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

IL-NET T&TA Center Presents… A National Webinar: How CILs Can (and Should!) Support Consumers Experiencing Homelessness

June 30, 2021; 3:00 – 4:30 p.m. Eastern

Register online

People with disabilities experience homelessness at alarming rates. The Department of Housing and Urban Development (HUD) reports that among adults using shelters, 49% report having a disability. Of course, not all unhoused people use shelters and many disabilities go undisclosed, so the actual rates are likely significantly higher. The rate of disability is also much higher within certain groups, like unhoused veterans. Centers for Independent Living (CILs) must support people experiencing homelessness if they want to reach all of the people with disabilities in their community. Virtually every CIL has served someone experiencing or at risk of homelessness, but join us on June 30th to hear from two CILs who have made concerted efforts to meet unhoused consumers where they are and provide housing and other IL supports.

This is a critical conversation and our panelists have excellent real-world resources and solutions to share. Don’t miss it!

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Registration Now Open for NCIL’s 2021 Virtual Annual Conference!

2021 Annual Conference on Independent Living Logo - LIBERTY, INDEPENDENCE, FREEDOM, EQUITY. Presented by NCIL. Graphic features a line art drawing of three pulmeria flowers.

July 19-30, 2021

The theme of NCIL’s 2021 Annual Conference is Liberty, Independence, Freedom, and Equity (LIFE).

Liberty, Independence, Freedom, and Equity represent the pillars of the work we must do. We will fight for the liberty of people with disabilities incarcerated in institutions, including nursing homes, psychiatric institutions, intermediate care facilities, jails and prisons, and other congregate settings. We will fight for the independence and freedom of people with disabilities to lead our own lives. We will fight for equity in all that we do to achieve a more just, anti-racist, and equitable society and Independent Living Movement. This is our agenda. Join Us!

All registrations received and paid by June 29, 2021 are eligible for the Early Bird registration rates.

Early Bird Registration Rates

  • NCIL Member: $150 / person
  • Non-Member: $240 / person
  • Youth (26 and younger): $90

Regular Registration Rates

  • NCIL Member: $210 / person
  • Non-Member: $300 / person
  • Youth (26 and younger): $90

Contact eleanor@ncil.org with questions about registration.

Registration Policies

BIPOC Complimentary Registrations

NCIL is excited to offer complimentary registrations to all BIPOC (Black, Indigenous, and People of Color) who want to attend NCIL’s 2021 Virtual Conference on Independent Living. NCIL is offering these complimentary registrations to all BIPOC to offer reparations for past harm and exclusion, in commitment to our transition to becoming a truly equitable and just organization. BIPOC folks will receive a discount code in the registration form to waive their registration fee.

Beginning in 2022, NCIL will offer BIPOC conference grants that will be application-based. We will release more information on the grants, including how to donate or apply in early 2022.  

Youth Registration Rate

NCIL offers a reduced youth registration fee of $90 to all NCIL members that are 26 years old or younger. We hope this special rate will allow young people to afford the Conference and organizations to sponsor young people to attend.

Replacement and Cancellations

Replacement and cancellation requests must be made in writing and sent to conference@ncil.org by July 13, 2021. No refunds will be issued after that date.

Registrant Replacement: If it becomes necessary for you to send someone in your place, please contact us as soon as possible.

Cancellation: Cancellation requests received by July 13, 2021 are refundable less a $50 processing fee.

Reyma McCoy McDeid Selected as NCIL Executive Director

The National Council on Independent Living (NCIL) board of directors is pleased to announce that it has named Reyma McCoy McDeid (she / her) as its new Executive Director, effective June 28, 2021. McCoy McDeid, a leading voice in the Independent Living (IL) movement, will bring both a wealth of leadership experience and a passion for disability justice to this role. Additionally, her assuming this role is historic because she will be the first ever Black executive director of a national disability organization in the US. She will succeed Kelly Buckland, who is retiring after 12 years.

“Our board of directors is thrilled that a visionary leader like Reyma will join NCIL as its next Executive Director to support the organization – and the IL movement – to evolve,” said board chair Sarah Launderville. “Reyma possesses the qualifications and expertise to nurture NCIL into becoming an intersectional, and therefore more successful, organization to create lasting impact for disabled people in the US – and beyond.”

McCoy McDeid is the former treasurer for NCIL and has been instrumental in engaging the organization tackling racial equity issues in the organization. Additionally, she has provided training and technical assistance to countless stakeholders in IL throughout the US. Prior to her appointment to the Biden / Harris administration as Commissioner for the Administration on Disabilities (AoD) within the Administration for Community Living (ACL), she served for over five years as Executive Director of Central Iowa Center for Independent Living (CICIL), winner of the 2018 City of Des Moines Organization of the Year award. She is the first openly autistic person to run for state legislature in US history, is an AT&T Humanity of Connection award-winning activist, and speaks regularly about the intersection of race and disability at universities, organizations like the National Association of Social Workers (NASW), and corporations like Microsoft.

McCoy McDeid holds a M.A. degree in Nonprofit Administration from Lindenwood University.

“I could not be more thrilled to accept the position as Executive Director to this organization at this particular moment in history. NCIL is privileged to have an extremely talented team and a dedicated membership base,” says McCoy McDeid. “My goal in leading this organization is to build on the achievements of the past as we grapple with critical conversations regarding where we, both as an organization and a key stakeholder in the IL movement, go from here. My assuming this role is bittersweet, because my mentors, Deidre Davis Butler and Stanley Holbrook, are no longer here to participate in this historic moment in IL history, but I am fully committed to honoring their legacy in everything I do, moving forward. Let’s get to work!”

McCoy McDeid’s appointment concludes a six-month national search process completed by NCIL’s succession planning committee, led by Sarah Launderville. “It has truly been a learning experience for NCIL to conduct this process as our country, and IL, on the whole, grapple with the systemic gaps created by racial inequity,” Launderville says. “We emerge from the candidate selection process both with the candidate we are confident will take IL to the next level and with a deeper understanding of the subtle, yet profound, barriers racially marginalized people face to assuming leadership roles in our movement. We look forward to sharing our lessons learned in the interest of supporting CILs and SILCs throughout our network to overcome these barriers to ensure the vital and necessary inclusion of racially marginalized colleagues in decision making roles, which we recognize is absolutely essential to ensuring the sustainability of IL as we know it.”

Please join the board of directors of NCIL in congratulating Reyma as she works with Kelly Buckland to ensure a smooth transition. 

Reyma McCoy McDeid, a light-complected Black woman in her early forties. Ms. McCoy McDeid has long curly brown hair and glasses. She is seated in front of a black background on a stool. She is wearing a short, form-fitted dress that features a watercolor pattern. Photo by Urban Couture Photography, Des Moines, IA.

Image is of McCoy McDeid, a light-complected Black woman in her early forties with long curly brown hair and glasses. She is seated in front of a black background on a stool and is wearing a short, form-fitted dress that features a watercolor pattern. Photo by Urban Couture Photography, Des Moines, IA.

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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