Stack of binders filled with papers

The Arc Fights Rule That Would Unfairly Strip Disability Benefits

/in , , /by The Arc

Washington, D.C. – The Arc urges The Social Security Administration (SSA) to withdraw its proposed rule that would force people with disabilities and their families to repeatedly prove their disability – putting the critical benefits of thousands of people in jeopardy. The rule would increase how often adults and children with disabilities have to gather and submit mounds of tedious paperwork and other documentation to show the federal government that their disability has not suddenly gone away.

Continuing Disability Reviews can be extremely complicated. People with disabilities, their families, their teachers, and service providers often spend weeks gathering information and making sure forms are filled out correctly. Even a minor error on the form can put not only Social Security or Supplemental Security Income (SSI) benefits at risk, but also Medicaid services and other benefits.

“It is unfair for the federal government to burden people with disabilities and their families with the unnecessary and overwhelming task of constantly proving their disability. People with intellectual and developmental disabilities typically require services and supports throughout their lifetimes and will not cease needing services. The Social Security Administration’s new rule would also further open the door to costly applicant and administrative errors, leading to the loss of benefits despite eligibility and the devastating domino effect for people with disabilities and their families. We need the government to consider the looming damage and withdraw this rule immediately,” said Peter Berns, CEO, The Arc.

The Arc is also asking the disability community and supporters to oppose the new rule by submitting as many public comments as possible to the federal government before next week’s deadline of Friday, January 31. We want supporters to submit comments here explaining why the rule is harmful and how Social Security and SSI help people with disabilities. The government must read and respond to public comments before it makes the rule final.

The proposed rule would:

  • Require people with disabilities to fill out cumbersome paperwork 2.6 million more times over the next ten years
  • Cut $2.8 billion in Social Security and SSI benefits
  • Put the benefits of thousands of people with disabilities at risk
silhouette of a hand casting a paper ballot into a box

The Arc Announces Voter Accessibility Project for Iowa Caucuses

/in , , , /by The Arc

Washington, D.C. – In advance of the Iowa caucuses, The Arc is announcing its new CaucusAbility project to help ensure that people with intellectual and developmental disabilities (I/DD) in the battleground state have the opportunity to participate in our democracy in accessible, fair, and valuable ways.

The Arc will host pre-caucus trainings where Iowans with I/DD can learn how to caucus, practice the process, and also team up with a partner with disabilities or without disabilities to encourage caucus participation and to attend caucuses together.

People with disabilities face voter accessibility challenges and barriers to the caucus process, from crowded gymnasiums to limited seating. The caucuses are also unique in format – attendees may go in with a preference for a candidate, but throughout the event they will listen to other caucus goers make pitches for their preferred candidate. Quickly analyzing and processing the information and making an informed decision in that environment can be daunting. Furthermore, Iowa’s new and untested satellite caucus system for remote participation may be an additional barrier for people with I/DD.

WHO: The Arc

WHAT:  CaucusAbility

WHEN/WHERE:

Wednesday, January 15 Collegiate United Methodist Church Annex, Ames 1 p.m., 5:30 p.m.

Friday, January 17 Sioux City Public Museum, Sioux City 11 a.m., 12:30 p.m.  

Monday, January 20 Iowa City Public Library, Iowa City 10:30 a.m., 12:30 p.m.

WHY: Voter Accessibility

“The Arc is dedicated to a fully inclusive society for people with intellectual and developmental disabilities and that includes the right to civic engagement. Having the support of a partner at the Iowa caucuses and the opportunity to practice in advance will help people in the disability community exercise their right to vote. We know that in 2012, one in five voters with disabilities experienced a barrier at the polls. We believe CaucusAbility helps address some of the unique accessibility challenges Iowans with disabilities experience at the caucuses, despite equal access protections under civil rights law,” said Peter Berns, CEO, 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 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.

A woman in a motorized chair plays with a small dog on a grassy field in front of a community of houses

Community Living Program Extension Passes: 2020 Year to Advocate for Deinstitutionalization

/in , , , , /by The Arc

Washington, D.C. – This week, instead of finalizing a deal that would provide certainty and stability to a program that moves people with intellectual and developmental disabilities (I/DD) out of institutions and into the community of their choice, Congress reauthorized the program for only five months.

The Money Follows the Person program, or MFP, provides funds to states to continue their work on deinstitutionalization, by paying for programs not normally covered by Medicaid, such as housing and employment services. MFP has moved more than 91,000 people with disabilities and aging adults out of institutional settings and back into the community, where they belong. The program has also shown better quality of life outcomes and Medicaid savings averaging 20% per beneficiary per month.

Just a few weeks ago, a bipartisan deal was on the table to permanently extend the program. But in the final negotiations, the length of the support of the program was changed to five months.

“While this is a disappointing turn of events, we have our marching orders for 2020 – advocate, advocate, advocate for a permanent commitment to Money Follows the Person. There is widespread, bipartisan support for this successful program. If we are going to achieve the goal of bringing people out of the dark shadows of institutions to live meaningful, independent lives in the communities of their choice among their family members and peers, with appropriate supports and services, then Congress has to step up. We are ready to help make that happen in 2020,” said Peter Berns, CEO, 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 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.

Couple hugging outside both with eyes closed

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

/in , , , , /by The Arc

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.

The Importance of Self-Advocacy: From China to The Arc’s National Convention

/in , /by Pam Katz

By Holly Miller

Disability Advocacy Scholar, The Arc

Holly with walkaround Julia, Muppet from Sesame Street

My passion for advocacy has grown stronger over the years and is taking shape as I learn more about the importance of fighting for your rights, no matter who you are.

I am a postgraduate student of political theory in Shanghai, China, pursuing a Master of Law degree. I am currently working on my thesis titled “Autistic Voices in China— A Critical Disability Research.”

My life experience as an autistic woman, growing up in Michigan, has guided my academic studies and understanding of the importance of self-advocacy for me and other people with intellectual and developmental disabilities (I/DD).

In October 2019, I flew from Shanghai to the U.S. for The Arc’s National Convention in Washington, D.C. The Arc awarded me a Disability Advocacy scholarship to attend the annual convention for the first time. It was an amazing opportunity to connect with other self-advocates and to continue to learn and grow.                                              

We were encouraged to attend sessions at the convention to learn about issues affecting people with disabilities and their families. My favorite session was “Supporting People with Intellectual and Developmental Disabilities (I/DD) to Make Their Own Decisions.” I learned how to advocate for myself in new ways and how other people with I/DD can learn to support themselves. I think it is vital that we all have the opportunity to live independently. I attended this session to learn more for my future career in disability advocacy.

Holly, left with Julia Bascom, Autistic Self Advocacy Network Executive Director

I also enjoyed an interactive session called “National Council of Self-Advocates: Everyone Votes!” I already know a lot about voting but during this session I got the chance to learn even more about why voting and raising issues impacting the disability community is so important. This session was especially powerful for those in the room who had never voted. As American citizens, we all have the right to vote!

The Diversity Breakfast was another highlight of the convention. It was interesting to hear concerns from other self-advocates and how their advocacy has made a difference. At the breakfast, I met others who are as interested in advocacy as I am, which put me at ease at my first convention.

I became interested in self-advocacy after giving several presentations in college about my life growing up autistic. I hope to one day help others with I/DD fight for their right to make their own decisions and live in the community with appropriate supports and services.

I have enjoyed advocating alongside The Arc – all the way from China – and learning from the organization how to be the best advocate I can be. The Arc listens to me. I am looking forward to working together to advocate for all people with I/DD and their families.

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

/in , , , /by The Arc

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

/in , , /by Kristin Wright

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

/in , , , /by The Arc

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.”

a student with books and a backpack.

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

/in , , /by Pam Katz

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

/in , , , /by Pam Katz

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.