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

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

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

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.

A man lays in a hospital bed as an out of focus doctor in the foreground holds a chart

The Arc Deeply Troubled by Affordable Care Act Ruling

Washington, D.C. – The Arc is deeply troubled by Wednesday’s Federal Appeals Court ruling in Texas v. United States jeopardizing the health care of millions of people with disabilities. In a disappointing decision, the Fifth U.S. Circuit Court of Appeals declared part of the Affordable Care Act (ACA) unconstitutional. In sending the case back to the lower court that previously declared the entire ACA unconstitutional, the opinion leaves uncertain how much of the ACA will ultimately be struck down, putting the law and all of its vital protections at risk in the future.

People with intellectual and developmental disabilities (I/DD) who rely on the ACA could lose access to affordable and necessary health care, as well as important protections for people with disabilities and other pre-existing conditions.

The hard-fought expansion of Medicaid under the ACA is also at risk. More than 17 million people who gained coverage as a result of the expansion now face the cruel reality of possibly losing it including many people with disabilities. The relentless advocacy of The Arc and allies in the Medicaid fight of 2017 to preserve the ACA could be undone, causing irreparable harm to people with disabilities and their families, who face frustrating challenges accessing affordable and quality health care. Also, the decision itself points out that other important Medicaid programs that have moved people with disabilities back to their communities, such as the Community First Choice Option, hang in the balance.

“This decision is a threat to people with disabilities and their families. The Affordable Care Act’s protections for people with pre-existing conditions are the most important non-discrimination protections in health care. The ACA has been critical to improving health care access for people with disabilities,” said Peter Berns, CEO, The Arc. “While this decision won’t have an immediate impact, the potentially harmful consequences are widely understood – even the Fifth Circuit decision notes that the impact to people with disabilities must be a consideration. We fully support plans by several state attorneys general to challenge the decision all the way to the U.S. Supreme Court. People should know that the ACA remains the law of the land for now and any insurance coverage remains intact. The Arc has fought for accessible health care for people with I/DD every step of the way and we will continue to do so.”

In April, The Arc and several other organizations representing people with disabilities filed an amicus brief to urge the Fifth Circuit to reverse a lower court ruling finding the ACA unconstitutional. The brief outlined how the ACA has been essential to overcoming the disproportionate impact that America’s health care crisis has had on people with disabilities, and how it is uniquely difficult for people with disabilities to obtain affordable and adequate health insurance coverage despite depending on health care services more than those without disabilities.

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

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

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.”

Man in red shirt getting on the bus and smiling at camera

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.

The Arc logo

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. 

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.”

Navigating Special Education: A Comprehensive Online Training for Families, Educators, and Advocates

The services and supports and the quality of education available to students with disabilities has continuously improved since the Individuals with Disabilities Education Act (IDEA) first required schools to educate all students with disabilities back in 1975. However, the process of identifying which students should receive special education services and what services they should receive can be complicated, for both schools and families. The Arc@School’s new, online Advocacy Curriculum provides parents, educators, and non-attorney advocates the basic information they need to navigate the special education system.

What Is Special Education Advocacy and Why Do We Need It?

The IDEA requires schools to provide students with disabilities a free and appropriate public education (FAPE) in the least restrictive environment (LRE) through an individualized education program (IEP).

FAPE means students with disabilities must receive all of the specialized supports and services that they need to benefit from their education, at no cost to them or their family. LRE means students with disabilities must learn in the same classes and same schools that they would attend if they did not have a disability, as much as possible. Finally, an IEP is a document created annually that describes what the student already knows, what the student will learn in one year, and what services and supports the school will provide to help the student reach his or her educational goals.

Young students sitting at wooden desk in classroom; teacher helping boy in wheelchair

The process for creating the IEP is meant to be one of collaboration between a student’s parents, the student once he or she reaches age 16, teachers, service providers, and other school staff who know the student best. However, this collaborative process can break down due to disagreement between parents and school staff regarding the student’s plan. The IDEA builds in a system of accountability where students and their parents have certain rights and can take certain actions when they do not feel that the school is meeting the student’s needs appropriately. Students and parents often struggle to advocate on their own for appropriate educational services, so some seek to educate themselves so that they can advocate for services on their own, and some seek help from a special education advocate to obtain the services they feel the student needs.

What The Arc is Doing to Help

Since its founding in 1950, The Arc has advocated for students with intellectual and developmental disabilities (I/DD) to have access to educational supports and services. A lawsuit brought by a chapter of The Arc was a critical factor in the passage of the IDEA. Many chapters of The Arc continue to provide lay special education advocacy for students with I/DD and their families. In 2016, The Arc created The Arc@School to support chapters of The Arc, families, and educators in ensuring students with I/DD receive the services and supports they need at school.

To help families, educators, and advocates for all students with disabilities better understand how the collaborative process should work, and how they can better work together to meet student’s needs, The Arc@School launched an online curriculum in 2019 that provides basic information on navigating the special education system at an affordable cost for users. The Arc@School’s Advocacy Curriculum includes eight online, self-paced modules on the legal foundation of the special education system, early intervention services, individualized education programs (IEPs), procedural safeguards, Section 504, educational records, and more. Users who complete all 8 modules will receive a certificate of completion.

A successful IEP is the foundation for students with disabilities to successfully transition to postsecondary education, employment, and independent living. The Arc@School’s Advocacy Curriculum can help families, educators, and advocates support students on their path to success!