs to ensure that NCIL is a leading voice in disability rights. Read the full job description.

Application Deadline: May 5, 2022

NCIL Anniversary Logo: Celebrating 40 Years

A Message from NCIL’s Diversity Committee

We as the NCIL Diversity Committee would like to assure to our membership that we understand and are committed to continuing our efforts to bringing intersectionality and diversity together. This will allow people who are not often seen or heard, because of underrepresentation, to have the opportunity to be at the table. This includes reaching out and connecting to the youth to hear what they have to say because their voices matter, and they are the future of this movement. The NCIL Diversity Committee is dedicated to the work that will not just benefit our organization but will benefit the disability community as a whole and future generations to come. 

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Reminder: Comments Due Monday for CDC’s Draft Updated Opioid Guideline: Information and How to Take Action

On February 10, the Centers for Disease Control and Prevention (CDC) released its draft updated Clinical Practice Guideline for Prescribing Opioids. This update is much broader than the 2016 Guideline. It applies to all types of providers except inpatient (hospital) care and to all types of pain – acute, subacute, and chronic.

The draft updated Guideline is a significant improvement over the 2016 Guideline. It emphasizes individualized treatment and recognizes the importance of treating pain. It also makes clear that the Guideline is not intended to be applied as inflexible standards across patients or systems. And importantly, it acknowledges the harm that has resulted from the 2016 Guideline and makes specific changes to address it, abandoning strict day and dose limits and cautioning against rapid tapers and abrupt discontinuation of opioid medications.

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White House Updates for Americans with Disabilities

Source: White House

April 5, 2022

The Biden Administration Accelerates Whole-of-Government Effort to Prevent, Detect, and Treat Long COVID

Today, President Biden signed a Presidential Memorandum directing a whole-of-government approach to the long-term impacts of COVID-19. Please find here the fact sheet and Presidential Memorandum, and please share!

The Presidential Memorandum (PM) directs HHS to coordinate a new interagency effort to accelerate and further our work to address these long-term effects of COVID-19. Thanks to President Biden’s whole-of-government COVID response, our nation has made tremendous progress in our fight against COVID-19, and America has the tools to protect against and treat COVID-19. At the same time, millions of individuals are suffering from prolonged illness from COVID-19, known as “Long COVID”; experiencing the effects of a COVID-related loss, and grappling with mental health and substance use issues.

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HHS to Provide $110 Million to Strengthen Money Follows the Person!

Source: CMS NEWS (March 31, 2022)

The Centers for Medicare & Medicaid Services (CMS) announced it will offer more than $110 million to expand access to home and community-based services (HCBS) through Medicaid’s Money Follows the Person (MFP) program. First authorized in 2005, MFP has provided states with $4.06 billion to support people who choose to transition out of institutions and back into their homes and communities. The new Notice of Funding Opportunity (NOFO) makes individual awards of up to $5 million available for more than 20 states and territories not currently participating in MFP. These funds will support initial planning and implementation to get the state/territory programs off the ground, which would ensure more people with Medicaid can receive high-quality, cost-effective, person-centered services in a setting they choose.

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Reminder and Extended Deadline: Sign Your Organization on to the CDC Updated Opioid Guideline Letter by April 8  

In 2016, the Centers for Disease Control and Prevention (CDC) released its Guideline for Prescribing Opioids for Chronic Pain. While the Guideline contains many noncontroversial provisions, aspects of it were widely misapplied in ways that created barriers to pain treatment and caused significant harm.

Recognizing these harms, the CDC, the FDA and others issued warnings against such misapplications, and the CDC ultimately announced its intent to update its Guideline, which it released in draft form on February 10. While the update contains significant improvements, it remains unclear how the new recommendations will remedy ongoing harms. (Read more in NCIL’s previous alert.)

To that end, the NCIL and the National Pain Advocacy Center (NPAC) have drafted a sign-on letter asking Congress to exercise oversight as the CDC finalizes its updated Guideline. Specifically, we are asking Congress to conduct hearings to document the harms that have resulted from the misapplication of the 2016 Guideline, as well as to address pain management more broadly – including how best to ensure that alternative treatments recommended by the updated draft are actually covered by payers so the Guideline does not exacerbate disparities in pain treatment. 

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NCIL Mourns the Loss of Sheryl Grossman

It is with great sadness that we inform you of the passing of Sheryl Grossman. Sheryl passed away early this morning, March 28, 2022 surrounded by the love of her community.

Sheryl was a passionate disability rights advocate who spent over two decades working to promote legislative and social change for the disability community. During her time as the Community Living Advocate at NCIL, Sheryl facilitated the National Organizing Project, where she advocated for community integration on Capitol Hill and worked to advance direct action in support of disability rights and community living. Sheryl was also founder and facilitator of Bloom’s Connect, an international organization that enabled people with Bloom’s Syndrome, a rare genetic condition, to find community and peer support. In 2020, she was nationally recognized for her dedication to the rare disease community, and she received a RareVoice Award for her federal advocacy work.

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TRANSED: Mobility, Accessibility & Demand Response Transportation Conference

Source: Transportation Research Board

Convened by Transportation Research Board, the TRANSED: Mobility, Accessibility & Demand Response Transportation Conference will be held virtually, September 12-16, 2022. This conference combines two long standing conferences with similar content: the “16th International Conference on Mobility and Transport for Older Adults and People with Disabilities (TRANSED)” and the “5th International Conference on Demand Responsive Transport (DRT)”. The theme of this combined conference is “Inclusive Accessible and Sustainable Demand Response Transportation”. The Conference aims to describe current global research, services to improve mobility and accessibility for individuals with disabilities and for older adults, and best practices in providing demand responsive transportation (paratransit).

The overarching conference theme addresses the chasm between academic research and real-world planning practice and project implementations of sustainable, inclusive and accessible mobility. Conferees will also address the disconnect between the transportation analyses that agencies conduct and conditions on the ground for providers of sustainable and accessible mobility solutions. Successful implementation of mobility concepts is reliant on inclusive design, a business and service plan to attract and retain riders and funding, staff and user training, and a comprehensive accessible technology base. Accordingly, we seek contributions from researchers, practitioners, and others, such as non-profits and charitable organizations and manufacturers. 

Participants will represent a wide range of lived and professional experiences and discuss how diverse perspectives are included in policy development, project selection, and mitigation to advance transportation inclusion and accessibility.