The Arc and University of Minnesota Release Compelling Data on the Need for Paid Leave for Disability Community in Our Nation

Today, The Arc and the Research and Training Center on Community Living at the University of Minnesota released two new data briefs looking at the work experiences and outcomes of families of people with intellectual and developmental disabilities (I/DD) and the need for paid leave policies. One brief focuses on the experiences of parents raising children with I/DD, while a second brief focuses on the experiences of family caregivers of adults with I/DD.

These data briefs examine subsamples of data from the Family & Individual Needs for Disability Supports (FINDS) Community Report 2017. The intent of this one-of-a-kind survey conducted by The University of Minnesota’s Research and Training Center on Community Living, in collaboration with The Arc, is to understand the experiences of families who provide supports to a family member with I/DD.

The FINDS Survey revealed that, despite the progress that many states have made to increase availability of resources and public funding to provide supports for caregivers and individuals with disabilities, many critical challenges remain. The two new data briefs delve into family members’ employment outcomes and the importance of paid leave as a benefit for family caregivers. The data briefs revealed that:

• Parents raising children with I/DD and working family members who provide support to adults with I/DD report significant challenges balancing work and caregiving and commonly experience negative employment outcomes.
• Caregivers face major gaps in employer supports. Less than half of working family members reported that they were able to take paid time off to care for their family member with I/DD (42% of parents of minor children, 40% of family members of adults).
• A substantial majority (86% of parents of minor children, 85% of family members of adults) thought that offering partially paid leaves of absence from work to meet caregiving responsibilities would be helpful or very helpful.

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’s or our own serious medical condition, or to welcome a new child into a family. Often missing from the national conversation is the disability angle. One in five Americans live with a disability. Yet the reality is, in the U.S. workforce, only 1 in 7 workers has access to paid family leave to care for a family member with a serious health condition. Roughly 2 in 5 workers report they lack access to any paid leave.

“This report paints a picture of the day-to-day needs of caregivers and should ignite action by employers, legislators, and advocates to work together to address the gap in support for employees who require paid leave to support their loved one with a disability. This data brief highlights the importance of paid leave for caregivers in our nation and our hope is that by sharing it we will raise awareness around this issue of national importance,” said Peter Berns, CEO of The Arc.

In tandem with the release of these data briefs, The Arc is releasing a new video which shares the personal story of a family that benefited from unpaid family leave. In the first year of his life, Josh had 10 surgeries and many Pediatric Intensive Care Unit (PICU) hospitalizations for respiratory and shunt infections. His parents, Victor and Debbi, did their best to juggle their professional obligations with raising their two older children and Victor’s duties in the U.S. Marine Corps Reserve, all while navigating Josh’s complex medical needs and disabilities.

The Family and Medical Leave Act (FMLA) provided salvation for Josh and his family. With the pressures at work mounting, and the need to focus on Josh’s day to day care, FMLA was their family’s last recourse to getting the time they needed to support Josh. Debbie was able to take unpaid leave while protecting her job and health insurance benefits. Most importantly, she was able to spend time with Josh during his time of need. While the FMLA was invaluable, Debbie discusses how paid leave would have helped even more. She invites others to join her in advocating for paid leave.

About the FINDS Survey
The FINDS survey was implemented primarily using an on-line survey between January and March of 2017. The survey was also made available in English and Spanish paper versions. Caregivers who were family members or friends of people with I/DD and who provided support were invited to participate in this survey. Direct support professionals or other caregivers whose primary relationship with individuals with I/DD was in a paid role were not included in the sample.

More than 3,000 people (3,398) met the criteria to be included in the survey and consented to partici¬pate. Caregivers surveyed included respondents from all 50 states, DC, Puerto Rico, and Guam. The number of people responding was large and provides important information about the experiences and outcomes of family caregivers of individuals with I/DD in the United States. However, the sample is not reflective of the racial and economic diversity of the United States.

The Arc Opposes Appointment of Judge Kavanaugh to the US Supreme Court

Today, The Arc came out in opposition to Judge Brett Kavanaugh’s appointment to the United States Supreme Court. This opposition is based on Judge Kavanaugh’s record on cases relating to disability and civil rights.

Of particular concern are his decisions on cases involving self-determination of individuals with intellectual and developmental disabilities (I/DD), education, employment, and his stances on the Affordable Care Act and school choice.

“We did not take lightly the decision to oppose Judge Kavanaugh’s appointment to the US Supreme Court, but after a thorough analysis of his record, we cannot idly sit by knowing that he has demonstrated a disregard for the impact of his judicial philosophy on the lives of people with disabilities and their families time and time again. Judge Kavanaugh has written several troubling opinions and dissents on cases related to disability rights and The Arc’s constituents, including those pertaining to education, affordable health care, and self-determination.

“Particularly concerning is his opinion in Doe. V. Tarlow, a case where women with intellectual disability who resided in the District of Columbia’s Forest Haven institution brought a class action lawsuit against the District for violating their due process rights. The District, through its developmental disabilities agency, consented to subject them to non-emergency surgical procedures, including abortions and eye surgeries, without even talking to them and their family members. Judge Kavanaugh’s ruling is disturbing in his apparent lack of appreciation for the humanity of individuals with intellectual disability, their basic human rights, and their ability and right to participate in important life decisions even when found legally unable to make decisions by themselves.

“The Arc urges Senators to not confirm Judge Kavanaugh’s nomination to our highest court. The Senate should not confirm a Justice to the Supreme Court whose judicial philosophy threatens the autonomy and well-being of people with intellectual and developmental disabilities,” said Peter V. Berns, Chief Executive Officer of The Arc.

The Arc Partners with the Vera Institute of Justice on National Initiative to Improve Police Responses to Persons with Mental Health and Developmental Disabilities

People living with mental health disabilities and/or intellectual and developmental disabilities (I/DD) are disproportionately represented in contacts with law enforcement and other first responders, as well as in every part of the criminal justice system, including jails and prisons. While people with I/DD comprise 2 to 3 percent of the general population, they represent 4 to 10 percent of the prison population.

Interactions with law enforcement can be extremely harmful to community members with disabilities. These interactions are also challenging for responding officers, who do not always have the tools or resources to understand disability. Conservative estimates show that at least 10 percent of calls to police involve people who have mental health disabilities and that 50 to 80 percent of police encounters involve persons with some type of disability. In response to this critical need, the Vera Institute of Justice—in cooperation with the Bureau of Justice Assistance (BJA) and in partnership with a consortium of organizations, including The Arc—is launching Serving Safely: The National Initiative to Enhance Policing for Persons with Mental Illnesses and Developmental Disabilities. This new initiative is designed to promote collaborative responses for people with mental health disabilities and I/DD who come into contact with the police to improve outcomes and the safety of all parties.

Through Serving Safely, The Arc, Vera, BJA, and other partners will work together to minimize unnecessary detention and incarceration of persons with mental health and developmental disabilities, strengthen connections to community-based supports and services, and grow meaningful partnerships between law enforcement agencies and the communities they serve.

The Arc has a long history of work in the criminal justice field and is thrilled to be partnering with Vera on this project. In 2013, The Arc created the National Center on Criminal Justice and Disability® (NCCJD®). This is the first national center of its kind serving as a bridge between the I/DD community and criminal justice community that focuses on both victim and suspect/defendant/incarcerated person issues. The Center provides training and technical assistance; resources for professionals, people with disabilities, and their supporters; and educates the public about the intersection of criminal justice reform and the advancement of disability rights. Pathways to Justice®, NCCJD’s signature training curriculum, is a comprehensive, community-based training program that helps criminal justice professionals—including law enforcement—understand disability, disability culture, and professionals’ legal obligations toward the disability community.

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. Vera will be partnering directly with the experts and staff that run NCCJD on Serving Safely.

Other key partners on the project include:

  • American College of Emergency Physicians
  • CIT International
  • National Alliance on Mental Illness
  • National Disability Rights Network
  • Prosecutors’ Center for Excellence
  • Dr. Amy Watson, University of Illinois, Chicago
  • Dr. Michael Compton

Serving Safely has already started to accept requests from law enforcement agencies for training and technical assistance at www.vera.org/projects/serving-safely/training-and-technical-assistance. If you are interested in learning more about The Arc’s role in the Serving Safely initiative, please email NCCJDinfo@thearc.org.

About The Arc
The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, and cerebral palsy. The Arc has a network of nearly 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes.

About the Vera Institute of Justice
The Vera Institute of Justice is an independent nonprofit national research and policy organization working with governments to build and improve justice systems that ensure fairness, promote safety, and strengthen communities. For more information about Serving Safely and the Vera Institute of Justice, see www.vera.org/projects/serving-safely.

The Arc Responds to the Department of Education’s Rescinding of Affirmative Action Guidance

Last month, the Trump administration rescinded guidance the Department of Education provides to colleges, universities and K-12 schools on how they can use race and ethnic background in admissions decisions to promote diversity. The Arc has released the following statement in response to the Trump Administration’s actions:

“This is the latest of a series of moves that shows this Administration’s intentions to chip away at the instruments that have been put in place to increase equity and access to quality education for our country’s most vulnerable populations.

“Two weeks ago, The Department of Education and the Department of Justice delayed by two years a regulation intended to prevent race-based imbalances in pre-school and K-12 education for students with disabilities, a regulation whose delay was opposed by the vast majority of parents, students and administrators who submitted public comments.

“Earlier this year, the Administration also indicated its intent to rescind a guidance package to prevent racial disproportionality in public school discipline. While guidance documents are non-binding practical tools that help school systems follow the law, the Trump Administration’s collective actions make clear that it is scaling back efforts made by previous administrations to encourage diversity in our schools. This is a troubling trend in policymaking that may lead to poorer education outcomes for many Americans with and without disabilities,” said Marty Ford, Senior Executive Officer of Public Policy, The Arc.

The Arc Responds to Senate Passage of the Farm Bill

Washington, DC – Today, the United States Senate passed its version of the “Farm Bill” (Manager’s Amendment to the House version of the 2018 Agriculture and Nutrition Act), a bill to reauthorize farm programs and policy as well as the Supplemental Nutrition Assistance Program (SNAP).

“We applaud the United States Senate for its bipartisan work on a new version of the Farm Bill, rejecting the cruel cuts to SNAP proposed in the House of Representatives.  As both Chambers of Congress negotiate a final version of this bill, we hope they keep in mind the more than 11 million people with disabilities across the United States who rely on SNAP to help them eat. This is an opportunity for Members of Congress to preserve access to basic food assistance for their constituents with disabilities who are struggling to put food on the table.

“Our hope is an end result that protects and preserves SNAP, rejecting cuts to this invaluable program,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Responds to Supreme Court Decision to Decline Review of Brendan Dassey Case

Washington, DC – Washington, D.C. – Today, The U.S. Supreme Court declined to grant review of Dassey v. Dittman. Brendan Dassey, a young man with social, learning, and developmental disabilities, was a central figure in Netflix’s smash docuseries, Making a Murderer He was sentenced to life in prison at the age of 16 after conviction for first-degree homicide, rape, and mutilation of a corpse based solely on his confession – no physical evidence linked him to the crime.

Dassey appealed the conviction on the grounds that his confession was involuntary. The Wisconsin Court of Appeals rejected this argument and affirmed Dassey’s conviction. A federal district court and a divided panel of the Seventh Circuit Court of Appeals held that this rejection warranted habeas relief, but by a 4-3 vote, the en banc Seventh Circuit disagreed. Dassey’s attorneys then made an appeal to the U.S. Supreme Court. Now that the U.S. Supreme Court has declined to review the case, Dassey may spend the rest of his life in prison.

The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (I/DD) and their families, released this statement following the news that the nation’s highest court will not review Dassey’s case:

“This is a sad day for Brendan Dassey and his family, as well as our criminal justice system. The U.S. Supreme Court’s decision to not review this case means that Brendan will likely serve life in prison based solely on a dubiously obtained confession.

“The U.S. Supreme Court has not addressed the issue of false confessions by juveniles in almost four decades. There has been significant growth of knowledge and understanding of how adolescents can be more susceptible to authority figures, coercion, and misleading tactics in the last four decades.  This is particularly true for individuals with intellectual and developmental disabilities.

“Brendan Dassey has already been incarcerated for over a decade, solely on the basis of an unreliable confession. Now the reality of life in prison for a crime there is no physical evidence he committed is sinking in. Sadly, our prisons and jails hold many Brendan Dasseys, too often forgotten, some not even recognized as being robbed of justice. We have a responsibility to ensure everyone in our country accesses justice the same way, which is why we must acknowledge the gaps in justice many are facing. The Arc will continue fighting for the rights of people with intellectual and developmental disabilities, and in the aftermath of this case we will only increase our efforts to ensure that justice is appropriately served,” said Peter Berns, CEO of The Arc.

While people with intellectual and developmental disabilities comprise 2% to 3% of the general population, they represent 4% to 10% of the prison population. Those accused of crimes they did not commit often face the greatest injustices of all, some losing their lives when coerced into giving false confessions. Long before Brendan Dassey’s case hit mainstream media, Robert Perske, respected author, advocate, and long-time supporter of The Arc, compiled a list of people with intellectual disability who gave false confessions to begin documenting these otherwise hidden-away cases.

Earlier this month, 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. During this event, The Arc presented, Steven Drizin, Clinical Professor of Law at Northwestern University Pritzker School of Law’s Center on Wrongful Convictions of Youth, with The Perske Award for championing the rights of people with I/DD in the criminal justice system. Drizin was presented the award for a lifetime of work on justice reform for youth and people with disabilities and his representation of Brendan Dassey

Established in 2013, NCCJD is the only national center of its kind serving as a bridge between the I/DD community and criminal justice community that focuses on both victim and suspect/defendant/inmate 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 training program facilitated through chapters of The Arc that helps criminal justice professionals understand their legal obligations toward the disability community, and includes the topic of false confessions. 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.

About The Arc

The Arc advocates for and serves people wit­­h I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, and cerebral palsy. The Arc has a network of nearly 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes.

About The Arc’s Criminal Justice Advisory Panel

The Advisory Panel is the latest addition to NCCJD’s ongoing advocacy to protect the rights of people with I/DD involved in the criminal justice system. It brings together legal professionals who share The Arc’s mission to protect and promote the civil rights of people with I/DD and will help expand NCCJD’s crucial advocacy.

The Arc Responds to Executive Order on Family Separations

Washington, DC – The Arc released the following statement in response to President Trump’s signing of an Executive Order on family separations.

The Executive Order directs the Department of Homeland Security to detain families together during the pendency of criminal proceedings for illegal entry or other immigration proceedings relating to any of the family members.  It also instructed the Attorney General to file a request with the U.S. District Court for the Central Court of California to modify the Settlement Agreement in Flores v. Sessions to permit indefinite detention of children with their families, a practice that currently is not allowed.

“President Trump signed this Executive Order in response to massive outcries from across the globe about the heart-wrenching separation of children from their families at the US-Mexico Border.  This Executive Order provides some relief for children, infants, and toddlers at the border as their parents and they undergo various proceedings regarding asylum, immigration, and deportation. However, it also creates new problems requiring the incarceration of children with their parents and families for an undetermined period of time while their cases are being decided.

“We are still in the midst of a civil and human rights crisis. Children who have already been separated from their parents should be reunited as soon as possible. This is an urgent situation for all children involved and in many cases irrevocable damage has already been done. For children with intellectual and developmental disabilities, who rely on their loved ones for care, security, and support, particularly for their unique needs, it is of paramount importance they are reunited with their families.

“Incarceration for parents and families still carries risks of life-long trauma to the children in custody. Effective alternatives to detention – such as the Family Case Management Program – should be used so that families can provide a semblance of normalcy to children while their cases are being handled in the courts and agencies. We implore Congress and the Administration to find an alternative to the incarceration of innocent children. This nightmare for families is far from over and we remain deeply concerned about the impact this will have on children with and without disabilities,” said Peter Berns, CEO of The Arc.

The Family Case Management Program is a possible alternative to incarceration for families. Unfortunately, The Family Case Management Program, a less restrictive program to assist families seeking asylum with very young children and others – was ended by the Administration in June 2017.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Responds to House Budget Committee Passage of FY 2019 
“Budget for a Brighter American Future”

Washington, DC, June 22, 2018 – This week, the House Budget Committee passed House Budget Committee Chairman Steve Womack’s 2019 Budget Resolution. 

Chairman Womack’s 2019 Budget Resolution would target health care programs including Medicaid, Medicare, and the Affordable Care Act (ACA), and substitute in a plan for the ACA that would cause 23 million Americans to lose health insurance by 2026, according to the Congressional Budget Office.  It also imposes severe reductions on non-defense discretionary spending, which funds programs like education, training, and employment that make community living possible for people with intellectual and developmental disabilities (I/DD).

 “The Arc strongly opposes the FY 2019 Budget for a Brighter American Future.  Like last year’s House Budget, this budget would have people with intellectual and developmental disabilities bear the brunt of the nation’s deficit reduction efforts. The cuts would slash trillions over a decade from essential programs serving people with disabilities. This budget not only widens economic inequality, it fails to address critical issues such as the growing need for long term supports and services resulting from our aging population. 

“We can read between the lines and see that the real purpose of this budget is to lay the foundation to cut Medicaid and other programs by the end of the year.  The Arc’s network of advocates united to block these cuts last year and we are ready to do so again if this budget resolution advances to the House floor and is introduced in the Senate,” said Peter Berns, CEO of The Arc. 

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Responds to House Passage of the Farm Bill

Washington, DC – Yesterday, the House of Representatives passed the 2018 Agriculture and Nutrition Act, also known as the “Farm Bill,” to reauthorize farm programs and policy as well as the Supplemental Nutrition Assistance Program (SNAP).

“We are extremely disappointed that the Farm Bill passed in its current form. If enacted as is, this version of the bill would cut off basic food assistance for children, adults, and seniors who are struggling to put food on the table. It is disturbing most Members of the House buy in to the notion that some people are more “deserving” of basic food assistance than others.

“Approximately 11 million people with disabilities across the United States rely on SNAP to help them eat. Cutting off SNAP – including through new and harsher work and reporting requirements – would only make it harder for people with disabilities and their families to access the food they need to work and to survive. If policymakers are serious about employment, Congress needs to make major new investments in job training and supports and services for jobseekers with disabilities and their families.

“The Farm Bill has a long history of bipartisan collaboration and support. The Arc calls on Members of the Senate to work together on a bipartisan approach to Farm Bill reauthorization that protects and preserves SNAP, rejecting the proposed cuts in the House version of the bill,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Responds to Escalating Situation at US-Mexico Border “Families belong together and the act of tearing them apart is inhumane and cruel”

Washington, DC – The Arc released the following statement in response to the forced immigrant family separations that are occurring at the U.S.-Mexico border and news of children with intellectual and developmental disabilities being amongst those taken from their parents.

“With each passing minute, we reach a new low as the civil rights and values upon which our nation was founded continue to be betrayed. News of a young girl with Down syndrome being torn from her family is heart wrenching, yet what is garnering headlines is the callous response from those who support the actions of the Trump Administration. As we have said before – family separations are extremely traumatizing and damaging to children. Children with disabilities rely on their loved ones for care, security, and support, particularly for their unique needs. Unfamiliar border agents and other authorities who collect little information about the needs of a child with disabilities risk exacerbating disabling conditions and causing serious harm, in addition to the severe trauma of separation.

“Families belong together and the act of tearing them apart is inhumane and cruel. The Administration’s barbaric choices will undoubtedly traumatize children with and without disabilities. As this situation escalates, we call upon Congress to take action to ensure that these administrative practices are permanently prohibited. The Arc remains aligned with the immigrant community and the many organizations and individuals that have come out in opposition to this abhorrent practice,” said Peter Berns, CEO of The Arc.

The practice of forcibly separating children from their parents can cause irreparable harm in a child’s development, resulting in disability. As noted by the American Academy of Pediatrics regarding these forced family separations, “In fact, highly stressful experiences, like family separation, can cause irreparable harm, disrupting a child’s brain architecture and affecting his or her short- and long-term health. This type of prolonged exposure to serious stress – known as toxic stress – can carry lifelong consequences for children.”

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.