Couple hugging outside both with eyes closed

Paid Leave for Federal Workers Approved by Congress – But Falls Short for Disability Community

Washington, D.C. – This week, Congress approved 12 weeks paid parental leave for federal workers caring for newborns, newly adopted children, and foster children, but the benefit falls short. Federal employees with disabilities and their family members need paid time off for their own medical needs and for caregiving for reasons beyond welcoming a new child and we are disappointed that the country’s largest employer now has a paid leave policy that does not include these crucial components.

“We are somewhat encouraged to see Congress take a small step in the right direction, but this paid parental leave policy is not enough. We need comprehensive paid leave for everyone that works for everyone, including people with disabilities and their families. We will continue to advocate for the needs of the disability community in paid leave – Congress can and should do more,” said Peter Berns, CEO, The Arc.

In the U.S. workforce, only 1 in 6 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. People with disabilities and their families often experience greater financial insecurity and are more likely to face barriers to employment that can render the financial impact of unpaid time off particularly devastating.

Comprehensive paid leave increases opportunities to take time off for a serious medical condition or to care for someone with a serious medical condition without seeing a sharp drop in income or putting one’s job or employer-based health insurance at risk. In addition, it can increase access to preventive care, such as going to doctor’s appointments, and lead to better overall health and well-being. Access to paid family and medical leave can help workers balance their personal care needs while working and providing support to a family member.

“Our expectation is that the federal government set the tone for other employers to enact paid leave policies that work for everyone. We will keeping fighting on this issue so that workers with disabilities and families that include people with disabilities one day have the comprehensive leave they need to contribute in the workforce and take care of their families,” said Berns.

The Arc has cultivated several national partnerships to bring the issue of paid family and medical leave further into the public spotlight and advocate on the federal level. Learn more about our work.

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 600 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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Black and white photograph of a hallway with open doors

The Arc Disgusted by Allegations of Human Subject Experiments, Abuse, and Inadequate Care in Iowa State Institutions for People With Disabilities

Washington, D.C. – The Arc is disgusted by monstrous allegations against two institutions for people with intellectual disabilities operated by the state of Iowa. The U.S. Department of Justice is reportedly investigating whether the state violated the civil rights of residents at the Glenwood Resource Center by subjecting them to sexual arousal studies and other “harmful and uncontrolled human subject experiments.” According to reports, the Justice Department is also looking into allegations of inadequate care, needless restraint, and physical injury at Glenwood, in addition to possible violations of the integration mandate of the Americans with Disabilities Act at Glenwood and the Woodward Resource Center.

“We are sickened and outraged. The allegations include degrading and dehumanizing practices, medical invasions in violation of the bodily integrity and dignity of people with disabilities, and reportedly, an increase in deaths.

“This type of alleged treatment is reminiscent of a dark history of coerced medical experimentation and abuse – it’s repugnant and unacceptable. The disability community refuses to go back to those days,” said Peter Berns, CEO, The Arc. “We will be watching this investigation closely. Regardless of the outcome, The Arc and our allies continue our adamant calls to shut down every institution in the nation as soon possible.”

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 600 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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Man picking up lettuce in the produce section of the grocery store

The Arc Condemns New Food Stamp Program Rule

The Arc is concerned that a new federal rule in the food stamp program will hurt hundreds of thousands of people who experience food insecurity, including many with intellectual and developmental disabilities (I/DD). The change to the Supplemental Nutrition Assistance Program (SNAP), made final by the USDA this week, will make it harder for many people with I/DD and their families to put food on the table, despite existing but often hard-to-access exemptions for people who receive benefits on the basis of their disability.

The new rule, unfortunately the first in a series of three in the works, will make it more difficult for states to waive arbitrary time limits for some people to receive SNAP benefits. Based on data from 2018, the new rule will take away the food safety net from an average of more than 600,000 households a month and just over 100,000 households will receive lower benefits.

“People with disabilities and their families, as well as those with chronic health conditions, are more likely to experience food insecurity. The Administration acknowledged receiving more than 100,000 comments from the public, mostly in opposition, concerning this change to SNAP when it was a proposal,” said Peter Berns, CEO, The Arc. “It is stunning that the USDA still decided to move forward with a plan that limits access to food for so many people. We opposed the proposal and we condemn the final rule.”

brittany-simuangco

The Arc Applauds Federal Action to Support Parents With Disabilities

Washington, D.C. – The Arc applauds the U.S. Department of Health and Human Services for taking action to protect the rights of parents with intellectual and developmental disabilities (I/DD) under federal civil rights law. Parents with I/DD must not be subject to discrimination or be denied the opportunity to raise their children in their home based solely on a measure like IQ score.

After completing a compliance review, the Office for Civil Rights (OCR) at Health and Human Services announced an agreement with the Oregon Department of Human Services Child Welfare Program (ODHS) requiring ODHS to ensure they meet their obligations under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, and update its policies and procedures to prevent future discrimination against parents with disabilities in Oregon’s child welfare system. The agreement stems from a case in which ODHS removed two infant children from their mother and father and denied the parents appropriate supports to allow them to reunite with their children, largely because of the parents’ intellectual disabilities and IQ scores. We are encouraged that ODHS has agreed to this important work, including necessary policy changes and training opportunities.

“The Arc is a strong proponent of the rights of parents with intellectual and developmental disabilities to raise children. Research shows that the presence of I/DD does not itself preclude effective parenting. Parents with I/DD should have access to support as needed to perform parental roles just as they are supported in other valued social roles and activities. We are glad to see federal regulators reject stereotypical and discriminatory beliefs about the abilities of parents with I/DD to care for their children, particularly when considering the history of discrimination, including involuntary sterilization,” said Peter Berns, CEO, The Arc. “The Arc calls on state governments, as well as family support and early intervention programs to make sure that intensive and ongoing supports for parents with I/DD are available, so that parents like Amy Fabbrini and Eric Ziegler in Oregon can raise their children whenever possible.”

two men, a patient and a doctor, seated and talking

Let’s Talk About Sexual Violence Against Men With Disabilities

Men with disabilities are twice as likely as those without disabilities to experience sexual violence. Yet few people know just how common it is, including health care professionals.

The Arc’s National Center on Criminal Justice and Disability® and the Board Resource Center recognize that health care professionals are in a front line position to educate patients with disabilities about sexual violence and how to report it. The project is releasing new training videos and other valuable online resources to give doctors, nurses, and other health care professionals the practical tools they need to have simple, direct, and honest conversations about sexual violence with male patients who have intellectual and developmental disabilities.

Health care professionals generally have little or no experience talking about sexual violence with this population. And men with intellectual and developmental disabilities may not know if they are victims of sexual violence, how to talk about it to their doctor, how to report it to authorities, or how to access healing services like counseling.

Talk About Sexual Violence provides tools that build the capacity of health care professionals to talk about this issue with greater confidence and lays the groundwork needed to empower patients with disabilities to talk openly about sexual violence, decreasing the likelihood of future violence.

As part of the second phase of the Talk About Sexual Violence project, The Arc and the Board Resource Center are proud to present:

“Survivors need to talk things out. We need a safe place to tell things and be heard. Listen to us, hear us, believe us. Let us talk about it as long as we need to. Let us be brave with you. We are getting out the pain, one conversation at a time.” – James Meadours, National Peer Advocate & Survivor

close up of medical form with stethoscope

Open Enrollment and Disability: What You Need to Know

Disability Open Enrollment Week of Action kicks off Sunday, November 17, 2019 — but you can enroll until December 15!

The Arc believes that everyone, including people with intellectual and developmental disabilities, should have timely access to high quality, comprehensive, accessible, affordable, appropriate health care that meets their individual needs, maximizes health, well-being and function, and increases independence and community participation.

If you are uninsured or looking for more affordable health insurance, visit healthcare.gov or your state’s Marketplace or health insurance exchange. During the open enrollment period from November 1, 2019 – December 15, 2019, you can review private health insurance options and purchase coverage. People with low and moderate incomes may be able to get financial help to pay for premiums and other cost-sharing may be available for individuals and families, depending on the plan.

If you have a disability or health condition, here are key questions to ask:

  • Is there a broad range of health care providers included in the plan’s network?
  • Are there enough medical specialists in the network to meet your needs?
  • Are needed medications included in the plan’s list of covered drugs?
  • Is there adequate access to non-clinical, disability-specific services and supports?
  • Does the plan have service limits, such as caps on the number of office visits for therapy services?
  • Are mental health services covered to the same extent as other “physical” health needs?

How to get help:

Purchasing health insurance can be complicated. If you or your family member needs assistance, healthcare.gov can help. Each state has health insurance “Navigators” to assist with enrollment. Individual health plan information should be available on the website.

If you already have health insurance through the Marketplace, open enrollment is a good time to see if your coverage still meets your needs. It is also important to update income and household information to make sure you are receiving available assistance and to help avoid penalties, if your income has increased.

You can also sign up for insurance outside of open enrollment, if you lose your job, marry, divorce, or have a baby.

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 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.”

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 (I/DD) 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

The Arc@Work logo

The Arc Partners With Advance Auto Parts for Hiring Initiative for People With Disabilities

In honor of National Disability Employment Awareness Month (NDEAM), The Arc is pleased to announce that it has partnered with Advance Auto Parts on a pilot program to create meaningful job opportunities for people with disabilities at Advance’s Distribution Centers. The program’s first pilot site is at Advance’s Distribution Center in Denver. The plan is to expand the pilot program to include Distribution Centers in other locations in the coming months.

Spearheaded by Advance’s “Different Abilities” Employee network and The Arc@Work, the project aims to build upon Advance’s current disability-inclusion initiatives and offers competitive, dynamic, and meaningful job opportunities to individuals with disabilities throughout Advance. This year’s theme for National Disability Employment Awareness Month is “The Right Talent, Right Now,” which calls upon employers around the country to address the persistent gaps in employment between people with and without disabilities. According to the U.S. Department of Labor, the national unemployment rate for people with disabilities is twice that of people without disabilities (7.2% vs. 3.6%), a gap that has remained static for years. Advance and The Arc@Work are working together to not only narrow this gap, but also support Advance in realizing the value of hiring employees with disabilities.

“The Arc@Work is thrilled to kick-off this great initiative with Advance,” said Jonathan Lucus, Senior Director of Workforce Strategy at The Arc. “People with disabilities are proven to be reliable, loyal, and productive employees, but employment rates for these individuals remain critically low compared to those for jobseekers without disabilities. Research shows that hiring people with disabilities gives a competitive edge and is better for business. This partnership gives jobseekers with disabilities a chance to realize their potential and Advance an opportunity to discover how much hiring the individuals we serve will positively impact their business.”

This pilot program launched in Denver and will move to other markets in the coming months. For the project, The Arc@Work and Advance are working with disability services agencies to identify, train, and hire motivated and qualified job seekers with disabilities. The Arc@Work is also providing disability awareness training and accessibility consultations to enhance the Distribution Center’s ongoing disability inclusion efforts. The main objective of the project is to create a sustainable and scalable methodology for hiring people with disabilities that can be replicated at other Advance Auto Parts distribution centers and stores in Colorado and around the country. For questions on the project or on how to get involved, contact The Arc@Work.