the advocacy monitor

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

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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NCIL Mourns the Loss of Representative John Lewis

We are greatly saddened by the loss of Representative John Lewis, who died after a battle with cancer at the age of 80. Representative Lewis was a hero of the civil rights movement who dedicated his life to fighting for justice, including during his over three decades in Congress. There he was seen as a sort of moral authority, becoming known as “the conscience of the Congress.”

Representative Lewis spent his whole life fighting to make America a country that truly belonged to everyone. Well-known for his activism around voting rights, he was a staunch advocate for many important issues ranging from healthcare to immigration to disability rights. He was a lifelong activist, having been arrested over 40 times throughout his life, and frequently encouraging people to make “good trouble” in the pursuit of justice.

Representative Lewis leaves behind a legacy of justice-seeking, of love, and of honor. NCIL joins the broader civil and human rights community, and the entire nation, in mourning the loss of this true hero. We commit to continuing the work for justice and equity. And we commit to working to make this country, and our community, one that truly belongs to everyone.

NCIL Statement on Michael Hickson

On the eve of the thirtieth anniversary of the Americans with Disabilities Act (ADA) and in the midst of an unprecedented global pandemic, the National Council on Independent Living (NCIL) mourns the deaths of those who have died as a result of the denial of medical services, braces itself for more casualties to come, and condemns the inhumane practice of rationing healthcare that, although it has always been a concern for the disability community, has become an all-too-grim reality during this era of COVID-19.

The recent demise in Austin, TX, of Michael Hickson, a Black father of five who lived as the result of a cardiac incident with both spinal cord and traumatic brain injuries, has spearheaded a necessary conversation regarding the value placed upon life in the US. Hickson, who was taken to the hospital as a result of contracting COVID-19 in the nursing facility where he resided, was denied medical care, food, and water, ultimately starving to death, alone, on June 11th, 2020. The decision to deny Mr. Hickson treatment was made by his medical team and his court-appointed guardian and against the wishes of his family, who weren’t notified of Mr. Hickson’s death until a day after he passed away.

Michael Hickson’s life mattered – to his wife, to his children, and to his community. It should have mattered to the medical professionals charged to care for him. It didn’t – audio recordings of Mr. Hickson’s medical team clearly reflect that, because of his disabilities, they felt Mr. Hickson would be a waste of treatment. As states throughout the US move forward with initiatives intended to prioritize who during the pandemic will get care and rationalize about who will be denied, people with disabilities – who are disproportionately being impacted by COVID-19 at alarming rates – are left to grapple with the grim reality that healthcare settings, which are intended to provide care, are both a system of inequity and, as is the case with Mr. Hickson, an instrument of death.

The disability community deserves better, Michael Hickson and his family deserved better, and because of this, NCIL intends to file a complaint with the Office of Civil Rights (OCR) that will entail a request that they conduct a thorough investigation into the circumstances – and the myriad ADA violations that occurred – leading up to Mr. Hickson’s death. NCIL also seeks out legislative and organizational partners in the interest of joining forces on behalf of the disability community to ensure that, not only is the unfortunate trend towards medical rationing curtailed during the pandemic, it is seen for what it is by the general public: an unethical and barbaric practice that has no place in the US, moving forward.

Final Update on NCIL’s Virtual Hill Day: Virtual March, Rally and Advocacy Priorities & Talking Points Guide

We hope you are getting excited for this year’s Virtual Hill Day, which is coming up quickly! As a reminder, the Virtual Hill Day will be on Tuesday, July 21, 2020.

Earlier this week, the Co-Chairs of several key NCIL Legislative and Advocacy Subcommittees hosted NCIL’s annual Policy Briefing to provide everyone with key information in preparation for next week’s Virtual Hill visits.

We want to provide you with some additional key information heading into next week!

Virtual March

Our Virtual Hill Day includes a fun, new virtual format for our Annual March! To participate, make a homemade sign with your message on it and send us a picture. You can use anything from poster board to a regular sheet of paper. Just make sure your text is BOLD so we can read your message. You can use any medium. Send your photo to eleanor@ncil.org and include a short description of your photo (30 words or less). We’ll post the photos we receive on the NCIL Virtual March page.

Virtual Rally

Our Virtual Hill Day also includes a fun, new virtual format for our Annual Rally! We have an incredible line-up of members of Congress and advocates who will be providing remarks to inform and energize you before you head into your Hill meetings. You can tune in to the Rally at 11:00 a.m. Eastern at the NCIL Virtual Rally page. To allow for the greatest amount of flexibility around your meeting schedules, the Rally video will be archived and available throughout the conference. ASL interpretation and CART will be provided.

Advocacy Priorities & Talking Points

Each of NCIL’s Legislative & Advocacy Subcommittees have written up summaries of their key priorities and talking points to help prepare you for your Virtual Hill Visits!

Advocacy Priorities & Talking Points:

As a reminder, the Virtual Day on the Hill is open to the public. We encourage everyone to join us for the Virtual March, Rally, and Hill Visits! This year’s Virtual Hill Visits have the potential to make a huge impact. Congress returns from recess on Monday, July 20, and our Virtual Hill Day will be a critical time to urge our members of Congress to take action and to prioritize the needs of their disabled constituents. We hope you will join us!

Conference Logo: Evolution of our Revolution - 2020 Annual Conference on Independent Living. Graphic features a speech bubble and heart icon.

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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SILC T&TA Center Presents… A National Webinar: Administrative Requirements and Cost Principles for SILCs as Sub-Grantees

August 13, 2020; 3:00 – 4:30 p.m. Eastern

Register online

The SILC T&TA Center is offering a new webinar on administrative requirements and cost principles for Statewide Independent Living Councils. Led by John Heveron, a certified CPA with over 40 years working with non-profits, including CILs, and Paula McElwee, ILRU’s Technical Assistance Coordinator, this webinar will cover internal controls, allowable and unallowable costs, DSE monitoring and audits, documentation, tips to simplify your accounting system, and more.

This information-packed webinar will share the essential elements your SILC needs to meet the administrative requirements and cost principles as sub-recipients of federal funds. Sign-up today!

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

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More Information about NCIL’s Virtual Hill Day!

This year, NCIL’s Virtual Hill Day will be on Tuesday, July 21, 2020. We hope you have already been scheduling meetings with your Members of Congress and are planning to attend our 2020 Policy Briefing on Tuesday, July 14.

Our Virtual Hill Day also includes a fun, new virtual format for our Annual Rally! We have a fantastic line-up of people who will be providing remarks to inform and energize you before you head into your Hill meetings. You can tune in to the Rally at 11:00 am Eastern at the NCIL Conference website or our YouTube page. To allow for the greatest amount of flexibility around your meeting schedules, the Rally video will be archived and available at both websites all day. ASL interpretation and CART will be provided.

This year’s Virtual Hill Visits have the potential to make a huge impact. Congress returns from recess on Monday, July 20. While the House has already passed the HEROES Act, the Senate has not taken any action on the next COVID-19 relief package. Our Virtual Hill Day will be a critical time to urge our Senators to take action and to prioritize the needs of their disabled constituents. This is an important time, and we hope you will all join us!

We will be providing the links to the Virtual Rally (which is open to the public!) and additional information to help prepare you for your meetings soon. Stay tuned!

Conference Logo: Evolution of our Revolution - 2020 Annual Conference on Independent Living. Graphic features a speech bubble and heart icon.

Announcing: The 2020 NCIL Policy Briefing

Tuesday, July 14, 2020; 3:00 – 4:30 p.m. Eastern

Register online

NCIL is happy to announce our 15th Annual Policy Briefing.

This important presentation will to bring advocates up-to-date on national issues and federal policies that affect people with disabilities and provide participants with question and answer sessions with national leaders to ensure you have in-depth information on the issues you care about most.

The Policy Briefing will ensure that we are fired up and prepared for NCIL’s 2020 Virtual Day on the Hill!

This teleconference is free for NCIL Members and conference registrants. There is a $25.00 registration fee for Non-Members / non-conference registrants, per call-in site. Fee does not apply per participant in group, provided the group uses the same conference line.

The Policy Briefing will be available via webinar / teleconference and CART captioning will be provided.  You must register by 12:00 Noon Eastern on July 14 to participate in the call.

Please contact Tim Fuchs at tim@ncil.org with any questions.

DATE CORRECTION: The 2020 NCIL Policy Briefing will be Tuesday, July 14th from 3:00 – 4:30 p.m. EDT.  The call will be recorded and available online if you are not available at this new time. 

Youth Scholarship Application Deadline Extended to July 10th!

NCIL is re-opening our youth scholarship application for a few more days!

NCIL’s youth scholarships are given to youth with disabilities aged 26 and under to cover the costs of attending the annual NCIL conference. Since the conference will be virtual this year, all scholarships will be $90 to cover a youth’s registration fee for the conference. Dozens of youth have received scholarships to NCIL’s conference over the years, and many credit the scholarship with launching their advocacy work within NCIL’s committees and caucuses or through other organizations.

We are particularly seeking applicants for the Emet Tauber Youth Scholarship. Named in memory of former NCIL board member Emet Tauber, the Emet Tauber Youth Scholarship is given every year to one or more youth with disabilities under aged 26 who are trans and/or Jewish. Emet took great joy in living at the intersection of those three identities, and the ideal Emet Tauber scholarship recipient will embody this spirit.

To apply for a youth scholarship, fill out the youth scholarship application by July 10, 2020. To be considered for the Emet Tauber Youth Scholarship, check the box under “I would like to be considered for the Emet Tauber Youth Scholarship” and answer the questions that follow. If you have any questions or concerns, please email Cara Liebowitz at cara@ncil.org.

Conference Logo: Evolution of our Revolution - 2020 Annual Conference on Independent Living. Graphic features a speech bubble and heart icon.