The Arc Submits Letter of Support for the Stop Institutional Child Abuse Act

Dear Member of Congress,

The Arc of the United States writes in strong support of the Stop Institutional Child Abuse Act (SICAA) H.R.2955 & S.1351.

The Arc of the United States has nearly 600 state and local chapters across the United States. These chapters provide a wide range of services for people with intellectual and developmental disabilities (IDD), including individual and systems advocacy, public education, family support, systems navigation, support coordination services, employment, housing, support groups, and recreation. The Arc chapters are committed to improving the lives of people with IDD and their families, including the youth with disabilities who experience disproportionate harm at youth residential programs.

An estimated 120,000-200,000 of our nation’s most vulnerable youth are pipelined into youth residential programs each year by state child welfare and juvenile justice systems, mental health providers, federal agencies, school districts’ individualized education programs, and by parents. These facilities, including but not limited to boot camps, wilderness programs, therapeutic boarding schools, residential treatment facilities, or group homes, cause harm at a higher rate to youth who are Black Indigenous People of Color (BIPOC) and youth with disabilities.

These programs receive an estimated $23 billion dollars of public funds annually to purportedly “treat” the behavioral and psychological needs of vulnerable youth yet there are systemic reports of youth experiencing physical, emotional and sexual abuse including but not limited to prolonged solitary confinement, physical, chemical, and mechanical restraints, food and sleep deprivation, lack of access to the restroom or personal hygiene, “attack therapy,” forced labor, medical neglect, and being denied a free and appropriate public education (FAPE). Public records and news reports have documented more than 350 preventable child deaths in these programs.

The Stop Institutional Child Abuse Act aims to lift the curtains on this opaque industry by enhancing national data collection and reporting and facilitating information sharing among every agency who interact with these programs. Transparency and accountability are critical in our mission to ensure the safety and well-being of youth in institutional care settings.

The Stop Institutional Child Abuse Act will establish:

A Federal Work Group on Youth Residential Programs to improve the dissemination and implementation of data and best practices regarding the health and safety, care, treatment, and appropriate placement of youth in youth residential programs.
A complementary study by the National Academies of Sciences, Engineering, and Medicine to examine the state of youth in youth residential programs and make recommendations for the coordination by Federal and State agencies of data on youth in youth residential programs; and the improvement of oversight of youth residential programs receiving Federal funding.

If you have any questions about the Stop Institutional Child Abuse Act or would like further information, please email Rebecca Mellinger, Paris Hilton’s Head of Impact, at impact@1111media.co.

Respectfully,

Robyn Linscott

Director of Education and Family Policy

The Arc of the United States

HHS-OCR Complaints Re COVID-19 Medical Discrimination

States: Washington, Alabama, Tennessee, Utah, Oklahoma, Connecticut, North Carolina, Oregon, Nebraska, Arizona, DC, Texas

Date Filed: 2020

Agency: U.S. Department of Health and Human Services, Office for Civil Rights

Overview: These complaints concern illegal disability discrimination in medical care that is putting the lives of people with disabilities at imminent risk during the COVID-19 pandemic. The complaints challenge discriminatory crisis standard of care plans, no-visitor policies, and inaccessible testing that violate 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).

Crisis Standard of Care Complaints

Washington

Alabama

Tennessee

Utah

Oklahoma

North Carolina

Oregon

Arizona

North Texas

No-Visitor Complaints

Connecticut

MedStar Health (D.C.)

Texas

MHHS Texas

Other Complaints

Inaccessible Testing: Nebraska

HHS-OCR Documents

HHS-OCR Bulletin: Civil Rights, HIPAA, and COVID-19

HHS-OCR Resolution: Alabama

HHS-OCR Resolution: Connecticut

HHS-OCR Resolution: Tennessee

HHS-OCR Resolution: Utah

HHS-OCR Resolution: Texas and North Carolina

HHS-OCR Resolution: Medstar Health

HHS-OCR Resolution: Arizona

FAQs for Healthcare Providers during the COVID-19 Public Health Emergency: Federal Civil Rights Protections for Individuals with Disabilities under Section 504 and Section 1557

Additional Resources

Webinar: Disability Discrimination in the Rationing of Life Saving COVID Treatment: Who Gets Left Behind?

Applying HHS’s Guidance for States and Health Care Providers on Avoiding Disability-Based Discrimination in Treatment Rationing

Evaluation Framework for Crisis Standard of Care Plans 

Evaluation Framework for Hospital Visitor Policies

AADMD Statement on People with IDD and the Allocation of Ventilators During the COVID-19 Pandemic

50 State Crisis Standard of Care Plan Overview

Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients

Press Releases

Federal Civil Rights Resolution Makes Clear Hospital Visitor Policies Nationwide Must Accommodate Patients with Disabilities During COVID-19 Pandemic

State and National Groups File Federal Complaint Against Nebraska for Inaccessibility of COVID-19 Testing Program

Resolution of Federal Civil Rights Complaint Raises the Bar in Prohibiting Medical Discrimination Against People With Disabilities During COVID-19 Pandemic

COVID-19 Hotspots Arizona and Texas Crisis Standard of Care Plans Challenged by State and National Groups in Federal Complaints

Resolution of Federal Complaint Amidst Nationwide COVID-19 Surge Raises Bar in Prohibiting Blanket DNRs, Medical Discrimination Against People With Disabilities

Amidst Nationwide COVID-19 Surge, Health & Civil Rights Groups Secure Federal Approval of Revised Crisis Standards of Care Guidelines in Texas

NC Increases COVID-19 Medical Rationing Protections for Disabled Patients

Coalition of Civil Rights Groups and Legal Scholars Release Report on Intersectional Medical Discrimination During COVID-19

MedStar Health Agrees to End Discriminatory Treatment of Patients with Disabilities in Federal Resolution

Civil Rights Groups Secure Federal Approval of Revised Crisis Standards of Care in Arizona

Related Media

New York Times: Will Disabled People Be at a Disadvantage for Scarce Coronavirus Treatment?

U.S. News: Rights Groups: Coronavirus Treatment Plan Discriminates

Bloomberg Law: Virus Stokes Discrimination Concerns From Disability Groups (2)

NPR: Disability Groups File Federal Complaint About COVID-19 Care Rationing Plans

NPR: People With Disabilities Say Rationing Care Policies Violate Civil Rights

Seattle Times: People with disabilities would suffer if coronavirus care is rationed, advocates say in civil-rights complaint 

The Appeal: The Coronavirus Pandemic Has Brought Out Society’s Alarming Disregard for People With Disabilities

Bloomberg Law: Alabama’s Virus Ventilator Plan Latest to Draw Ire of Disabled

MyNorthwest: Advocacy group says people with disabilities could get denied COVID-19 treatment

AL.com: Alabama limit on ventilators discriminates against intellectually disabled, advocates claim

ProPublica: People With Intellectual Disabilities May Be Denied Lifesaving Care Under These Plans as Coronavirus Spreads

The Hill: Trump officials say people with disabilities must not be denied lifesaving coronavirus care

NPR: HHS Warns States Not To Put People With Disabilities At The Back Of The Line For Care

NBC News: Ventilators limited for the disabled? Rationing plans are slammed amid coronavirus crisis

New York Times: U.S. Civil Rights Office Rejects Rationing Medical Care Based on Disability, Age

WTVC-TV NewsChannel 9 News: TN disability rights advocates: State regulations discriminate by rationing critical care

New York Times: At the Top of the Covid-19 Curve, How Do Hospitals Decide Who Gets Treatment?

The Atlantic: Americans With Disabilities Are Terrified

Vox: “We’re being punished again”: How people with intellectual disabilities are experiencing the pandemic

Washington Post: Who gets a shot at life if hospitals run short of ventilators?

ABC: People with disabilities call for assurances of COVID-19 care

Daily Beast: In These States, the Disabled Could Go to the Back of the Ventilator Line

The Center for Public Integrity: State Policies May Send People With Disabilities to the Back of the Line for Ventilators

cheddar: Alabama Cuts Policy That Made it Harder for Disabled Coronavirus Patients to Get Ventilators

AL.com: Alabama disavows plan to limit ventilators for disabled during shortages

Alabama Political Reporter: Feds resolve complaint over “discriminatory” Alabama emergency ventilator policy

Bloomberg Law: Alabama Takes Down Allegedly Discriminatory Ventilator Guidance (1)

The Hill: Alabama removes controversial ventilator guidelines that denied coronavirus care to disabled

Nashville Post: Group files complaint against state triage guidance to HHS

Forbes: The Disability Community Fights Deadly Discrimination Amid The COVID-19 Pandemic

NPR: People With Disabilities Fear Pandemic Will Worsen Medical Biases

BMJ: US ventilator crisis brings patients and doctors face-to-face with life-or-death choices

CT News Junkie: Disability Rights Groups File Complaint With Office of Civil Rights

New York Times: Coronavirus Crisis Exacts Toll on People With Disabilities

Eyewitness News 3: Formal discrimination complaint filed on behalf of people with disabilities

Disability Scoop: Hospital No-Visitor Policies Endanger People With Disabilities, Advocates Say

CNN: How hospitals make tough ethical calls about which lives to save during a pandemic

Hartford Courant: Advocates want parents of people with intellectual disabilities to be excused from Connecticut’s no-visit rule at hospitals during the coronavirus crisis

NPR: Federal Government Asked To Tell Hospitals Modify Visit Bans

The CT Mirror: Hospital visitor bans fail disabled patients, complaint says

U.S. News: Hospitals Ordered to Allow Support for Disabled Patients

CT News Junkie: Connecticut Settles Disability Complaint Over Hospital Visitation

Hartford Business Journal: CT, Hartford HealthCare resolve civil rights complaint over visitor restrictions

Bloomberg Law: Disabled Allowed Support Visitors in Connecticut Hospitals (1)

Hartford Courant: State issues order allowing people with disabilities companions in hospital settings, settling civil rights complaint

New York Times: Connecticut Hospitals Ordered to Allow Visitors for Patients With Disabilities

Disability Scoop: Hospitals Told To Allow Visitors For Individuals With Disabilities

U.S. News: Coronavirus Crisis Exacts Toll on People With Disabilities

Lincoln Journal Star: Disability Rights Nebraska files complaint over Test Nebraska access

Bloomberg Law: Tennessee Updates Virus Plan After Disability Groups Protest

New York Times: Who Gets Lifesaving Care? Tennessee Changes Rules After Federal Complaint

AZ Central: Disability rights groups file federal complaint about ‘medical rationing’ in Arizona

KJZZ: Disability And Civil Rights Groups File Formal Complaint Vs. Arizona Over Crisis Standards Of Care Plan

Forbes: Disabled Discriminated Against By Crisis Health Plans, Groups Charge In Federal Complaints

NBC DFW: Pandemic Triage Guidelines Violate Federal Law, Discriminate: Complaint

New York Times: Should Youth Come First in Coronavirus Care?

Politico: Trump administration steps in as advocacy groups warn of Covid ‘death panels

AP News: Utah sets pandemic safeguards for people with disabilities

Salt Lake Tribune: Utah revises emergency plans to protect people with disabilities

The Hill: How an unexpected collaboration led Utah to amend its discriminatory triage plan

Open Minds: COVID, Rationing, & Consumers With Disabilities: Where Are We?

NPR: As Hospitals Fear Being Overwhelmed By COVID-19, Do The Disabled Get The Same Access?

CBS DFW: Revised Pandemic Rationing Plan Protects Disabled Texans From Being Sent To Back Of Line For Ventilators

The Federalist: Elderly And Disabled People Should Not Be Put At The Back Of The Line For COVID Care

Texas Standard: Revised Health Care Guidelines Protect Texans With Disabilities From Discrimination, If Rationing Occurs

NPR: HHS Civil Rights Office Tackles Health Care Discrimination Of People With Disabilities

CNN: Many doctors have negative perceptions of patients with disabilities — and that impacts quality of care, study finds

NPR: MedStar Health Changes COVID-19 Protocols Following Discrimination Complaint

Bloomberg Law: Arizona Amends Virus Care Standards to Protect Disabled Patients

AZ Central: Arizona revises its standards on pandemic ‘medical rationing’ after federal complaint

Associated Press: Arizona revises health standards around ‘medical rationing’

The Center for Public Integrity: Once Again, Some States are Choosing who Gets COVID-19 Care

Washington Post: MedStar Agrees to Deal in Federal Discrimination Case