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

Healthcare & Community Living

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


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

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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Emergency Attendant Survey

The COVID-19 pandemic has uncovered significant gaps in the home and community-based services (HCBS) system, including a nationwide need for Emergency Attendant / Direct Service Professional Registries and Backup Programs. NCIL and APRIL are partnering on surveying Centers for Independent Living (CILs) across the country to create a database of existing resources in this area so we can identify gaps and work to address them moving forward.

Please fill out this short Emergency Attendant Survey to help us gauge your CIL’s current status. This survey only takes 1-2 minutes complete. We are seeking responses from every Center for Independent Living in the country. Responding CILs will be entered into a drawing to receive a $50 Amazon gift card!

Gift card drawing rules: One (1) $50.00 Amazon gift card will be awarded to a Center for Independent Living that submits a complete survey response. Individuals and non-CIL entities are not eligible to win. The winner will be chosen by a random selection of survey respondents. Survey drawing will be held after all responses have been received or by July 31, 2020, whichever comes first. The winner of the drawing will be notified by email at the email address provided in their survey response.

Op-Ed: Why Social Workers Should Oppose Assisted Suicide

By Jessica Rodgers

As a social work intern with the Independent Living Center of the Hudson Valley, I advocate for all individuals to live as independently as possible in the community. I also oppose the dangerous assisted suicide legislation that continues to be pushed upon the people of New York.

For decades, opponents have warned about the dangers this sort of legislation holds for the disabled community. Despite supposed safeguards and attempts on the part of proponents to ease concerns, the world has hurtled along exactly as disability-rights advocates have feared. One need look no further than Switzerland where those willing to pay for it can buy a designer suicide. Belgium has perhaps gone the farthest of all by allowing children the option to kill themselves and not differentiating between mental distress and physical illness. A PBS special even followed a Belgian physician as he made a home visit to give one of his patients a lethal injection. Her diagnosis? Depression.

For the old, the sick, and the disabled — particularly those in poverty — the “right to die” may, sooner rather than later, become the “duty to die.”

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