• Wednesday, December 14, 2022
• 12:30-2:00 p.m. Eastern
• Register for the webinar

ACL invites you to a webinar in their series on strengthening advocacy in the Home- and Community-Based Services (HCBS) Settings Rule, Getting the Services You Need from the Waiver, on Wednesday, December 14, 2022.

The HCBS Settings Rule can improve community-based services and supports for people with disabilities and older adults for decades to come. This webinar will provide insight into one of the main strategies stakeholders can use to get the promise of the Rule into everyday life: influencing the services that are included in the waiver application.

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.

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.

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.

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. 

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.

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.

• Read full Fact Sheet

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.

• Take the survey (English or Spanish): flareproject.org/rationingsurvey

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