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

Report Release: Failures in COVID-19 Response Harm People with Disabilities and Older Adults

August 31, 2020 By

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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Filed Under: Healthcare & Community Living

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

August 28, 2020 By

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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Filed Under: Healthcare & Community Living

Urgent Call for Stories: How Do Changes to the USPS Impact You?

August 20, 2020 By

The United States Postal Service (USPS) has been experiencing drastic changes that have led to major delays in mail service. People around the country are experiencing weeks of delays in receiving mail-order prescriptions, medical equipment, benefits checks, bills, notices, and other necessities they receive via mail. Delays in these critical items and information could result in utility shutoffs, homelessness, food insecurity, sickness, and other dire consequences for disabled people. USPS has also told 46 states and the District of Columbia that it may not be able to deliver mail-in ballots in time for the General Election in November.  

Before the coronavirus pandemic, the USPS was instrumental in delivering necessities and information. As the country continues to struggle with the Coronavirus pandemic, many more people rely on the USPS to receive medications through mail-order pharmacies. Millions of Americans plan on voting by mail to exercise their right to vote while maintaining social distance.  

The National Council on Independent Living (NCIL) and the American Association of People with Disabilities (AAPD) are asking for your help in collecting stories that we can use to illustrate how the changes to the USPS are impacting people with disabilities. We are looking for: 

1. Stories from people who have experienced delays in receiving the following: 

  • Medications 
  • Medical supplies, including durable medical equipment 
  • Basic Necessities 
  • Paychecks or benefit checks 
  • Bills and notices 

2. Stories from people who plan to vote by mail in the November election. How do you feel about the changes to the USPS so far, and how have these changes impacted your plans to vote in November? 

Our goal is to collect these stories and send them to the House of Representatives prior to the House Oversight Committee’s emergency hearing on mail delays taking place on August 24, 2020.  

Please submit stories through the online form or by sending them to [email protected] by Saturday, August 22 at Midnight. Please include your first name (or initials), your city and state, and two to three paragraphs concisely telling your story.   

Filed Under: Uncategorized

Information Alert: Court Limits Geographic Scope of Injunction Stopping the Public Charge Rule to NY, CT, and VT

August 13, 2020 By

Note: this is an update to yesterday’s Information Alert, “Public Charge Rule Updates”.

Source: Center for Public Representation

Yesterday, the Second Circuit Court of Appeals partially stayed the nationwide temporary injunction issued by a district court in New York last month against the Department of Homeland Security’s discriminatory public charge rule. That decision had halted the rule for the duration of the national public health emergency declared by the Trump Administration. This new decision means the rule is now back in effect nationwide, except in the states of New York, Connecticut, and Vermont.

Read the full article from the Center for Public Representation.

Filed Under: Civil Rights & the ADA

Information Alert: Public Charge Rule Updates

August 11, 2020 By

On July 29, the Seventh Circuit Court of Appeals in New York issued a nationwide preliminary injunction against the public charge rule for the duration of the COVID-19 public health emergency. This means the public charge rule cannot go into effect during the pandemic. This decision affirmed the district court’s previous decision. Read more about the public charge rule.

The federal court found that the rule conflicts with federal law – including Section 504 of the Rehabilitation Act – and they cited an amicus brief from a group of disability advocacy groups including NCIL.

Also on July 29, the same court also issued a nationwide preliminary injunction barring enforcement of a companion regulation issued by the State Department. This is the first preliminary injunction on the State Department’s rule, and it extends beyond the COVID-19 public health emergency.

Last week, the Department of Justice moved to stay the nationwide injunction of the public charge rule. However, this is still a huge win, and at this time, the public charge rule is blocked nationwide for the entire COVID-19 public health emergency. We will continue to keep you updated as things move forward.

For more information, see the Protecting Immigrant Families website. More information is also available at the Center for Public Representation’s Public Charge page.

Filed Under: Civil Rights & the ADA

NCIL Mourns the Loss of Deidre Davis Butler

August 11, 2020 By

It is with a heavy heart that we inform you of the passing of Deidre Davis Butler, a national and international disability rights leader. Deidre passed away on Saturday, August 8, 2020.

Deidre was an attorney and long-time disability rights advocate. She was a staunch advocate who worked to promote legislative and social change for disabled people. Over her four-decade-long career she helped craft, implement and enforce laws including the Air Carrier Access Act, the Americans with Disabilities Act (ADA), the Civil Rights Act, the Fair Housing Act, and the Individuals with Disabilities Education Act.

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Filed Under: Independent Living & The Rehabilitation Act

Electronic Visit Verification (EVV) Call to Action

August 11, 2020 By

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.

[Read more…]
Filed Under: Healthcare & Community Living

IL-NET Presents… A Virtual Multi-Day Training: Financial Management for Centers for Independent Living – Regulations and Beyond

August 8, 2020 By

We are excited to announce that we’re taking our popular on-location financial management training online! You can save on travel costs and access all of the critical information on financial management from the comfort and safety of your own office or home!

Are you trying to keep up with all of the new guidance and regulations for CILs? We can help!

The IL-NET T&TA Center for Centers for Independent Living is offering an updated version of our popular financial management workshop to give your CIL the latest information on compliance and financial management practices. Whether you are new to nonprofit accounting or are looking to bolster your Center’s financial policies and procedures, you will learn exactly what you need to do to strengthen your Center, effectively manage finances, and ensure compliance with federal regulations. Led by John Heveron, a certified CPA with over 40 years working with non-profits and CILs, and Paula McElwee, ILRU’s Technical Assistance Coordinator, this workshop will give you the skills and resources that are essential to sound financial management in a thriving Center for Independent Living.

Registration Fee: This event is free-of-charge.

Visit the training web page to read about the presenters, learning objectives, agenda, and target audience.

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Filed Under: Independent Living & The Rehabilitation Act

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

August 3, 2020 By

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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Filed Under: Healthcare & Community Living

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

July 30, 2020 By

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.

[Read more…]
Filed Under: Healthcare & Community Living
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