the advocacy monitor

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

Healthcare & Community Living

Emergency Attendant Survey

The COVID-19 pandemic has uncovered significant gaps in the home and community-based services (HCBS) system, including a nationwide need for Emergency Attendant / Direct Service Professional Registries and Backup Programs. NCIL and APRIL are partnering on surveying Centers for Independent Living (CILs) across the country to create a database of existing resources in this area so we can identify gaps and work to address them moving forward.

Please fill out this short Emergency Attendant Survey to help us gauge your CIL’s current status. This survey only takes 1-2 minutes complete. We are seeking responses from every Center for Independent Living in the country. Responding CILs will be entered into a drawing to receive a $50 Amazon gift card!

Gift card drawing rules: One (1) $50.00 Amazon gift card will be awarded to a Center for Independent Living that submits a complete survey response. Individuals and non-CIL entities are not eligible to win. The winner will be chosen by a random selection of survey respondents. Survey drawing will be held after all responses have been received or by July 31, 2020, whichever comes first. The winner of the drawing will be notified by email at the email address provided in their survey response.

Op-Ed: Why Social Workers Should Oppose Assisted Suicide

By Jessica Rodgers

As a social work intern with the Independent Living Center of the Hudson Valley, I advocate for all individuals to live as independently as possible in the community. I also oppose the dangerous assisted suicide legislation that continues to be pushed upon the people of New York.

For decades, opponents have warned about the dangers this sort of legislation holds for the disabled community. Despite supposed safeguards and attempts on the part of proponents to ease concerns, the world has hurtled along exactly as disability-rights advocates have feared. One need look no further than Switzerland where those willing to pay for it can buy a designer suicide. Belgium has perhaps gone the farthest of all by allowing children the option to kill themselves and not differentiating between mental distress and physical illness. A PBS special even followed a Belgian physician as he made a home visit to give one of his patients a lethal injection. Her diagnosis? Depression.

For the old, the sick, and the disabled — particularly those in poverty — the “right to die” may, sooner rather than later, become the “duty to die.”

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IL-NET Presents… A National Webinar & Teleconference: Hospital to Home – A Collaborative Between Community Partners

Part I: June 10, 2020; 3:00 – 4:30 p.m. Eastern

Part II: June 17, 2020; 3:00 – 4:30 p.m. Eastern

Register online

The Hospital to Home (H2H) program is one example of how a Center for Independent Living (CIL) identified an existing program with the potential to be a service the health care industry would be interested in funding. The Independence Center (The IC) and UCHealth Memorial Hospital collaborated to facilitate successful transitions to home for patients with a complex or difficult discharge. Through H2H, The IC provides service assessment, coordination, and a network of local community-based organizations to provide support services that address social determinants of health for patients discharging from the hospital, so they can successfully thrive at home. Part I of this two-part training will start with the concept and vision of the H2H program; Part II will finish with the steps to set up a hospital to home program in your area.

Don’t miss the opportunity to learn more about this exciting, replicable program. Sign up today!

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Sign-On Opportunity for Organizations Regarding Medical Rationing

Disability, aging, and patient advocacy groups are calling for the US Department of Health and Human Services (HHS) to issue further guidance to ensure that plans to ration scarce health care resources during the COVID-19 pandemic comply with federal nondiscrimination laws. As you know from our previous alert, the HHS Office of Civil Rights (OCR) released a bulletin (PDF) late last month to ensure that during this emergency, covered entities follow civil rights laws. However, additional guidance is still needed.

Too many existing plans by hospitals and states discriminate based on disability and age, devaluing the lives of people with disabilities, patients with pre-existing conditions, and older adults.

This letter is led by the American Association of People with Disabilities, the Bazelon Center for Mental Health Law, the Center for Public Representation, the Disability Rights Education and Defense fund and the Partnership for Improved Patient Care. Read the letter (Word).

How to Sign on

If you would like to join this letter and call for additional guidance to prevent discrimination and save lives, please complete the sign on formThe deadline for signature is Wednesday, April 15, at 5:00 p.m. Eastern. This letter is open to national, state, and local groups.

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Medical Rationing and COVID-19: Information and Resources

As cases of COVID-19 are increasing across the country, so, too, is the need for equipment and treatment. In response to both the fear and reality of needs exceeding resources, we are hearing with increasing frequency about medical professionals, hospitals, and states developing plans for medical rationing. This refers to any type of guidelines, rules, or protocols that define or determine who does and does not get to have access to treatment for COVID-19. Much of this guidance has been discriminatory, recommending denying some or all life-saving care to certain groups of people – often older people and people with disabilities. 

This is not only horrendous; it is also illegal. Nearly all healthcare providers in the country are subject to nondiscrimination mandates of the Rehabilitation Act (Section 504), the Affordable Care Act (Section 1557), and the Americans with Disabilities Act, which prohibit discrimination against people with disabilities.

In recent weeks, several complaints have been filed by disability rights organizations with the U.S. Department of Health and Human Services’ Office of Civil Rights (HHS OCR) regarding states’ medical rationing plans. In response to the discriminatory actions of several states – and in large part because of the advocacy by the disability community – on March 28, the HHS OCR released a bulletin (PDF) to ensure that during this emergency, covered entities follow civil rights law.

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Take Action to Save Money Follows the Person!

Money Follows the Person (MFP) has freed over 91,000 disabled people from institutions. MFP was enacted in 2005 with strong bipartisan support, and it’s one of the longest running, most successful Medicaid demonstrations. Since it started, 44 states have participated and worked to improve access to home and community based services (HCBS).

Funding for MFP will expire May 22, 2020. Without action now, states will continue to stop transitions and people will be stuck in institutions. Last year, Congress introduced bipartisan legislation to permanently reauthorize MFP. Permanent reauthorization and funding is critical to ensure sustainability of the program, but time is running out! And, as we have said before, now that Centers for Independent Living (CILs) have been established as a national network required to conduct transition services, NCIL would like to see a permanent solution that incorporates the CIL network into the bill language.

Take Action! 

Call your Representative and Senators and tell them to permanently reauthorize MFP! See a sample script.

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Urge your Representative to Cosponsor House Concurrent Resolution Opposing Assisted Suicide!

Just before the new year, Representatives Lou Correa (D-CA) and Brad Wenstrup (R-OH) reintroduced a Concurrent Resolution (HCR 79) in the House of Representatives opposing assisted suicide laws. The resolution expresses “the sense of Congress that assisted suicide…puts everyone, including those most vulnerable, at risk of deadly harm” and “undermines the integrity of the health care system.” A press release was also issued, which includes a statement from NCIL’s Executive Director, Kelly Buckland.

NCIL has long opposed legalization of physician-assisted suicide for the dangers it poses to people with disabilities. On October 9, 2019, the National Council on Disability (NCD) released the findings of a federal examination (PDF) of the country’s assisted suicide laws and their effect on people with disabilities, finding the laws’ nominal safeguards are ineffective and oversight of abuses and mistakes is absent. Simply put, assisted suicide laws are bad public policy.

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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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