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

Healthcare & Community Living

Participants Needed: 2022 National Survey on Health and Disability (NSHD)

Share how access to health care and the COVID-19 pandemic have affected your life.

The University of Kansas Institute for Health & Disability Policy Studies (KU-IHDPS) is looking for adults with disabilities to complete the National Survey on Health and Disability (NSHD). The NSHD is an annual, online survey about your health, quality of life, access to health care services, and the COVID-19 pandemic, as a person with a disability or health condition.

  • Adults aged 18-64 with any type of disability, chronic illness/disease, mental or physical health condition are encouraged to complete the survey
  • The survey should take about 20 minutes to complete
  • Responses are anonymous
  • Survey opens May 2, 2022

Go to: https://rockcha.lk/2022NSHD

Whether or not you complete the survey, you can choose to enter a drawing to win one of ten $100 gift cards. If you prefer to take the survey over the phone or have any questions about participating, please call toll-free 1-855-556-6328 (Voice/TTY) or email healthsurvey@ku.edu.

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Prioritizing HCBS: Updates and Call to Action

The Senate is still working to pass a budget reconciliation package, and they will be deliberating over the next few weeks on the key priorities to include. Funding for Home and Community-Based Services (HCBS) is still a top priority for the Independent Living network and one of the most important issues that NCIL is supporting this year. There is still time for you to take action. This week, Senator Bob Casey, Chair of the U.S. Senate Special Committee on Aging, shared a memo with the Senate Democratic Caucus stressing the urgent need to fund Long-Term Care/Medicaid Home-Based services. Read the memo (PDF).

Take Action!

Contact your Senators and urge them to include HCBS funding in any reconciliation package that may be worked on during the next few weeks! You can call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY) and ask to be connected to your Senators, or you can find your Senators’ contact forms at senate.gov.

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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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Prioritizing HCBS: Updates and Get Involved with This Week’s Hearing!

This Wednesday, the Senate Special Committee on Aging will hold a hearing titled “An Economy That Cares: The Importance of Home-Based Services”. This hearing will focus on home and community based service (HCBS) and Chairman Bob Casey’s (D-PA) Better Care Better Jobs Act, which would expand access to HCBS and invest in the direct support workforce. Read more in our previous alert.

This hearing shows Senate leadership’s continued commitment to moving a major investment in HCBS forward this year. It also provides an opportunity for our community to reaffirm how important this issue is and how much support there is for this policy. See below for some ways you can get involved and some additional background information about the fight for HCBS!

Take Action!

The hearing will be held on Wednesday, March 23 at 10 a.m. Eastern Time (9 CT / 8 MT / 7 PT). It will be livestreamed on the Committee’s website as well as their Facebook and Twitter.

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Fact Sheet: Protecting Seniors and People with Disabilities by Improving Safety and Quality of Care in the Nation’s Nursing Homes

Source: White House

All people deserve to be treated with dignity and respect and to have access to quality medical care. And in no case should a health care facility be causing a patient harm. The President believes we must improve the quality of our nursing homes so that seniors, people with disabilities, and others living in nursing homes get the reliable, high-quality care they deserve. That’s why he is announcing a set of reforms—developed by and implemented through the Department of Health and Human Services (HHS)—that will improve the safety and quality of nursing home care, hold nursing homes accountable for the care they provide, and make the quality of care and facility ownership more transparent so that potential residents and their loved ones can make informed decisions about care.

Survey on Care Rationing

Throughout the COVID-19 pandemic, hospitals and states have proposed and enacted discriminatory plans to ration scarce health resources. As part of an anti-care-rationing coalition, NCIL is sharing this Care Rationing Survey. The survey was put together by the Fat Legal Advocacy, Rights, and Education Project (FLARE) and the #NoBodyIsDisposable Coalition to gather the stories of people who are having/have had trouble getting medical care during COVID. Stories will be shared to create awareness and support advocacy for fair medical treatment. Respondents can choose whether or not to share anonymously.

If you need a plain text version, contact CareRationing@gmail.com.

Keep Taking Action to Pass the Build Back Better Act; Join a Grassroots Virtual Rally with Senator Casey and Congresswomen Dingell!

The House passed the Build Back Better Act (BBB) last month. BBB is a federal funding plan to support rebuilding many national programs that have been long neglected. We are still waiting for the Senate to pass the bill. While Senate Majority Leader Schumer has set a Christmas deadline – and a vote next week is possible – the timeline is still unclear. Passing BBB is not a done deal. Our Senators need to keep hearing from us!

The $1.7 trillion of investments included in the Build Back Better Act are critically needed. BBB has $150 billion in funding for Home and Community Based Services (HCBS) and our workers. In addition to the HCBS investments, BBB:

  • makes the Money Follows the Person program and HCBS Spousal Impoverishment protections permanent;
  • includes funding for housing, education, clean energy and sustainability, immigration reform, and health coverage;
  • includes efforts to transition to competitive integrated employment;
  • closes the Medicaid coverage gap;
  • expands Medicare to cover hearing benefits;
  • reduces healthcare premiums;
  • extends important tax credits;
  • reduces drug prices;
  • establishes a paid family and medical leave program; and
  • invests in broadband Internet services nationwide.

You can see more about what’s included in the Build Back Better act in this framework and in the resources below. These are crucial services and programs that are needed now. We cannot keep waiting!

Take Action!

The Senate must keep BBB intact and pass it quickly. It is critical that our Senators keep hearing from us about how important this is. Call or email your state’s Senators about the things that matter most to you! Tell them their disabled constituents cannot keep waiting!

More information is below, including how to contact them and a sample script.

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