Disparities for People of Color With IDD in Accessing Long-Term Services and Supports

/in , , , , /by Pam Katz

Amparo Ceja is a dedicated mother to her young son, Jesus. Jesus has Down syndrome. The Latino family has experienced discrimination and disparities because of their race and Jesus’ disability. Amparo is concerned about the disparities they and other Latino families experience in accessing disability services and supports. The COVID-19 pandemic deepened existing disparities. Amparo is worried about how persistent disparities will impact Jesus’ future after high school and the rest of his life, especially when she becomes too old to care for him. Amparo and other mothers joined forces with The Arc of California to launch a local chapter of The Arc called Madres Unidas Para Una Mendota Con Igualdad of The Arc. Angel Picon, Director of Community Organizing for The Arc of California, was instrumental in the formation of the new chapter and helps guide the mothers in their fearless advocacy to confront disparities and racism. Amparo, Jesus, and Angel shared their stories with The Arc.

En Español

Amparo Ceja es una madre dedicada a su pequeño hijo, Jesús. Jesús tiene síndrome de Down. La familia latina ha experimentado discriminación y desigualdad debido a su raza y la discapacidad de Jesús. Amparo está preocupada por la desigualdad que ellos y otras familias latinas experimentan en el acceso a los servicios y apoyos para personas con discapacidades. La pandemia de COVID-19 profundizó las desigualdades actuales. A Amparo le preocupa cómo las desigualdades persistentes afectarán el futuro de Jesús después de la escuela secundaria y por el resto de su vida, especialmente cuando ella sea demasiado mayor para cuidar de él. Amparo y otras madres unieron fuerzas con The Arc de California para lanzar una división local de The Arc llamado Madres Unidas Para Una Mendota Con Igualdad of Arc. Angel Picon, Director de Organización Comunitaria de The Arc de California, fue fundamental en la formación de ésta nueva division. Angel ayuda a guiar a las madres en su valiente defensa para enfrentar la desigualdad y el racismo. Amparo, Jesús y Angel compartieron sus historias con The Arc.

Enhancing Health Care for People With Intellectual and Developmental Disabilities

/in , , , /by Pam Katz

The COVID-19 pandemic shined a light on the inequities of the healthcare system that exist for people with intellectual and/or developmental disabilities. For many people with IDD and caregivers, receiving care in a hospital setting has always been a challenging experience. We know that training in this area is lacking. Education and experiential learning for healthcare professionals is essential to addressing these challenges.

The Arc Massachusetts, The Arc Oregon, and The Arc’s national office have partnered to develop a web-based, culturally competent training and toolkit for emergency medical personnel. The goal is to support equal access to emergency healthcare for people with IDD by educating healthcare providers working in hospital emergency departments.

Download presentation slides here.

Victimization and People With Disabilities: It’s Real TALKS Train-the-Trainer Discussion Guide

/in , , , , /by Pam Katz

People with disabilities are more likely than people without disabilities to be victims of mistreatment, abuse, neglect, and exploitation. The Victimization and People with Disabilities: It’s Real TALKS Train-The-Trainer Discussion Guide is for organizations to learn about victims with developmental and other disabilities who have experienced crimes of sexual assault, trafficking, financial exploitation, and Medicaid fraud; and solutions from professionals to help support survivors and to reduce victimization of people with disabilities.

#FreeBritney: Lessons for People With Intellectual and Developmental Disabilities and Their Families

/in , , , , , , , /by Pam Katz

Britney Spears’ public battle over her conservatorship is shining a light on some of the broader challenges that people with disabilities face under guardianship, which is a term some states use for that kind of court involvement. This webinar describes some of the issues being highlighted in the media from Ms. Spears’ case, how they might apply to people with IDD, and alternative approaches that individuals with IDD and their families might consider.

Webinar slides

Webinar transcript

Neli Latson Pardon

/in , , , /by Pam Katz

Overview: In 2010, Mr. Latson was an 18-year-old with autism and intellectual disability, waiting outside his neighborhood library in Stafford County, Virginia for it to open. Someone called the police reporting a “suspicious” Black male, possibly with a gun. Mr. Latson had committed no crime and was not armed. The resulting confrontation with a deputy resulted in injury to an officer when Mr. Latson understandably resisted being manhandled and physically restrained. This was the beginning of years of horrific abuse in the criminal justice system. Prosecutors refused to consider Mr. Latson’s disabilities, calling it a diagnosis of convenience and using “the R-word,” and rejected an offer of disability services as an alternative to incarceration. Instead, Mr. Latson was convicted, sentenced to ten years in prison, and punished with long periods of solitary confinement, Taser shocks, and the use of a full-body restraint chair for hours on end for behaviors related to his disabilities.

Virginia and national disability advocates, including The Arc urged then-Virginia Governor Terry McAuliffe to pardon Mr. Latson. In 2015, with bipartisan support from state legislators, Governor McAuliffe granted a conditional pardon. Although this released Mr. Latson from prison, it required him to live in a restrictive residential setting and remain subject to criminal justice system supervision for ten years. The terms of the 2015 conditional pardon meant Mr. Latson could be sent back to jail at any time, causing constant anxiety.

The Arc and other advocates continued to push for a full pardon which was finally granted by Governor Ralph Northam in 2021. The full pardon from Governor Northam recognizes Mr. Latson’s success since 2015 and relieves him from that ongoing threat. Mr. Latson now has the chance to live a satisfying and self-directed life in the community, free from burdensome, unfair restrictions and the constant threat of reincarceration, but unfortunately never free from the painful truth that Black people with disabilities live at a dangerous intersection of racial injustice and disability discrimination. Mr. Latson’s case galvanized disability rights activists, bringing national attention to overly aggressive and sometimes deadly policing, prosecution and sentencing practices and the horrifying mistreatment of people with disabilities in jails and prisons.

Case Documents

Pardon of Reginald Latson

Request for Complete Pardon and Other Relief for Reginald Latson

Press Releases

The Arc Calls on Governor McAuliffe to Grant Conditional Pardon for Neli Latson Immediately

The Arc Demands Full Pardon for Neli Latson, a Young Black Man With Autism, to Rectify Injustice

Coalition Demands Governor Northam Grant a Full Pardon of Neli Latson, a Young Black Man With Disabilities Subjected to a Decade of Injustice

Advocates Applaud Full Pardon of Neli Latson, a Young Black Man with Disabilities, After Decade of Injustice

Related Media

Washington Post: Stafford County woman confronts issues of race, autism after son’s arrest

Washington Post: Neli Latson is — finally — free. It only took 11 years, two governors and a national conversation about race and disability

The Hill: Amid Black Lives Matter protests, advocates seek pardon for autistic Black man convicted in 2010

Washington Post: Remember Neli Latson, the black teen with autism who seemed ‘suspicious’ sitting outside a library? Ten years after his arrest, he still isn’t fully free.

The Hill: Criminal injustice towards autistic individuals and the regrettable necessity of labeling autism a disability

Dallas Morning News: The U.S. justice system has an autism problem

Washington Post: In Va. assault case, anxious parents recognize ‘dark side of autism’

The Hill: Racial justice, disability rights, neurodiversity and cross-movement solidarity

OZY: Are Police Finally Learning to Deal With Autism? 

The Hill: Law enforcement’s efforts at greater autism awareness

Washington Post: Ruth Marcus: In Virginia, a cruel and unusual punishment for autism

Washington Post: A Black disabled teen went unheard in prison. People are now listening.

Prepared4ALL: Whole Community Inclusive Emergency Planning

/in , , , /by Pam Katz

This free course, created by AUCD, is designed to increase your knowledge about whole community emergency planning, including COVID-19 planning, as well as provide you the basic information needed to connect with your own local emergency planners, public health professionals, and community.

How Marginalized Families Are Left Behind in Disability Education Services and How to Address It

/in , , , , /by Pam Katz

Historically marginalized families face many barriers in regards to education service access and supports. These disparities have significant implications on both children and their families long past graduation. In this webinar, learn about the barriers faced, the historical and systemic factors that contribute to them, and the long-term implications. Attendees will also engage in an exercise to develop advocacy plans in their communities to address these issues and create meaningful change.

Speaker Bio: Dr. Jamie Pearson, a former behavioral interventionist and autism program consultant, is an Assistant Professor of Special Education in the Department of Teacher Education and Learning Sciences at North Carolina State University. Dr. Pearson earned her PhD in Special Education from the University of Illinois at Urbana-Champaign where she developed FACES, a parent advocacy program designed to support African American families of children with autism.

Download the presentation here.

For further questions, please email school@thearc.org.

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

/in , , , , , /by Pam Katz

Black, Indigenous and People of Color, disabled people, higher weight people and older adults have historically experienced and continue to experience discrimination by medical professionals. In health care settings, members of these communities face pervasive negative biases and inaccurate assumptions about their value, quality of life, capacity to communicate and make decisions, and likelihood of survival.

During the COVID-19 pandemic, these biases can have serious and even deadly consequences. Such biases may be exacerbated when hospitals are faced with scarce resources and must make decisions about which critically ill patients should receive treatment. The “crisis standards of care” which are used by many states and hospitals to make these decisions, have too often reflected these biases. It is crucial that these standards be tailored to avoid unlawful discrimination.

This guide provides: (1) an explanation of what crisis standards of care are and how they may perpetuate discrimination; (2) the principles that should apply to crisis standards of care to prevent discrimination; (3) the civil rights laws that apply to the use of crisis standards of care; and (4) recommended strategies to ensure the non-discriminatory application of crisis standard of care guidelines.

The HCBS Access Act: A Law 70 Years in the Making

/in , , , , , /by Pam Katz

The Arc of the United States was founded over 70 years ago by families who wanted their family members with intellectual and developmental disabilities (IDD) included in every aspect of life. Yet, most people with IDD had to leave their families and go live in institutions to receive the daily supports they needed because of their disability.

Our system of services and supports for people with IDD has come a long way since those days, but many people with IDD and their families still struggle to plan for the services needed to live a quality life in the community. Many people with IDD wait years to get off the waiting list for services only to find few direct support professionals available to provide the services they need in the community and even more limited affordable and accessible housing. Even when they do find a home in the community and a trusted professional to meet their needs, they often have to start their search again in six months or a year because the turnover in the field is so high. Or worse, they move to another state to be near family after a parent dies and end up on the waiting list for services all over again.

Congress finally proposed a bill, the Home and Community-Based Services Access Act, to make changes to the system of support for people with disabilities to ensure community-based services are there for all people with disabilities who want to live their lives in the community, with their friends and family.

In this webinar, you will learn about barriers in the current system, the proposed changes, and what you can do to make sure these changes become a reality.

Read the full transcript.

Access webinar slides.

Speaker Bio: Nicole Jorwic was previously the Senior Director of Public Policy at The Arc of the US. Prior to joining The Arc, Nicole served as Senior Policy Advisor and Manager of the Employment First Initiative in Illinois. Prior to that appointment, Nicole served as the CEO/President of the Institute on Public Policy for People with Disabilities. Nicole is also an accomplished special education attorney and an advocate for students with disabilities and their families. Nicole received her JD and Child and Family Law Certificate from Loyola University and her BS from the University of Illinois. Nicole is also a sibling; her brother, Chris, is 31 and has autism.

Talk About Sexual Violence Phase 3 Introduction

/in , , , , , /by Pam Katz

Now in its third year, the Talk About Sexual Violence project will build on its success by not only preparing health care professionals to have much-needed conversations about sexual violence with people with IDD, but to know how to use a supported decision-making lens that supports victim-centered approaches. This flyer gives an overview of the Phase 3 project focus and related information.