Blaze a Trail to Future Planning

In the spirit of this year’s Older Americans Month theme, “Blaze a Trail,” The Arc recognizes the many parents of adults with intellectual and developmental disabilities (I/DD) who fought for decades to raise their children at home, to realize their rights to free and appropriate public education, and for recognition as valued contributors to the community. The Arc is committed to supporting these aging caregivers and their adult sons and daughters with I/DD to develop a roadmap for the future.

Future planning is important for all families, but it can be especially challenging for the almost 1 million families in which adults with I/DD are living with aging caregivers.  In two-thirds of these families, there is no plan in place for the future. Many of these families have no connection to the disability community or the disability service system. It is our role to support them to overcome the fear of planning and provide them the information and resources they need to create future plans.

To support these trailblazing families, The Arc of the United States launched the Center for Future Planning™ in 2014. Discussing these major life transitions and putting a plan in place may actually alleviate some of the stress experienced by aging caregivers, their adult sons and daughters, and other family members and supporters.

The Center’s website provides reliable information and assistance to individuals with I/DD, their family members and friends, staff at chapters of The Arc, and other disability professionals on:

  • person-centered planning
  • supported decision-making and guardianship
  • housing options
  • financial planning (including public benefits, special needs trusts, and ABLE accounts)
  • employment and daily activities
  • making social connections
  • providing information if an urgent need arises

During Older Americans Month, here are some ways you can access more help:

  • Read more information about future planning and see how other families have planned.
  • View The Arc’s webinar on supports and services for aging caregivers.
  • Visit The Arc’s new Build Your Plan™ online tool that enables families to create accounts and begin to build their plans within the Center for Future Planning™. Check out the demonstration webinar to learn more about how to navigate Build Your Plan and encourage families to begin creating plans.
  • Encourage families you know to start the process and to get support in their communities. Chapters of The Arc around the country can provide guidance and information about local resources.  Families can also identify professionals in their communities to help them create and implement future plans through The Arc’s Professional Services Directory.
  • In addition, Area Agencies on Aging (AAA) can help with accessing services and support available to seniors. AAAs offer a variety of home and community-based services such as respite, meals on wheels, and transportation. Visit ncoa.org for more information about additional benefits available to seniors.

Supporting aging caregivers and adults with I/DD is an ongoing process and is possible with the help of other family members, friends, the community and professionals. It’s important to work together to develop a plan that will ease the stress of future transitions. You can contact The Arc’s national office at (202) 202-617-3268 or futureplanning@thearc.org for more help.

The Arc’s Letter to Gary Owen on his Comments Offensive to People with Disabilities

May 12, 2016
Dear Mr. Owen,

I am writing in regard to your Showtime Special “Agree with Myself”
and its flagrant mockery of people with intellectual and developmental
disabilities (I/DD). As the nation’s largest organization serving and advocating
with and for people with I/DD, with a network of more than 650 chapters across
the country, we’ve received many complaints about the content of this
program from people who are truly outraged. Having watched the offensive clip
myself, I felt compelled to contact you to voice our concerns.

The segment I am referring to includes you using the word ”retarded” to
describe your cousin with intellectual disabilities. People with I/DD have made
clear for decades that they consider the ”r-word” to be demeaning and don’t
accept it being used to describe them. They view it as analogous to the use of
the ”n-word” to describe a person who is black. For them it is a slap in the face
that reminds them of all the verbal and physical abuse and discrimination they
have experienced on a daily basis. What they want is respect.

In addition to the use of this slur, the content of your act, your antics
and the tone you took are equally unacceptable. Your sketch about your cousin,
her lover and her friends is demoralizing and attacks individuals with I/DD on
multiple levels, from their speech to their sexuality. You dehumanize them for
laughs, not taking into account the dark history individuals with disabilities have
faced in our nation. Individuals with disabilities have suffered through decades
of discrimination and humiliation including forced sterilization, abuse, and
institutionalization.

The fact of the matter is that your special contains callous verbal
violence against a minority group. I hope you can see that this goes beyond an
issue of an artist’s freedom of speech – this is hate speech. The Arc, Special
Olympics, dozens of other disability organizations, and thousands of advocates
across the country are united in our outrage that you and Showtime have failed
to pull this program from On Demand or edit out the offensive segment. We
hope you have dropped it from your live performances.

IVlr. Owen, perhaps you don’t understand that 85 percent of people
with I/DD are not employed, when they could be working but no one will hire
them. Or maybe you are unaware that people with disabilities are three times
more likely to be the victim of violent crimes and four times more likely to be
victims of sexual violence. Fifty-two percent of students with I/DD leave high
school without a regular diploma which greatly limits their prospects for
employment and post-secondary education. Public attitudes and lack of
understanding of people with I/DD, and lack of appreciation for their humanity,
is perhaps the single biggest reason for the challenges people with I/DD face in
being fully included, participating and being treated fairly in their communities.

You could have been part of the solution, as has your fellow comedian
Amy Schumer, but instead you contribute to the problem. Recently, 50 Cent
knew when to apologize after stepping over the line, why not you?

I welcome the opportunity to discuss this matter with you and to
introduce you to people with I/DD who are quite different from the caricature
you provided. As you tour the country in the coming months, we would be
happy to connect you with local chapters of The Arc that will arrange for you to
meet people with I/DD who are leading full lives in and are contributing to their
communities.

Sincerely,
Peter V. Berns
CEO, The Arc

Proposed Ban of Electrical Stimulation Devices An Overdue Step Forward for Dignity and Respect for People with Disabilities

By: Nicole Jorwic, Director of Rights Policy

Every behavior is a form of communication. This is a truth that must be remembered, as we advocate for the civil rights for individuals with intellectual and developmental disabilities (I/DD). Even self-injurious or aggressive behaviors are an attempt by an individual to demonstrate something. Supports should be in place to draw out that communication, not shock it or punish it away. This is why the recent proposed rule from the Food and Drug Administration (FDA) banning the use of electrical stimulation devices (ESD) to treat these forms of behavior is so important.

Per the FDA’s proposed rule, the use of electrical stimulation devices pose the risks of depression, fear, anxiety, panic, learned helplessness, and are associated with the additional risks of nightmares, flashbacks, hypervigilance, insensitivity to fatigue or pain, changes in sleep patterns, loss of interest, difficulty concentrating, and withdrawal from usual activity. The science verifying those risks is clear, while there is no scientific proof that the use of electric shock has benefits in the short or long term.

The science has been clear for years and for decades The Arc has provided testimony at hearings on this issue, submitted comments, and filed amicus briefs encouraging the ban of these devices. Instead of using harmful and demoralizing ESDs, the focus of treatment for all individuals with I/DD who cannot use their voices or other forms of communication to express their wants and needs, must be on changing environmental factors. This will allow the roots of challenging behaviors to be found and allow the individual to discover alternative behaviors that can be used to meet their needs.

The Arc has adopted position statements opposing the use of aversive procedures since at least 1984. Our current position statement on Behavioral Supports developed jointly with the American Association on Intellectual and Developmental Disabilities (AAIDD) and adopted by both organizations in 2010, states in part:

Research indicates that aversive procedures such as deprivation, physical restraint and seclusion do not reduce challenging behaviors, and in fact can inhibit the development of appropriate skills and behaviors. These practices are dangerous, dehumanizing, result in a loss of dignity, and are unacceptable in a civilized society.

The Arc and AAIDD are opposed to all aversive procedures, such as electric shock, deprivation, seclusion and isolation. Interventions must not withhold essential food and drink, cause physical and/or psychological pain or result in humiliation or discomfort.

Our position statement on Education, which was adopted by the Congress of Delegates in 2011, states in part:

In order to provide a free, appropriate public education for students with I/DD, all those involved in the education of students with I/DD must:

  • Ensure that students with disabilities are not subjected to unwarranted restraint or isolation or to aversives.

The Arc is strong in its belief that it is the responsibility of government to protect individuals with disabilities from mistreatment. Using aversive procedures to change behaviors of individuals with intellectual and developmental disabilities is dangerous, dehumanizing, a violation of civil rights, results in a loss of dignity, and is unacceptable in a civilized society.

The Arc applauds the FDA in its effort to ban the use of devices that emit electric shock as a means of modifying the behavior of individuals with intellectual and developmental disabilities.

 

DOL Releases New Overtime Final Rule-Including Non-Enforcement for Some Medicaid Providers

By: Nicole Jorwic, Director of Rights Policy

The Department of Labor released the much anticipated final Overtime rule today, with the an effective date of December 1, 2016. Along with the rule, DOL announced a non-enforcement policy for providers of Medicaid-funded services for individuals with intellectual or developmental disabilities in residential homes and facilities with 15 or fewer beds. The full policy will be published in the Federal Register next week. The non-enforcement policy will be in effect from December 1, 2016 (when the final rule goes into effect,) until March, 2019. In a call between The Arc staff and DOL and it’s Wage and Hour division, it was highlighted, that this non-enforcement timeframe aligns with the implementation timeline of the Home and Community Services final rule. This will allow HCBS Medicaid providers, who qualify, to prepare for the implementation.

From the DOL Website: Key Provisions of the Final Rule

The Final Rule focuses primarily on updating the salary and compensation levels needed for Executive, Administrative and Professional workers to be exempt. Specifically, the Final Rule:

  1. Sets the standard salary level at the 40th percentile of earnings of full-time salaried workers in the lowest-wage Census Region, currently the South ($913 per week; $47,476 annually for a full-year worker);
  2. Sets the total annual compensation requirement for highly compensated employees (HCE) subject to a minimal duties test to the annual equivalent of the 90th percentile of full-time salaried workers nationally ($134,004); and
  3. Establishes a mechanism for automatically updating the salary and compensation levels every three years to maintain the levels at the above percentiles and to ensure that they continue to provide useful and effective tests for exemption.

Additionally, the Final Rule amends the salary basis test to allow employers to use nondiscretionary bonuses and incentive payments (including commissions) to satisfy up to 10 percent of the new standard salary level.

DOL has released several documents for non-profits including guidance and a shorter fact sheet. Additional resources can be found on DOL’s website. DOL will also be hosting several webinars to provide additional information: register here.

Remembering Adonis Reddick

WhonPhoto_Oct5Cam1_309It is with heavy hearts we share the news that Adonis Reddick passed away last week. Adonis was an amazing and powerful advocate and we will remember him as a dear friend to The Arc.

Adonis was a powerhouse when it came to advocating for people with disabilities in St. Louis, and his work inspired change statewide. The vision of a better world for individuals with disabilities was what drove him and that was reflected in everything he did.

Adonis never sat on the sidelines, he was constantly working.  He served as a member of St. Louis Arc’s Human Rights Committee, the St. Louis Self Determination Collaborative, The Coalition on Truth in Independence, and was active Partners in Policymaking at the state level. In addition to his work with these groups he co-founded of the Association of Spanish Lake Advocates (ASLA), a group committed to an accessible world based in full inclusion. Hard to imagine that in addition to all of this he also actively pursued opportunities to speak to local governments, agencies, businesses, and community leaders to ensure that the voices of those living with a disability were heard.

His unwavering commitment and passion for his work was as infectious as his smile.  Where others saw barriers, he saw the opportunity for collaboration and change – one of the many reasons he was able to make such an impact.

Many know Adonis as the inaugural winner of The Arc’s Catalyst Award for Self-Advocate of the Year. These awards were created to recognize those who were trailblazing to make the future more inclusive.  We seek out the best of the best people and organizations making an impact of national significance.

At the awards luncheon, you could have heard a pin drop when Adonis was at the podium. He captivated us with his energy. His energy became the room’s energy when he said:

“Whatever you want in this world you can put in or take out. Together we can make change happen.”

He put everything in, and we thank him for making many great things happen.

Chapters Commemorate Martin Luther King, Jr., Day of Service and Improve Disability Inclusion Across America

Many of our chapters spent the past two months executing service projects made possible by a grant from The Corporation for National and Community Service, the federal agency that leads national Martin Luther King, Jr. Day of Service.

Many perceive people with disabilities as the ones in need of service – but in reality, they are often a part of civic engagement at the state, local, and national level. Chapters executed great projects, including food drives and food delivery events. Check out our new Facebook album or each chapter’s Facebook page below for highlights and pictures from each event. Thank you for participating in this wonderful opportunity with us!

  • TARC: Our local chapter in Tulsa, Oklahoma, kicked off their MLK Day of Service at a University of Tulsa basketball game. Volunteers with developmental disabilities from TARC worked with university students to accept canned food donation and transport food to the Community Food Bank of Eastern Oklahoma. In February, volunteers from the chapter also packaged food at the Food Bank of Eastern Oklahoma; served meals at the Kendall Whittier Elementary School; and conducted a month-long food drive at the University of Tulsa and at the True Blue Neighbors office.
  • The Arc Big Bend: On February 15th, this Madison, Florida, chapter hosted a “free lunch” for 250 people who experience food insecurity at a local park. Volunteers with and without disabilities from the local Kiwanis club, Aktion Club, local health department, and nursing school hosted a variety of activities, including free health screenings, fire rescue demonstrations, and performances from a local boys choir.
  • The Arc of Greater Twin Cities: Our Minneapolis/St. Paul, Minnesota, chapter worked with Second Harvest Heartland Food Bank to deliver emergency food aid to at least 180 people in need. During the weekend before MLK Day, thrift stores operated by The Arc of Greater Twin Cities engaged volunteers to work at their thrift stores to collect canned food and sort clothing to be sold (the proceeds of which supported the work of The Arc of the Greater Twin Cities).
  • The Arc of the Glades: The Arc of The Glades in Belle Glade, Florida, began a joint adventure with The Church of The Harvest and Lighthouse Food Pantry to help provide food to those in need in our local community. As of February 10th, 40 volunteers with and without disabilities have given 385 hours of their time, served 2,468 meals, and distributed 5,686 bags of food to those in need.
  • The Arc of Luzerne County: Our chapter in Wilkes Barre, Pennsylvania, partnered with the Wilkes Barre Kiwanis and Pittston Rotary Club to box food for over 150 low-income seniors at the Commission on Economic Opportunity,  a local community organization that serves people suffering from poverty on MLK Day. Since this initial event, volunteers with disabilities have been serving in the kitchen at the Commission on Economic Opportunity to help prepare 800-1000 lunches daily for low-income children in the area.
  • The Arc Nature Coast: Throughout February, volunteers with and without disabilities in Brooksville, Florida, delivered and distributed fresh fruits and veggies to nearly 300 families at four food banks in the community.
  • The Arc of the Midlands: Working with community partners, this South Carolina chapter fed close to 200 people at an event that included live music, a basketball scrimmage, and special guests including state representative Chip Huggins and Indianapolis Colts football player Kelcy Quarles.
  • The Arc of Virginia: On February 19th, volunteers and chapter staff assembled 230 meals for distribution to people in Richmond who experience food insecurity. This effort was supported by Virginia Delegate Kaye Kory, members of the Virginia General Assembly, and assembly staff.
  • The Arc of Walton County: The Arc of Walton County partnered with their local Anchor Club and The Matrix Community Outreach Center to provide food to those in need in northwest Florida.
  • Genesee Arc: This New York chapter supported volunteers with and without disabilities to conduct food drives throughout the month at twelve different community locations. The food collected was donated to 200 children in need at the United Way of Genesee County’s Backpack Program, which provides food to school-age children who experience food insecurity on the weekends.

Reflections on the State of the Union Address

By: T.J. Sutcliffe, Director of Income and Housing Policy for The Arc

Last night, Americans across the nation, including people with intellectual and developmental disabilities (I/DD) and their families, tuned in for President Barack Obama’s final State of the Union address.

The Arc live Tweeted, and I had the honor of representing The Arc at the White House for the State of the Union Social live-viewing.

Here are five highlights that people with I/DD and their families will want to know about:

  • Remembering San Bernardino — One of President Obama’s guests at ‪SOTU was Ryan Reese, partner to Larry “Daniel” Kaufman who was one of the 14 victims of the December 2 attack at Inland Regional Center in San Bernardino, CA. Daniel was a job coach for people with disabilities who lost his life after saving four people. As we tuned in to SOTU, our hearts were with Ryan, Daniel, and all of the victims in San Bernardino, their families, loved ones, and community.
  • Disability affects us all, and we are stronger together — At the White House, Vice President Joe Biden kicked off the SOTU watch party. In his remarks, the Vice President shared an inspiring story about the Americans with Disabilities Act of 1990 (ADA) highlighting the need for us all to work together. After now-deceased Senator Jesse Helms (R-NC) rejected a precursor of the ADA, then-Senator Biden was very angry with Senator Helms and thought the worst of him. But then he learned that Senator Helms and his wife had adopted a child with a disability. The Vice President summed up, “It’s always appropriate to question another man or woman’s judgment, but it’s never appropriate to question their motive,” because you just don’t know.
  • Our lifeline: Social Security, Medicaid, Medicare and SSI — We couldn’t agree more with President Obama about this: “That’s why Social Security and Medicare are more important than ever; we shouldn’t weaken them, we should strengthen them.”
  • Lois Curtis, a disability rights champion — One of the “voices of fairness and vision, of grit and good humor and kindness that have helped America travel so far” highlighted on video as President Obama spoke was Lois Curtis, one of two named plaintiffs in the landmark ADA case Olmstead v. L.C. It was amazing to see Lois, a fierce advocate for people with disabilities, featured along with civil rights leaders like Martin Luther King, Jr., Alice Paul, and Cesar Chavez.
  • A SOTU for everyone — We thank the White House for making this the most accessible SOTU ever for people with disabilities.

What were your thoughts about the State of the Union? Share them with us on social media (Twitter & Facebook).

Get the Year Started Off Right with National Healthy Weight Awareness Month

HealthyEatingMaintaining a healthy weight is hard all year round, but can be especially hard during the winter holiday season. According to the CDC, maintaining healthy weight happens when a person keeps his or her weight at the right amount based upon a person’s height, the amount of food/drink he or she eats, and his or her activity level.

Maintaining a healthy weight can be hard, but people with disabilities tend to have more difficulty maintaining a healthy weight than people without disabilities. This occurs for many reasons, including the use of various prescription drugs that cause weight gain, less opportunity or education about exercising, fewer trainers who know how to work with people with disabilities, and less education about how or why it is important to eat healthily.

Fortunately for all of us who need to be better at watching our weight, January is National Healthy Weight Awareness Month! This month encourages people of all ages, weights, dress/pant sizes, and ability levels to improve their health and well-being by being more active and eating healthier. Here are some things that you and your family can do to improve your health and start your year right:

Reaching your healthy weight goals takes time. While you may not get to your ideal weight overnight, we hope these links will provide you inspiration and opportunities to get active and have a happy and healthier 2016!

Mitsubishi Electric America Foundation Grant Supports Specialisterne Program

By Katherine Murphy, Business Development Assistant for The Arc@Work. The Arc@Work provides companies with employment support services to assist them to find, hire and retain employees with I/DD.

In 2015, The Arc received a 3 year grant from the Mitsubishi Electric America Foundation (MEAF) to support the replication of its Specialisterne project. The Specialisterne program empowers individuals with Autism Spectrum Disorders (ASD) both by providing individual participants the foothold they need to start their careers in IT and by supporting major employers in the field who want to hire more individuals with disabilities. For these individuals, the application and interview process presents social and information-sharing challenges, often leading employers to misinterpret the individuals’ true strengths and abilities. Through the Specialisterne program participants are given the opportunity to go through an interview process that is tailored to highlight their abilities, giving employers the opportunity to see how capable they truly are.

The Arc and its chapters now run the program in 4 locations: Philadelphia, PA; New York, NY; Washington, DC; and Columbia, SC. At these locations, The Arc has already partnered with a number of national corporations, including SAP, CAI, Towers Watson, Microsoft and Ernst and Young, and trained more than 40 individuals with ASD. The Arc of DC successfully completed its second training in September for potential Microsoft jobs in Redmond, WA.  The Arc of Philadelphia is currently partnering with SAP for a second round of hiring, and Ernst and Young to train 20 plus individuals for analyst and administrator positions at both corporations. The Arc of Camden County in New Jersey has stepped in to help train and place individuals in Ernst and Young’s Mount Laurel location.

Thanks to the support of MEAF, The Arc has plans to replicate the Specialisterne program at an additional 2-3 sites in 2016 and we are currently looking in the following locations: New Jersey, North Carolina and Massachusetts. The Arc is excited about the progress that has been made with our Specialisterne program in 2015 and is looking forward to continuing the expansion of the program in 2016.

Autism Now On the Road – Talking about Bullying

By: Amy Goodman, Director Autism Now

The launch of my newest feature on Autism Now: Public Speaking has gone well. I have presented two times. I presented on Marriage, Dating, and Relationships at The Arc of Alabama’s conference in October, and I just presented in New York about Adult Bullying. This presentation focused on what to do after the bullying incident and what to include in an anti-bullying program at The Family Service League of New York in North Hampton Beach, Long Island.

This experience gave me insight into what teachers, professionals, and service personnel need in terms of helping children, adolescence, and adults on the spectrum to overcome this challenge and move on with their life. I learned about different anti-bullying techniques or programs that were being implemented in New York Schools. One such program was a buddy system where an individual with an ASD was paired with a pal or mentor and they had to have lunch with them two or three times a week to work on social skills. Sometimes it worked and sometimes it didn’t as one teacher reported that yes, the two met, but one was eating and one was reading a book and not conversing at all. The point of the meeting was supposed to be getting individuals with ASD to be open and talking and not always passive and avoiding, not just reading, to show them that it is okay to talk too.

I was able to use my personal story to show what the long term effects of bullying are and what kinds of things I think need to be addressed to help individuals on the spectrum to cope with the aftermath. The saying “sticks and stones may break my bones, but words will never hurt me” just isn’t true at all – words do hurt and it is a taunt that can haunt an individual forever. Words can traumatize this vulnerable population in unspeakable ways.

My motto is this: Stand up to the bullies, be brave, and be a buddy not a bully. I know that this is a tall order and it is easier said than done but the more you talk about it and the more you advocate for the bully to do the right thing the better off you will be. Bullies can be mean and nasty but you can be better than them by being yourself, standing up for what you believe in, and doing the right thing by reporting incidents of bullying to the proper authorities. Life can and will get better, just open your eyes and see all the possibilities out there. Above all else believe in yourself and remember the more you know the more empowered you will be.

If you would like to find out more about my services, please contact me at info@autismnow.org or 1-200-600-3489