Workers Speak Out on Disability and Health: New Report on Paid Family Leave and the Disability Angle

Today, The Arc of the United States (The Arc) and the National Center for Children in Poverty (NCCP) at Columbia University’s Mailman School of Public Health are releasing Disability Perspectives on Paid Leave: A Qualitative Analysis of Leave-taking Among Workers Affected by Disabilities or Serious Health Conditions. This ground-breaking research examines how workers with disabilities and working caregivers of people with disabilities use, need, and benefit from paid family and medical leave. It is one of the only studies to specifically explore whether current paid and unpaid leave policies and programs for working individuals meet the needs of the disability community. Findings offer key insights on how existing leave policies can become more inclusive to this historically under-served group, and highlight the need for a comprehensive, national paid leave policy.

Researchers at NCCP conducted and analyzed in-depth interviews with 90 workers with disabilities and working caregivers in California, New Jersey, New York, and North Carolina. Major findings include:

  • Workers with disabilities and working caregivers take leave for diverse and often disability-specific reasons.
  • Workers want to maximize their time at work and benefit when they can use paid leave in conjunction with other employment benefits.
  • Workers highly value the Family and Medical Leave Act (FMLA) and state-administered paid leave options, which in this study included programs in California, New Jersey, and New York.
  • Multiple barriers and gaps limit workers’ access to leave, including fear of job loss and stigma against disabilities. In states with paid family and medical leave insurance, certain program features also limit access, including low awareness and understanding of the program, inadequate wage replacement, narrow or unclear covered reasons for leave, and inadequate coverage for self-employed and public workers.

Based on these findings, the paper provides recommendations for how policymakers, employers, and advocates can make it easier for all workers to take leave from work during a stressful period of their lives. Most importantly, the findings provide a road map for an inclusive national paid leave policy.

“Our goal with this paper is not only to inform, but also to expand the national dialogue to make paid leave policies and proposals stronger and more inclusive. As this study’s findings show, paid leave is extremely important for people with disabilities and their families, including people with intellectual and developmental disabilities. At The Arc, we believe that our nation can and should put in place an inclusive, comprehensive national paid leave policy that reflects the full range of workers’ leave needs, including people with disabilities and their families. We hope this paper provides the blueprint leaders need to advance this process,” said T.J. Sutcliffe, Senior Director, Income & Housing Policy, The Arc.

The need for paid family and medical leave is universal – nearly all of us will need paid leave at some point to care for a family member, address our own serious medical condition, or welcome a new child into our family. The disability perspective, however, has often been missing from the national conversations and research on paid leave, despite the fact that roughly 1 in 5 Americans has a disability. As such, there is a huge gap in understanding on how the disability community uses paid leave, the frequency of use of this benefit, and whether current federal and state policy frameworks and available paid leave programs meet the disability community’s needs.

“It is crucial to hear from working individuals directly affected by serious health conditions and disability to understand how paid leave policies can work better for them. Our in-depth conversations with workers revealed important patterns and policy considerations that deserve more discussion, such as the need for an inclusive definition of family and flexibility to take leave for myriad reasons. This study bolsters current survey research on disability and paid leave by contributing the lived experiences of working individuals,” said Dr. Heather Koball, Director of NCCP.

About the Study: This qualitative study aimed to (1) understand common usage patterns of unpaid and paid leave programs, (2) to assess the priorities of working caregivers and workers with disabilities regarding taking leave from work, and (3) pinpoint ways in which key stakeholders can better support this population of workers. The research team asked participants their reasons for taking leave and about their leave-taking patterns, as well as what factors influence their access to specific leave benefits.

The National Center for Children in Poverty (NCCP) is a non-partisan public policy research center at Columbia University’s Mailman School of Public Health. Founded in 1989 with endowments from the Carnegie Corporation of New York and the Ford Foundation, NCCP is dedicated to promoting the economic security, healthy development, and well-being of America’s low-income children and families. Using research to inform policy and practice, the center seeks to advance family-oriented solutions and strategic use of public resources at the state and national levels to produce positive outcomes for the next generation.

Spotlight: Kyle Piccola and Ana Martinez Lead Education Efforts at The Arc of Texas

The criminal justice system is filled with gaps in how it navigates and addresses the needs of people with disabilities. In an effort to address this, Kyle Piccola and Ana Martinez are leading education efforts at The Arc of Texas. Utilizing Pathways to Justice®, they are bringing together law enforcement, victim advocates, legal professionals, and others to build relationships and understanding and create safer communities across the state. We chatted with them about the success of the program, how they’ve been able to implement it, and the future of criminal justice reform.

The Arc of Texas group

What made you want to focus on criminal justice reform in Texas? Why did you choose Pathways to Justice as one of the vehicles for your efforts?

ANA: People with I/DD experience several disadvantages that make them more vulnerable to becoming involved in the criminal justice system as suspects and victims. A one size fits all approach does not give people with I/DD equal and fair treatment when they come into contact with criminal justice system. Texas is a large state with diverse cultural and socio-economic differences. The Pathways to Justice training provides the opportunity for us to bring together police officers, self-advocates, lawyers and judges, victim service providers and community advocates for a training geared towards the needs of that particular community. Our efforts have begun to create systemic change that sparks legislative initiatives and induces a collective and actionable charge for our state.

Can you tell us about what implementing Pathways to Justice has been like for your chapter, and for your community? Did you face any challenges recruiting community partners in law enforcement or victim services, and how did you overcome them?

KYLE: The community wanted and needed this as much as we did! We built a coalition of partners just as fast as we welcomed the program to Texas. Our Pathways to Justice program has strengthened the relationships we have with existing coalition partners and helped us build relationships with new ones. The response has been extremely positive – both from the professional advocates and individuals seeking the training. Our local law enforcement agencies welcomed the opportunity because they understand well that law enforcement agencies are coming into contact with people with I/DD more and more. Since our first Pathways to Justice training, The Arc of Texas has been included in all of the Austin Police Department’s training curriculum. For first the time, the Austin Police Department has five hours of I/DD specific training for their cadet class.

How has Pathways – along with your other criminal justice advocacy efforts – helped build community awareness of The Arc and its mission?

ANA: Pathways to Justice has vastly raised overall community awareness on the need and desire for people with I/DD to be supported in the community. We’ve built relationships with organizations that were only marginally aware of our work and mission. This year we honored the Travis County Mental Health Public Defenders Office and the Austin Police Department as our Community Partners of the Year at our annual Leadership and Legacy Event. Partnering with Austin Police Department and Travis County allowed us to achieve a broader and more meaningful impact.

Why is important for chapters of The Arc to help lead the way on criminal justice reform for people with I/DD?

ANA: Once an individual with I/DD has a criminal record, success in community life becomes substantially more difficult, especially considering existing barriers in employment, housing, and other basic elements of economic security. An unjustly gained criminal record jeopardizes the capability of an individual with I/DD to lead an independent life, and often ends up costing millions in tax dollars to support an individual through institutional social services. Texas still runs 13 institutions where too many people with I/DD end up because they were never given the supports needed to secure appropriate criminal justice representation. This barrier to an independent life can be lessened if there is sufficient community awareness and training to identify and support people with I/DD, especially when they first come into contact with the law.

What advice would you give to other chapters looking to establish criminal justice initiatives?

KYLE: As soon as people heard that The Arc of Texas was working on issues related to criminal justice, we began to receive a lot of inquiries from self-advocates, families, and advocacy organizations needing support. As your chapter begins to build a criminal justice program, plan for the influx of people needing support. This was not something that I necessarily envisioned having to staff up as quickly as the need arrived.

To bring Pathways to your chapter or find out about other ways to get involved with NCCJD:

The Arc Responds to Three Month Extension of Money Follows the Person Passing Congress

Last week, the Medicaid Extenders Act of 2019 was signed by President Trump. A three-month funding extension for Money Follows the Person (MFP) was included in this bill. This program moves people with disabilities from institutions into the community by paying for programs not normally covered by Medicaid such as employment and housing services.

“Passage of this bill means individuals with disabilities who have been waiting to transition while funding for the MFP program was in danger, have the opportunity to move out of institutional settings and into the community. If the funding bill did not pass, MFP funds would have run out across the country. This is not only an investment in community-based services, but in the civil rights of people with intellectual and developmental disabilities.

“It is a powerful testament to the value of this program that this legislation was passed so early this Congress, especially after the unsuccessful attempts to cut Medicaid by billions of dollars last Congress. This victory belongs to advocates nationwide who have been actively working to support people with disabilities to live in their communities.  We look forward to working with leaders in Congress who supported this legislation on a strategy for longer or permanent extension of MFP.” said Peter Berns, CEO of The Arc.

The Arc Responds to Department of Education Announcement on Restraint and Seclusion

Today, in response to the U.S. Department of Education’s announcement of an initiative to address the inappropriate use of restraint and seclusion on students with disabilities, Julie Ward, The Arc’s Senior Executive Officer for Public Policy, issued the following statement:

“The Arc appreciates the Department’s new effort to protect students with disabilities from the harmful practices of restraint and seclusion.  We believe this is a step in the right direction to move away from outdated and ineffective practices that are all too frequently used on students with intellectual and developmental disabilities (I/DD). We are hopeful that shining a light on what is happening in our schools, reinforcing the requirements of federal laws, and providing assistance to public schools will benefit all students, including those with I/DD.  However, more needs to be done by Congress to strengthen the federal protections and end these harmful practices. The Arc looks forward to working with the Administration and Congress to move aggressively in that direction.”

Two of The Arc’s Programs to Receive Prestigious Zero Project Awards

The Arc of the United States is pleased to announce two of its programs, Wings for Autism®/Wings for All® and the National Center on Criminal Justice and Disability (NCCJD)’s Pathways to Justice®, have been named 2019 Zero Project Awardees. The Zero Project is an initiative of the Essl Foundation that recognizes and provides a platform for the world’s most innovative and effective solutions to problems faced by people with disabilities around the world. The Arc’s programs are being recognized this year for outstanding contributions towards promoting independent living and political participation, the 2019 Zero Project Awards’ themes.

“The Arc of the United States has long fought to ensure that people with intellectual and developmental disabilities (I/DD) are included in all aspects of society, and that the civil rights of people with I/DD are respected in every context,” said Peter Berns, CEO of The Arc, “We are proud that Wings for Autism/Wings for All and NCCJD’s Pathways to Justice will be recognized as Zero Project awardees this year.”

Pathways to Justice and Wings for Autism are among 76 policies and practices selected by an international group of 3,000 experts who take part in a multi-round voting and selection process. The Arc’s CEO Peter Berns as well as leadership from the two recognized programs will accept the award in Vienna, Austria in February.

Since 2013, NCCJD has endeavored to improve the criminal justice system’s response to victims, witnesses, suspects, defendants, and prisoners with I/DD. The Center’s signature program, Pathways to Justice, offers specialized training and support to develop local, multidisciplinary Disability Response Teams composed of criminal justice and disability leaders, including self-advocates, to improve local justice systems. NCCJD has trained over 5,000 justice professionals in 12 different states since 2015.

“Societies can’t be inclusive without equal access to justice for ALL, including people with disabilities. Pathways to Justice is revolutionizing the way the criminal justice system sees and interacts with people with developmental disabilities, laying the groundwork for inclusive justice to take root and flourish across the country,” said Leigh Ann Davis, Director of NCCJD.

Originated by the Charles River Center, a local chapter of The Arc in Massachusetts, and the Massachusetts Port Authority, Wings for Autism/Wings for All is an airport “rehearsal” program created to alleviate some of the stress that individuals with I/DD and their families experience when traveling by air. The program also provides vital training and educational resources on disability competency to airport, airline, and Transportation Security Administration (TSA) staff and volunteers.

From 2014 to 2018, Wings for Autism has held over 130 trainings in almost 60 airports throughout the United States and has supported more than 18,000 people with autism and other disabilities, as well as their families. Additionally, the program has trained more than 1,800 aviation professionals in disability competency and inclusion.

“The Wings for Autism/Wings for All program has successfully helped thousands of individuals with disabilities and their families enjoy the basic right to travel and live independently. Simultaneously, we’ve supported aviation professionals across the country to create safe and inclusive spaces in airports to better accommodate travelers with disabilities. We are honored to be in the company of so many other great organizations who are also addressing independent living issues on an individual and systemic level as well,” said Kerry Mauger, Program Manager of Wings for Autism.

The Arc Expands “Talk About Sexual Violence” Project to Focus on Men With Disabilities

The Arc of the United States is pleased to announce the National Center on Criminal Justice and Disability® (NCCJD®) received a grant from the WITH Foundation to expand its successful initiative Talk About Sexual Violence (TASV). TASV was born out of a partnership between The Arc’s NCCJD and the Board Resource Center (BRC) and serves as a platform for educating healthcare professionals on how to talk to their patients with intellectual and developmental disabilities (I/DD) about sexual violence. The WITH Foundation’s grant will expand the program’s current focus on women survivors to include resources about male survivors and the unique barriers they face in disclosing or reporting sexual violence.

Efforts to address sexual violence—even movements like #MeToo—have typically focused on women. However, men also experience sexual violence and have comparatively few resources to support them. Research shows that 14% of men with disabilities will experience violent victimization compared to 4% of men without disabilities. Men are less likely than women to disclose an assault, and men with I/DD may be even less likely due to additional challenges they face if they do speak out about it or report it. Health care providers are generally not asking male patients about sexual assault and may not know how to respond if a patient does disclose. 

NCCJD’s Director, Leigh Ann Davis, who has worked in the field of sexual violence prevention of people with disabilities for over 20 years and is a survivor herself, states: “This is a topic of urgent national importance, and we’ve only begun to scratch the surface when it comes to addressing sexual trauma experienced by men with I/DD. With support from The WITH Foundation, we can expand our current project, reach new audiences, build new partnerships with male-focused sexual assault organizations and plant seeds for prevention, detection, and healing in the future.”

Health care professionals are in a frontline position to educate patients about and potentially prevent sexual violence. The primary challenge facing health care professionals is lack of training and experience in speaking directly to people with disabilities about this critical issue which can have dire consequences in the person’s life when left untreated, both emotionally and physically. TASV will work to reduce this gap in knowledge by creating brief video clips with supporting training materials healthcare professionals can use to educate and prepare themselves for these sensitive discussions.

While this project will focus its efforts in California, the initiative will have national reach and impact. This grant is part of a larger grant program by The WITH Foundation that is dedicated to addressing the issue of sexual violence against people with disabilities. The WITH Foundation has provided close to $258,000 to six organizations to fund a variety of programs that promote comprehensive and accessible healthcare for adults with I/DD.

“It is a privilege to support these efforts as they work to enhance healthcare delivery models, increase the understanding of supported decision-making, and/or address critical issues for adults with intellectual and developmental disabilities” said Ryan Easterly, Executive Director of the WITH Foundation.

 

The Arc Responds to Passage of Criminal Justice Reform by Congress

Washington, DC – Last week, both chambers of Congress passed a bill focusing on criminal justice reform, which President Trump signed into law. The legislation shortens sentences and supports job training and other programs for some prisoners with disabilities.

“We are pleased that Congress has chosen to begin comprehensive reform of our criminal justice system. While this is a step in the right direction, our hope is that future legislation provides support for individuals with intellectual and developmental disabilities (I/DD) involved in all phases of our criminal justice system, whether as victims, witnesses, suspects, defendants, or prisoners.

“This legislation funds training on de-escalation techniques for federal prison staff; this is particularly important for individuals with I/DD who are incarcerated. It is essential that future legislation supports training for law enforcement through all branches of government on recognizing and supporting the needs of individuals with disabilities. This training can ensure that an individual’s rights aren’t compromised and that they are provided the appropriate accommodations ensuring they are treated justly and don’t experience conditions that can be detrimental to their physical or mental health.

“The bipartisan support of this legislation is heartening, and we are grateful to Members of Congress for their work on this important issue. The Arc plans to be at the table as further criminal justice reform is discussed in the 116th Congress to ensure the interests of people with disabilities are included in future legislation,” said Peter V. Berns, CEO of The Arc.

While people with I/DD comprise 2 to 3% of the general population, they represent 4 to 10% of the prison population. Earlier this year, The Arc’s Criminal Justice Advisory Panel was launched. The panel is the latest addition to the organization’s National Center on Criminal Justice and Disability’s® (NCCJD) ongoing advocacy to protect the rights of people with I/DD involved in the criminal justice system.

Established in 2013, NCCJD is the only national center of its kind serving as a bridge between the I/DD and criminal justice communities that focuses on both victim and suspect/defendant/prisoner issues. The Center provides training and technical assistance; resources for professionals, people with disabilities, and their supporters; as well as educates the public about the intersection of criminal justice reform and the advancement of disability rights. Pathways to Justice®, NCCJD’s signature training tool, is a comprehensive, community-based program facilitated through chapters of The Arc that helps criminal justice professionals understand their legal obligations toward people with disabilities. NCCJD is building the capacity of the criminal justice system to respond appropriately to gaps in existing services for people with disabilities, focusing on people with I/DD, who often remain a hidden population within the criminal justice system, with little or no access to advocacy supports or services.

The Arc Responds to Texas U.S. District Court Judge’s Ruling on the Affordable Care Act

The Arc Responds to Texas U.S. District Court Judge’s ruling that the Affordable Care Act is unconstitutional:

“This ruling by District Court Judge Reed O’Connor in Texas v. Azar is of great concern. To strike down the entirety of the Affordable Care Act (ACA) puts the health of millions at risk, but we know that this case will be appealed. While the ruling does not impact the law immediately, it has raised concerns and fears for millions who have benefited from the ACA. The ACA includes historic health care coverage expansions, nondiscrimination and health insurance reforms, numerous enhancements to Medicare, Medicaid, and other provisions that benefit people with disabilities. The fact remains that the ACA is the law of the land and health care coverage will not be impacted by this decision without further court appeals and decisions. We must also remember that the Supreme Court has upheld the constitutionality of the Affordable Care Act twice.

“This is about people’s lives – their health, independence, financial stability, and so much more. The Arc remains steadfast in our commitment to advocate for and protect this law and the benefits it provides for people with intellectual and developmental disabilities,” said Marty Ford, Senior Executive Officer for Public Policy for The Arc.

The Arc Responds to Food and Drug Administration’s Intent to Ban Use of Electric Shock Devices

Today, The Arc released the following statement in response to the Food and Drug Administration’s (FDA) announcement that it intends to ban the use of an electric shock device called Gradual Electronic Decelerator or GED. These devices are used with residents of the Judge Rotenberg Center (JRC), an institution in Massachusetts for children and adults with intellectual and developmental disabilities (I/DD) and mental health issues. The devices are worn by residents of JRC; staff members use remote controls to administer a shock to the resident wearing the device with the intent of changing the individual’s behavior. Substantial evidence exists in the FDA’s records that this practice is painful and traumatizing to the individuals who have been shocked.

“There is a well-established body of evidence proving that there are alternative methods for behavioral supports for people with disabilities and other needs that do not include excessive force, pain, and fear. The actions of the JRC remain a civil rights issue. While we are glad that the FDA has shared its intent to ban use of these electric shock devices, we urge the agency to finalize this rule as soon as possible.

“With every day that passes without this rule being finalized, the rights of people with disabilities and mental health issues will continue be violated as they endure painful abuse. The Arc won’t rest until this barbaric practice is halted and use of these devices is banned at the JRC and nationwide. We remain a resource to FDA and other administration officials as they work through implementing this ban,” said Peter Berns, CEO of The Arc.

The Arc has a long history of opposition to the use of aversive procedures, such as electric shock, deprivation, seclusion, restraint, and isolation on people with I/DD and other disabilities. For many years now, The Arc has joined other organizations raising concerns about the health, safety, and welfare of residents of the JRC, including commenting on the rule that The Arc is now requesting the FDA to finalize.

December 2018 #HandsOff: Taking my advocacy to Tennessee!

#HandsOff is a series on The Arc Blog where individuals and families across The Arc’s network share their stories about how some of today’s key policy issues impact their day to day lives.

This year The Arc was excited to be able to offer a limited number of scholarships to individuals with disabilities to attend the National Convention in Nashville, Tennessee One of the scholarship winners, Ivanova Smith from Washington, shares her experience below.

By: Ivanova Smith

Ivanova Smith takes a selfie and smiles with her husband and child to her right. On November 7th,  I got to go to Tennessee for the first time for The Arc’s National Convention! It was a blast. When I found I won the scholarship, my husband and I saved up so he and my daughter got to come with me and see the sights.

While they were out having fun in the giant Gaylord hotel, I was gaining tons of knowledge and networking at the Conference! One of the first things I got to do was participate in the National Council of Self-Advocates Symposium. It was great getting to hear from other professionals and leaders with disabilities speak on topics such as transportation, housing, and how to be effective in advocacy around public transportation. I even got to speak during an open mic session!

I enjoyed the workshops around people who help women with disabilities who were victims of sexual assault. I also really enjoyed the general session where they spoke about legislative priorities and I got to meet new friends!

I support The Arc’s national efforts in wanting to improve education and promoting self-determination! Friday we got to celebrate awardees who worked on efforts on better inclusion at the Catalyst Awards. One of them is actually my Facebook friend, James Meadours. His speech inspired me to keep advocating in my home state of Washington. On the last day, we got to enjoy Nashville and listen to live music! It was a wonderful time!

Want to learn more about The Arc’s 2018 Convention? Check out pictures here.