• Wednesday, October 30, 2019, 3:00-4:30 pm Eastern
• Register online

This webinar is hosted by Not Dead Yet and Disability Rights Education and Defense Fund (DREDF)

What Will You Gain By Attending:

• Familiarity with the key issues, arguments and common questions
• Materials that explain, detail, and document individual cases of assisted suicide problems and abuses
• Understanding what disability has to do with assisted suicide

On August 7, 2019, the Administration abruptly decided to end consideration of non-military deferred action requests, commonly known as medical deferred action. With no warning, individuals began receiving letters from U.S. Customs and Immigration Services (USCIS) informing them that their pending applications and renewals for deferral had been denied, and they had 33 days to leave the country or risk deportation.

Medical deferred action allows immigrant children with life-threatening health conditions and disabilities (and their families) to stay in the U.S. for treatment. Medical deferment allows these children to receive government-funded healthcare, and allows their family members to work legally while their child receives medical treatment. Individuals approved for deferment are from countries where life-sustaining and life-saving treatments are not available, and therefore, they will not have access to proper treatment if they are deported.

The 21st Century Cures Act, passed into law December 2016, includes a provision requiring all states to implement Electronic Visit Verification (EVV) systems for home health care services and personal care services paid by Medicaid. Each state must have some form of EVV in use by January 1, 2020.

States are required to: ensure a robust stakeholder engagement process with consumers and independent providers of home care services; follow best practice guidelines; and ensure training is provided on use of EVV systems.

NCIL is conducting a survey on the impact of EVV in the United States. The intent and purpose of this survey is to collect information from end users of EVV systems (consumers and their home care providers) regarding their experience participating in their state’s EVV selection process and use of EVV on a regular basis. Please include as much information as you are willing to provide.

• Take the survey.

The survey is also available in Word and plain text.

On June 14, 2019, the Trump Administration published a proposed regulation that would roll back the nondiscrimination protections under Section 1557 of the Affordable Care Act (ACA). Section 1557 is the provision of the ACA that prohibits discrimination in healthcare programs and activities on the basis of race, color, national origin, sex, age, or disability. The Administration’s proposal is extremely dangerous and discriminatory, and we need to do everything we can to stop this proposal from being finalized!

Specifically, the proposal would limit the number of health programs subject to Section 1557, and it would narrow the scope of the protections under Section 1557 in the following ways:

• Gender identity and sex stereotyping would be completely eliminated from the definition of sex discrimination, the definition of gender identity would be eliminated, and all references to sexual orientation in HHS regulations would be erased. This could allow healthcare providers to deny transgender people gender-affirming care, and would result in queer and trans people being significantly less likely to get quality healthcare and more likely to face discrimination, abuse, or refusals of care.
• Requirements for notices and taglines that let people with Limited English Proficiency (LEP) know about language access services, including services for disabled people, would no longer be required.
• Healthcare providers would be able to refuse care and justify it under Title IX’s religious exemption. This would allow healthcare providers to discriminate against or deny abortions, reproductive health services, or other health services that a provider says violates their religious beliefs.
• The ban on insurance plan discrimination on the basis of disability, age, and other factors would be removed, which would disproportionately impact people with disabilities and chronic illnesses. The removal of protections around benefit design would disproportionately impact people with HIV/AIDS and other disabilities and chronic illnesses that may be treated or managed with more expensive medications or other treatments.
• The requirement for healthcare providers to share notices that inform people of their nondiscrimination policy, their rights, how to file complaints if they are discriminated against, and other information would be completely eliminated.

Earlier this week, NCIL sent out an alert about taking action on the Hill after the NCIL March and Rally. In light of recent events, NCIL will no longer be participating in this action. NCIL still strongly supports the Disability Integration Act (DIA) and encourages you to talk with your members of Congress about it during your Hill Visits. As a reminder, you can read more about all of NCIL’s priorities to discuss with your members of Congress in our Legislative & Advocacy Priorities Booklet.

Legislative & Advocacy Policy Priorities: Summer 2019

• Legislative and Advocacy Policy Priorities (PDF)
• Legislative and Advocacy Policy Priorities (Word)
• Legislative and Advocacy Policy Priorities (plain text)

On Tuesday, July 23, during NCIL’s Annual Conference on Independent Living, we will be having our Annual March to and Rally at the U.S. Capitol. Following the Rally, most people do Hill Visits and meet with members of Congress. Typically, people use the free time following their visits to do some sight-seeing, buy souvenirs, or get something cold to drink after being out in the heat. This year, you have the opportunity to use your free time to make some history!

Background

We have secured a historic number of House co-sponsors for the Disability Integration Act (H.R. 555). As of this writing, there are 232 DIA House co-sponsors. We not only have a majority of the House of Representatives; a majority of members for every committee of jurisdiction are co-sponsors of the bill. In January, we called on the House to pass the DIA while NCIL would be in town. With this many co-sponsors, some people expect the House to do that. After all, we have enough co-sponsors to pass the bill. Despite widespread support for DIA, Representative Frank Pallone, Chair of the Energy and Commerce (E&C) Committee, has decided the bill isn’t going to move.

Representative Pallone has such tight control over the committee and its staff that even Congresswoman Eshoo, Chair of the E&C Health Subcommittee, despite her personal support for the bill, is unable to give it a hearing. Frank Pallone should know better. Democrats are supposed to be champions of civil rights, not defenders of an unjust status quo. Even worse, he had promised to cosponsor the legislation during the 2018 campaign season!

There is someone who can fix this, though: Speaker of the House Nancy Pelosi!

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.

• Apply online.

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).