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

NCIL and the Ford Foundation: Partnering to Create an Intersectional Future for the Disability Community

The National Council on Independent Living (NCIL) is pleased to announce our newest partnership with the Ford Foundation that will both support the development of the next generation of disability advocates and enhance our efforts to fully establish Independent Living (IL) as a part of the disability justice movement.

In recent history, there have been substantial changes to the status of disabled people in the United States as a result of the passage of disability rights legislation like the Americans with Disabilities Act (ADA). Yet, as NCIL embarks on our fortieth anniversary, we recognize that, for us, the vital work of disability justice is just beginning. Our movement is at a pivotal point in time, where we have both the wisdom of key historic figures in IL and disability rights to remind us of how far we’ve come and the insight of emerging leaders to show us where we need to go next. The generous grant funding from the Ford Foundation will assist us in getting there in several key ways, including the relaunching of our programming geared towards young disabled people into a multigenerational and intersectional initiative that connects the next generation of decision makers with disabilities with those who have paved the way. 

“The work toward equity requires a diverse disability movement and leadership that centers disability in all forms of injustice,” Rebecca Cokley, Program Officer at the Ford Foundation, remarks. “The Ford Foundation is proud to support NCIL to help build the next generation of grassroots disabled leaders.” 

“I came to here to do exactly what the Ford Foundation is now supporting us to do. I couldn’t be more humbled at the opportunity to serve as leader for this organization during such a turning point for IL and I look forward to seeing what happens next for us,” notes Reyma McCoy McDeid, NCIL’s Executive Director.

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.

Since its inception, NCIL has carried out its mission by assisting member CILs and SILCs in building their capacity to promote social change, eliminate disability-based discrimination, and create opportunities for people with disabilities to participate in the legislative process to effect change.

Media Contact:

Jenny Sichel
Program Coordinator
jenny@ncil.org
www.ncil.org

Planet Fitness, Home of the Judgement Free Zone, and the Coalition for Inclusive Fitness Announce Accessible Exercise Equipment Commitment Benefitting People with Disabilities

Hampton, N.H. (September 21, 2021) — Planet Fitness, Inc. (NYSE: PLNT), one of the largest and fastest-growing global franchisors and operators of fitness centers with more members than any other fitness brand, and the Paralyzed Veterans of America, National Council on Independent Living, and American Council of the Blind (collectively “Coalition for Inclusive Fitness” or the “Coalition”) today announced a commitment to expand access to accessible exercise equipment.

“As a leader in the industry and home of the Judgement Free Zone®, it is our mission to provide an inclusive and welcoming environment to anyone who comes through our doors,” said Chris Rondeau, Planet Fitness’ Chief Executive Officer. “People with disabilities face significant barriers when attempting to access health and wellness activities, and it’s clear that health inequity is often due to a lack of access and opportunity. Today’s commitment is another way we are working to eliminate barriers and enhance people’s lives by providing a high-quality fitness experience for everyone.”

The Coalition is focused on working with global organizations to build inclusive health communities that provide people with disabilities equal access to, and opportunities for, healthy living. Planet Fitness is committed to providing inclusive equipment in all new stores and adding it to existing stores across the country as franchise owners replace current offerings, as inclusive commercial grade equipment becomes available for purchase and is approved by Planet Fitness for inclusion in its clubs.

Planet Fitness will enhance the amount and variety of accessible equipment provided at its clubs by adding new inclusive equipment that conforms with ASTM standards as it becomes commercially available for purchase after clearing through a due diligence process, in accordance with set phased-in time parameters.

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Register Now for a Webinar on the Emergency Rental Assistance Program

Source: Administration for Community Living (ACL)

Are you serving people at risk of eviction or who have been evicted? Are you working with landlords whose tenants are behind on rent as a result of the COVID-19 pandemic? Do you serve people facing housing instability or economic hardships?

If you answered, “yes,” to any of those questions, then this webinar is for you! Join the Administration for Community Living, in partnership with the U.S. Department of Housing and Urban Development, the U.S. Department of Treasury and the Consumer Financial Protection Bureau on September 30 at 11:00 am ET to learn about tools and information you need to help the people you serve to learn more about and apply for Emergency Rental Assistance resources.

Registration is required, and the webinar will be recorded. If you have any questions, please send an email to HSRC@acl.hhs.gov.

Registration Open – Center on Knowledge Translation for Disability and Rehabilitation Research 2021 Online Conference: Research Results for Policy Outcomes

Register today for the Center on Knowledge Translation for Disability and Rehabilitation Research (KTDRR) 2021 Online KT Conference: Research Results for Policy Outcomes.

The free virtual conference occurs across three afternoons during one week: 1:00 – 5:00 pm Eastern each day on October 25, 27, and 29, 2021. 

The conference is designed for grantees, other stakeholders of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), and interested researchers and practitioners. Global experts will address a range of policy-relevant topics, including: 

  • Why is it important to engage policy-oriented stakeholders early, and what are good ways to do that?
  • What are the best ways to share information with policymakers?
  • What are examples of research-informed policy?

The conference also provides opportunities to network with other KT experts and researchers. 

Follow the Center on KTDRR on Facebook and Twitter for regular updates, and join the conversation using the #KTDRR21 hashtag. 

Questions? Email Tracy Bauman at TBauman@air.org

NCIL Mourns the Loss of Marilyn Golden

The staff and governing board of the National Council on Independent Living (NCIL) are saddened by the death of our friend and colleague, Marilyn Golden. She was a key figure in the disability rights movement and her tireless work to protect people with disabilities from legislation that could end our lives prematurely has saved countless people from an early death. We join the Independent Living community in mourning this great loss and share the following tribute from the Disability Rights Education & Defense Fund in remembrance of Marilyn.

In Memory of Marilyn Golden

Disability Rights Education & Defense Fund

Marilyn Golden, senior policy analyst for the Disability Rights Education & Defense Fund (DREDF), died at home on September 21, 2021, surrounded by her family. A long-time disability rights advocate, she played a key role in the development, passage, and implementation of the Americans with Disabilities Act of 1990 (ADA). Her advocacy molded and shaped accessibility in the United States and improved architectural access and standards worldwide. She spent more than three decades working to see that the ADA was implemented and enforced, and teaching others the value of disability civil rights via, and beyond the law.

“Working on the ADA was one of the most important experiences of my life,” said Marilyn when asked about the impact and evolution of the ADA in 1999, “and it is something I’ll never forget. Something I treasure and value–to both have such an incredible experience and also to make a contribution.”

And contribute, she did.

From her leadership on both the development and implementation of the ADA, to the unglamourous, nitty gritty details she steadfastly injected into statutory guidance and regulation, to the people she trained and gently mentored every step of the way, our friend and colleague Marilyn Golden changed for the better how we use public spaces, design buses, trains, planes, and boats, and create equitable transit services. She also thought that assisted suicide was dangerous public policy for disabled people and her opposition never faltered, even in the face of powerful forces working for legalization.

Action Alert: Submit Your Comments on SSI to the Senate!

Yesterday, the Senate Finance Subcommittee on Social Security, Pensions, and Family Policy held a hearing on Supplemental Security Income (SSI). The purpose of the hearing was to focus on ways to improve the SSI program. See more information about the hearing, “Policy Options for Improving SSI”

The SSI program is meant to provide financial help to disabled people and older adults to meet their basic needs. However, many of the program rules haven’t been changed in decades, and they do not reflect the cost of living in 2021. Because of this, a majority of people on SSI are living in poverty. The SSI program needs to be updated, and we are hopeful that Congress will take this opportunity to make real change.

The Senate Subcommittee is allowing the public to submit “statements for the record” about this hearing and the SSI program. These statements will let Congress know there is strong support for making improvements to SSI. The statements will help them understand how badly these changes are needed. Statements must be submitted by Tuesday, October 5, 2021. It is important for Congress to hear from all of us, so please share this with your networks, and CILs, please share this with your consumers!

Social Security Works has put together a website with sample statements you can personalize. We have also included sample talking points and information about how to submit a statement below.

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NCIL Executive Director Selected for Ibram X. Kendi’s Antibigotry Convening

The National Council on Independent Living (NCIL) is pleased to announce that its Executive Director, Reyma McCoy McDeid, has been selected to serve as a Fellow for Dr. Ibram X. Kendi’s Antibigotry Convening.  Dr. Kendi, author of the best-selling book, How to be an Antiracist, is the founder of the Center for Antiracist Research at Boston University, which is home to the Antibigotry Convening, a program that “aims to define bigotry in structural terms, examine the ways that structural bigotry harms diverse communities, generate an antibigotry policy report, and motivate an antibigotry movement. The project will involve a series of virtual workshops in the Fall of 2021, and will culminate in a virtual symposium in January of 2022.”


As the sole representative of a disability organization to participate in the Antibigotry Convening, Reyma further positions NCIL as a wayshower at the intersection of race and disability.  From Reyma: “This is an incredible opportunity- not only for NCIL, or the disability community, but for society at-large because we are finally starting to see that not meeting the needs of racially marginalized disabled people- either unintentionally or intentionally- is a form of ableism, as discussed by Dr. Kendi and Rebecca Cokley earlier this summer.  For many in IL, this is a way of looking at ableism that might feel unfamiliar.  But, if you’ve ever wondered why your CIL has struggled to engage with racially marginalized consumers, then not understanding how the disability experience for racially marginalized consumers- including how ableism manifests in their lives- may be a part of the issue.  I look forward to taking what I learn during my time as a Fellow with the Antibigotry Convening to further support NCIL’s member network in providing the Core Services to racially marginalized consumers in ways that are transformative- both for consumers, but for IL, as a movement.”


More information on the Antibigotry Convening can be found by visiting the website.

NCIL’s Commitment to People with Intellectual Disabilities

Accessibility and inclusion are very important. They are important for all people with disabilities. The Centers for Disease Control (CDC) says that there are 6 million people with intellectual disabilities. The National Council on Independent Living (NCIL) wants to make sure that people with intellectual disabilities can be members and leaders, just like any other person with a disability. This is why we want to make changes to everything that we do. We want to make sure that NCIL is accessible and inclusive to people with intellectual disabilities. This includes our meetings, rules (also called “bylaws” or “standard operating procedures”), trainings, conferences, and how we talk with our members.

The people that work at NCIL have wanted to do this work for a long time. We met last year and made a plan. But, because of COVID-19, our work at NCIL had to change. We had to spend more time doing things we didn’t normally do in order to work from home. We had to spend a lot of time focusing on new issues. We have not been able to work on the plan we made as fast as we thought we would.

But, we are still committed to making sure that we are accessible and inclusive to all people with disabilities. Another word for “commitment” is “promise”. We promise to do this work and are starting to do what we can right now. One thing that we are starting is writing our statements in plain language as much as we can. That is just one thing we are doing, and we know that there is a lot more work to do.

While we are working to make NCIL accessible and inclusive to people with intellectual disabilities, we are also learning more about what works. These are called “promising practices.” We want to share what we are learning with other organizations that serve people with disabilities, too. One promising practice is this: instead of writing plain language versions of statements, we are sometimes writing statements only in plain language.

The most important part of this work will be making sure that people with intellectual disabilities can also be leaders and employees at NCIL. This is how people with intellectual disabilities can help make these commitments a reality. NCIL’s new executive director, Reyma, was the executive director of a Center for Independent Living (CIL). Her CIL helped many people with intellectual disabilities with their careers. Before Reyma worked at that CIL, she led Iowa’s largest community-based program that helped people with intellectual disabilities with their careers. Reyma would like to use her skills to make sure that NCIL is a place where everyone, especially people with intellectual disabilities, can work and be a leader.

If you have any questions about NCIL’s commitment to making sure we are accessible and inclusive to people with intellectual disabilities, please contact Reyma at reyma@ncil.org.

IL-NET T&TA Center Presents… A National Webinar: How CILs Can (and Should!) Support Consumers in the Criminal Legal System

September 28, 2021; 3:00 – 4:30 p.m. Eastern

Register online

We all know that Centers for Independent Living (CILs) are required to assist with transition (and diversion) from nursing homes and other institutions. Most CILs are uniquely skilled and adept at nursing home transition, but “other institutions” can be challenging for CILs to define and approach. Join us to learn how two CILs have built successful programs to help people with disabilities transition out of (or avoid) the criminal legal and prison systems. Transitioning back to the community from these circumstances presents its own unique challenges and takes particular skills, considerations, and lived experiences to get it right, but it is necessary and achievable.

CILs can (and should!) be supporting consumers in the criminal legal system. Join this free webinar to learn how two CILs have done just that – and how you can, too!

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

Target Audience: Executive Directors, program staff, and board members of Centers for Independent Living.

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Take Action to Ensure Full Funding of HCBS in the Reconciliation Package!

The House of Representatives expects to finalize the budget reconciliation package this week before sending it off to the Senate. Negotiations are still underway, but things are moving quickly, and action is needed now to ensure the disability community’s needs are met! 

As we mentioned in our previous alert, the current package proposes funding home and community based services (HCBS) at $190 billion. While this number is more than House negotiators started with – largely because of the advocacy of the disability and labor communities! – it is less than half the amount promised in President Biden’s American Jobs Plan, and not nearly enough to meet the needs of disabled people across the country.

Millions of our people are still stuck in institutional settings. Over 800,000 are on waiting lists for HCBS – many who will wait years before receiving the supports and services they need. Congregate settings have been – and continue to be – hit hard by COVID-19. The direct support workers who keep us safe in our homes and the work they do have been undervalued for years, both because providing services to disabled people is not seen as valuable, and because many of these workers are Black and brown women. Improving wages and benefits for our in-home workers values the work being done and the people doing the work. Investing in HCBS is critical to protecting disabled people and our direct support workers, and the COVID-19 pandemic has made it more urgent than ever.

Take Action!

President Biden proposed a major investment in HCBS, and Congress introduced the Better Care Better Jobs Act (BCBJA) to put that proposal into action. We need Congress to fully fund HCBS in the budget reconciliation package! Our Members of Congress need to hear from us NOW as they wrap up negotiations and finalize the package. 

Contact both your Senators and your Representative today! Tell them they MUST meet the needs of their disabled constituents and the direct care workforce in the reconciliation package! 

More information – including how to contact them and a sample script – are below.

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