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

Healthcare & Community Living

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.

[Read more…]

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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The Senate’s HEALS Act Does NOT Meet Our Needs: Take Action Today!

On Monday, the Senate introduced the Health, Economic Assistance, Liability Protection and Schools (HEALS) Act. This new COVID-19 relief package was released as a series of bills. See more information about each bill. As a reminder, the House passed the HEROES Act back in May.

The HEALS Act fails to meet the urgent needs of the disability community. It does not include ANY of the priorities we have been urging our members of Congress to address, like targeted funding for home and community based services (HCBS) – which are critical to keeping disabled people out of congregate settings where COVID-19 is spreading rapidly.

It does, however, include a dangerous provision that would give businesses – including schools and medical providers – immunity from being held liable for harm they cause in almost all circumstances. Plus, it specifically shields employers and people who own, lease, or operate public accommodations from violations of the Americans with Disabilities Act. The liability relief provision removes accountability and is solely about protecting businesses and profits; not at all about protecting people. It puts the safety, rights, and lives of everyone at risk.

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Contact Your Senators Today and Tell Them to Include Disabled People in their COVID-19 Response!

Congress returns to DC next week, and the Senate is already negotiating the next COVID-19 relief package. They are expected to release their bill shortly after returning to DC, but our Senators are home all this week. It is critical they hear from their constituents about the things that are most important to their disabled constituents!

Disabled people are disproportionately impacted by the COVID-19 pandemic. Many of us are at risk of severe symptoms and complications if exposed to the virus. We face significantly increased barriers and discrimination that are threatening our health, safety, and lives. It is unacceptable that our needs have not been addressed in the COVID-19 response!

The House of Representatives passed the HEROES Act back in May. This bill includes a lot of key disability community priorities, but the Senate will not be working from this to create their package. That makes it even more critical for them to hear from us about what needs to be included.

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Good News on Hospital Visitor Policies!

Disabled people have been facing discriminatory “no visitor” policies in hospitals across the country. These policies are in place to keep people safe during the COVID-19 pandemic, but they have prevented people from receiving critical support and assistance from family members, friends, support workers, or others. Accommodations to these policies are required by law, but states and hospitals across the country have been refusing to make such accommodations and abide by the law.

The first federal complaint (PDF) challenging these policies was filed in Connecticut by Independence Northwest: Center for Independent Living of Northwest CT, Disability Rights Connecticut, CommunicationFIRST, the Arc of Connecticut, Center for Public Representation, and the Arc of the US. Last week, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced a resolution.

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