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

One Last Chance to Fight the GOP Tax Bill! Take Action Now and Participate in Monday’s Call-In Day!

The conference committee working to reconcile the House and Senate tax bills is close to an agreement, and we expect to see a conference report tomorrow. Both the Senate and the House will likely vote shortly after, with a Senate vote expected as soon as Monday or Tuesday and a House vote Tuesday or Wednesday. This schedule may change slightly, but either way this is our last chance to fight this dangerous bill. And even though the GOP may seem to have the advantage, this is NOT a done deal. We must keep our efforts up!

NCIL logo - National Council on Independent LivingTake Action Now!

Our Senators and Representatives are feeling the pressure, and some have hinted that they may not be on board. We need to keep pushing and making sure they hear from their constituents! Tell your members of Congress that their tax bill will hurt people with disabilities and cut the revenue needed to pay for programs we rely on. Tell them that tax cuts for the wealthy and big corporations shouldn’t be paid for by jeopardizing the programs their disabled constituents need!

  • Participate in Monday’s National Call-In Day! Find more information at the Facebook event. RSVP and share widely with your networks!
  • Call your Senators and Representatives DAILY and tell them to vote NO! Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY). Find their direct numbers and local office numbers at Contacting Congress.
  • Use Resistbot to turn texts into faxes, mail, or hand-delivered letters.
  • Fax your members of Congress (use faxzero.com to find their fax number).
  • Email, post on Facebook, or Tweet with information on Contacting Congress. Join in the conversation on social media using the hashtag #TaxOnDisability.

It is important to reach out to all of our members of Congress about this issue! That said, the Senate will be voting first and is likely our best bet for stopping the bill, so we have included below a short list of priority Senators.  [Read more…]

Bipartisan Money Follows the Person Bill Introduced: Sign the Letter of Support!

Yesterday Senators Portman (R-OH) and Cantwell (D-WA) introduced a bill to reauthorize the Money Follows the Person (MFP) demonstration program. The bipartisan legislation, titled the Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources, and Care Act (the EMPOWER Care Act), would extend the MFP demonstration program through 2022.

NCIL logo - National Council on Independent LivingMFP was designed to help states transition people with disabilities from institutions into the community, and to assist states in rebalancing their long-term services and supports (LTSS) systems to increase access to home and community based services (HCBS). Since it began, 47 states have participated and over 75,000 disabled people have been liberated from institutions, and Centers for Independent Living (CILs) have played a critical role in that.

However, the program expired on September 30, 2016. While States can still use remaining grant funds through 2020, with no reauthorization or additional funding on the horizon, programs are being scaled back and will eventually end. In fact, the program expired last year and we already saw the number of new transitions decline. Reauthorizing MFP will provide additional funding for transitioning people with disabilities into the community, and it will continue incentivizing states to prioritize home and community based services.

Take Action – Sign the Letter of Support!

The introduction of this legislation is wholly due to the ongoing advocacy of the disability community, and it is a big achievement! We will continue to keep you updated on any progress or other advocacy opportunities related this bill. But for now, we need to show the Independent Living community’s strong support for this bipartisan effort! CILs, SILCs, and other organizations, please sign on to the letter of support.

Signatures are due by 12:00 p.m. Eastern on Monday, December 18, 2017.

Call for Workshop Proposals: 2018 Annual Conference on Independent Living

Resistance through Action - 2018 Annual Conference on Independent Living. Graphic features an arrow striking a heart over the letters "IL" and a target that replaces the "o" in "Mobilize"

July 23–26, 2018; Grand Hyatt, Washington, DC

Submit a workshop proposal

NCIL’s Annual Conference is the largest Independent Living event of the year. NCIL regularly hosts over 1,000 people, including grassroots advocates, CIL and SILC leadership, members of Congress, government officials, and representatives from other major organizations that work for justice and equity for people with disabilities.

NCIL’s 2018 Annual Conference theme is Mobilize: Resistance through Action. For over a year now, members of Congress and aggressive ideologues have tried their hardest to strip people with disabilities of their health and liberty. We have met these challenges head-on and will continue to do so. Some battles have been won, others lost. The goal of this year’s Annual Conference is to improve our strategy and cohesion. We are powerful, but we must share our resources, strategize, and train new advocates if we want to succeed in our efforts to protect our programs and secure the independence of people with disabilities.  [Read more…]

Holding the Department of Education Accountable: The Importance of Guidance Documents

By Rachel Bass, NCIL Fall Policy Intern

As an individual with disabilities, I have experienced challenges during my educational career. I experienced many ups and downs, and there were tribulations that I needed to overcome.

Rachel Bass Signs I Love You in ASLIn some instances, I was refused reasonable accommodations, such as an aide for my physical needs, note takers, interpreters, and other support services. These types of services were crucial for my success in school. Because the school denied me full accessibility in the classroom, every night, I would spend hours with my mother tutoring me just to complete my homework. This went on for a couple of years before I realized that I had to stand up for myself. At the young age of nine, when I attended a meeting to go over my individualized educational plan, I had to learn to stand up for myself for the first time. I told them that I was not being treated equally and requested equal access to my education.

There was another occasion when I was in 10th grade: I had to have an aide to help with my personal needs due to my physical disability. She behaved unprofessionally, inappropriately, and aggressively towards me on a daily basis. She would constantly take advantage of both my disabilities. Also, she would intentionally embarrass me because of my disabilities. For example, she became very manipulating and constantly would come up to my nose, pointing her finger directly at my face, yelling, “Do you understand me, yes or no!” repeatedly until I replied “yes” because I did not hear or understand what she was saying at first due to my deafness. She did not have a lot of patience to work with me as a deaf individual. I felt so humiliated because I did not know why she was so angry with me. I had no idea what she wanted to convey to me. She also took it upon herself to decide how much physical help I needed, regardless of the doctor’s note that was given to the administrators from my physical therapist. My aide would constantly force me to take out my own books from my backpack, even though it was against the doctors’ and administrators’ orders and caused me physical pain.  [Read more…]

University of Illinois at Chicago Seeks Research Participants Who Have Lived in Nursing Homes

The University of Illinois at Chicago is conducting a study with people with disabilities to identify and address participation disparities among people with disabilities.

A black and white photo of a person carrying a sign that reads "Institutions Aren't Solutions"Currently, they are collaborating with six Americans with Disabilities Act (ADA) Centers across the nation to learn about participation disparities experienced by people with disabilities who moved out of nursing homes. They are looking for 50 people with disabilities to help with the study. Participants will be asked to be part of one 90-minute interview to talk about their experience with living in the community after transitioning out of institutions.

In order to participate, you must meet the following criteria:

  • have a disability as defined by the ADA
  • have lived in an institution (e.g., public nursing home, institution for mental disease, intermediate care facility, or large group home)
  • age 18-64 currently or at the time of moving out of an institution
  • currently close to moving out of an institution OR have transitioned out of an institution within the past 5 years

All participants will receive a $25 gift card for completing the interview.  [Read more…]

Support NCIL While You Shop for the Holidays!

This holiday season, you can support NCIL while you shop! Shop for everyone on your list using NCIL’s custom link at smile.amazon.com.

NCIL sincerely appreciates your continued support and commitment to the Independent Living Movement.

This holiday season you can support us while you shop! Shop for everyone on your list at smile.amazon.com. You shop Amazon donates. Amazon Smile logo. Image of camera, stuffed toy, and handbag.

Assistance Animal Survey

The NIDILRR-funded Southwest ADA Regional Center is conducting a survey to learn more about the use of service animals and other assistance animals by people with disabilities in public settings.

The survey is open to US residents 18 and over who use a service animal and parents of a child with a disability who uses a service animal. The information gathered will be used by researchers to understand what access issues people may experience with their animals, as well as to develop and improve the information, support, and guidance needed for the community to improve access for assistance animal teams. These findings will also be used to improve the training and technical assistance that the Southwest ADA Regional Center provides to the public on this topic. All personal data collected in the survey will be kept anonymous and confidential.

For questions or additional information, contact Marisa Demaya at mdemaya@bcm.edu.

2018 Appropriations Update

Back in September, Congress passed a short-term continuing resolution (CR) to keep the government funded through this Friday, December 8. Last week, Congress passed and the President signed another CR to keep the government funded through Friday, December 22. This gives Congress less than two weeks to reach a longer-term spending deal.

The House and Senate have both already passed their Labor-HHS-Education (L-HHS-Ed) spending bills out of their Appropriations Committees. Both of them level fund the Independent Living Program. You can read more and see the bills in our September alert.

NCIL logo - National Council on Independent LivingThat said, we know the GOP-led Congress is intent on slashing funding, and we may very likely see changes to the current bills. Regardless, over the next two weeks, Congress has a lot to work through if they’re going to reach a deal. They have to try to align their spending bills with the priorities addressed in their dangerous budget resolution. They’ll also be attempting to overcome several contentious issues, including funding for the Children’s Health Insurance Program (CHIP), a replacement for Deferred Action for Childhood Arrivals (DACA), stabilizing the Affordable Care Act markets, and disaster recovery funding. Additionally, they’ll have to decide whether they’ll raise the cap on discretionary funding that’s required under the Budget Control Act of 2011; if they don’t, sequestration will go into effect, resulting in across-the-board cuts. Read more about the history of the Budget Control Act and sequestration in a 2012 NCIL Action Alert. If they can’t find agreement on these issues, we may end up with another short-term CR or a government shutdown.

Appropriations bills are part of an annual process that is critical for keeping our country up and running. But instead of working to figure out how to keep vital programs functioning, the GOP has spent the last few months focusing on their terrible tax bill that will eliminate much-needed funding instead. Their priorities are completely backwards, and we need to work together to ensure that the Independent Living Program and other programs hold on to their funding. We know that there are a lot of issues demanding your attention right now, but please take a moment to call your Senators and your Representative and tell them how important the Independent Living Program is to you. In the current atmosphere we will not see any funding increases, but a cut to Independent Living funding would be disastrous. Members of Congress in both the House and the Senate need to hear from their constituents about what’s really important to the people they represent!

CIL-NET & SILC-NET Present… A National Teleconference & Webinar: Know Your Resources – Orientation to the IL-NET and CIL-NET.org and SILC-NET.org

CIL-NET & SILC-NET Present… A National Teleconference & Webinar:

Know Your Resources – Orientation to the IL-NET and CIL-NET.org and SILC-NET.org

January 10, 2018; 3:00 – 4:30 p.m. Eastern

Register online

IL-NET Logo - CIL-NET + SILC-NETThe IL-NET program has operated since 1994 to support CILs and SILCs with training and technical assistance on a wide variety of topics. IL-NET’s resources cover an expansive list of topics related to CILs and SILCs, from advocacy to financial management, and everything in between. The sheer quantity of material offered by the program can be overwhelming.

Please join us for this complimentary teleconference and webinar to learn what the IL-NET has to offer you. Staff from each of our partner organizations, ILRU, NCIL, APRIL, and Utah State University’s Center for People with Disabilities will walk you through the trainings and resources they offer and how you can best access them. You will learn about online trainings and materials that you can access right away, as well as training topics for 2018 that you can add to your calendar. Don’t miss this free event!

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

Target Audience: Staff and Board of CILs, SILCs, and DSEs.

Learning Objectives

Upon completion of this training, participants will have knowledge and resources that will enable them to:

  • Describe foundational elements of the IL-NET Training and Technical Assistance project, including history, funding, partners, and roles.
  • Describe the basic layout and navigation of the IL-NET pages of the ILRU website for ease in locating information.
  • Identify the wide array of training, resources, programs and services available to CILs, SILCs, DSEs, consumers, and other stakeholders.
  • Describe IL-NET’s national peer-to-peer mentoring program and technical and intensive support opportunities.

Presented by CIL-NET and SILC-NET: Programs of the IL-NET national training and technical assistance project for Centers for Independent Living (CIL-NET) and Statewide Independent Living Councils (SILC-NET). The IL-NET is operated by ILRU, Independent Living Research Utilization, in partnership with the National Council on Independent Living (NCIL) the Association of Programs for Rural Independent Living (APRIL), and Utah State University’s Center for Persons with Disabilities.

NCIL Needs Your Help Documenting the Impact of Electronic Visit Verification!

When the 21st Century CURES Act passed into law late last year, it included a provision requiring states to implement Electronic Visit Verification (EVV) systems. EVV systems vary by state, but they all entail electronic monitoring of personal care attendants (PCAs), home health care workers, and the consumers they work for.

A NCIL Member holds a sign that says "Resist Injustice"Prior to its passage into law, NCIL released a statement of opposition to EVV, and we continue to strongly oppose it. EVV is discriminatory, and it undermines consumer direction – a key tenet of the Independent Living Movement. EVV is a violation of the privacy of people with disabilities who use PCA and home health services. On top of that, it is expensive, burdensome, and less effective than traditional methods.

We have heard from people with disabilities around the country who are already beginning to feel the negative impact of this requirement. NCIL is committed to considering all available options to fight this harmful law, and in order to do so, we need your help!

Please share your experiences with us. Please answer the questions below, and share any other relevant information, by Friday, December 29, 2017. Send your responses to Lindsay Baran at lindsay@ncil.org.

  1. Has your state implemented or begun to implement EVV?
  2. How does EVV work in your state? For instance, are they using telephonic timekeeping? Are they requiring the use of GPS tracking? Does the system involve random checks, or complex activity logs? Share the details with us.
  3. Have you been personally affected by EVV? For instance, have you been more restricted from accessing your community freely? Have problems with the system or technology delayed payments? Have attendants quit due to new burdensome requirements?

[Read more…]