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

Healthcare & Community Living

NCIL Statement on the Fifth Circuit Court’s Ruling in Texas v. United States

The National Council on Independent Living (NCIL) is deeply concerned by Monday’s ruling from the Fifth Circuit Court of Appeals in Texas vs. United States. The court ruled that the individual mandate of the Affordable Care Act (ACA) is unconstitutional and sent the case back to the lower court to decide whether the remainder of the ACA can remain intact without it. Read the ruling (PDF). However, the district judge at the lower court has already ruled the entire law is unconstitutional, and this same judge now has the power to determine the fate of the ACA. 

The Court‘s decision puts the health care of millions of people in jeopardy. There is no question that repealing the ACA would have devastating consequences, and it would disproportionately hurt disabled people. Because of the ACA, insurers cannot discriminate against people with pre-existing conditions by denying coverage, charging higher premiums, or refusing to cover care related to those conditions. Insurers can’t impose lifetime or annual dollar limits. Plans must cover the Essential Health Benefits. Over 20 million people have gained health insurance and over 12 million people have gained Medicaid coverage through Medicaid expansion because of the ACA. All of this is at risk.

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CILs: Urge Your State Medicaid Director to Apply for an EVV Good Faith Effort Exemption Request

The 21st Century Cures Act (Section 12006(a)) requires that states implement electronic visit verification (EVV) systems for Medicaid personal care services and home health services. After the passage of the EVV delay bill last year, states are now required to implement EVV for personal care services by January 1, 2020 (states are still required to implement EVV for home health services by January 1, 2023).

The Cures Act allows states to delay implementation of EVV for up to a year if they can show they’ve made a “good faith effort” to comply with the requirements but have encountered “unavoidable system delays.” While the EVV systems rolling out across the country vary from state to state, the one constant of these systems is the threat to our privacy and our independent living. Further, we’ve seen widespread exclusion of disabled stakeholders throughout the process in almost all states.

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Participants Needed: 2019 National Survey on Health and Disability

The Collaborative on Health Reform and Independent Living wants to know how your access to health care and insurance may be affecting your life.

The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) is looking for adults with disabilities to complete an online survey about health insurance and health care services. Whether you have private insurance, insurance from an employer, TRICARE, Medicaid, Medicare or no insurance right now please complete the survey. 

  • Adults, 18 and over, with any type of disability, mental or physical health condition are encouraged to participate
  • The survey should take about 20 minutes to complete
  • Responses are anonymous

Complete the survey (

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Free Webinar: Disability Rights Opposition to Assisted Suicide Laws

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
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Tell Your Members of Congress to Make Medical Deferred Action Permanent!

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.

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Help Our Money Follows the Person Advocacy – Share Your Experiences this Week!

As you know, NCIL aims to bring your issues and concerns to legislators on the Hill. Because Centers for Independent Living (CILs) are the only entities that are Congressionally-mandated to do transition work, it is imperative that we are able to tell members of Congress about the difficulties CILs are experiencing in participating in the Money Follows the Person (MFP) Program.

As such, we need your stories.

Please tell us what state you are in and:

  1. If you have been locked out of participating in the MFP Program;
  2. If you have had difficulty participating in the MFP Program and why; and
  3. If the bureaucracy has made it difficult / impossible for you to participate in the MFP Program.

Please share your responses with Sheryl Grossman, NCIL Community Living Advocate, at, by Friday, September 13, 2019.

NCIL Survey to Document the Impact of Electronic Visit Verification in the United States

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.

The survey is also available in Word and plain text.

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Submit Comments by August 13 on Discriminatory Section 1557 Rollback

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.
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An Update About Taking Action During the Conference

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

Take Action to FREE OUR PEOPLE During the NCIL Annual Conference!

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!


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!

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