Tennessee Equality in COVID-19 Care

Disability discrimination complaint filed over COVID-19 treatment rationing plan in Tennessee

March 27, 2020 
NASHVILLE - As COVID-19 cases increase, the experience in other countries and predictions of United States health officials is that there will not be enough acute care services or equipment, such as ventilators, to meet the demand of patients with the virus who require intensive treatment. Health care professionals in the U.S. are already developing protocols for responding to COVID-19, including treatment rationing that will determine who will and will not have access to life-saving treatment.

Disability Rights Tennessee (DRT), The Arc Tennessee (The Arc TN), and several other disability advocacy organizations filed a complaint with Tennessee’s Office of Civil Rights (OCR) on behalf of their constituents and several individual Complainants on Friday, March 27, 2020 about Tennessee’s Guidance for the Ethical Use of Scarce Resources during a Health Emergency.

The complaint voices grave concern that the plans being put in place discriminate against people with disabilities in violation of federal disability rights laws, including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504) and Section 1557 of the Affordable Care Act (ACA) and place their lives at serious risk. Complaints have called upon the OCR to take immediate action to address this discrimination and assist local jurisdictions and providers to develop non-discriminatory approaches before there are lethal consequences to application of these illegal policies.

The ADA, Section 504, and Section 1557 cover the state of Tennessee and all Tennessee hospitals, health care providers, health plans and insurers. These federal laws prohibit disability discrimination in medical decision-making.The attached complaint filed today by Disability Rights Tennessee and others details these principles.

Yet Tennessee’s 2016 “Guidelines for the Ethical Allocation of Scarce Resources”[1]permit and advise that, in the context of a crisis like COVID-19, health care providers discriminate on the basis of disability in violation of federal law.

Specifically, Tennessee’s guidelines exclude people with “advanced neuromuscular disease” who require “assistance with activities of daily living or requiring chronic ventilatory support,” from accessing critical care, including ventilators. They further exclude people with metastatic cancer, some people with dementia, and some people with traumatic brain injury from necessary care.

The thousands of people who have the listed conditions in the guidelines are not inherently less likely to respond to COVID-19 treatment or medically less capable of surviving and returning to living productive and valued lives.  A diagnosis should not determine anyone’s right to individual medical judgment or leave people afraid to seek professional help because their care will be based on assumptions about a condition. As such, these guidelines violate the federal disability rights laws outlined above.

As a result of these guidelines, and the message that they send about the worth and dignity of people with disabilities, Tennesseans with significant disabilities are experiencing intense fear and anxiety. People with disabilities fear that, should they need critical care or ventilators during the COVID-19 crisis, they may be excluded and denied based on disability, and may even face preventable death.

Jean Marie Lawrence is a Tennessean who was born with Muscular Dystrophy. She is 33 years old and relies on a ventilator for 12 to 20 hours a day. She works 40 hours a week, volunteers, and lives independently. Because Jean Marie has Muscular Dystrophy and is ventilator dependent, Tennessee’s medical rationing guidelines exclude her from receiving COVID-19 treatment. Jean Marie shares,

“Tennessee is saying my life is worth less than that of someone without my disability. I fear not only for myself, but also for the millions of other Tennesseans with disabilities whose lives you may see as untraditional but are nonetheless worth every bit as much as your own.”

Jean Marie's story is just one example of Tennesseans with disabilities who are at risk of being excluded from medical treatment and who, as a result, risk facing preventable death. The stories of the other individual Complainants follow in the Further Description of Complainants at the end of this letter. In passing the ADA, our nation promised to include individuals with disabilities as equal members of our communities in all contexts, including this one.

It has been requested that OCR immediately investigate and resolve this complaint of disability discrimination, and promptly detail what the state of Tennessee and Tennessee health care providers must do to comply with federal laws protecting the rights of all patients, including those with disabilities, during the COVID-19 pandemic.

Given that the pandemic is spreading at a rapid pace and the number of confirmed cases and deaths is climbing each day, this is a topic requiring immediate attention.

CONTACTS: 

Lisa Primm, Executive Director, Disability Rights Tennessee,lisap@disabilityrightstn.org, 615-298-1080 x118

Carrie Hobbs Guiden, Executive Director, The Arc Tennessee, cguiden@thearctn.org, 480-236-9722

Shira Wakschlag
, The Arc of the United States, Wakschlag@thearc.org
Complainants are represented by their counsel who are available for comment.

MCIL going remote

March 19, 2020

As Director of MCIL I have followed national and local responses to the 2020 Corona virus pandemic and we have adopted a multi-step plan to continue to serve citizens with disabilities.

Step 1. Educated staff and visitors in appropriate hand washing and hand sanitizer use and maintaining some space
Step 2. No visitors or consumer face to face meetings or visits to Nursing Homes or hospitals, cancel all IL trainings and other group activities.
Step 3. Begin remote work for most susceptible staff members
Step 4. Shut down MCIL physical office and all staff work remotely until it is deemed safe for our return.

Tim and I have worked together on each step and have watched and listened to NCIL, ACL, local non-profits, CDC and local government for each stage of reactions. Today, we decided it was time for Step 4. MCIL will be responding to all phone messages, emails and faxes as usual. To all MCIL friends and family, please be safe!

Sincerely,

Sandi Klink
Executive Director

STAC Report

The Specialized Transportation Advisory Committee struggles for representation

By Allison Donald

The Specialized Transportation Advisory Committee (STAC) met for its first official meeting of 2020.  As a committee we continue to work to assist MATA in identifying issues that negatively impact the customer experience.  This year we are pushing for a dedicated funding to improve public transportation as a whole.  In addition, STAC is continuing to offer suggestions to improve MATAplus service and calling for more accountability on the MATAplus side.

Mr. Amos the ADA Compliance Officer for MATA mentioned that the lack of a dedicated funding source continues to hurt the frequency and quality service MATAplus provides.  Bobbie Fields STAC co-chair and Mr. Amos, suggested that we start a letter writing campaign to keep the conversation of securing dedicated funding going.  As a committee we are pushing toward public transit that is adequate and inclusive of all.

“If Memphis wants to thrive we must invest in public transit,” said Allison Donald STAC secretary, “and Memphians living with disabilities must be included in shaping that vision.”

STAC continues to push for improvements with the current service.  Stephen Tennial, the interim chair, supports the idea of extra vehicles being rolled out at the beginning of the month which would be dedicated to those individuals working or going to school. STAC also would like to do a survey of MATAplus that would take a look at the rider’s experience.  Both suggestions were just a beginning to finding possible solutions for the ongoing issues with the area paratransit service. 

“If we (MATA) were to do as suggested,” said Anthony Amos, “that would be ride prioritization.”

Mr. Amos pointed out that representatives from the FTA recently visited reviewed the policies and procedures and found MATA not in violation of the ADA.  The members of STAC called into question the “30 minute window rule” and whether MATA was stretching the interpretation in order to maintain high on time performance numbers.

The most contentious part of the meeting occurred when STAC asked for the policies and procedures that govern the day-to-day operations of MATAplus. 

Anthony Amos expressed frustration about the course STAC has taken.  He suggested that the committee is stagnant and no longer is representative of the community of riders.  As a result Mr. Amos wants to postpone the March meeting.  He stated he would like to pick the time, place, and community representatives who will be attending the next meeting.

There has not been a date set for the next STAC meeting.  When we are notified we will be sure to get it out to the community.

MATA corrects 30-minute window mistake

MACCD Transportation Summit highlights correct information about MATAplus

At the Memphis Advisory Council for Citizens with Disabilities Transportation Summit, MATA announced that the thirty-minute window follows the scheduled pick-up time. Anthony Amos of MATA referred to the new Rider’s Guide that is online that corrects the previous misinformation that there was a thirty-minute window before and a thirty-minute window after the scheduled time.

The Memphis Center for Independent Living had noted that the misinformation in the previous Rider’s Guide was confusing and preventing people with disabilities from understanding and using the system. This past December, MCIL had a blog article about the misinformation in the Rider’s Guide. Read Stephen Tennial’s piece: https://mciljournal.blogspot.com/2019/12/the-mata-30-minute-window.html

Now the guide reads:

Customers must be ready to depart at any time during the thirty (30) minute window which starts after your scheduled pick up time.

The MACCD event at the Memphis Public Library was lightly attended and began with a presentation from MATA and included Shelby County Mayor Lee Harris pitching for MACCD to support a $10,000,000.00 County investment in public transportation. There were a dozen people at the event that was set up for about 120 people. The sponsors of the event did not seem to attend and there were no vendors.
MATA began a new functional certification method last year. Mr. Amos said that they are also using the functional assessment for recertifications but hope that they will not face a wave of certifications at their paratransit assessment center. He said that at one point, MATA had nine-thousand people certified for MATAplus.