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

Healthcare & Community Living

Join Monday’s National Call-in Day on Supreme Court Nominee Judge Barrett!

Earlier this week, we sent an alert about Judge Amy Coney Barrett’s nomination with several ways to take action.

On Monday, October 12, NCIL is joining other disability organizations to coordinate a national call-in date to oppose the confirmation of Judge Amy Coney Barrett to the U.S. Supreme Court. As we said in our previous alert, Judge Barrett’s opinions on a number of issues are damaging to disability rights, and her appointment to the U.S. Supreme Court would threaten the rights and lives of Americans with disabilities. Her hostility toward the Affordable Care Act (ACA) is a particular threat, since the ACA has been vital to millions of people across the country, including the disability community. If Judge Barrett is confirmed, losing the ACA is far more likely.

Join the Call-In Day!

  • Join and share the event page on Facebook
  • You can reach both of your Senators by calling the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY) and asking to be connected to your Senator.
  • You can find your Senators’ contact forms at senate.gov.
  • You can find your Senators’ Twitter handles, Facebook pages, and more on Contacting Congress.
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Help Us Fight the Supreme Court Nomination and Save the Affordable Care Act!

Judge Amy Coney Barrett has been nominated to fill Justice Ruth Bader Ginsburg’s vacant seat on the United States Supreme Court. Senate Majority Leader Mitch McConnell has stated that the Senate will hastily move forward with her confirmation hearings in mid-October, with a vote planned shortly after. Judge Barrett’s opinions on a number of issues are damaging to disability rights, and her appointment to the U.S. Supreme Court would threaten the rights and lives of Americans with disabilities. NCIL strongly opposes her nomination.

We, along with over 50 other national, state, and local disability rights organizations have sent a letter (PDF) urging the Senate to oppose her nomination. We are continuing to work with these organizations and others to oppose her nomination, and now we need your help.

Take Action!

The Supreme Court is scheduled to hear arguments in the lawsuit seeking to invalidate the Affordable Care Act (ACA) on November 10. The ACA has been vital to millions of people across the country, including the disability community. Judge Barrett’s vocal opposition to the law is highly concerning, and her appointment to the Supreme Court makes the loss of the ACA far more likely.

1. Share your story: We need your stories of how the ACA has helped you, and how overturning the ACA would be harmful. Please share with us how the Affordable Care Act has helped you, or how losing the ACA would be harmful. You can share your stories with us using our online form or at comments@ncil.org. Because this is moving so quickly, we are requesting this information by Wednesday, October 14, 2020. Thank you for your help!

2. Contact your Senator: You can call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY) and ask to be connected to your Senators. You can find your Senators’ contact forms at senate.gov. You can find your Senators’ Twitter handles, Facebook pages, and more on Contacting Congress.

Sample script: Hi, my name is (NAME), and I’m from (CITY, STATE). I am (calling / writing) to urge the Senate to reject the nomination of Judge Amy Coney Barrett, the President’s Supreme Court Nominee. Judge Barrett has a history of decisions that are concerning to me as a disabled person. Moreover, Congress should not act on any nomination until Congress has passed, and the President has signed, a COVID-19 relief bill. There is far too much at stake to rush this important decision. Please reject Judge Barret’s nomination. (Your name)

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Request for Information: COVID-19 and Congregate Settings

We need your help. The COVID-19 pandemic has hit our community hard, and especially people in congregate settings. These settings include places like psychiatric hospitals, intermediate care facilities, nursing facilities, developmental centers, group homes, and others. Many of our people are still trapped in these settings even as the pandemic has highlighted their dangers.

As we fight to keep everyone safe, we are also preparing for increased infections in the coming months. We are considering filing a complaint about how the rights of many disabled people in congregate settings are being violated right now. We need to know what has – and has not – been working in these settings around the country.

If you live in a congregate setting, or if someone close to you (like a family member or friend) does, we want to hear from you.

You can share this information with us using any of the methods below:

Please provide at least one way to contact you so we can follow up if we need more information. Some of the information we receive will be used if we move forward with the complaint. We will not share your name or contact information without your permission.

We request that you please share this information with us by Friday, October 16. Thank you.

Survey Question Examples: We are especially interested in answers to the following questions. You can answer any or all of these questions. These are just examples of the type of information we are looking for. If you have information to share with us that is not included in these questions, please do.

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Contact your Senators Today about COVID-19 Relief!

Last week the Senate’s “skinny” COVID-19 relief package, the Delivering Immediate Relief to America’s Families, Schools and Small Businesses Act (PDF), failed to advance. This was considered their “skinny” package, because it is a scaled-back version of the HEALS Act that was introduced in July. You can read more about the HEALS Act in our previous alert.

The next two weeks are critical for passing real, comprehensive COVID-19 relief. If the Congress doesn’t reach an agreement this month, it will likely delay any significant relief until after the election, and possibly even until January. That is unacceptable.

Even if you’ve contacted your Senators already, they need to hear from us again today! They need to hear from their constituents how important it is that they work to pass real, comprehensive relief now. And, they need to hear how critical it is to address the disability community’s needs in this COVID-19 package. They need to hear about all our priorities, but especially about the need for funding for home and community based services (HCBS). You can see a full list of priorities in this letter from CCD (PDF), of which NCIL is a member. NCIL also worked with other disability organizations to highlight our most critical priorities (PDF).

TAKE ACTION: Contact your Senators to tell them to #GetBackToWork on a bill that addresses our needs. Remind that that #WhatWeNeed is #HCBS funding!

  • Call your Senators. Call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY). Ask to be connected to your Senators.
  • You can find your Senators’ contact forms at senate.gov.
  • You can find your Senators’ direct phone numbers, Twitter handles, Facebook pages, and more on Contacting Congress.
  • You can use Resistbot to turn texts into faxes by texting “RESIST” to 50409.
  • Also consider contacting Senate Majority Leader Mitch McConnell and Minority Leader Chuck Schumer. You can use the methods above or tweet at them. McConnell – @SenateMajLdr; Schumer – @SenSchumer.

A sample script is below. Please feel free to personalize.

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New COVID-19 Relief Package: Contact your Senators Today!

The Senate has introduced another COVID-19 relief package called the Delivering Immediate Relief to America’s Families, Schools and Small Businesses Act (PDF). This is considered their “skinny” package, because it is a scaled-back version of the HEALS Act that was introduced in July. You can read more about the HEALS Act in our previous alert. Like the HEALS Act, this new package does not meet the needs of the disability community. It also includes the same dangerous liability shield. This is the piece that would undermine the Americans with Disabilities Act and give businesses immunity for harm they cause in almost all circumstances.

The Senate voted and failed to advance their bill today, by a vote of 52-47. Our Senators need to hear from us again now! They need to hear about the importance of addressing the disability community’s needs in their COVID-19 response. They need to hear about all of our priorities, but especially about the need for funding for home and community based services (HCBS). You can see a full list of priorities in this letter from CCD (PDF), of which NCIL is a member. NCIL also worked with other disability organizations to highlight our most critical priorities (PDF).


TAKE ACTION: Contact your Senators to tell them to #GetBackToWork on a bill that addresses the our needs. Remind that that #WhatWeNeed is #HCBS funding!

  • Call your Senators. Call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY). Ask to be connected to your Senators.
  • You can find your Senators’ contact forms at senate.gov.
  • You can find your Senators’ direct phone numbers, Twitter handles, Facebook pages, and more on Contacting Congress.
  • You can use Resistbot to turn texts into faxes by texting “RESIST” to 50409.
  • Also consider contacting Senate Majority Leader Mitch McConnell and Minority Leader Chuck Schumer. You can use the methods above or tweet at them. McConnell – @SenateMajLdr; Schumer – @SenSchumer.

A sample script is below. Please feel free to personalize.

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Disability-Led Research Study on the COVID-19 Response

The Johns Hopkins Disability Health Research Center is conducting a disability-led qualitative study to inform COVID-19 policy for the disability community. They are looking to recruit disabled people to participate in a research study of virtual focus groups discussing healthcare, accessibility and employment-related gaps in the COVID-19 response. See below for the study announcement, including information on how to participate and contact information.

Recruitment flyer - full dsecription in text below.
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Report Release: Failures in COVID-19 Response Harm People with Disabilities and Older Adults

The Partnership for Inclusive Disaster Strategies released a report tracking 154 consecutive daily stakeholder calls on the effects of the COVID-19 pandemic on people with disabilities and older adults throughout the United States.

The Partnership for Inclusive Disaster Strategies released a report documenting the pandemic over 154 consecutive daily calls with disability and older adult stakeholders across the country. The Report: COVID-19 & Disability Rights Daily Calls: February 23 – July 31, identifies patterns showing the failure of the pandemic response to prioritize the lives of people with disabilities and older adults, despite making up over 42% of COVID-19 deaths. It also shows the disability and older adults stakeholders’ initiatives to anticipate and mitigate the unfolding crisis. 

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Survey Results: In-Home Support Needs During COVID-19

In June, we reached out to gather input on the changes that COVID-19 has had on access to in-home support workers. Many of you graciously replied, sharing stories of the struggles being faced daily, and your very personal perspectives and unique perspective allow us to continue to advocate for solutions. We are sending this message to provide you with an overview of the 100 responses we received.

Respondents ranged in age from 19 to 87 years old. The majority (64 persons) rely on personal care attendants using Medicaid as a payer. Hours of support authorized varied widely, but almost every respondent hired privately and indicated a new or worsening worker shortage, and delays in receiving services or funds to make payments. Pay ranges reported an average of about $12.50 an hour. Compounding the worker shortage issue was a universal lack of personal protective equipment PPE, and many reports of out-of-pocket costs to supplement workers’ needs. In addition, 4 out of 5 responses recorded a disruption to routine or elective healthcare.  

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Electronic Visit Verification (EVV) Call to Action

The NCIL EVV Taskforce, formed in Spring 2018, has been hard at work on strategies to reverse the use of surveillance in electronic visit verification (EVV) for Medicaid-funded home care services. Promoted largely by for-profit companies that stand to reap windfall profits from the sales of their systems to states, EVV has been shown to be more harmful than good to people with disabilities and their care providers.

The successes of our communities rely on NCIL members and the broader disability community mobilizing to spread a single message to elected officials. There are two new opportunities you can join right now to help fight against EVV!

Support the COVID-19 Recovery for Seniors and People with Disabilities Act (H.R. 6951 / S. 3740) sponsored by Senators Bob Casey, Sherrod Brown, and Doug Jones in the Senate and Representative Janice Schakowsky

In addition to providing vital support for independent living services for seniors and people with disabilities, S. 3740 and H.R. 6951 specifically recognizes that EVV is a barrier to home and community-based services. The bill would delay implementation of EVV until six months after the end of the national public health emergency.

An additional delay gives the disability and senior communities time to organize around legislative initiatives that will ban the use of geolocation and biometrics in EVV.

Contact your Senators to ask for their support and YES vote on S.3740 COVID-19 Recovery for Seniors and People with Disabilities Act to delay EVV. Contact your Congressional Representative to ask for their support and YES vote on H.R. 6951.

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Join Tuesday’s Call-In Day for HCBS in the Next COVID-19 Package!

Tomorrow (Tuesday, August 4), NCIL is joining other disability organizations to host a disability community call-in day to urge the Senate to include funding for home and community-based services (HCBS) in the coronavirus relief bill being negotiated. 

Targeted funding for HCBS is critical to keeping disabled people out of congregate settings where COVID-19 is spreading rapidly. Last week the Senate introduced their new COVID-19 relief package, the HEALS Act. Unlike the HEROES Act, which the House passed back in May, the HEALS Act does not include ANY HCBS funding. Read more in last week’s alert

TAKE ACTION

Contact your Senators to tell them #WhatWeNeed is #HCBS funding! Even if you have already contacted your Senators, they need to hear from you again. Make sure to tell them why Home and Community Based Services (HCBS) funding is critical, and that it MUST be included in the next COVID-19 package! It’s urgent that they hear from as many of us as possible, as soon as possible, to ensure that dedicated HCBS funding gets included in the final bill.

  • Participate in Tuesday’s Call-In Day! Find out more information at the Facebook event. RSVP and share widely!
  • Email and tweet your Senators directly.
  • Call your Senators by calling the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY) and asking to be connected to your Senators.
  • Get your Senators’ direct phone number, email and social media handles at contactingcongress.org.

A sample script and sample tweets are below. See additional sample materials.

Please also consider contacting Senate leadership and Senate Finance Committee leadership as well. 

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