Tommy Hilfiger, Levy Restaurant Group, Amy & The Orphans and more: The Arc Announces Winners of 2018 Catalyst Awards

On November 9, The Arc will present the prestigious Catalyst Awards to six honorees, all of whom have made extraordinary contributions in the lives of people with intellectual and developmental disabilities (I/DD). This year’s winners hail from a wide swath of our society, including one of the most admired fashion brands in the world, the lead cast and writer behind a hit off-Broadway show, a nationally recognized self-advocate, a non-profit that is paving the way for inclusion of disability in the fashion industry, and one of the nation’s premier special education lawyers, all of whom are changing how society perceives and treats people with disabilities.
“The Catalyst Awards honor those who are not traditionally recognized within the disability community for their diverse and meaningful contributions to our movement. These award winners are unique in their accomplishments, but unified by their tireless pursuit of inclusion. Their work has helped further The Arc’s mission to promote and protect the human rights of people with intellectual and developmental disabilities, and we are thrilled to bring them together to receive this well-earned honor. Our hope is that by shining a spotlight on these change agents we will inspire and educate others,” said Peter Berns, Chief Executive Officer of The Arc.

During the fourth year of this signature event, awards will be presented in six categories. A full list of the accomplishments being honored can be found on The Arc’s Catalyst Awards website.

  • Corporate Advocate of the YearTommy Hilfiger revolutionized the fashion industry by launching the Tommy Adaptive Collection in 2017, a line of clothing tailored to the needs of people with disabilities. More than just being the first mainstream fashion brand to design a clothing line specifically for people with disabilities, Tommy Hilfiger has relied upon the advice and feedback from the community to create each design. Modifications such as one-handed zippers, side-seam openings, bungee cord closure systems and magnetic buttons, were incorporated into the design of each piece to maximize comfort and ease of use for people with disabilities. Through its Adaptive Collection, Tommy Hilfiger has become a leader in making the fashion industry more inclusive.
  • Self-Advocate of the YearJames Meadours has been a tireless advocate for individuals with I/DD for decades. Throughout his career, Meadours has used his personal experience to highlight challenges facing individuals with I/DD in our nation. As a survivor of sexual assault, he has been a powerful activist in the #MeToo movement and he has made it his mission to help victims of sexual violence across the nation become survivors.  He is a trail blazer, leader, and staunch defender of people with I/DD.
  • Entertainment Industry ExcellenceAmy and The Orphans is a critically acclaimed show that is the first and only known Broadway or off-Broadway production to feature actors with I/DD in leading roles. Written by critically-acclaimed playwright Lindsey Ferrentino and Directed by Tony nominee Scott Ellis, Amy and the Orphans, tells a humorous yet truthful story of three siblings – one of whom, Amy, has I/DD – who come together in the wake of their father’s funeral for a road trip. Jamie Brewer (known for her roles in FX’s hit series American Horror Story) and Edward Barbanell, both actors with disabilities, will be honored with the award along with Ferrentino.
  • Legal Advocate of the YearJack D. Robinson is receiving the Legal Advocate of the Year Award in recognition of his illustrious career in special education law and his dedication to protecting the legal right to a free appropriate public education (FAPE) for students with disabilities on the state and national levels. Most recently, Robinson represented Endrew F. before the U.S. Supreme Court in the IDEA case, Endrew F. v. Douglas County School District.  The Endrew F.decision has been hailed as a landmark decision that transforms the educational rights of students with disabilities and empowers parents fighting for the civil rights of their children with disabilities.
  • Employer of the YearLevy Restaurant Group has made hiring people with I/DD a priority and has made disability inclusion a key hiring initiative at new locations. One of their most successful job training and placement programs has been at the Barclays Center in Brooklyn, New York, where they have successfully placed over 100 people with I/DD in jobs at their food service locations at the venue. The Levy Restaurant Group has replicated their successful model at several other locations in New York with plans to expand to more locations around the country in the near future.
  • Marketing Influencer of the YearRunway of Dreams Foundation (RODF) is a non-profit organization that develops, delivers and supports charitable initiatives to broaden the reach of adaptive clothing and promote the differently-abled community in the fashion industry. RODF uses a multifaceted approach in their work, which includes processing adaptive clothing donations, creating employment opportunities with fashion brands, leading adaptive design workshops and providing scholarships to aspiring designers.

 

Comcast NBCUniversal is The Arc’s National Media Sponsor and lead sponsor of the Catalyst Awards.

“Each of these awards speak to the power of inclusivity, and that’s why we are so grateful to partner with The Arc and recognize these honorees for giving a voice to, and advocating for, people of all abilities,” said Fred Maahs, Senior Director of Strategic Partnerships at Comcast.

All nominations were reviewed by a formal selection committee comprised of members of The Arc’s National Staff, members of The Arc’s Board of Directors, prior Catalyst Award Winners, National Conference of Executives of The Arc members, and Peter Berns, Chief Executive Officer of The Arc, serves as the Chair of the Catalyst Awards Selection Committee. Criteria for selection can be found on The Catalyst Awards Website.

The Arc Responds to Appointment of Judge Kavanaugh to the US Supreme Court

 

Today, The Arc responded to Judge Brett Kavanaugh’s appointment to the United States Supreme Court. In August, The Arc came out in opposition to Judge Kavanaugh’s appointment to the highest court based on his decisions on cases involving self-determination of individuals with intellectual and developmental disabilities (I/DD), education, employment, and his stances on the Affordable Care Act and school choice.

The Arc has not publicly opposed a nominee to the Supreme Court in 30 years, since 1987 when Judge Robert Bork was nominated by President Ronald Reagan. When Judge Gorsuch was nominated to the highest court, The Arc did a thorough analysis of his record and decided to not oppose his appointment. The Arc solely takes positions based on the core values, mission statement, position statements, and public policy agenda for the organization.

“The Arc is disappointed in the Senate’s confirmation of Judge Kavanaugh, this is a devastating blow to disability and civil rights in our country. After a thorough analysis of Judge Kavanaugh’s record we chose to oppose his appointment and activate our grassroots network. Our organization was founded to promote and protect the human rights of people with intellectual and developmental disabilities. We couldn’t sit by idly knowing that Judge Kavanaugh has demonstrated a disregard for the impact of his judicial philosophy on the lives of people with disabilities and their families time and time again.

“Particularly concerning is his opinion in Doe. V. Tarlow, a case where women with intellectual disability who resided in the District of Columbia’s Forest Haven institution brought a class action lawsuit against the District for violating their due process rights. The District, through its developmental disabilities agency, consented to subject them to non-emergency surgical procedures, including abortions and eye surgeries, without even talking to them and their family members. Judge Kavanaugh’s ruling is disturbing in his apparent lack of appreciation for the humanity of individuals with intellectual disability, their basic human rights, and their ability and right to participate in important life decisions even when found legally unable to make decisions by themselves.

“We believe Judge Kavanaugh’s appointment poses a threat to the civil rights of millions of individuals with intellectual and developmental disabilities and their families. It is shocking that so many Senators ignored the gaps in Judge Kavanaugh’s knowledge and understanding of the value and perspectives of people with intellectual disability. Even more disheartening is those Senators who ignored the pleas of their constituents with disabilities who called on them to oppose Judge Kavanaugh’s appointment. We appreciate those who stood up for their constituents, their support did not go unnoticed. We remain united with our colleagues across the disability and civil rights communities and will continue our advocacy to support the values we hold dear as an organization,” said Peter Berns, CEO of The Arc.

The Arc of Loudoun Gets in the Halloween Spirit

Actors from The Arc of Loudoun County haunted house pose together in their costumes. The Arc of Loudoun and its Executive Director Lisa Kimball sure do know how to get in the Halloween spirit.
SHOCKTOBER, Northern Virginia’s only REAL haunted house experience, has been a destination event for almost a decade. The signature fundraising event has become so successful that last year, it accounted for almost 50% of the chapter’s fundraising budget. SHOCKTOBER is recognized as one of the best haunted houses in the DC/MD/VA area, and has provided an opportunity to build strong community partnerships, give back to the community, and more.

 

Fundraising is essential for any chapter of The Arc. Can you tell us a little about your chapter’s fundraising success? Do you find more success with individual giving in your region, or signature events like the Shocktober fundraiser?

As is the case for any nonprofit, fundraising is essential to our success, enabling us to fulfill our mission to empower, embrace, and engage adults and children with disabilities and their families. Our signature fundraisers include traditional fare. Our hallmark fundraising event, however, is very much off-the-beaten-path. We have a haunted house on our campus – not just the usual run-of-the-mill haunted house, but a 150-year old historical mansion that’s transformed into a thoroughly professional, PG-13-level haunt that requires guests to sign waivers before beginning their tours!

From a first-year gross revenue of about $40k (which absolutely thrilled us), we’ve grown to 2017’s 12,000 guests and more than $400k in gross revenue – which equated to almost 50% of our fundraising budget for last year. The exponential growth can be attributed to the expertise and detail that goes into each year’s haunt. SHOCKTOBER is recognized as one of the best haunted houses in the D-M-V, and we welcome haunt aficionados from all over the country and, occasionally, from other countries as well.

Can you give us a little history of the success of this event and other fundraising endeavors for your chapter?

SHOCKTOBER, Northern Virginia’s only REAL haunted house experience, has been a destination event for almost a decade.

SHOCKTOBER has matured into a destination event that includes a carnival atmosphere complete with t-shirts, fun merchandise, line entertainment, food and drinks all available on site (“liquid courage” can be found in the beer and wine tent!). New this year, in conjunction with our beloved community partners – 16 of them our ‘top-tier’ supporters – we’ve launched the “Trail of Terror”, a 3-day guide through Loudoun County to experience breweries, wineries, restaurants, and places to stay, all with a haunted twist.

How are you using this fundraiser/other events like it to build awareness and partnerships within your community?

All of this is made successful through our partnerships with multiple state and local tourism-centered organizations. Visit Loudoun, Loudoun County Tourism, and the Commonwealth of Virginia are all committed to supporting The Arc of Loudoun’s mission by granting advertising dollars to support SHOCKTOBER marketing efforts, spreading the word during meetings around the County to increase awareness of The Arc of Loudoun’s service offerings, and by “walking the talk” of embracing our community’s I/DD members. Each year the Town of Leesburg and the Loudoun County government eagerly participate in SHOCKTOBER; the Mayor of Leesburg looks forward each season to kicking off the event with an official ribbon ‘slashing’.

How does this particular event highlight the mission of The Arc of Loudoun and involve leaders throughout your network, including people with I/DD?

SHOCKTOBER is not just an exceptional fundraising extravaganza; it’s also an opportunity for The Arc of Loudoun to give back to our community. We award five $1k grants to fellow Loudoun County nonprofits whose missions include support for people with I/DD through our annual “We Scare Because We Care” campaign. Additionally, just as our supporters bring their money, time and talent to The Arc, The Arc gives back to our volunteers by providing outstanding educational and social opportunities for area high school students, most of whom return year after year to volunteer. Several of our volunteers (actors as well as those in concession and ticket sales positions) are people with intellectual, developmental and/or physical disabilities, and the five weeks of SHOCKTOBER at The Arc of Loudoun offer a unique experience where everyone is accepted and embraced for exactly who they are and honored for what they bring to the event.

MediSked and The Arc Release the 2018 Disability Data Digest

Building on the joint 2015 I/DD Data Digest, MediSked and The Arc of the United States are proud to announce the release of the 2018 Disability Data Digest, a compilation of the latest statistics from the disability field, displayed in an easy to read infographic format.

In the age of information, it can be difficult to discern what data is reliable, relevant, timely, and accurate. This resource provides a snapshot of today’s disability community and highlights the areas in which progress has been made toward achieving parity in access to opportunity and basic human rights, while also delineating the many challenges that still face individuals with I/DD in striving for inclusion and equality.

The report includes detailed statistics about the following topic areas:

  • Population and Demographics
  • Socio-Economic Profile
  • Employment
  • Health
  • Housing
  • Independence and Decision-Making
  • Living in the Community
  • Long Term Supports and Services
  • Direct Support Professional Crisis
  • Family Caregiving and Natural Supports
  • Disability and the Justice System

We’ve included a fillable State & Local Advocacy Data Toolkit that is linked to resources and databases which contain state-specific data to support local-level advocacy campaigns. Additionally, we have made each of the individual infographics from the Data Digest available for use, with proper citations. You can utilize these resources to identify vital statistics in your state and community to fuel advocacy efforts.

Click here to download the 2018 Disability Data Digest.

The Arc Responds to Tax Cuts 2.0 Passed by the House of Representatives

Today the House of Representatives passed a tax bill that would permanently extend tax cuts signed into law at the end of last year in the Tax Cuts and Jobs Act. The Arc released the following statement in response:

“This is more of the same irresponsible tax legislation we opposed last year. Reducing federal revenue as this bill does will increase the pressure to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities.

“We are disappointed that the House leadership rushed to pass this bill with no consideration of the individuals with disabilities and others who would be negatively impacted. The Senate is our last line of defense, and we implore Senators to do the right thing and oppose this bill,” said Marty Ford, Senior Executive Officer of Public Policy for The Arc.

The Arc on Proposed Rule from The Trump Administration That Would Impact People with Disabilities Legally Residing in the US and Seeking to Legally Immigrate

Following the draft notice of proposed rulemaking (NPRM) that would impact people with intellectual and developmental disabilities (I/DD) who are legally residing in the United States as well as people with I/DD who are hoping to legally immigrate, The Arc released the following statement:

“We are facing a civil rights crisis in our nation and people with disabilities are in the crosshairs with the proposed rule released by the Department of Homeland Security. If finalized and administered as is, this rule would discriminate against immigrants with disabilities, making it harder to legally enter or remain in the country.  To deport individuals with intellectual and developmental disabilities who are in our country legally or prevent them from immigrating, goes against the values of our nation.

“At The Arc we believe people should have a fair opportunity to legally enter and reside in the United States and become a citizen, without restrictions based on disability. This includes those needing protection as refugees, asylees, and victims of human trafficking.

“Focusing on an individual’s need for support is a form of discrimination against people with disabilities we have seen before.  But Congress, in the past, addressed the problem by ensuring that people with intellectual disability are provided accommodations as they try to enter our country legally, become citizens, and achieve the American dream like their peers without disabilities. Broadening the criteria for excluding or deporting immigrants based on need for support will harm people with disabilities and their families who have much to contribute to our society.

“If a family is otherwise eligible to enter or remain in our country, they shouldn’t be turned away or turned out because their child or another family member has a disability and may need to access government services to live and participate in the community.

“We will be offering comments to this proposed rule and hope other organizations and individuals will do the same. It would be disgraceful if this were to be adopted as a final rule.  We also call on Members of Congress, as they have done in the past, to stand up for people with intellectual and developmental disabilities and their families as they seek inclusion in America,” said Peter Berns, CEO of The Arc.

The Arc Responds to Norm Macdonald’s Down Syndrome Comment

The Arc released the following statement in response to Norm Macdonald’s remarks about people with Down syndrome:

“It is disheartening that yet again we need to remind a public figure to show respect for people with intellectual and developmental disabilities.  What is particularly disturbing about Norm Macdonald’s comment is that in his attempt to explain away his insensitivity to the #MeToo movement, he chose to mock a group of people who have a much greater understanding of victimization than he does.

“People with intellectual and developmental disabilities are seven times more likely to be victims of sexual assault than those without disabilities. Mr. Macdonald’s comment is doubly offensive and shows his ignorance about the disability community. We welcome the opportunity to educate Mr. Macdonald about the disability rights movement and hope that in the future he will show more respect for millions of people with disabilities, their families, and all victims of sexual assault,” said Peter Berns, CEO of The Arc.

The Arc and University of Minnesota Release Compelling Data on the Need for Paid Leave for Disability Community in Our Nation

Today, The Arc and the Research and Training Center on Community Living at the University of Minnesota released two new data briefs looking at the work experiences and outcomes of families of people with intellectual and developmental disabilities (I/DD) and the need for paid leave policies. One brief focuses on the experiences of parents raising children with I/DD, while a second brief focuses on the experiences of family caregivers of adults with I/DD.

These data briefs examine subsamples of data from the Family & Individual Needs for Disability Supports (FINDS) Community Report 2017. The intent of this one-of-a-kind survey conducted by The University of Minnesota’s Research and Training Center on Community Living, in collaboration with The Arc, is to understand the experiences of families who provide supports to a family member with I/DD.

The FINDS Survey revealed that, despite the progress that many states have made to increase availability of resources and public funding to provide supports for caregivers and individuals with disabilities, many critical challenges remain. The two new data briefs delve into family members’ employment outcomes and the importance of paid leave as a benefit for family caregivers. The data briefs revealed that:

• Parents raising children with I/DD and working family members who provide support to adults with I/DD report significant challenges balancing work and caregiving and commonly experience negative employment outcomes.
• Caregivers face major gaps in employer supports. Less than half of working family members reported that they were able to take paid time off to care for their family member with I/DD (42% of parents of minor children, 40% of family members of adults).
• A substantial majority (86% of parents of minor children, 85% of family members of adults) thought that offering partially paid leaves of absence from work to meet caregiving responsibilities would be helpful or very helpful.

The need for paid family and medical leave is universal. Nearly all of us will need paid leave at some point – to care for a family member’s or our own serious medical condition, or to welcome a new child into a family. Often missing from the national conversation is the disability angle. One in five Americans live with a disability. Yet the reality is, in the U.S. workforce, only 1 in 7 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.

“This report paints a picture of the day-to-day needs of caregivers and should ignite action by employers, legislators, and advocates to work together to address the gap in support for employees who require paid leave to support their loved one with a disability. This data brief highlights the importance of paid leave for caregivers in our nation and our hope is that by sharing it we will raise awareness around this issue of national importance,” said Peter Berns, CEO of The Arc.

In tandem with the release of these data briefs, The Arc is releasing a new video which shares the personal story of a family that benefited from unpaid family leave. In the first year of his life, Josh had 10 surgeries and many Pediatric Intensive Care Unit (PICU) hospitalizations for respiratory and shunt infections. His parents, Victor and Debbi, did their best to juggle their professional obligations with raising their two older children and Victor’s duties in the U.S. Marine Corps Reserve, all while navigating Josh’s complex medical needs and disabilities.

The Family and Medical Leave Act (FMLA) provided salvation for Josh and his family. With the pressures at work mounting, and the need to focus on Josh’s day to day care, FMLA was their family’s last recourse to getting the time they needed to support Josh. Debbie was able to take unpaid leave while protecting her job and health insurance benefits. Most importantly, she was able to spend time with Josh during his time of need. While the FMLA was invaluable, Debbie discusses how paid leave would have helped even more. She invites others to join her in advocating for paid leave.

About the FINDS Survey
The FINDS survey was implemented primarily using an on-line survey between January and March of 2017. The survey was also made available in English and Spanish paper versions. Caregivers who were family members or friends of people with I/DD and who provided support were invited to participate in this survey. Direct support professionals or other caregivers whose primary relationship with individuals with I/DD was in a paid role were not included in the sample.

More than 3,000 people (3,398) met the criteria to be included in the survey and consented to partici¬pate. Caregivers surveyed included respondents from all 50 states, DC, Puerto Rico, and Guam. The number of people responding was large and provides important information about the experiences and outcomes of family caregivers of individuals with I/DD in the United States. However, the sample is not reflective of the racial and economic diversity of the United States.

Filling a Vacuum for LGBTQ Supports: A Conversation with The Arc Mercer’s Steve Cook

Last year, a client at The Arc Mercer approached Executive Director Steve Cook to confide in him about his struggles feeling accepted in the community. It was an “aha” moment for Steve – and one that led to the creation of what is believed to be among the first initiatives that exists to meet the support needs of individuals with disabilities who identify as LGBTQ.
Members of The Arc Mercer's SNAP program supporting LGBTQ individuals, including executive director Steve Cook, are seated on a couch smiling for the camera.
Tell us about the SNAP program and how it came to exist! What type of activities does it involve?

When I realized that someone we served in our agency was struggling with how to successfully integrate into the community as an LGBTQ individual with special needs, I researched other possible resources and found none really existed that comprehensively provided integrated community settings and professional counseling.

I decided The Arc Mercer would commit to developing a program that not only met the needs of someone who identified as LGBTQ with special needs, but that we would share our experiences to allow others to replicate the program.

That is basically how SNAP was formed.

How is the program helping you build a presence and connections/partnerships in your community – both with media and with other organizations?

SNAP has garnered incredible media support due to its unique status as one of the first of its kind in the nation.

As we shared this organization’s mission throughout New Jersey, and the region, we found leaders of other organizations are receiving feedback from their frontline staff about the need for LGBTQ supports for those that they serve. This has led to an incredible surge in awareness by organizational leaders about the need for this type of support.

How do you create that safe space where individuals to feel comfortable participating in the group activities?

One of our first steps was to identify staff within our organization who sympathize with, and support, the mission of SNAP.

This allowed us to build a supportive environment for those we serve to engage in community activities and dynamic professional counseling sessions (through our health care clinic) that focus on creating integrated and safe community events and professional counseling sessions (individual and group), that have evolved into a social environment for members of SNAP to thrive within.

What does the future of the program look like to you?

It is our hope that the framework of our current SNAP organization, including integrated community events, and a comprehensive counseling program (that encourages individuals, their friends and family, and others who identify as LGBTQ with special needs, to openly communicate about how they feel and their goals), will be able to be replicated throughout the nation.

Why do you think establishing groups like this is important? Do you have any advice for other chapters looking to build out programs that address traditionally underserved/under-represented communities like this?

Chapters of The Arc have always strived to find best practices and share them with other chapters nationally.

I think our experiences will allow others to build programs that create safe environments for those we support to be integrated, healthy and safe in the LGBTQ community.

My advice to any chapter looking to replicate our program is to identify those in your organization who support this mission and encourage them to organize events with LGBTQ organizations in local colleges, schools and community organizations.

More importantly, identify counseling resources to support staff, family members and those we serve who identify as LGBTQ.

This may be hard, but thanks to a suggestion by a member of The Arc’s national team (Allen Miller), we are exploring the use of telemedicine (counseling) through our Healthcare Center.

Of course, I am always available to talk directly with anyone who wants to explore forming a similar group at stevencook1@msn.com.

 

Anthony Nash Says #HandsOff During August Recess!

#HandsOff is a series on The Arc Blog where individuals and families across The Arc’s network share their stories about how some of today’s key policy issues impact their day to day lives.

Anthony Nash stands in front of the Capitol building in Washington DC wearing a long sleeve burgundy shirt and slacks. During August Recess, Members of Congress return to their home states to meet with their constituents. It’s the perfect time for advocates to meet with legislators and tell them #HandsOff important programs – like Medicaid, Supplemental Security Income (SSI), Supplemental Nutrition Assistance Program (SNAP) and much more.

Nobody says #HandsOff during August Recess better than Anthony Nash! Anthony is an active self-advocate in his home state of Washington. He is a member of The Arc’s National Council of Self-Advocates and The Arc of Washington’s Self-Advocates in Leadership (SAIL) coalition. Anthony also serves on the Washington State Developmental Disabilities Council and the board of Disability Rights Washington.

Anthony has fought for issues important to people with disabilities for several years. Here’s what he had to say about advocacy during August Recess:

How did you get involved in advocacy?

I used to work in a sheltered workshop. I got pushed around a lot and even called the r-word there. So one day, I went to the library and asked the librarian for books on disability rights. I read about how people with disabilities have [the same] equal rights as any other person. After that, I joined some advocacy groups and started to stand up for myself.

What does being a self-advocate mean to you?

Self-advocacy means quite a bit to me. A lot of people look down on people with disabilities and think we can’t amount to anything. I do everything I can to prove them wrong. Being a self-advocate lets me show others that we are equal, that we deserve respect, and that we should not be discriminated against in any manner.

Why do you think it is important for people with disabilities to advocate for programs like Medicaid and Supplemental Security Income (SSI) during August Recess?

These programs are our lifeline! Most of our leaders don’t understand that these programs cover significant needs. Since I was four years old, SSI has helped to pay for my food, clothes, transportation, and other living expenses. I use Medicaid to pay for the medicine and doctor visits I need. Self-advocates need to speak up during August Recess when legislators are back home so they know why these programs are important to us.

 

Ready to join Anthony in saying #HandsOff during August Recess? Take a few minutes to call YOUR Members of Congress and tell them why Medicaid and SSI are important to you. Then encourage your family and friends to call, too!