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

Independent Living & The Rehabilitation Act

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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2021 Annual Conference on Independent Living Wrap-Up

NCIL’s 2021 Annual Conference on Independent Living Wrap-Up is now available online.

The wrap-up provides details about NCIL Governing Board elections; resolutions passed by the membership; award winners and sponsors; a summary of the 2021 Day on the Hill; a youth update; and access to our Opening Plenary and Closing Keynote.

NCIL’s 2021 Annual Conference on Independent Living was a powerful experience. We would like to thank the NCIL membership, our conference attendees, sponsors, exhibitors, advertisers, presenters, guest speakers, staff, and everyone involved in crafting this virtual event into an unforgettable experience.

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

NCIL Mourns the Loss of Adonis Brown

It is with great sorrow that the National Council on Independent Living (NCIL) wishes to share news regarding our friend and colleague, Adonis Brown, who passed away on July 28th in Durham, North Carolina. Adonis was known for speaking openly about being an exception to the rule for children with disabilities in 1950’s USA because he thrived with his large family in spite of the fact that institutionalization was the norm for individuals who were born with significant developmental disabilities.

“My life development took place before the Americans with Disabilities Act of 1990 (ADA), or the Individuals with Disabilities Education Act (IDEA) formerly the Education for all Handicapped Children Act of 1975, or the Rehabilitation Act. Despite the barriers, stigmas, and narrow thinking of that time I persevered. In April 2010 I completed a Bachelor of Arts Degree in Psychology from Ashford University… I later went on to continue my education endeavors completing the required studies for a Master of Business Administration Degree with Specializations in Organizational Leadership and Health Care Administration. What I may lack in paid work experience I more than compensate with my drive, passion, and determination to succeed,” he wrote in his bio for the North Carolina Statewide Independent Living Council website during his tenure as a member.

Although Adonis led a life that was fully committed to the philosophy of Independent Living (IL), he was incredibly intentional in ensuring that his efforts extended beyond IL, serving on the Durham, North Carolina Mayor’s Committee for Persons with Disabilities and establishing Durham’s first Disability Resource Center. Additionally, Adonis supported a wide variety of nonprofit organizations in the capacity of board member including the North Carolina Council on Developmental Disabilities, the Association of Self-Advocates of North Carolina, The Arc of North Carolina, and the Protection and Advocacy System Administrators (P&A) for persons with disabilities in North Carolina, now known as Disability Rights North Carolina.

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NASILC and the IL-NET T&TA Center for Independent Living Present… A National Webinar – SILCs and the Importance of Autonomy: Power Struggles and Relationships with the DSE and the IL Network

September 1, 2021; 3:00 – 4:30 PM Eastern

Register online

The IL-NET T&TA Center for Independent Living is collaborating with the National Association of Statewide Independent Living Councils (NASILC) to bring you this new webinar on SILC autonomy and problems that exist between SILCs and the DSE. Our panelists will explore the critical importance of SILC autonomy and real world solutions for working through issues between the SILC and DSE (designated state entity). Join us for this highly interactive panel discussion to get the support you need with your SILCs issues around autonomy and working with your DSE.

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

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NASILC and the IL-NET T&TA Center for Independent Living Present… A National Webinar: SILC Roles and Responsibilities Within the IL Network

August 25, 2021; 3:00 – 4:30 PM Eastern

Register online

The IL-NET T&TA Center for Independent Living is collaborating with the National Association of Statewide Independent Living Councils (NASILC) to bring you this new webinar on SILC roles and responsibilities within the IL Network. Our panel will discuss SILC duties and authorities and the real world impact those can have on an IL Network. The interactive style of this presentation will provide perspective from three different SILCs and how they have become effective partners in their networks. This webinar will be great for new staff and Council members and seasoned veterans who are looking to reinvigorate the focus of their SILC. Plenty of time will be provided for open Q&A with our panelists. Sign up today!

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

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Annual Conference on Independent Living: Opening Plenary Now Available!

NCIL is pleased to release the archive of the Opening Plenary of our 2021 Annual Conference on Independent Living.

The Opening Plenary included a keynote address from NCIL’s new Executive Director Reyma McCoy McDeid. If you could not join us live, we hope you’ll take a few minutes to get to know Reyma and learn about her vision for NCIL and Independent Living.

Reyma’s introduction and speech begins at the mark 9:35 in the video.

Please enjoy this glimpse into NCIL’s 2021 Annual Conference on Independent Living. Registration is still available at ncil.swoogo.com/2021/begin.

Contact eleanor@ncil.org for alternate formats.

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

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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NCIL Welcomes Jenn Wolff and Jeremy Morris to the Board of Directors!

NCIL welcomes Jenn Wolff as Region VII Representative

Jenn Wolff Head Shot

Jenn will serve as Region VII Representative to the NCIL Governing Board, representing the states of Iowa, Kansas, Missouri, and Nebraska. Jenn was elected by the Region VII members in a special election to fill the vacancy following Ami Hyten’s election as NCIL Secretary.

Jenn is a disabled occupational therapist and organizer. She has a Masters in occupational therapy from St. Catherine’s. She practiced in an outpatient clinic for 12 years and helped develop support groups for post stroke survivors, individuals with Parkinson’s, and their caregivers.

A passion for advocacy began in 2010 around Complex Rehabilitation Technology / wheelchair insurance coverage, which led to work with UsersFirst and then United Spinal Association, which included all disability related policies. She just finished an inaugural year as program coordination with the Backbones Leaders Program, is on the Executive Council for the North American Spinal Cord Injury Consortium and helps facilitate #UpgradeMedicaid, a grassroots effort to improve policies with Iowa privatized Medicaid and get caregivers a living wage.

Welcome, Jenn! We look forward to working with you!

NCIL welcomes Jeremy Morris as Treasurer

Jeremy will serve as Governing Board Treasurer and Chair of NCIL’s Finance Committee. Jeremy was appointed to the position by Sarah Launderville, NCIL’s President, to fill a vacancy after Reyma McCoy McDeid’s resignation to accept a position with the Administration for Community Living (ACL). 

Jeremy Morris is the Executive Director at Ohio Statewide Independent Living Council. Before joining the SILC in 2017, Jeremy had been working in Independent Living over 13 years, previously serving as the Executive Director of the Access Center in Dayton, Ohio and Finance Coordinator at the Western Reserve ILC in Warren, Ohio. His background in Centers for Independent Living includes direct services, advocacy and community partnerships, and operations management.

Welcome Jeremy! We look forward to working with you!