a student with books and a backpack.

Advocacy Groups File U.S. Supreme Court Brief Warning That School Vouchers Harm Students With Disabilities

The Arc of the United States, The National Disability Rights Network (NDRN), The Council of Parent Attorneys and Advocates (COPAA), and a coalition of advocacy and legal services organizations represented by the law firm Clinton and Peed filed an amicus brief in the case of Espinoza v. Montana Department of Revenue asking the Court to uphold the decision made by the Montana Supreme Court invalidating Montana’s private school tax-credit scholarship program as it is harmful to students with disabilities.

While families petitioning the court suggest that the program would help students with disabilities, school vouchers and tax-credit programs like Montana’s actually hurt students with disabilities by redirecting public funds to private schools that are largely unbound by the federal laws in place for over four decades that protect the rights of students with disabilities.

When students with disabilities use vouchers or tax credits to attend a private school, typically they forfeit their rights mandated by federal law —including the right to an appropriate, individualized education—because the statute’s key provisions do not apply to private schools. At least seven states have voucher programs that require parents to explicitly waive all or most of their disability rights protections under federal law to participate. In other states, parents often do not realize the rights they are forfeiting: 83% of parents of students with disabilities in such programs report that they receive inaccurate or no information on the loss of those rights, according to a federal watchdog report.

The Court has scheduled to hear oral arguments on January 22, 2020.

Shira Wakschlag, Director of Legal Advocacy, The Arc explains, “For decades, The Arc and its chapters across the country have been at the forefront of establishing and strengthening the right to a free and appropriate education for students, including those with the most significant disabilities. Voucher and tax-credit programs diminish the resources and effectiveness of public school systems in which they operate, leaving students with disabilities behind in the process. We simply cannot afford to go backwards.”

Curt Decker, Executive Director, NDRN explains, “NDRN and its members, which comprise the protection and advocacy network, have long fought to ensure students with disabilities receive the services to which they are entitled. We are very disturbed by the efforts around the country to divert funding from public schools to fund school voucher and voucher-like schemes, including Montana’s tax-credit scholarship program at issue in this case. In our experience, these voucher schemes often require students with disabilities to waive their rights under key special education laws in order to access private schools. Children with disabilities should not be made to choose between attending an underfunded public school and giving up their civil rights to attend a private one. That is an outrageous proposition.”

Selene Almazan, Legal Director, COPAA explains, “Nearly 7 million students with disabilities rely on federal civil rights laws’ protections to ensure access to the general curriculum, to instructional supports, services, and accommodations, and to be held to the expectation that they can achieve commensurate with their peers. If the Montana voucher and tax credit program is allowed to continue, students with disabilities will be stripped of these vital protections, thus putting them at risk of segregation, receive limited supports and services and experience low expectations at school and ultimately in life. We urge the Court to uphold the Montana Supreme Court Decision in support of students with disabilities.”

Issue Before the Court in Espinoza v. Montana Department of Revenue: Whether it violates the religion clauses or the equal protection clause of the United States Constitution to invalidate a generally available and religiously neutral student-aid program simply because the program affords students the choice of attending religious schools.

Joint Amicus Brief: The joint brief establishes that for students with disabilities, the proliferation of private-school voucher and tax-credit programs, including the Montana program at issue in this case, risks restoring a bygone era—during which these students had no right to an education, received no individualized support or services, and were segregated from their peers.

The Arc logo

The Importance of Paid Leave: A Sibling Perspective

By Nayma Guerrero, Member of The Arc’s National Sibling Council

My family is everything.

Nayma and her family

My younger brother is 23 years old. He loves computer science, animation, and art and design. He also enjoys working out at the gym. Things are sometimes challenging for my brother, who has autism, intellectual disability, attention deficit disorder, and depression. Then there’s my sister. Like many 14 year olds, she loves the mall. She also plays soccer and basketball, and likes playing with her dolls. I admire my sister for sticking to it at school, despite having learning disabilities.

Like a lot of families, the day starts at my parents’ house in controlled chaos. My mother takes on what seems like the biggest challenge of the morning shared by moms everywhere: getting my brother and sister out of bed! A true supermom, my mother helps both of them get their school clothes together and makes sure they eat breakfast every day. She truly believes breakfast is the most important meal of the day. After they eat, my mother drives my brother and sister to school before taking care of the grocery shopping and errands.

Both of my parents are very hard workers and make sure my siblings’ needs are met every day. My father works fulltime, so my mom is usually the one who is taking care of my brother and sister.  My brother requires a lot of care, attention, and daily reminders to make sure he’s dressed, gets to school on time, and takes his medication.

A few years ago, my mother ended up in the emergency room. It turned out to be life threatening. My mother needed emergency surgery. We were shocked and worried as any family would be. After her surgery, we were told my mother would need to be on bed rest for about two weeks minimum with little movement. She would need a lot of assistance to get around the house, use the restroom, and shower. We were concerned for my mother but also for my siblings.  My mother is the person my brother depended on the most. And my sister was only 10 at the time.  

My father and I realized it was up to us to help my mother, my brother, and sister. For my father, taking time off meant he didn’t get paid and it was already hard for my family to make ends meet – still is.  I was also working hard, but not getting full time pay or health benefits of any sort. I was working just under 40 hours a week and therefore, part time. Calling off also meant no pay for me. It was really hard for my father and myself to work out a schedule where we could both help my brother with his needs and care for my little sister and my mother. It was also hard because my brother has a difficult time trusting other people, so he needed us. Sometimes, there is just no substitute for family.

Now imagine what it was like for us to shift to relying on one income – we had to save every penny for rent and bills, that’s it. I didn’t know how I was going to make my car payments. We were barely getting by.

Paid leave from our jobs would have helped my family at a time when we needed it most. If I would have had access to paid leave, I would have been able to help my family without losing my pay. My father wouldn’t have had to call out of work with no pay and risk losing his job. I also wouldn’t have had to go some days without pay. I was also scared that my job was going to fire me because I had to call out. With paid leave, we would have been able to provide my brother and sister with better care, while my mom recovered from surgery.

There are many families like mine. When the unexpected happens, family members need to be able to be there for each other – and still keep their jobs.  The U.S. needs a paid leave system so that families like yours and mine can care for loved ones when they need our help.

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The Arc Applauds Commutation of Bobby Moore Death Sentence

The Arc applauds the new ruling by the Texas Court of Criminal Appeals (TCCA) that Bobby Moore is a person with intellectual disability and cannot be executed; commuting his sentence to life in prison.

In its 2002 decision in Atkins v. Virginia, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with intellectual disability and banned their execution as cruel and unusual punishment under the Eighth Amendment. Subsequently, in Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. The Court’s 2017 and 2019 decisions in Moore v. Texas have strengthened this precedent by emphasizing the need to rely on well-established clinical standards – rather than stereotypes – in making intellectual disability determinations in death penalty cases. The Arc filed amicus briefs on Mr. Moore’s behalf when he first went before the U.S. Supreme Court in 2016 and again when his case was remanded to the TCCA in 2017.

“The appeals court decision is a major victory for people with intellectual disability in the criminal justice system and it finally affirms what The Arc and our allies have long asserted: Bobby Moore met the criteria for intellectual disability and his death sentence violated his Constitutional rights under the Eighth Amendment prohibiting cruel and unusual punishment,” said Peter Berns, CEO, The Arc. “We hope the Moore case serves as a loud and clear reminder to the court system that the Supreme Court banned the execution of people with intellectual disability 17 years ago, recognizing their risk of wrongful execution. It is a risk we cannot – and will not take.”

a family with two young girls poses in front of trees and smiles

The Arc Calls for Action on Paid Leave

In honor of National Family Caregivers Month in November, The Arc is raising awareness of the issue of paid family and medical leave and its importance from the perspective of sibling caregivers of people with intellectual and developmental disabilities (IDD).

The Arc is sharing a new and compelling family story to illustrate the urgent need for a national and comprehensive paid leave system that includes siblings.

One in five Americans has a disability. The caregiver crisis is hitting these families in a uniquely difficult way, while paid family leave proposals have stalled in Congress far too long. Without paid leave, families face a cruel choice: the health and well-being of a loved one with a disability – or working to make ends meet.

The Arc’s Family & Individual Needs for Disability Supports (FINDS) survey shows the need for family and medical leave policy reform and reveals that 80 percent of people with IDD live with a caregiver who is a family member.

“We call on Congress to pass inclusive paid family and medical leave legislation that recognizes the important role of all family caregivers. People with intellectual and developmental disabilities and their families often experience greater financial insecurity and are more likely to face barriers to employment, making the impact of unpaid time off particularly devastating,” said Peter Berns, CEO, The Arc. “Siblings are increasingly taking on the role of primary caregiver, as parents and grandparents age and become unable to care for children and grandchildren who have disabilities and important care needs.”

Please find Michael’s story and other paid leave stories here.

Four siblings smile and link arms together, smiling at each other

Congressional Testimony: The Direct Care Crisis

The Arc’s Senior Director of Public Policy, Nicole Jorwic, testified during a Congressional briefing on “The Hidden Crisis of Care in the U.S. – Addressing the Homecare Workforce Shortage” Friday, November 1. Jorwic explained the impact of the direct care crisis and how it hurts direct support professionals and people with intellectual and developmental disabilities and their families, including her own.

The Direct Care Crisis: In Congress, On the Road, and at Home

By Nicole Jorwic, Senior Director, Public Policy

In my role at The Arc, I am lucky to spend a fair amount of my time on the road speaking and meeting with our chapters, families and individuals with disabilities. Nearly everywhere I go, the number one issue that I hear about most is the workforce crisis when it comes to serving individuals with disabilities.

People with intellectual and developmental disabilities (IDD) often need some extra support to be a part of their community. The help can include supports in personal care, communication, household tasks, building relationships, and navigating the community. The work that direct support professionals, or DSPs, do is invaluable to the disability community and the service system that relies on their abilities to keep people out of more costly, restrictive, and often segregated institutional settings.

The word “crisis” doesn’t really do it justice – having a skilled, properly trained and fairly paid workforce is the linchpin for success for so many people with disabilities to live the independent life that they choose.

To illustrate the crisis, consider these statistics for direct support professionals:

  • $11.76 average hourly wage
  • 46% average state-wide turnover rate
  • 38% of DSPs left their position in fewer than 6 months (Hewitt et al., 2018)

How, in 2019, after decades of progress in disability rights, are we in this mess?

The lack of investment from the top creates the crisis.

There has been a lack of federal investment for decades and states have not picked up the slack. The rates service providers receive to ultimately pay DSPs do not take into account the wages of competing occupations, the need for benefits, and the actual costs of services. What has resulted are rates and therefore wages that have been flat for decades, without even cost of living increases.

I also know what this looks like from a personal perspective.

My brother Chris is 30 and has autism. He lives in the suburbs of Chicago with my Mom and Dad who both work full time jobs. Chris has a series of three to four DSPs who come throughout the week to get Chris out into the community. He spends time volunteering with the elderly, works out to stay healthy, and is working on finding community employment.

It sounds great, right? And it can be, but it all hangs on a thread. In my home state of Illinois where the average DSP wage is even lower at under $10 per hour, a very thin thread.

And I was at one of those events for a chapter over the summer, hearing about the workforce crisis when I got a text from my mom that Chris’ “main DSP”, meaning the one who was with him the most, had quit, not because she didn’t love Chris, or the work, but simply because she could make more doing something that didn’t have the same responsibilities.

That happened more than two months ago, and a new DSP still has not been hired, so now my Mom can’t work as much, or other family members help us cover. But not everyone can make those changes.

It also has a very real impact on the progress that my brother can make in his own life. I asked him to share his thoughts and he typed “I want more support, I am very frustrated and I feel that my progress is being hurt. I need more regular scheduled DSPs and they deserve to earn more because of the work they do and so they stay.  I have no patience anymore.” This breaks my heart as a sister and as a professional. The stress I hear in my mom’s voice every time I ask for an update is what I hear from every individual with disability, family member and provider group that I talk to.

An increase in federal funding to support DSP wage increases is the most direct way to make a significant impact on the workforce crisis. The Arc also supports the development and implementation of a national credentialing system for DSPs to professionalize the industry and programs that directs qualified people into the industry via pipeline programs.

These are all policy angles that we will continue to work on because we know the real-life impacts of the continuation and worsening of this crisis.

We must do better for Chris, families like mine across the country, the DSPs who want to work in this profession, their families, and society as a whole.*

*Story is shared with Chris’ permission

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The Arc Supports Clemency for Brendan Dassey

October 24, 2019

The Honorable Governor Tony Evers
Office of the Governor
Attn: Pardon Advisory Board
PO Box 7863
Madison, WI 53707

Re: Clemency For Brendan Dassey

Dear Governor Evers:

As leaders and experts in the disability community in Wisconsin and nationally working to seek justice for those with IDD who find themselves entangled in the criminal justice system, often without necessary accommodations or understanding of their disability, we write to urge you to grant the executive clemency petition of Brendan Dassey.

We have deep sympathy for the family and friends of the victim in this case, and we support appropriate punishment of all responsible parties. However, as Mr. Dassey’s attorneys explain in detail in his clemency petition, Mr. Dassey’s record is replete with evidence of intellectual and developmental disabilities and shows that he did not receive proper accommodations during the interrogation process, resulting in a coerced confession. He has now served nearly thirteen years in prison based solely on this unreliable confession.

Sadly, our prisons and jails hold too many people with disabilities, including IDD, who are robbed of fair treatment within the justice system. Since Mr. Dassey was convicted, there has been significant growth of knowledge and understanding of how certain individuals, including those with IDD, can be more susceptible to authority figures, coercion, and misleading tactics. Police officers, investigators, attorneys, correctional officers, and others are not adequately trained to identify people who may have IDD or how to accommodate their needs, which is especially critical during interrogations. This lack of understanding and failure to provide accommodations all too frequently leads to tragic results, such as individuals giving incriminating statements or false confessions because the individual with IDD is manipulated, coerced, misled, confused, or desires to please the questioner. As noted in Mr. Dassey’s petition, psychological testing performed at trial indicated that challenges related to his disabilities rendered him more susceptible to coercion than 95 percent of the population.

According to the Bureau of Justice Statistics, incarcerated persons are at least three times as likely to report having a disability as the nonincarcerated population. Cognitive disabilities—such as Down syndrome, autism, dementia, intellectual disabilities, and learning disorders—are among the most commonly reported: Prison inmates are four times as likely and jail inmates more than six times as likely to report a cognitive disability than the general population. Specifically, people with IDD make up 4-10 percent of the prison population, but only 1.5 percent in the general population. Some are incarcerated because, like Mr. Dassey, they were coerced into giving confessions and many do not receive the accommodations to which they are entitled, putting them at greater risk. Our prisons and jails hold too many Brendan Dasseys, too often forgotten, some not even recognized as being robbed of justice.

We do not seek to eliminate punishment of people with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. We are committed to seeking lawful outcomes for people with IDD and will continue working to ensure that jurisdictions across the country provide the accommodations to which people with disabilities are entitled by law.

Mr. Dassey, and others with disabilities, have the right to justice and fair treatment in all areas of the criminal justice system and must be afforded the supports and accommodations required to make justice and fair treatment a reality. This did not happen in Mr. Dassey’s case and we call on you to consider this miscarriage of justice when reviewing Mr. Dassey’s executive clemency petition.

 

Respectfully,

Peter Berns
Chief Executive Officer 
The Arc of the United States

Lisa Pugh
State Director
The Arc Wisconsin

 

Maria Town
President and CEO
American Association of People with
Disabilities

Claudia Center
Senior Staff Attorney
Disability Rights Program
American Civil Liberties Union

 

Natalie M. Chin
Joe Rosenberg
Co-Directors
Disability & Aging Justice Center
City University of New York School of Law

Andrew J. Imparato
Executive Director
Association of University Centers on
Disabilities

 

Amy F. Robertson
Co-Executive Director
Martha M. Lafferty
Director of Accessibility Projects
Civil Rights Education and Enforcement
Center

Robert D. Dinerstein
Professor of Law and Director, Disability Rights Law Clinic
American University, Washington College of Law*
*For identification purposes only

 

Prianka Nair
Director
Sarah Lorr
Deputy Director
Disability and Civil Rights Clinic:
Advocating for Adults with Intellectual
and Developmental Disabilities
Brooklyn Law School

 

Black and white photograph of justice scales sitting on a desk in a courtroom

The Arc Applauds Federal Injunctions Against Public Charge Rule

Washington, D.C. – The Arc applauds a slew of decisions from Federal Courts in New York, Washington State, and California that grant preliminary injunctions against the U.S. Department of Homeland Security’s (DHS) implementation of its discriminatory public charge rule. The injunctions block the rule that would have a dire impact on people with intellectual and developmental disabilities, that had been scheduled to take effect on Tuesday, October 15. Two of the three decisions explicitly acknowledge the strength of the disability discrimination claims under Section 504 of the Rehabilitation Act, noting that “there is a significant possibility that disabled applicants who currently reside in the Plaintiff States, or legal permanent residents who return to the U.S. after a 180-day period outside of the U.S., would be deemed inadmissible primarily on the basis of their disability.”

“These injunctions were necessary to recognize the rights of people with disabilities and their families. The courts recognize that the DHS regulations may violate federal and constitutional law and will cause irreversible harm to immigrant families in need of public benefits and services.

“The public charge rule blocked today would discourage immigrant families from utilizing critical public services out of fear of harming their immigration status. It discriminates against people with intellectual and developmental disabilities and their families, and others who use vital programs like Medicaid, the Supplemental Nutrition Assistance Program, housing assistance, and other important benefits. The policy would have allowed the federal government to deny admission into the U.S. based on disability and unfairly restructure immigration in a way that is detrimental to people based on their disability,” said Peter Berns, CEO, The Arc.

In September, The Arc and seventeen national disability advocacy groups filed amicus briefs in support of three cases to block the Trump Administration from implementing the public charge rule. One of the decisions explicitly references our work, noting that “amici provide a compelling analysis of how the factors introduced by the Public Charge Rule disproportionately penalize disabled applicants…” We continue our efforts to ensure that non-citizens with any type of disability have a fair opportunity to enter and live legally in the U.S.

A woman in a scooter and a dog play on a grassy field in front of houses.

The Arc and Partners File Amicus Brief Challenging Discriminatory Actions of Dallas Housing Authority

This week, The Arc and other national and local disability and civil rights advocacy groups—represented by the law firm WilmerHale—filed an amicus brief before the U.S. Court of Appeals for the Fifth Circuit in the case Community for Permanent Supported Housing et al v. Housing Authority of the City of Dallas. The brief provides background on the affordable housing crisis facing people with disabilities and explains that the promise of the Americans with Disabilities Act’s (ADA) “integration mandate” cannot be fully realized without affordable, independent housing opportunities in the community. The brief was joined by the American Civil Liberties Union, the American Civil Liberties Union of Texas, The Arc of Texas, Disability Rights Advocates, the Judge David L. Bazelon Center for Mental Health Law, and the National Disability Rights Network.

The case, filed in federal district court in the Northern District of Texas in 2018, challenges the Housing Authority of the City of Dallas’s (DHA) refusal to use the U.S. Department of Housing and Urban Development’s (HUD) Project-Based Voucher (PBV) rent subsidy program to provide otherwise scarce affordable, independent housing opportunities for people with intellectual and developmental disabilities (IDD) in the community. DHA was poised to offer such PBVs—each of which would permit a single-family house to be rented at subsidized rates to several people with IDD who can live independently with appropriate supports—but then canceled its offering and has refused to offer any substitute, without any good reason. The lawsuit alleges that DHA’s actions violate the ADA, Section 504 of the Rehabilitation Act, the Fair Housing Act, and state law. The district court dismissed the case in April 2019 and Plaintiffs appealed to the Fifth Circuit. Plaintiffs are represented by Relman, Dane & Colfax PLLC, a Washington, D.C. based civil rights law firm, and Disability Rights Texas, a statewide protection and advocacy organization. The amicus brief supports Plaintiffs’ request to reverse the district court’s dismissal order and let the case move forward.

As the brief explains, in 1999, the U.S. Supreme Court held in Olmstead v. L.C. that “unjustified institutional isolation of persons with disabilities is a form of discrimination” under the ADA and, as such, the ADA requires public entities to administer programs “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” But this integration mandate cannot be fully realized without affordable housing opportunities in the community that enable people with IDD to live outside their family homes. For many adults with IDD currently living with family, opportunities that allow them to live in the community separate from their families are often preferable because these opportunities provide greater independence and autonomy. Additionally, living in the community separate from their families can be critical for adults with IDD to avoid homelessness or institutionalization when a supporting family member inevitably ages and reaches a point where she or he can no longer provide shelter or support. Of the more than 100,000 people with IDD living in North Texas, around 75% live with at least one family member into adulthood because of a shortage of affordable housing that would enable them to access community-based support services in homes apart from their families.

“Defendant DHA has publicly acknowledged that two-thirds of adults with IDD in North Texas ‘may be at risk of institutionalization or homelessness’ due to a severe affordable housing crisis. These numbers are unacceptably high and represent a crisis that must be urgently addressed,” said Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel for The Arc. “DHA’s actions violate numerous federal and state civil rights laws and harm Plaintiffs by unduly restricting opportunities for community-based housing that offer more independence and autonomy and puts individuals with IDD in North Texas at risk of homelessness and institutionalization. Plaintiffs should have the opportunity to prove their allegations on an issue as critical as community-based, affordable housing opportunities for people with disabilities.”

“We are proud to represent a number of disability and civil rights advocacy organizations as amici on this important issue,” said Christa Laser, an attorney with the global law firm WilmerHale. “We hope that this amicus brief helps to advance the rights of people with disabilities by ensuring meaningful access to affordable housing opportunities in the community.”

map of the united states created by various shades of blue figures

#becounted

Are you ready to be counted? The 2020 Census is coming up and it is critical for people with intellectual and developmental disabilities (IDD) and their families. The census seeks to include every individual living in the United States, but many people with disabilities are historically left out of the countharmfully impacting funding, services, and supports.

Census data helps guide the distribution of more than $800 billion in federal funding. The count, conducted every 10 years, is also directly tied to key funding streams that support people with disabilities to live in the community, instead of institutions. It determines political representation and affects public policy, as well as programs and supports in housing, voting, education, health care, and public health. The Census Bureau recognizes people with disabilities as a hard-to-count population, meaning that they may not be fully represented in the count, and that the programs that are important to them may not receive the consideration they deserve.

The Arc is excited to announce a major initiative to find solutions. We are pleased to share that we have received a grant from the Ford Foundation to launch a project to help ensure that people with disabilities are counted in the 2020 Census. We recognize the Ford Foundation’s generosity and engagement in the fight for disability rights.

In planning for Census 2020, The Arc will develop and share materials to motivate and inform people with IDD to respond to the count in order to produce more complete and fair data. Our outreach will include our chapter network and membership, and partnerships with national disability groups and advocacy organizations. 

The Arc has also joined the Census Bureau’s National Partnership Program to help raise awareness, share resources, and work together to ensure that all people are counted in 2020.

#becounted

All of our materials will be posted at thearc.org/census – please check back soon!

A man sits as someone holds a tablet, training him on how to use a machine for a job

New Video: Direct Support Professionals Need Our Support

The Arc celebrates “National Direct Support Professionals Recognition Week” beginning September 8, 2019. Direct support professionals (DSPs) play a fundamental role in the lives of people with disabilities. Their presence and assistance allow people receiving services to lead independent and full lives.

Direct support professionals help people with disabilities manage personal care, communication, household tasks, building relationships, and navigating the community. DSPs are invaluable to the disability community and the service systems that rely on their ability to keep people out of institutional settings.

But DSPs are paid low wages, and turnover is high. The result is a workforce crisis.

The *numbers are staggering for DSPs:

  • $11.76 average hourly wage
  • 15% of agencies provide DSPs with health insurance
  • 46% average state-wide turnover rate
  • 12% overall vacancy rate
  • 38% of DSPs left their position in less than 6 months

This workforce crisis has real-life impacts on DSPs and people with disabilities. Without consistent support from a well-paid and trained workforce, individuals with disabilities do not receive the proper services they need to live meaningful lives.

To better understand why DSPs need our support, watch our new video.

*National Core Indicators