the advocacy monitor

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

Information Alert: ACL’s New FAQ Document for CILs

As many of you have seen by now, ACL has released a document entitled FAQ: Allowable Advocacy Activities (Word). The document is intended to describe how CILs can meet federal requirements under the Rehabilitation Act to conduct advocacy without violating federal laws against lobbying with federal funds. We are currently in the process of reviewing this document, but we have major concerns.

Systems advocacy is a core service of Centers for Independent Living, which means CILs are federally mandated to conduct advocacy activities. While understanding what types of advocacy are allowable with federal funds is important, this document demonstrates a clear overreach on the part of ACL. That said, we will not be intimidated, and we will strongly defend the right – and responsibility – of CILs to advocate.

We are currently reviewing this document and considering our response, and we will send out additional information once it is ready. In the meantime, we want to hear from you. We would welcome your thoughts on this document, including any concerns or relevant experiences you would like to share. We also invite you to send any questions you have, and we will respond to those directly or pass them along to ACL with our feedback. Please send your input and questions to Kelly at

Please note: If you are coming to NCIL’s Annual Conference, this document, and concerns and responsibilities regarding advocacy and lobbying will be discussed before the Annual March & Rally and Hill Visits.

CIL-NET Presents… A National On-Location Training: Disability, Diversity, and Intersectionality in CILs

CILs are always striving to reach unserved and underserved populations and to better represent the vibrant, racial, ethnic, linguistic, and multi-cultural communities that we serve. If you would like effective, practical information on how to accomplish this at your CIL, then you simply cannot afford to miss this training. Sign-up today!

At our core, Centers for Independent Living are community-based, civil rights organizations. Sure, we focus on the core services of Independent Living, but disability rights are civil rights, and the Independent Living Movement shares similarities and a siblinghood with other civil rights movements. We have a strong enough foundation in human rights to expand our celebration and inclusion of people with disabilities from other marginalized communities and identities in our organizations.

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Voices of Health Care Media Training for Health Care Storytellers

Voices of Health Care is putting together a media training for health care storytellers next month in Denver (July 20-21, 2019), to teach people how to effectively tell their story, talk to reporters, write letters to the editor, do selfie videos, etc. They hope this will be the first of many, and are accepting up to 50 people. Apply using the link below and spread the word to interested health care activists and people with health care stories to tell.

Urgent Action Alert: Urge Your Representative to Vote YES on MFP Tonight!

The House is set to vote on a bill to extend the Money Follows the Person (MFP) program tonight! The Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 (H.R. 3253) was introduced late last week, and the House of Representatives is expected to vote on it at 6:30 p.m. Eastern today. H.R. 3253 will extend MFP for 4.5 years through 2023. Among several other things, it will also extend the home and community-based services (HCBS) spousal impoverishment protections through March 2024.

The vote tonight was scheduled as a voice vote, but it has been changed to a roll call vote. This means that each member of Congress’ vote will be individually asked and recorded. We need you to contact your Representative and urge them to vote YES on MFP tonight! Make sure they know how important the MFP program is to their disabled constituents!

How to contact: All members of Congress can be reached by calling the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY).

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Add Your Organization as a Signatory to NCIL’s Chronic Pain Advocacy Letter to Congress

Because of policies aimed at addressing the opioid crisis through limiting prescriptions, people in pain are facing increasing barriers to accessing their medication and managing their pain. Many who have relied on opioids, often for decades, are seeing their medication forcibly reduced or eliminated; some are being denied medical care altogether.

Because many people with disabilities live with serious or chronic pain, our community is disproportionately affected by these policies. These harms – which may range from increased pain, to loss of function, to suicide or resorting to illegal substances – have finally been acknowledged by the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA).

Nevertheless, rigid, one-size-fits-all policies have already been enacted in over half of states and adopted by the major pharmacy chains and insurers. Similar policies continue to be proposed at both federal and state levels. The harm that has been caused cannot be undone, but action now can stop further harm from occurring.

Therefore, NCIL has drafted a letter, which will be sent to Congressional Leadership and leaders of key committees working on these issues. We are writing to educate Congress about recent actions by the CDC and the FDA that call out the dangers of these policies, and to ask Congress to work with their disabled constituents and disability rights organizations when developing future policies.

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Notice: CILs and SILCs Must Be a 2019 NCIL Member by June 24 in Order to Vote at the Annual Council Meeting!

NCIL’s Standard Operating Procedures require that CILs and SILCs pay their dues in full thirty (30) days prior to the Annual Council Meeting to be eligible to vote at that meeting. If your organization has not yet joined or renewed for 2019, you must sign-up and pay your dues in full by 12:00 Midnight on Monday, June 24, 2019 in order to vote at the Annual Council Meeting. 

If you do not join or renew by June 24, your organization will not be able to vote for the Governing Board members and Resolutions that guide NCIL’s actions and priority issues.

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Final Reminder: Comments on Subminimum Wage Due This Friday!

Updated: The Department of Labor has extended the deadline for comments for the National Online Dialogue about Section 14(c) of the Fair Labor Standards Act (FLSA). Comments are now due Friday, June 21, 2019. The sheltered workshop industry and 14(c) supporters are flooding the dialogue, so it is critical that we submit comments! Please see below for additional information, resources, and talking points.

As you know, the Independent Living community has long opposed the use of Section 14(c) certificates to pay disabled people subminimum wages. Employers use 14(c) certificates to pay disabled employees lower than the minimum wage – sometimes just pennies per hour. Paying people lower wages on the basis of their disability is discrimination, and this is one of the factors that have contributed to disproportionate rates of poverty among disabled people. This online dialogue provides us with an opportunity to share stories and information about our position, experiences, and ideas on this discriminatory and harmful practice. It is critical that our input be heard.

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Free Webinar – Holding the Course: Stabilizing Business Operations

Business is inherently risky. To start a business, you have to identify a need, build a plan, invest time and resources and work diligently to make sure that it is successful. The same is true when you manage your business. Nothing stays exactly the same. To improve or adjust to an evolving environment, you may need to change who you work with or how you deliver services. Any modification to how you do business such as development or adjustment to a business strategy involves some level of risk. The trick is to decide what kind and how much risk you can accept in order to move your business forward.

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Today! Learn about Campaign Operations with Elevate: Campaign Training for People with Disabilities

Do you want to learn how to run a successful campaign for elected office? Sign up today to join us for the second part of a five-week boot camp on core skills for running for office. Elevate: Campaign Training for People with Disabilities features five expert political consultants who will tell you everything you need to know about kick starting your campaign, crafting your message as a candidate, communicating with voters, selecting campaign staff, and fundraising. It is ideal for the first-time candidate, as well as anybody who wants to support candidates with disabilities as campaign staff, future campaign managers, or volunteers. This training is non-partisan and open to all!

At 3:00 Eastern today, we will be continuing the series with Stefan Walker, Political Consultant of The Politics Store, who will present on Campaign Operations 101. Stefan will discuss what you need to know about hiring a campaign manager and what staff is necessary for your campaign. In addition, you will learn about the role of a field coordinator and the importance of having a volunteer coordinator, and will learn about other campaign roles that may be filled by staff or volunteers. There will be lots of time for the Stefan to answer all your questions related to campaign operations!

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“I didn’t begin to thrive until I came here.” Read Eiryn’s Story and Donate to the NCIL Youth Scholarship Fund

In 2016, Eiryn Griest-Schwartzman received a youth scholarship to attend the NCIL conference. Three years later, they’re on our board as the Youth Member-At-Large. In their own words:

“Attending the NCIL conference brought me:

  • an incredible community and support system
  • a level of solidarity that I’d never experienced before, 
  • empowering resources for my transition to independence.
  • It jumpstarted my career in disability advocacy.

I didn’t begin to thrive until I came here. I financially could not have gotten [to the conference] without [the youth scholarship] and in turn never would’ve gotten involved in NCIL in any meaningful way.”

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