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

Action Alert: Independent Living and President Biden’s Proposed 2022 Budget

Late last week President Biden released his Fiscal Year (FY) 2022 budget – the first budget of his presidency. The FY22 budget proposes $6 trillion with record high levels of federal investments in critical programs and services, including many of the priorities outlined in his American Jobs Plan and American Families Plan. Much of this would be funded by raising taxes on corporations and the wealthy.

Included in the President’s budget is a $32 million increase for the Independent Living Program, for a total of $148.2 million. The increase would include $29 million for Part C and $3 million for Part B. However, the budget indicates that up to $8 million of the Independent Living Program’s funding must be available to make and evaluate competitive grants to part C CILs to develop evidence-based interventions to increase employment for disabled people. While increasing employment for disabled people is critical – and something many Centers for Independent Living work toward – we oppose mandating the use of Independent Living Program funding toward non-core services. We have expressed these concerns to the Biden Administration and the Administration for Community Living (ACL) and suggested funding from employment programs be directed to CILs for this purpose.

In addition to the proposed increase for Independent Living, other programs for people with disabilities have proposed increases as well, including (but not limited to): State Councils on Developmental Disabilities; Developmental Disabilities Protection and Advocacy; the National Institute on Disability, Independent Living, and Rehabilitation Research; University Centers for Excellence in Developmental Disabilities; Voting Access for People with Disabilities; Assistive Technology, and the Long-Term Care Ombudsman Program. The documents with the specific proposed funding amounts can be found below.

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Share Your HCBS Story with Us

Congress is currently considering a huge investment in home and community based services (HCBS). This investment could go a long way toward making community living for all a reality – but it’s not a done deal yet.

Disabled people have the right to live in our communities with control over our lives, including our supports and services. To that end, the National Council on Independent Living (NCIL) has been working closely with Congress, the Administration, and partner organizations in DC to make sure this critical investment happens – and to make sure it is done in the most thoughtful and inclusive way possible.

As part of these efforts, NCIL is looking for stories to share with Congress about the importance of HCBS, including (but not limited to):

  • Stories from people whose HCBS have enabled them to remain in their homes and / or participate more fully in their community
  • Stories from people who are on the waiting list for HCBS, and how not having these services has impacted their lives
  • Stories from people who have been able to transition out of institutions / congregate settings because of HCBS

Our goal is to collect these stories and send them to Congress by Thursday, June 10. Please submit stories through the online form or by emailing comments@ncil.org by Wednesday, June 9 at Midnight. If you submit your story by email, please include the following information:

  • Your name (you can write “Anonymous” if you do not want to share your name):
  • The city you live in (optional):
  • The state you live in:
  • Your story, in 1-3 paragraphs:
  • May we contact you if necessary for additional follow-up?

[Sign Your Support / Solidarity] Opposition to CDC Mask Guidelines

The Partnership for Disaster Strategies has put out a statement in opposition to the CDC’s recent guidance for fully vaccinated people. In it, they express their confusion and outrage at the recommendation that fully vaccinated people “no longer need to weak masks, avoid crowds or large gatherings, isolate after exposure, or get tested unless they develop symptoms”, and note that the result will be to spread the disease amongst unvaccinated, which can lead to new variants and vaccine resistance. The statement also notes that the guidance disregards people at high-risk and many people with disabilities, putting us at even higher risk.

The Partnership is looking for organizations and individuals to sign on in support / solidarity before they share it widely and publicly. NCIL has signed on, and if can sign your name and / or organization on as well at https://forms.gle/Vcg4aX6prjxFx7pC9.

If you need this form in alternative format, please contact Priya Penner at p.penner@disasterstrategies.org.

Facebook Live Event on mAbs: New Resource from the Federal COVID-19 Response Team

On Wednesday, May 26, 2021, at 10:00 a.m. Eastern, the Federal COVID-19 Response Team will host a Facebook Live event focusing on the updated National Institutes of Health guidance on Monoclonal Antibodies (mAbs). The event will feature Dr. H. Clifford Lane (NIH), Dr. Raj Gandhi (Harvard), and Ms. Cecily Waters (US Department of Health and Human Services), who will discuss the updated recommendations from the NIH COVID-19 Treatment Guidelines Panel.

You may remember we previously sent information about monoclonal antibody treatments, which were approved earlier this year by the Food and Drug Administration (FDA) for emergency use to treat people with mild to moderate COVID-19. Those approvals have since been revised by the FDA to expand the list of conditions that place people with mild to moderate COVID-19 at increased risk for disease progression. This webinar will address that revision and the updated NIH guidance.

To participate, visit www.facebook.com/CombatCOVIDgov. The event will have captions. If you have any questions, you can contact mabsocial@wondros.com.

You can also find more information about this and other updates at CombatCOVID.hhs.gov.

Information Alert: COVID-19 and Vaccine Survey Project Findings

The American Association on Health and Disability (AAHD) has released two research products that resulted from the AAHD Vaccine Hesitancy Survey Among Adults with Disabilities, a rapid, real-time online study of the perspectives of adults with disabilities on the COVID-19 Vaccine. Visit aahd.us/dissemination/covid-19-and-vaccine-survey-project to view the Vaccine Hesitancy Summary of Findings Report and the COVID-19 Vaccine and Disability Survey Vaccine Hesitancy Among Adults with Disabilities Research Report.

New ADA Notification Bill Introduced in the 117th Congress

An Update from the NCIL ADA / Civil Rights Subcommittee

On January 14, 2021, Representative Ken Calvert (R-CA), along with Representative Tom Rice (R-SC), introduced the ADA Compliance for Customer Entry to Stores and Services Act (H.R. 77), deceptively referred to as the ACCESS Act. This bill is essentially the same as previous Americans with Disabilities Act (ADA) notification bills, like H.R. 4099 and H.R. 620. H.R. 620, the ADA Education and Reform Act, passed the House in February 2018, and resembled many of the previous versions. H.R. 4099 was introduced in 2019 with an additional provision (Section 6) regarding Web Content Accessibility Guidelines (WCAG) 2.0 standards. This section is again included in H.R. 77.

Like the ADA notification bills before it, H.R. 77 would create additional barriers that would weaken our protected civil rights enforced under the Americans with Disabilities Act (ADA). Specifically, H.R. 77 would amend Section 308 of the ADA as it pertains to architectural barrier violations outlined in Sections 302 and 303, requiring that anyone who has been discriminated against (based on the failure to remove an architectural barrier to access an existing public accommodation) complete a cumbersome series of steps before commencing a civil action, detailed below.

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The Importance of Disability Cultural Centers in Higher Education

By Zane Landin, NCIL Policy Intern

19.4% of students attending higher education institutions identify as someone with a disability. Students with disabilities in higher education often experience ableism, discrimination, and invalidation, from microaggressions to institutional barriers. Graduation rates for students with disabilities are as low as 13% compared to 30% among their non-disabled counterparts. The identity of disability is an aspect of diversity that is integral to our communities, society, and higher education, but is predominantly excluded from social justice initiatives and conversations. 

In higher education, to support different marginalized groups, many universities have developed and implemented cultural centers for different cultural groups of the campus community to feel empowered, celebrated, and interconnected. These cultural centers provide students with a physical / virtual space to feel celebrated while offering professional and personal development resources such as networking events, identity exploratory workshops, and educational conferences. These cultural centers challenge and mitigate some of the barriers these cultural groups experience in higher education. Through their efforts, they are also accelerating the success rates of these cultural groups. Student involvement in cultural activities enhance student success, retention rates, well-being, and the college experience by driving cultural community, relationships, familiarity, expression, and validation.

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Disability Rights Organizations Join the National John Lewis Voting Rights Advancement Action Day

May 8, 2021

Washington, D.C. – Today, the American Association of People with Disabilities (AAPD), the National Association of Councils on Developmental Disabilities (NACDD), the National Council on Independent Living (NCIL), and the National Disability Rights Network (NDRN) will participate in the John Lewis Voting Rights Advancement Day of Action in support of the John Lewis Voting Rights Advancement Act.

Following the record-breaking turnout in the 2020 elections, state legislatures across America have released an offensive onslaught of undemocratic legislation designed to specifically suppress the vote of voters with disabilities, voters of color, and youth voters. 

These actions were made possible beginning in 2013 when the United States Supreme Court struck down key provisions of the Voting Rights Act (VRA) of 1965 in its Shelby County v. Holder decision. Prior to 2013, jurisdictions were subject to preclearance under Section 5 of the VRA and jurisdictions with known discriminatory practices were required to seek approval before enacting voting changes. In the Shelby County ruling when the Supreme Court struck down the primary avenue to determine which states require preclearance, it immediately freed jurisdictions with known discriminatory practices to change how their elections are administered without the voter protections offered by federal preclearance. Voters across the country are negatively impacted by new barriers created after the Shelby County decision. Following the enactment of strict voter identification laws, voter purges, and polling place closures, not all voices are being heard on Election Day, and worse, they are being deliberately silenced.

For the past several years, Congress has introduced legislation that would restore the preclearance provision of the VRA, including the Voting Rights Advancement Act, recently renamed as the John Lewis Voting Rights Advancement Act (H.R. 4). AAPD, NACDD, NCIL and NDRN strongly urge Congress to protect and restore voting rights in America through the enactment of the John Lewis Voting Rights Advancement Act. The VRA protections are needed as much now as they were almost 60 years ago. We urge Congress to take swift action to ensure that Americans will not experience another election without the crucial protections of the Voting Rights Act.

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The American Association of People with Disabilities (AAPD) is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities. As a national cross-disability rights organization, AAPD advocates for full civil rights for the over 61 million Americans with disabilities by promoting equal opportunity, economic power, independent living, and political participation. To learn more, visit the AAPD Web site: www.aapd.com.   

The National Association of Councils on Developmental Disabilities (NACDD) is the national association for the 56 Councils on Developmental Disabilities (DD Councils) across the United States and its territories. The DD Councils receive federal funding to support programs that promote self-determination, integration, and inclusion for all people in the United States with developmental disabilities.  Please check out www.onevotenow.org for NACDD’s work on voting.

The National Council on Independent Living is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States. To learn more, visit www.ncil.org

The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and the Client Assistance Programs (CAP) for individuals with disabilities. Collectively, the Network is the largest provider of legally based advocacy services to people with disabilities in the United States To learn more, visit www.ndrn.org.    

FCC Announces Emergency Broadband Benefit Start Date

Yesterday the FCC announced that eligible households can begin applying for the Emergency Broadband Benefit on May 12, 2021. Read the announcement (PDF)

The Emergency Broadband Program will provide a monthly discount toward broadband service for eligible households and one-time discounts for the purchase of certain devices from participating providers. The COVID-19 package passed in December required the FCC to develop this program to help struggling households pay for internet service during the COVID-19 pandemic. 

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Survey: Accessible COVID-19 Vaccine Distribution to People with Disabilities

Now that vaccine distribution is rapidly picking up pace, the Partnership for Inclusive Disaster Strategies wants to find where people with disabilities continue to face barriers in accessing the COVID-19 vaccine.

Please take 10 minutes to complete the Accessible COVID-19 Vaccine Distribution to People with Disabilities survey to help us strategize for equitable access to the COVID-19 vaccine for and autonomy of people with disabilities.

If you need this survey in an alternative format, please contact Priya Penner at p.penner@disasterstrategies.org.

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