the advocacy monitor

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

Healthcare & Community Living

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
[Read more…]

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.

[Read more…]

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 sheryl@ncil.org, 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.

[Read more…]

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.
[Read more…]

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!

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!

[Read more…]

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).

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.

[Read more…]