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

Healthcare & Community Living

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.

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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 https://bit.ly/CareRationingForum.

Speakers:

  • 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

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

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.”

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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 www.cvshealth.com.

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: www.aapd.com.

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 www.ncil.org.

Media contacts:

Mike DeAngelis, CVS Health

401-770-2645

michael.deangelis@cvshealth.com

Jess Davidson, AAPD

970-631-6829

jess@davidsonjess.com

Jalyn Radziminski, Bazelon Center

Jalynr@bazelon.org

Lawrence Carter-Long, DREDF

lcarterlong@dredf.org

Eleanor Canter, NCIL

231-215-9808

eleanor@ncil.org

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.

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Build Back Better Act Package Includes HCBS Funding: Take Action to Get It Over the Finish Line!

Last week, the White House released a framework to advance the Build Back Better plan into law. The House Rules Committee then released their Build Back Better Act text. While negotiations for the final package are ongoing, the package is expected to have the support of all 50 Democratic Senators, which will be necessary to pass using the budget reconciliation process. Read more about reconciliation in our previous alert.

The Build Back Better Act as introduced includes $1.75 trillion in important 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. It would also make the Money Follows the Person program and HCBS Spousal Impoverishment protections permanent. Right now, the package does not include several previously considered provisions, including lowering prescription drug costs or paid family and medical leave.

Importantly, the package includes $150 billion to strengthen Medicaid home and community based services (HCBS), which includes efforts to end the existing backlog and improve conditions for workers. $150 billion is less than the amounts promised in President Biden’s American Jobs Plan and passed out of the House Energy & Commerce Committee. It is not enough to meet the incredible need. That said, $150 billion would be the most significant investment in HCBS we have ever seen. It would provide critical, urgently-needed funding to help disabled people live in our communities with the services and supports we need.

Congress will be working hard in the coming weeks to get the final package over the finish line. This is not a done deal yet! It is critical that our Members of Congress keep hearing from their constituents about the things that matter most. In particular, it is important they hear how vital it is that HCBS funding remain in the package until the bill passes!

Take Action!

Contact your Senators and Representative today! Make sure they know how critical home and community based services (HCBS) are, and ask them to make sure HCBS funding stays in the package until the end!

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

[Read more…]

Keep Taking Action for HCBS in the Reconciliation Package!

Negotiations about home and community based services (HCBS) in the reconciliation package are continuing in Congress. (You can read more about reconciliation in our previous alert.) The package that passed out of the House Energy & Commerce Committee funds HCBS at $190 billion, which is less than half the amount promised in President Biden’s American Jobs Plan. That is not nearly enough to meet the needs of disabled people across the country.

The situation is changing quickly, and the chances of reaching a deal seem to be fading as time passes. But we cannot lose hope, and we cannot stop pressuring our Members of Congress to invest in HCBS! We need to keep urging our Members of Congress to prioritize their disabled constituents’ needs in their negotiations.

Our Members of Congress need to remember the millions of our people stuck in institutional settings. They need to be reminded about the over 800,000 on waiting lists for HCBS – many who will wait years before receiving the supports and services they need. We cannot let them forget how hard congregate settings have been – and continue to be – hit by COVID-19. And they need to understand that the direct support workers who keep us safe in our homes – most of whom are Black and brown women – have been undervalued for years.

Improving wages and benefits for our direct support workers values the work being done and the people doing the work. Investing in HCBS is critical to protecting disabled people and our workers. And the COVID-19 pandemic has made it more urgent than ever.

Take action!

President Biden proposed a major investment in HCBS, and Congress introduced the Better Care Better Jobs Act (BCBJA) to put that proposal into action. We need Congress to fully fund HCBS in the budget reconciliation package! Our Members of Congress need to keep hearing from us as they continue negotiations and finalize the package.

Contact both your Senators and your Representative today! Tell them they MUST meet the needs of their disabled constituents and the direct care workforce in the reconciliation package!

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

[Read more…]

NCIL Statement on CDC Funding for Vaccine Access

Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs) provide critical core services to people with disabilities. Even though the core services are the same, CILs are not all funded in the same way. Some CILs receive direct federal funding through the Administration on Community Living (ACL). These CILs are referred to as “Part C” CILs. Many CILs get their funding through their States, which distribute the federal funds. These CILs are referred to as “Part B” CILs. The National Council on Independent Living (NCIL) is committed to the entire Independent Living network, regardless of how services are funded. 

In March 2021, conversations began at the federal level about the need to use local networks, including CILs, to increase COVID 19 vaccine access to aging and disabled people. The Center for Disease Control (CDC) was looking for partnerships to specifically address vaccine access for aging and disabled people. When the CDC approached ACL, ACL indicated they would only be able to distribute those funds to Part C CILs. This is how ACL distributed CARES Act funds, even though NCIL had advocated to make those funds available for the entire IL network. NCIL and the CDC wanted to see vaccine access funds made available to all disabled and aging people. They did not want how the CIL serving their area was funded to further limit access. Based on this mutual goal, the CDC approached former NCIL Executive Director, Kelly Buckland, with a proposal to deliver funding to Part B CILs. CDC’s proposal was through a seven million dollar grant to be administered by NCIL.

These funds were not ultimately made available to NCIL for distribution to Part B CILs. In July 2021, the CDC Foundation announced the release of $6.3 million for aging and disabled vaccine access. The proposal submission deadline for this opportunity was one week after its announcement. NCIL was informed of this announcement several days after it was announced and, as a result, did not have the opportunity to submit a proposal.   

This week, ABLE South Carolina announced that, in tandem with Independent Living Review and Utilization, it had received the CDC Foundation grant. ABLE and ILRU will operate a center to support Part B CILs in addressing the systemic disparities from limited access to federal support for vaccine-related services and supports to their consumers. 

Under the grant, ABLE South Carolina and ILRU will distribute federal funds to address inequities and build capacity in the IL network nationwide. Since Part C CILs have had access to vaccine funds since April of this year, NCIL hopes the process for applications and timelines associated with distribution of the funds will be tangible for eligible members of the IL network.  Therefore, we urge ABLE South Carolina and ILRU to reconsider their October 7th deadline for funding opportunities to allow sufficient time for eligible CILs to complete the complex application process accordingly.

More information regarding ABLE South Carolina and ILRU’s Center, including its goals to assume responsibility on a national level for ensuring that the federal funding gap pertaining to vaccine access between Part B and Part C CILs is bridged, can be found here.

Take Action to Ensure Full Funding of HCBS in the Reconciliation Package!

The House of Representatives expects to finalize the budget reconciliation package this week before sending it off to the Senate. Negotiations are still underway, but things are moving quickly, and action is needed now to ensure the disability community’s needs are met! 

As we mentioned in our previous alert, the current package proposes funding home and community based services (HCBS) at $190 billion. While this number is more than House negotiators started with – largely because of the advocacy of the disability and labor communities! – it is less than half the amount promised in President Biden’s American Jobs Plan, and not nearly enough to meet the needs of disabled people across the country.

Millions of our people are still stuck in institutional settings. Over 800,000 are on waiting lists for HCBS – many who will wait years before receiving the supports and services they need. Congregate settings have been – and continue to be – hit hard by COVID-19. The direct support workers who keep us safe in our homes and the work they do have been undervalued for years, both because providing services to disabled people is not seen as valuable, and because many of these workers are Black and brown women. Improving wages and benefits for our in-home workers values the work being done and the people doing the work. Investing in HCBS is critical to protecting disabled people and our direct support workers, and the COVID-19 pandemic has made it more urgent than ever.

Take Action!

President Biden proposed a major investment in HCBS, and Congress introduced the Better Care Better Jobs Act (BCBJA) to put that proposal into action. We need Congress to fully fund HCBS in the budget reconciliation package! Our Members of Congress need to hear from us NOW as they wrap up negotiations and finalize the package. 

Contact both your Senators and your Representative today! Tell them they MUST meet the needs of their disabled constituents and the direct care workforce in the reconciliation package! 

More information – including how to contact them and a sample script – are below.

[Read more…]

Urgent Action Needed to Ensure Full Funding of HCBS in Reconciliation Package!

Members of Congress have been hard at work preparing the budget reconciliation package. Negotiations are well underway, with language trickling out and more details expected in the coming days. Recently it has come to light that the proposal may contain only $190 billion in funding for home and community based services (HCBS). This is less than half the amount promised in President Biden’s American Jobs Plan, and not nearly enough to meet the needs of disabled people across the country.

Millions of disabled people are stuck in institutional settings. Over 800,000 people are on waiting lists for HCBS – many who will wait years before receiving the supports and services they need. Congregate settings have been – and continue to be – hit hard by COVID-19. Investing in HCBS is critical to protecting disabled people and our direct support workers, and it is more urgent than ever.

Take action!

President Biden proposed a $400 billion investment in HCBS, and Congress introduced the Better Care Better Jobs Act (BCBJA) to put that proposal into action. We need to ensure the BCBJA and the full $400 billion get included in the budget reconciliation package! Our Members of Congress need to hear from us NOW as they wrap up negotiations and finalize the package.

Contact both your Senators and your Representative today! Tell them they MUST meet the needs of their disabled constituents and the direct care workforce by including the full $400 billion in the reconciliation package!

*Note: We need everyone to contact their Members of Congress. If your Representative is on the House Energy & Commerce Committee, it is especially critical that you call them today! The full list of Energy & Commerce Committee members can be found at energycommerce.house.gov/about-ec/membership.

More information – including how to contact them and a sample script – is below:

  • Call your Senators and Representative: Call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY). Ask to be connected to your Senators or Representative.
  • You can find your Senators’ phone numbers and websites at senate.gov and your Representative’s phone number and website at house.gov/representatives. If you don’t know who your Representative is, you can find out at house.gov/representatives/find-your-representative.
  • You can Tweet your Senators and Representative at tweetcongress.org.
  • You can use Resistbot to turn texts into faxes, mail, or hand-delivered letters by texting “RESIST” to 50409.

SAMPLE SCRIPT (please feel free to personalize):

Hi, my name is [YOUR FULL NAME], and I’m from [CITY, STATE].

I am [calling / writing] to urge [Senator / Representative NAME] to support the Better Care Better Jobs Act, and to make sure the full $400 billion is included in the upcoming budget reconciliation package. The BCBJA would providing much-needed funding that is needed now more than ever, to improve access to home and community based services (HCBS) and strengthen and expand the HCBS workforce.

Many disabled people and older adults rely on HCBS to live in our homes and participate in our communities. Currently, states are not meeting the needs of their disabled residents, forcing many people to remain on years-long waiting lists and others to be institutionalized. As we have seen, people in these settings are at much higher risk of infection and death from COVID-19. In light of the disproportionate COVID infection and death rates, improving access to HCBS is more urgent than ever. The BCBJA, and the full $400 million funding, would provide the critical and long-overdue investment to make this happen.

Thank you for your time. I hope I can count on your support for your disabled constituents by supporting the Better Care Better Jobs Act in the reconciliation package.

(Your name)

[IF LEAVING A VOICEMAIL OR EMAILING: please leave your full street address and zip code. This will ensure your call or email is tallied]

A Right to Vote and A Right to Health for All: Co-liberation as the Only Path Forward

By Maddie Offstein, NCIL Summer Policy Intern

Although the U.S. has formally abolished the Jim Crow laws and poll taxes, many states are ramping up efforts to revisit their laws on voting policies and procedures after the 2020 Presidential election and creating significant barriers for many in participating in future elections. Since start of the new year alone, 18 states have enacted 30 new laws that restrict access to the ballot. Most noteworthy is the successfully passed legislation in Georgia, a state whose presidential election results were decided by a mere 11,779 votes. The law, S.B.202, includes 16 key provisions that either restrict the right to vote for some Georgia residents or transfer power from elections officials to state legislators. The major changes to state voting requirements are as follows: a shortened time period to request absentee ballots, stricter ID requirements for absentee ballots, a significant reduction in the number of ballot drop boxes (with an additional requirement that they are placed inside frequently inaccessible buildings), an almost complete elimination of mobile voting centers, and misdemeanor charges for those who offer food or water to those waiting in long polling lines. These changes will have the impact of curtailing voting access for disabled, low-income, and racially marginalized people – so egregiously that the Justice Department is suing the state on the grounds that Republican lawmakers pushed a bill through the State legislature with an intent to deny Black voters equal access to the ballot. In addition to many civil rights groups, disability rights-focused groups such as The Arc Georgia, Georgia ADAPT, and the Georgia Advocacy Office (GAO) have joined the case and added a complaint that S.B. 202 violates both the Americans with Disabilities Act and the Rehabilitation Act of 1973. This is the first-time disability rights organizations have joined, as plaintiffs, a major voting rights lawsuit.

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