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

Healthcare & Community Living

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.

[Read more…]

Information / Action Alert: Budget Reconciliation and HCBS

On Tuesday, August 10, the Senate passed their approximately $1 trillion bipartisan infrastructure bill, the Investing in a New Vision for the Environment and Surface Transportation (INVEST) in America Act (H.R. 3684) in a 69-30 vote. This bill includes $550 billion in new federal spending, and on top of the traditional funding for roads, bridges, and public transit, the bill includes several new investments, including funding for improving broadband access, addressing racial inequities in infrastructure, and it includes pieces of the All Stations Accessibility Program (ASAP) Act to improve accessibility of rail systems.

The next day, August 11, the Senate passed their $3.5 trillion budget resolution (S. Con. Res. 14) in a 50-49 vote. The budget resolution sets the stage for the budget reconciliation package, including the major investments in home and community based services (HCBS) and the direct support workforce that we have been fighting for. It also sets the stage for other crucial investments, including (but not limited to): filling the Medicaid gap; Affordable Care Act (ACA) expansion; expanding Medicare by lowering the eligibility age and by covering vision, dental & hearing; paid family and medical leave; child nutrition; critical tax credit extensions; providing immigrants a path to citizenship; child care and universal Pre-K; tuition-free community college; Native health, education, and housing programs; housing affordability and equity; and environmental justice.

[Read more…]

Information Alert: NCIL Support for the Better Care Better Jobs Act

Last month, the Better Care Better Jobs Act (PDF), H.R. 4131 / S. 2210, was introduced in Congress. The effort was led by Senator Casey (D-PA), Senate Majority Leader Schumer (D-NY), Senator Wyden (D-OR), Senator Murray (D-WA), Senator Duckworth (D-IL), Senator Hassan (D-NH), and Senator Brown (D-OH) in the Senate, and Congresswoman Dingell (D-MI), Congressman Pallone (D-NJ), Congresswoman Schakowsky (D-IL), and Congresswoman Matsui (D-CA) in the House. NCIL supports this bill’s efforts to transform the long term services and supports (LTSS) landscape.

The Better Care Better Jobs Act (BCBJA) would enact President Biden’s American Jobs Plan. The Jobs Plan proposes to spend $400 billion to expand access to home and community based supports and services. The Jobs Plan would invest in the direct support workforce. The BCBJA provides a way to put that plan into motion. The BCBJA would provide states with opportunities to receive enhanced funding to improve their Home and Community Based Services (HCBS) systems.

[Read more…]

Share Your HCBS Story with Us

Congress is currently considering a huge investment in home and community based services (HCBS). This investment could go a long way toward making community living for all a reality – but it’s not a done deal yet.

Disabled people have the right to live in our communities with control over our lives, including our supports and services. To that end, the National Council on Independent Living (NCIL) has been working closely with Congress, the Administration, and partner organizations in DC to make sure this critical investment happens – and to make sure it is done in the most thoughtful and inclusive way possible.

As part of these efforts, NCIL is looking for stories to share with Congress about the importance of HCBS, including (but not limited to):

  • Stories from people whose HCBS have enabled them to remain in their homes and / or participate more fully in their community
  • Stories from people who are on the waiting list for HCBS, and how not having these services has impacted their lives
  • Stories from people who have been able to transition out of institutions / congregate settings because of HCBS

Our goal is to collect these stories and send them to Congress by Thursday, June 10. Please submit stories through the online form or by emailing comments@ncil.org by Wednesday, June 9 at Midnight. If you submit your story by email, please include the following information:

  • Your name (you can write “Anonymous” if you do not want to share your name):
  • The city you live in (optional):
  • The state you live in:
  • Your story, in 1-3 paragraphs:
  • May we contact you if necessary for additional follow-up?

[Sign Your Support / Solidarity] Opposition to CDC Mask Guidelines

The Partnership for Disaster Strategies has put out a statement in opposition to the CDC’s recent guidance for fully vaccinated people. In it, they express their confusion and outrage at the recommendation that fully vaccinated people “no longer need to weak masks, avoid crowds or large gatherings, isolate after exposure, or get tested unless they develop symptoms”, and note that the result will be to spread the disease amongst unvaccinated, which can lead to new variants and vaccine resistance. The statement also notes that the guidance disregards people at high-risk and many people with disabilities, putting us at even higher risk.

The Partnership is looking for organizations and individuals to sign on in support / solidarity before they share it widely and publicly. NCIL has signed on, and if can sign your name and / or organization on as well at https://forms.gle/Vcg4aX6prjxFx7pC9.

If you need this form in alternative format, please contact Priya Penner at p.penner@disasterstrategies.org.

Facebook Live Event on mAbs: New Resource from the Federal COVID-19 Response Team

On Wednesday, May 26, 2021, at 10:00 a.m. Eastern, the Federal COVID-19 Response Team will host a Facebook Live event focusing on the updated National Institutes of Health guidance on Monoclonal Antibodies (mAbs). The event will feature Dr. H. Clifford Lane (NIH), Dr. Raj Gandhi (Harvard), and Ms. Cecily Waters (US Department of Health and Human Services), who will discuss the updated recommendations from the NIH COVID-19 Treatment Guidelines Panel.

You may remember we previously sent information about monoclonal antibody treatments, which were approved earlier this year by the Food and Drug Administration (FDA) for emergency use to treat people with mild to moderate COVID-19. Those approvals have since been revised by the FDA to expand the list of conditions that place people with mild to moderate COVID-19 at increased risk for disease progression. This webinar will address that revision and the updated NIH guidance.

To participate, visit www.facebook.com/CombatCOVIDgov. The event will have captions. If you have any questions, you can contact mabsocial@wondros.com.

You can also find more information about this and other updates at CombatCOVID.hhs.gov.