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

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).

NCIL logo - National Council on Independent Living

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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Action Alert: Join Online Press Conference Celebrating the Introduction of REAADI & DRMA!

Join us for an online press conference celebrating the introduction of the Real Emergency Access for Aging and Disability in Disasters Act (REAADI) and the Disaster Relief Medicaid Act (DRMA) in both the Senate and the House of Representatives!

REAADI and DRMA are the first disaster laws to:

  • prioritize the rights of the disability community and older adults, and
  • were developed with direct input from the disability community!

(Find out more about REAADI & DRMA)

When: Monday, June 10; 2:00 p.m. EST

Join the Press Conference:

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Action Alert: Ask Congress to Sign-on as Original Co-sponsors to Proposed Bills Protecting the Rights of Disaster-Impacted People with Disabilities

NCIL is working with the Partnership for Inclusive Disaster Strategies and Senator Casey, Representative Langevin and Representative Shalala on two historic pieces of disability and disaster legislation that will dismantle barriers faced by disaster-impacted people with disabilities, older adults, and other Medicaid-eligible people impacted by disasters and increase disaster resources for CILs.

The Real Emergency Access for Aging and Disability Inclusion for Disasters Act (REAADI) and the Disaster Relief Medicaid Act (DRMA) will be introduced into both the Senate and the House of Representatives on June 10, 2019.

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SILC-NET Presents… A National Teleconference & Webinar: Statewide Independent Living Councils (SILCs) & Designated State Entities (DSEs) – Addressing Roadblocks and Authority Issues

August 29, 2019; 3:00–4:30 p.m. Eastern

Register online or by using the printable registration form (PDF)

Presented by:

  • Marijane Waldron, Director, WV Division of Rehabilitation Services
  • Michelle James, Chief Financial Officer, WV Division of Rehabilitation Services
  • Ann McDaniel, Executive Director, WV Statewide Independent Living Council

The Statewide Independent Living Council (SILC) and the Designated State Entity (DSE) must work together. Don’t take our word for it – it’s the law! Whether you believe there is room for improvement or you feel as though you are at a total impasse, this webinar is designed to clarify what the law says about the roles and responsibilities of the SILCs and DSEs, along with practical examples of how you can each improve your relationship.

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