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independent living policy for wonks and wonkettes

New Stories by Youth at the CareerACCESS Blog

CareerACCESS, a community-driven proposed program of reforms to SSI that will provide an alternative benefits program for youth with disabilities, has a new blog that features stories of youth with disabilities across the US and their experience with SSI.

One recent installment is called “Receiving SSI: Are You Safe? Or Suffocating?” by D’Arcee Neal. Check out D’Arcee’s story below, and read more stories and take action at:

Receiving SSI: Are You Safe? Or Suffocating?

By D’Arcee Neal

Photo of D’Arcee NealAs I write this blog, I’m sitting in my first office that I’ve been at for almost a year now. Thinking about the path that got me to this place is one that is reminiscent for almost all millennials these days, but I’d add that for those of us with disabilities, the hardship is only magnified by systemic inadequacies and limitless red tape.

Social security is for many, a needed relief to help mitigate circumstances where too little money would put you on the streets, starving. In places like North Carolina where I used to live, it provided me a comfortable moment to breathe after school when I had lost my job. But I have cerebral palsy. I don’t drive. And SSI was making me lazy, and complacent in a place where I knew I could do better. After my first internship with NASA in DC, in a city providing me with autonomous transportation anytime, anywhere, I knew I could never go back to living in a place where I called friends for a ride just to leave the house. After studying abroad in Germany, traveling in Europe and completing my Masters in London, I never had any intention of staying in North Carolina, but for those of us who want to branch out after school, current SSI rules make that all but impossible.

For the next two years and some change, I was unemployed and harder still, I lived in DC, on SSI. Being restricted on income is hard enough without a sufficient work history to support you. But when you’re trying to live and find work in the second most expensive city in America? You learn quickly about what my friends and I call “The Struggle.” I lived off a medium suitcase, and a twin bed in a shared room on the edge of the metro where my rent was 85% of my check, because if you wanted to be mobile in the city, you had no choice. I made $20.00 last two weeks for food and giving up 8 bucks for a Netflix account was my only luxury, because if not, I would’ve went crazy. But SSI was there, and I made it work until I worked enough temp jobs and internships to get myself hired to a corporate position. But without the money to save, I calculated trips, planned out resources and depleted myself of a social life completely. This works for some people, but I knew what I wanted out of my life and being tied to SSI was strangling me emotionally.  [Read more...]

NCIL Fundraiser: AmazonSmile

When you shop at AmazonSmile, Amazon donates 0.5% of the purchase price to the National Council on Independent Living. Bookmark the link and support us every time you shop.

Upcoming Department of Labor Changes Affecting Personal Care Services: What CILs Need to Know

New Community Opportunities Center Presents…A National Webinar 

November 19, 2014; 3:00 – 4:30 p.m. Eastern

Please Note: This is not a webinar hosted by NCIL. Please direct all questions to Independent Living Research Utilization (ILRU).

Logo - ILRUOn January 1, 2015, a new Department of Labor (DOL) rule will go into effect that will change the rules surrounding the companionship and live-in worker exemptions for domestic service workers. It is vital that CILs understand where they need to review their operations and approaches and where they need to take action to come into compliance with this new rule.

Please join ILRU November 19th to learn about the new Home Care Rule and changes affecting personal care services. This webinar, presented in collaboration with the National Resource Center for Participant-Directed Services, will 1) provide an overview of the DOL’s new Fair Labor Standards Act Home Care Rule and assess how the rule could impact CILs, particularly CILs that provide personal care services, 2) cover DOL Administrator’s Interpretations 2014-1 and 2014-2 on shared living and joint employment, and factors that affect joint employment in self direction and direct services, and 3) discuss the latest non-enforcement announcement and how it may impact CILs across the nation.  [Read more...]

FLSA Tool Kit Supplement: An Overview of the Non-Enforcement Period

Source: National Resource Center for Participant-Directed Services

Logo - National Resource Center for Participant-Directed ServicesThe NRCPDS is excited to announce the release an important supplement to the Tool Kit. This new tool is a resource for participant direction program stakeholders in response to delayed enforcement of the rules promulgated by the US Department of Labor (DOL) that will take effect January 1, 2015. Additional tools and resources will continue to be added to it over the coming weeks and months.

Introducing Angela West, New Chair of the NCIL Youth Caucus!

By Angela West

Angela West poses for a photo in front of the United States Capitol - she is wearing a purple flower dress and sitting in her wheelchairI am excited to be the Chair of the NCIL Youth Caucus. My first experience with NCIL was when I was awarded a sponsorship to attend the NCIL Conference in 2013. I have been an active member of my local CIL where the staff nominated me for the scholarship. While I was at the conference, I was extremely energized by being around so many advocates from around the country. In 2014, I was awarded another sponsorship to attend the 2014 NCIL Conference. While I was at the conference, I met Allie Cannington, NCIL’s Youth Fellow, and became encouraged to become a part of the youth Independent Living Movement.

It is my hope to see the Youth Caucus expand to become an intricate part of NCIL. Young people with disabilities have stories that can impact changes to society that are critical and should be shared. The youth caucus is a place where youth with disabilities can be open and discuss how to impact society with their experiences. Our members are not only committed to the youth caucus but would like to be a driving force in achieving NCIL’s mission. The voices of the youth are important, not just for tomorrow, but for today.

To learn more about the Youth Caucus and how to get involved, please email Angela at

An Update from the NCIL ADA / Civil Rights Subcommittee

The 113th Congress is coming to a close. The final weeks of 2014 are also the final weeks of this Congressional session. NCIL’s ADA / Civil Rights Subcommittee is preparing for this upcoming change by reviewing bills on ADA compliance introduced during the past two years. There were a few bills introduced in early 2013 that continue to be presented in each Congressional session. 

In the 113th Congress, three such bills were introduced in the House:

  • H.R. 203, the Pool Safety and Accessibility for Everyone Act (Pool SAFE Act), introduced by Representative Mick Mulvaney (R-SC);
  • H.R. 777, the ADA Notification Act of 2013, introduced by Representative Duncan Hunter (R- CA), amends the Americans with Disabilities Act of 1990 to deny jurisdiction to a state or federal court in a civil action a plaintiff commences for remedies for disability discrimination; and
  • H.R. 994, the ADA Compliance for Customer Entry to Stores and Services Act (ACCESS Act) of 2013, introduced by Representative Ken Calvert (R-CA), amends the Americans with Disabilities Act of 1990 to prohibit an aggrieved person from commencing a civil action for discrimination based on the failure to remove a structural barrier to entry.

NCIL’s ADA / Civil Rights Subcommittee and our allies were able to stop momentum of co-sponsors to all of the bills in 2013 and no comparative bills were introduced in the Senate. NCIL provided education and advocacy to Congressional Representatives about the serious implications these bills have on the implementation of a 24 year old law. The Subcommittee is preparing for outreach in the 114th Congress because, unfortunately, these bills continue to be introduced each session.  [Read more...]

New Community Learning Exchange – Lead On: Igniting Youth Voice, Promoting Youth Choice

The National Collaborative on Workforce and Disability for Youth (NCWD/Youth) and the Institute for Educational Leadership (IEL) are hosting a Community Learning Exchange (CLE) entitled Lead On: Igniting Youth Voice, Promoting Youth Choice. The CLE is not a conference, but rather an opportunity for community teachers, leaders, and activists of all ages and stages to come together for deep learning. The Lead On CLE will bring together youth with disabilities and their peer and adult allies in efforts to increase youth voice.

  • Who: Teams of 3-5 youth and adults (including those with disabilities, family members and/or caring adults, and youth service professionals)
  • When: December 11-14, 2014
  • Where: Washington, DC
  • Learn more / register
  • Download the brochure (PDF)

NCIL Path to Empowerment for Consumers with SCI Grants

NCIL is excited to announce that we have received a grant through the Craig Neilsen Foundation! NCIL is seeking five (5) to ten (10) Centers for Independent Living (CILs) that are interested in providing programs to enhance the quality of life for people with SCI.

NCIL will provide funding ranging from $10,000 to $25,000 to CILs interested in providing Independent Living, Employment, Assistive Technology or Sports & Recreation programs. Examples include: Independent Living – one-to-one or group IL skills training; one-to-one visits to people with SCI in rehab facilities; one-to-one assistance to individuals wanting to leave nursing homes for more independent living arrangements; Employment – assistance with resume and interview preparation, applying for jobs and learning how to handle disability issues or concerns during the interviewing, hiring and employment process; Assistive technology – assisting consumers in identifying and acquiring necessary technology to enhance independence and quality of life; and Sports & Recreation – programs that teach wheelchair sports, provide fitness, wellness and nutrition opportunities and exercise classes for people with SCI.

NCIL will select the CILs that best demonstrate the capacity and resources necessary to make the greatest impact for consumers with SCI. All program applicants in each focus category must demonstrate the capacity to enhance quality of life for people with SCI. Additionally, applicants should document how they will fulfill the Neilsen Foundation evaluation criteria including impact, innovation, and relevance to the area of focus on traumatic and chronic spinal cord injury; feasibility based on documented experience, expertise, available resources, and organizational commitment; sustainability of proposed project or program; collaboration and demonstration of meaningful community partnerships including the avoidance of duplication of services and demonstration of shared community resources; and clear project evaluation methods. While applicants must communicate how their proposed activities will improve outcomes for consumers with SCI, NCIL acknowledges and appreciates that programs funded under this grant will serve consumers with all types of disabilities. Applicants must be Centers for Independent Living that are members of NCIL.

To apply, interested parties must use the Application Form, which is available in three formats:

The application deadline is 11:59 PM EST, Monday, December 8, 2014. Late applications will not be accepted or considered for funding. Applications must be submitted via email by the application deadline to Tim Fuchs, Operations Director, at

Action Alert: Tell Senator Reid to Withdraw the Nomination of Robert Brown to the National Council on Disability!

NCIL Members,

We need you to tell Senator Harry Reid (D-NV) that we have a problem with his decision to nominate Mr. Robert Brown of Nevada to the National Council on Disability (NCD).


NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. The Workforce Innovation and Opportunity Act of 2014 (WIOA) transitions NCD from 15 members appointed by the President to nine members. The President shall appoint five members with the other four members appointed by Congress, two from the House and two from the Senate leaderships.

Senator Reid has chosen Mr. Robert Brown, a man who does not support the ADA Guiding Principles of equal opportunity, full inclusion, independent living, and economic self-sufficiency.

Mr. Brown has publicly stated in an editorial in the Las Vegas Review Journal, “Some utopian academics would like to eliminate Section 14(c). They believe people with severe disabilities are being unfairly exploited and that all workers should be paid at least the minimum wage. On the surface, this position seems reasonable. Upon rational examination, it is nonsense.” Read the editorial.

The NCD has proactively worked on a phase-out plan to end Section 14(c) and subminimum wage practices. NCIL has been a leader in the dismantling of segregated living as well as segregated employment. As the lead disability rights organization that assisted in crafting the Workforce Innovation and Opportunity Act of 2014, NCIL took a strong position and supported the Section 511 provision. This provision works to end the use of subminimum wage employment for people with disabilities. WIOA also provided a legislative definition for Competitive Integrated Employment and made Customized Employment a part of federal statute within the Rehabilitation Act. None of these things are supported by Mr. Robert Brown of Nevada!

Take Action

We need to send letters telling Senator Reid that his choice is offensive and against everything the disability community and the Independent Living Movement stand for.

Please use our sample letter, fill in your organization’s information, and send it to Senator Reid this week.

  • FAX your letter to: 202-224-7327
  • To email your letter, go to and click the envelope at the bottom of the page.

Stay tuned for further information.

New CRPD Video Available on YouTube

Source: United States International Council on Disabilities (USICD)

CRPD Logo - Convention on the Rights of Persons with DisabilitiesA brand new video lets you feel the energy of advocacy activities on the UN Convention on the Rights of Persons with Disabilities (CRPD) in DC during NCIL’s 2014 Annual Conference on Independent Living.

On July 29, IL advocates rallied and called for U.S. Senators to ratify the CRPD! Please propagate this captioned 6-minute video via your networks and remind your contacts that they can take action to support the CRPD at!