the advocacy monitor

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

Healthcare & Community Living

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.

[Read more…]

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. 

[Read more…]

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.

[Read more…]

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 [email protected].

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.

[Read more…]

House Passes Build Back Better Act; Take Action to Get It Over the Finish Line!

Today the House passed the Build Back Better Act (BBB), President Biden’s transformational legislation with a historic $1.7 trillion investment in critical programs and services. While the COVID-19 pandemic is ongoing, BBB and the recently-passed infrastructure package will set our country on a path toward a more equitable recovery.

The Build Back Better Act includes major investments in housing, education, children and families, clean energy and sustainability, immigration reform, and health coverage. It would fund grants to transition to competitive integrated employment, close the Medicaid coverage gap, expand Medicare to cover hearing benefits, reduce healthcare premiums for millions of people, and extend important tax credits. The bill also includes paid leave and drug pricing provisions that had previously been removed from the package.

Importantly, the package still includes $150 billion in funding to strengthen Medicaid home and community based services (HCBS). While $150 billion is less than the original amount proposed by President Biden, it is still the largest investment in HCBS we have ever seen and would provide urgently-needed funding to support the workforce and help disabled people live and stay in our communities. The package would also make the Money Follows the Person program and HCBS Spousal Impoverishment protections permanent, further enabling disabled people to get out of institutions and live in the community.

BBB now moves to the Senate, where Senate Majority Leader Schumer has set a Christmas deadline. This is not a done deal yet!

Take Action!

It is critical that the Senate keep BBB intact and pass it quickly. Keep contacting your Senators; they must keep hearing from their constituents about the things that matter most, especially how vital it is that HCBS funding remain in the package until the end!

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

[Read more…]

Care Rationing Forum: Tuesday, November 16

With blue and brown colors, a graphic shows a line of coughing people entering a hospital, with a masked health care provider holding a clipboard with a question mark on it. Graphic text is available in this article.

Please join us for a Care Rationing Forum. We’ll discuss the impact of COVID care rationing on older people, disabled people, and people of color, and brainstorm how disability advocates around the country can take action.

Tuesday, November 16

  • 1:00 – 2:30 p.m. EST
  • 12:00 – 1:30 p.m. CST
  • 11:00 a.m. – 12:30 p.m. MST
  • 10:00 – 11:30 a.m. PST

Sign up at


  • Reyma McCoy McDeid, National Council on Independent Living
  • Mel Leviton, Idaho State Independent Living Council;
  • Silvia Yee, Disability Rights Education & Defense Fund (DREDF)

Event will include live captioning, ASL and Spanish interpretation. Please make a note of other needed languages or accommodations on the registration form.

This event is part of the Disability Organizers Forum, a project of the National Disability Leadership Alliance. Co-sponsored by Senior & Disability Action.

#DontRationOurCare #NoBodyIsDisposable #EndAbleism #EndAgeism

Please share widely.

CVS Health Partners with Disability Community in Commitment to Affordable and Equitable Access to Health Care

Image: Logos: CVS Health, AAPD (American Association of People with Disabilities), Bazelon Center for Mental Health Law, DREDF, National Council on Independent Living

CVS Health, the American Association of People with Disabilities, the Bazelon Center for Mental Health Law, the Disability Rights Education and Defense Fund, and the National Council on Independent Living today announced that they are working together to seek policy solutions to protect equitable access to health care for all Americans and continue to protect the fundamental rights of people with disabilities.

“We have a long track record of supporting the essential and foundational legal protections for people with disabilities and ensuring that marginalized populations can access affordable health care and medicines in their community,” said David Casey, Senior Vice President, Workforce Strategies and Chief Diversity Officer at CVS Health. “Our agreement to pursue policy solutions in collaboration with the disability community will help protect access to affordable health plan programs that apply equally to all members. As a result, we will not pursue the matter further before the Supreme Court.”

“CVS Health engaged in an honest dialogue with disability community representatives and listened carefully to our concerns about what was at stake for disabled people with the question before the Supreme Court,” said Judith Heumann, a long time disability activist and leader featured in the popular documentary Crip Camp about the disability rights movement. Heumann and others, including disability law expert Chai Feldblum and the Bazelon Center’s Jennifer Mathis, took part in the discussions with CVS Health. “We look forward to continuing this important work in partnership and thank CVS Health for its commitment to preserving disability rights.”           

Maria Town, President and CEO of the American Association of People with Disabilities, stated, “Hard-fought progress has been preserved today through dialogue and partnership between advocates and CVS Health. We look forward to working collaboratively with CVS Health to find solutions that will ensure that health benefits are equally available and affordable to people with disabilities.”


About CVS Health

CVS Health is the leading health solutions company, delivering care like no one else can. We reach more people and improve the health of communities across America through our local presence, digital channels and our nearly 300,000 dedicated colleagues – including more than 40,000 physicians, pharmacists, nurses, and nurse practitioners. Wherever and whenever people need us, we help them with their health – whether that’s managing chronic diseases, staying compliant with their medications, or accessing affordable health and wellness services in the most convenient ways. We help people navigate the health care system – and their personal health care – by improving access, lowering costs and being a trusted partner for every meaningful moment of health. And we do it all with heart, each and every day. Learn more at

About the American Association of People with Disabilities (AAPD)

The American Association of People with Disabilities (AAPD) is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities. As a national cross-disability rights organization, AAPD advocates for full civil rights for the over 61 million Americans with disabilities by promoting equal opportunity, economic power, independent living, and political participation. To learn more, visit the AAPD website:

About the Bazelon Center for Mental Health Law 

The Bazelon Center for Mental Health Law is a national nonprofit legal advocacy organization that advances the rights of adults and children with mental disabilities through litigation, policy advocacy, public education, and technical assistance. Formerly the Mental Health Law Project, the Bazelon Center advocates for equal opportunity for people with disabilities in all aspects of life, including community living, health care, education, employment, housing, parental and family rights, voting, and other areas. The Center has played a role in numerous disability rights cases in the U.S. Supreme Court.

About the Disability Rights Education & Defense Fund (DREDF)

Disability Rights Education and Defense Fund based in Berkeley, California, is a national nonprofit law and policy center dedicated to protecting and advancing the civil and human rights of people with disabilities. Founded in 1979 by people with disabilities and parents of children with disabilities, DREDF remains board- and staff-led by members of the communities for whom we advocate. DREDF pursues its mission through education, advocacy and law reform efforts. DREDF is nationally recognized for its expertise in the interpretation of federal disability civil rights laws. DREDF has participated as amicus and as counsel for amici in many Supreme Court cases regarding these laws. 

About the National Council on Independent Living 

The National Council on Independent Living (NCIL) is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of people with disabilities and organizations including Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States. NCIL’s mission is to advance independent living and the rights of people with disabilities. To learn more, visit

Media contacts:

Mike DeAngelis, CVS Health


[email protected]

Jess Davidson, AAPD


[email protected]

Jalyn Radziminski, Bazelon Center

[email protected]

Lawrence Carter-Long, DREDF

[email protected]

Eleanor Canter, NCIL


[email protected]

NCIL Statement on Section 1557 of the Affordable Care Act

On November 1st, 2021, the National Council on Independent Living (NCIL) was invited to participate in a listening session hosted by the US Department of Health and Human Services (HHS), as well as the US Office of Civil Rights (OCR). The purpose of the listening session was to present organizations like NCIL, as well as the National Disability Rights Network (NDRN), United Spinal Association, and Bazelon Center for Mental Health Law with an opportunity to make comments pertaining to Section 1557 of the Affordable Care Act. NCIL’s statement at this listening session is as follows:

“Thank you for the opportunity to participate in this listening session on Section 1557 of the Affordable Care Act. The National Council on Independent Living is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Our member organizations include hundreds of the disability-run Centers for Independent Living and Statewide Independent Living Councils located all across the country providing direct services, advocacy, and support for disabled and aging people in meeting their goals for independent living.

The Affordable Care Act presented a landmark opportunity to offer equal and comprehensive health insurance coverage that included all Americans, including people with disabilities of all ages. Among the specific provisions of the ACA which made a profound difference for disabled Americans, were anti-discrimination and equity provisions that made coverage affordable, covered pre-existing conditions, offered essential benefits, and prohibited benefit limitation on the basis of health status or disability. The ACA explicitly outlawed these longstanding discriminatory policies, and Section 1557 was key in enforcing these reforms. Section 1557 offers anti-discrimination protections, providing a mechanism for addressing discrimination on the basis of protected status, including disability.

[Read more…]