Man picking up lettuce

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.”

Man getting on the bus

Huge Victory for Community Living for People With Disabilities: Agreement in Congress to Commit to Money Follows the Person Program

The Arc celebrates a major milestone victory in our decades-long fight to bring people with intellectual and developmental disabilities (I/DD) 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.

U.S. Senators Chuck Grassley and Ron Wyden announced a bipartisan agreement Friday to permanently reauthorize funding for the Money Follows the Person (MFP) program as part of the larger Drug Pricing and Healthcare Extenders Package. Permanent reauthorization of MFP would provide 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. While the package still must be voted on in the House and Senate, a permanent reauthorization of this program has never been introduced, and is a major step forward. One that we will work hard to ensure becomes law.

“A bipartisan agreement in Congress to permanently reauthorize the Money Follows the Person program is extraordinary news for people with intellectual and developmental disabilities, their families, and advocates. It is also a true testament to the years of grassroots efforts on the ground led by The Arc and allies, and our persistent advocacy on Capitol Hill to save the program and defend the civil rights of people with I/DD,” said Peter Berns, CEO, The Arc. “The Arc was founded by parents and family members who rejected institutions and fought for decades to close them. We applaud elected officials who understand the value of MFP, core to our mission to advance community living and close all institutions. We look forward to continuing our work with leaders in Congress to pass permanent reauthorization of the program.”

This agreement is expected to be voted on in Congress this month.

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Spreading the Holiday Spirit of Giving with The Arc of Harrisonburg and Rockingham

Now in its second year, The Arc of Harrisonburg and Rockingham’s “Santa Run, Walk, ‘N Roll” brings the community together during the season of giving to raise awareness and funds for the chapter. Capitalizing on the holiday spirit and everyone’s love of festive cheer, the event provides Santa suits and elf ears to make everyone a “helper” in spreading joy. The parade lasts for a half mile through downtown Harrisonburg right before the city’s holiday parade. We asked Heather Denman, Executive Director of the chapter, what makes the event so special and successful!

How did the Santa Run, Walk, ‘N Roll get started? 

The Arc of the Piedmont located in Charlottesville VA has successfully held a Santa Fun Run for six years. The Arc of Harrisonburg and Rockingham was interested in establishing an inclusive friend- and fund-raising event and The Arc of the Piedmont generously helped get us started. We renamed the event Santa Run, Walk, ‘N Roll. The Arc of Hanover (another VA chapter) is having their first Santa Run this year. Our goal is to have all chapters of The Arc throughout Virginia conduct the event on the same weekend each December.

How far out do you begin meeting and preparing for the event to ensure success? What does the process of bringing it to life look like?

The main promotional thrust for Santa Run should begin in September, but we start the planning process with the submission of an application to the City in February. We also make early arrangements with The Friendly City Food Co-op where we begin and end the Run, Walk, ‘N Roll. We used Eventbrite for registration the first year but have purchased fundraising software (Salsa) that better allows for teams and individuals to sign up and invite people to sponsor them. Prizes collected throughout the year are awarded in a number of categories, including most money raised by an individual, most raised by a team, and best decorated wheelchair, stroller, and pet. Television, radio, and print advertising campaigns are donated in exchange for event sponsorships and they begin in October with increasing frequency closer to the event. Board and community volunteers help secure sponsors, distribute posters, and promote it on social media. At the event, volunteers help with registration and provide and dispense hot chocolate and cider, holiday cookies and snacks at the registration/finish line. Participants receive a bag with sponsor swag and coupons for Santas to enjoy a free or reduced price item at downtown restaurants post event.

How do you get other community organizations and companies involved, either as sponsors or participants?

Expenses for the event are very low (Santa suits are about $9) so corporate sponsorships more than cover the costs of the event. While we prefer to line up sponsors well in advance, companies often have funds left over at year end and are happy to help. Each sponsorship comes with free registration at commensurate levels—a $500 sponsor gets 4 free registrations and a $5,000 sponsor gets 20. This encourages sponsors to form teams and become engaged beyond their donation. Local universities help promote the event on their campuses. We also utilize our DD provider networks, The Chamber of Commerce, the United Way, and social media. 

How does the event serve as a vehicle for more people in the community to get involved in the chapter, either as volunteers, clients, or staff? 

Publicity for the event including promotion and media coverage create much needed awareness of our mission. An information station is manned at the event with sign-ups for volunteering, newsletters and memberships.

How do you ensure the event is inclusive and welcomes everyone from the planning side as well as the participation side?

We ensure staff and consumer participation by allocating Community Engagement (CE) or Community Coaching time to Santa Run. A fellow provider has offered overtime to all their staff who provide support to their individuals to participate. We also provide transportation to and from the event and have college volunteers on hand to provide individual support for members of CE teams or others needing assistance. A self-advocate serves on the board of directors and has been involved in the planning of the event and we are in the process of establishing a self-advocacy committee that will have representation on a state-wide self-advocacy alliance. 

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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.

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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 (I/DD).

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 I/DD 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.