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.

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.

• Framework
• Package text (PDF)

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.

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.

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.

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]

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.

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 [email protected] 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?