Two Small Words Bring Meaningful Change for Special Needs Trusts

By Marty Ford

The enactment of the 21st Century Cures Act (P.L. 114-255) on December 13 brought with it a very short but meaningful provision for people with disabilities. By adding only two words (”the individual”) to an existing statute, section 5007, the Fairness in Medicaid Supplemental Needs Trusts, will allow individuals who have disabilities to set up their own self-settled trusts for purposes of the Medicaid program.   This technical fix was long needed to address a technical legislative drafting error in a 1993 federal law which was later interpreted to have Congressional intent.

Self-settled special needs trusts are an important planning tool for many individuals with disabilities who receive certain government benefits, such as Medicaid and Supplemental Security Income (SSI), and who receive funds from other sources, such as an inheritance or personal injury lawsuit. Without such a trust, these individuals would lose their government benefits that are essential for basic living and medical expenses. Prior to enactment of this new law, individuals with disabilities who didn’t have a living parent or grandparent couldn’t create their own self-settled special needs trust without going to court. This new law moves us forward in addressing the needs of many people with disabilities who can and should be able to handle their financial affairs without the need for court intervention or other obstacles that stand in the way.

Robert Perske: A Celebration of Life Delivered at his Memorial Service

By Quincy S. Abbot, Friend and Past National President of The Arc

Bob was one of the humblest of men and also one of the most outspoken of men when urging that individuals with intellectual disabilities have the right to live as other humans live. Bob approached each person as a friend. Each person had self-worth. To Bob, all lives mattered. Specifically, all lives of those with intellectual disabilities mattered.

Bob lived the life that he spoke and wrote about. He ignored any category describing the person. He became a friend with the person. He believed that “the real sin is separation” from other people.

Bob was assigned in the 1960s as Chaplain to the Kansas Neurological Institute (KNI). As such, he became friends with each of the residents and began to wonder why they lived there. The National Association for Retarded Children [1] presented Bob with the Rosemary Dybwad [2] International Award so he could visit Scandinavia “to study the ways in which Swedish and Danish people have given human dignity to their mentally retarded citizens.”

On his return, Bob published an article titled The Dignity of Risk. He laid out a new approach to individuals with intellectual disabilities. “You are a human being and so you have the right to live as other humans live, even to the point where we will not take all the dangers of human life from you.“ He told me a few years ago “that what I wrote was far from popular at KNI in those earlier days.” There remain pockets of disbelief today centered around the remaining institutions.

The Dignity of Risk. What a concept! This was published, and I first read it, in 1972, about the time that I became active in The Arc. It had a profound effect on my attitudes and my daughter’s life. When she wanted to abandon the yellow school bus and walk to school like her sisters, the school opposed undertaking that risk. I insisted that she walk with the words The Dignity of Risk ringing in my head. When she wanted to take the regular bus to and from work, The Dignity of Risk bell rang again. When she wanted to leave the group home for an apartment with another young woman, The Dignity of Risk bell rang once more.

The Arc was an important part of Bob’s life and Bob was an important part of The Arc at local, state and national levels. Each has been enriched by the other. It was The Arc that enabled Bob to bring the Scandinavian stories to us and spread the news of this radical new approach throughout the United States.

After returning from his Scandinavian visit, Bob had a chance to put his newfound knowledge to work. He became the Executive Director of the Omaha Association for Retarded Children, a chapter of the National Association. Later on he was President of the Connecticut state chapter for a year. For many years Bob attended the National Conventions of The Arc to sell his books and Martha’s pictures but mostly to talk with his friends and make new friends.

Bob & Issues of Criminal Justice

For many years, Bob devoted his major effort to Criminal Justice. The phone rang one day in 1991. It was Bob saying, “There is this little guy, Richard LaPointe, falsely accused of murder sitting in a courtroom in Hartford with no one sitting on his side of the aisle. The other side is packed with supporters of the prosecution. Come sit with me on his side.” I was only one of many called that day. True to Bob’s approach they became the Friends of Richard La Pointe — not supporters or advocates for, but friends. After more than 20 years in prison, and several appeals, within the past year, Bob finally was able to see Richard outside of a jail setting. What a glorious day.

Through the years Bob gathered friends to sit in the courtrooms of many falsely accused individuals with intellectual disabilities. He did not win all the cases, as far as the court’s decision was concerned, but he did win friends for those falsely accused.

The Arc realized the vital role that Bob played as a friend to the accused but also realized that more was needed, so it sought and received a grant from Bureau of Justice Assistance within the federal Department of Justice in order to found The Arc’s National Center on Criminal Justice and Disability®. This was the first national effort of its kind to bring together both victim issues and suspect/offender issues involving people with intellectual disabilities. Among a number of products and services, it provides training to law enforcement officers and others in the criminal justice system about people with intellectual disabilities. Recently, Leigh Ann Davis, the Director of the National Center, told me that without Bob’s initial vision and on-going support and guidance over the past twenty years, the Center may have never come to fruition. Furthermore, the Center’s information and referral service remains constantly busy. Through this service, NCCJD® is on the front-lines (much as Bob was) talking with involved individuals, their families, and their friends. With Bob no longer available, there is an even greater need for NCCJD to be a resource for these individuals and their families.

One can hardly talk about Bob without mentioning his longtime friend and wife, Martha. Her pictures enhanced his books and bring a constant reminder of Bob’s work and ideals to those of us, like me, who cherish her drawing hanging upon our wall. I am thrilled that Martha and The Arc are working together still to ensure that Bob’s legacy will not be forgotten and his work won’t stop.

The Arc announced at its just completed National Convention & International Forum in Orlando, Florida that it is establishing the Robert Perske Fund for Criminal Justice that will both honor Bob and assure the continuation of his vital work in the area of criminal justice. An anonymous donor has already contributed $10,000 toward the Fund. I urge your small or large contribution to this Fund as a way to honor Bob and to see that his work continues into the future. It has been an honor to be Bob and Martha’s friend, and I hope you will not only remember him, but remember his life’s work. Thank you.


[1] When The Arc began in 1948 it was originally known as the National Center for Retarded Citizens. It is now known as The Arc, and we have worked furiously to remove the use of the work retarded from anything other than purely medical use.

[2] Drs. Rosemary & Gunther Dybwad were founders of both The Arc as well as Inclusion International.

 

A Little Age, A Lot of Perspective

Jill Vaught, Executive Director of The Arc of Indiana Foundation 

It’s not very often that I’m happy to be reminded of how old I am. Today I was. You see, I grew up at a time when people with disabilities were considered disposable. If they hadn’t been sent to live in institutions, they lived in the community – but certainly weren’t included.

Today I received a photo. A student from the Erskine Green Training Institute (EGTI) had gone to one of the food courts at Ball State University for lunch. While there, he ran into friends from high school. He was invited to join their table and later go to a campus event with them.

What does this have to do with my age? I’m glad I’m old enough to remember when scenes like that weren’t possible. It helps me truly appreciate The Arc and how far we’ve come.

I have been lucky enough to work for The Arc in one way or another for 20 years. During that time I’ve seen some amazing things, but nothing has touched my heart quite like EGTI, which opened in Muncie, Indiana in January.

One of the many things that makes The Arc of Indiana such a special organization is that we still take our direction from self-advocates, families and our chapters. In 2012, it became very obvious that the lack of employment opportunities was an issue that had to be addressed.

The reason people with disabilities couldn’t find jobs wasn’t because they didn’t want to work. It wasn’t because our chapters weren’t working hard every day. It wasn’t that families weren’t trying. It always seemed to come back to training or, more specifically, the lack of good postsecondary training options.

In January, 2016, EGTI opened its doors to provide postsecondary vocational training opportunities in hospitality, food service and health care.   EGTI is housed inside a Courtyard by Marriott. Students reside in the hotel for 10 – 13 weeks as they attend classes, receive hands on training and gain experience though an internship. In addition to work skills, the students are improving their self-confidence, self-determination, soft work skills, problem solving skills, relational skills, and communication skills.

I’m happy to report that the program is working. Graduates are securing jobs with a competitive salary and benefits. We are doing exactly what we set out to do. But the thing that I enjoy the most is getting to know the students and watching them grow in skills and independence.

Zach, the young man from the story I mentioned above, told me this week that what he loves the most about being at EGTI is getting to enjoy the college environment and experience what going to college is like.   He has been taking classes at a local community college, but now he has access to a full college campus.

Leslie was one of our first students. About half way through the program she called her mother and told her to pack up her things because she wasn’t coming home. She learned that she was a “city girl” and she was moving to Indianapolis. She picked Indy in part because of her love of horror movies and Indianapolis hosts an annual horror film convention. She had a choice!

Aaron was working two jobs and still didn’t make enough money to be independent. He recently completed a program in Nutritional Services and is how working at Parkview Hospital full time with benefits. Because of his tremendous work ethic, he had hospitals fighting to hire him!

Larry, a dietetics graduate is working in the cafeteria of an elementary school. His mother told me at graduation that the first few weeks of the program she expected a call every day asking her to come and pick him up because nothing had ever worked before. She never got that call.

So far 22 students have completed the program and 17 are currently enrolled. We’ve had three graduation ceremonies and I haven’t been able to get through any of them without crying.

I can’t help but think of all of the friendships I missed out on because society wasn’t as accepting when I was growing up. I wish I could have gotten to know the Heidis and Jimmys and Sarahs that grew up in my hometown.

So yes, I’m glad I’m old. I’m glad I understand just how important the work of The Arc is and where we would be without all of the incredible chapters of The Arc across this county.

If you’d like to get to know the amazing students attending EGTI, please visit our website at www.erskinegreeninstitute.org and follow us on Facebook, Twitter, and Instagram @ErskineGreen

From 1959 to Today, Workers Still Need Paid Leave

By Robin Shaffert, Senior Executive Officer, Individual and Family Support, The Arc 

KM_C554e-20161207133340Among my grandmother’s papers was a letter dated May 28, 1959, from her employer, the New York retailer Franklin Simon, informing her, “Due to the fact that your illness will be prolonged over a period of time, we have been forced to replace you at this time.”

“However,” the letter continues, “[W]e wish to let you know that your record with us has been good, and we will be happy to consider you for an opening when you are able to return to work again.” She received “two weeks vacation salary which is due you,” but no sick leave or notice pay.

I was shocked. My grandmother had been fired because she needed surgery. When I found the letter a few years ago, the Family and Medical Leave Act had been the law for almost 20 years. Large employers like Franklin Simon couldn’t just fire employees when they needed time off for medical care. Or, at least, they couldn’t fire many of their full time employees.

Born in Austria-Hungary in 1900, my grandmother came to this country with her husband and her son as a refugee from the Nazis in 1940. A housewife in Vienna, here she worked first in a factory sewing clothes for dolls and later as a saleswoman at Franklin Simon.

By 1959, my grandmother was living alone in a fourth floor walk-up in the Bronx. Her husband had died, and her only son was married and had a new baby. I don’t know what financial hardship my grandmother endured when she lost her job. As far as I know, she never reentered the workforce.

Being able to take time off from work for my own medical care, after the birth of my children, and to care for my parents and my sister who had congenital heart disease is only one of the many ways that life has been easier for me than it was for my grandmother. But even today many people can still be fired if they need to take time off from work. And, for many unpaid leave is an empty promise because they simply can’t afford to take time off without pay.

At The Arc, our mission is to promote and protect the human rights of people with intellectual and developmental disabilities (I/DD) and actively support their full inclusion and participation in the community throughout their lifetimes. People with disabilities and their family members are an important part of the American workforce, and like all working people, they need access to paid leave. In my work, leading the Center for Future Planning®, I focus on the needs of the over 800,000 families in which adults with I/DD live with aging caregivers 60 and over. As these parents age and continue to support their sons and daughters to build full and independent lives, the need for flexibility can be critical.

We are joining the call for a robust federal paid family and medical leave law that adheres to a core set of principles. All employees (regardless of the size of the employer, length of service, and number of hours worked) must be able to access paid leave of meaningful length. People need to take leave for different reasons, and all employees should be able to access paid leave for the full range of personal medical and family caregiving needs established in the Family and Medical Leave Act. Families come in many shapes and sizes, so “family” must be inclusively defined. We must design a program that is affordable and cost-effective for workers, employers, and the government. Finally, we must ensure that people who take the leave do not experience adverse employment consequences as a result.

In the disability community, we know how important it is to celebrate one another in good times and to provide support in harder times. An inclusive and robust paid family leave program is an important building block of that support.

The Arc’s Responds To Chicago Tribune Series on Deaths, Abuse and Neglect in Illinois: “A Wakeup Call for Investment, Reform, and Better Wages”

The Chicago Tribune has recently released news articles detailing the systemic problems in Illinois that have led to cases of death, abuse, and neglect of people with intellectual and developmental disabilities. The Arc of the United States released the following statement on what the news series has uncovered.

“The Chicago Tribune series on deaths, abuse, and neglect of people with intellectual and developmental disabilities (I/DD) is startling and should serve as a wakeup call to the state to invest in the community system, reform its oversight process, and pay workers in this field a wage that reflects the life and death work they take on day in and day out.

“Clearly, the oversight system in Illinois has been broken for a long time, and the public outrage generated by this news series is warranted. What we can hope is that the incidents of abuse and neglect highlighted in this piece will help galvanize positive change not only in Illinois but across the country.

“When we have a system that provides wages that don’t reflect the importance of the work carried out, and training that doesn’t prepare people for the situations they will face, we are putting lives at risk. There are many facets to this problem, and The Arc will continue to work with families, organizations serving people with disabilities, government agencies, and other stakeholders to end horrific mistreatment of people with I/DD.

“Illinois is the state with the highest rates of institutionalization based on population. Without proper support for the programs, services, and staff that are so vital to the health and wellbeing of individuals with I/DD in the community, we can’t fix existing problems. This system, like many across the country, is flawed and we need real investment in the programs that individuals with I/DD rely on to move forward. System change must be made a priority so we can focus on what really matters – quality of life for people with disabilities,” said Peter Berns, CEO, The Arc.

The Arc of Illinois is a leading advocate for reforms in the state. Read Executive Director Tony Paulauski’s letter to the editor and the President of the chapter’s board of directors Terri Devine’s letter to the editor.

Meet the Hometown Host: Baymont and The Arc Reimagine Breakfast Furthering Opportunities for People with Disabilities

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PARSIPPANY, N.J. (December 1, 2016) – Baymont Inn & Suites unites with The Arc – a leading national advocate for people with intellectual and developmental disabilities (I/DD) – to open more doors in hospitality for individuals with I/DD, including autism and Down syndrome, as the hotel brand redefines breakfast with its new Hometown Host role.

Baymont Inn & Suites is redefining traditional hotel breakfast with its new Hometown Host role. Elizabeth, pictured above, is a Hometown Host at the Baymont in Newark, Del.

Baymont Inn & Suites is redefining traditional hotel breakfast with its new Hometown Host role. Elizabeth, pictured above, is a Hometown Host at the Baymont in Newark, Del.

Unveiled just before International Day of Persons with Disabilities on December 3, 2016, Baymont’s new Hometown Host role is a symbol of the brand’s emphasis on neighborly service and dedication to community, ensuring guests are feeling welcome and food is abundant throughout daily breakfast service. Baymont franchisees recruiting for a Hometown Host are encouraged to take advantage of The Arc’s resources in helping connect them with passionate local job candidates within their neighborhoods.

In addition to serving as a service champion and breakfast attendant, Hometown Hosts from Baymont hotels across the country are invited to participate in a voluntary advisory council, supported by The Arc, to help improve the brand’s breakfast offerings. The council will meet regularly to share insights and best practices for perfecting the brand’s free breakfast for guests.

“No matter what’s on the table, we believe breakfast is best served and savored with good company. That’s where our Hometown Hosts come in: they’re the first person greeting our guests in the morning and ensuring they have a great start to the day,” said Greg Giordano, Baymont Inn & Suites brand vice president. “Our collaboration with The Arc not only connects our franchisees to a resource attracting associates who embody our signature culture of neighborly hospitality for guests, but also demonstrates to all communities of diversity they have an advocate in Baymont.”

Building Opportunities One Breakfast at a Time
Unemployment among people living with disabilities is a critical issue. According to the Bureau of Labor Statistics, unemployment rate for individuals with disabilities is higher than 11%, approximately double the nation’s average. Of those employed, only about 40% hold regular jobs in the community rather than within sheltered workshops or other restricted settings. The Arc serves people with intellectual and developmental disabilities, a population in which unemployment is much higher – 85% of families report that their adult family members with I/DD are not employed.

“Our collaboration with Baymont proactively creates opportunities for both those with disabilities and hoteliers to make positive and transformative contributions within their communities,” said Jonathan Lucus, director, The Arc@Work. “Individuals with intellectual and developmental disabilities are not only capable of excelling on the job, but have experience, ideas and perspectives to continually enrich businesses. We can’t wait to see how our relationship with Baymont shakes up the makeup of hotel breakfast.”

The Arc@Work is leading the way in developing innovative workforce solutions for the government and private sector by connecting employers with talented employees with intellectual and developmental disabilities and supporting the recruitment, on-boarding, and retention process. The goal is to connect organizations with people and services that increase the diversity, productivity, and quality of their overall workforce.

Hotels including the Baymont Inn & Suites Augusta Riverwatch in Georgia have already experienced positive results employing individuals with disabilities including longer tenure, strong enthusiasm and an increase in guest engagement. Baymont hotels in Florida, Pennsylvania, and Michigan, one of the states with the lowest workforce participation rates for people with disabilities, have already pledged to work with The Arc as part of this initiative.

“We’ve been employing individuals with disabilities for more than 10 years at our hotel, and it’s the best business decision I’ve ever made,” said Kanta Kondur, owner of Baymont Inn & Suites August Riverwatch. “Our associates, like William and Robert, quickly become part of the Baymont family and show an extraordinary dedication to the hotel and our guests. I have no doubt other Baymont owners will find similar success working with The Arc.”

About 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 more than 650 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.

About Baymont Inn & Suites
Part of Wyndham Hotel Group, the Baymont Inn & Suites® hotel brand is a chain of more than 400 midscale hotels located throughout the United States and in Mexico that takes pride in neighborly hospitality grounded in the ability to connect with every guest. It’s all about warm, inviting service, topped with freshly baked cookies and a friendly smile. Many locations feature free Wi-Fi, continental breakfast at the Baymont Breakfast Corner®, swimming pools, fitness centers, airport shuttle service and the opportunity to earn and redeem points through Wyndham Rewards®, the brand’s guest loyalty program. Travelers can join the free program at www.wyndhamrewards.com.   Each Baymont Inn & Suites hotel is independently owned and operated under a franchise agreement with Baymont Franchise Systems, Inc. (BFS), or its affiliate. BFS is a subsidiary of Wyndham Hotel Group, LLC and parent company Wyndham Worldwide Corporation (NYSE: WYN). Reservations and information are available by visiting www.baymontinns.com.

Wyndham Hotel Group is the world’s largest hotel company based on number of hotels, encompassing nearly 8,000 hotels and approximately 689,800 rooms in 75 countries. Additional information is available at www.wyndhamworldwide.com. For more information about hotel franchising opportunities visit www.whgdevelopment.com.

CONTACT:
Gabriella Chiera
Wyndham Hotel Group
(973) 753 – 6689
Gabriella.chiera@wyn.com

Kristen McKiernan
The Arc
(202) 534-3712
mckiernan@thearc.org