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

The Arc@Work Lands Investment in Employment Placement Services from The Walmart Foundation

Washington, DC – The Arc’s employment program, The Arc@Work, is pleased to announce it has received a $245,000, one-year grant from the Walmart Foundation. This funding will be dedicated toward developing innovative programs that place people with intellectual and developmental disabilities (I/DD) in competitive, integrated employment within their communities.

Current research indicates that 85% of people with I/DD are unemployed. The Arc is working with the public and private sectors to change this reality and offer an opportunity for people with I/DD to obtain meaningful career opportunities alongside people without disabilities on an unprecedented scale. New developments include a government directive to hire 100,000 employees with disabilities as well as updated regulations for federal contractors. As a result, the federal government and more than 45,000 contractors that include many Fortune 500 companies are now seeking employees with disabilities like never before. Unfortunately, this current demand cannot be matched by existing workforce systems that support the I/DD community. And without a strong, unified pipeline in place, this population will not benefit from these new guidelines as much as other disability groups.

“For far too long, people with intellectual and developmental disabilities have been relegated to the margins of the working world. Along with private initiatives, new government regulations promise to dramatically increase the number of people with disabilities placed alongside of people without disabilities in integrated, competitive environments. The support from the Walmart Foundation will allow The Arc to build a system that will transform the existing pool of talented candidates with disabilities into productive employees,” said Peter Berns, CEO of The Arc.

The Arc@Work is well-positioned to tackle this challenge, as it has the expertise and resources to harness the current social, political, and philanthropic energy behind workforce development efforts for people with I/DD. For this particular project, The Arc@Work will utilize existing infrastructure, as well as tap sixteen chapters of The Arc to create an increased number of corporate hiring opportunities. Ultimately this model will connect well-qualified job seekers with I/DD to local, regional, and national employers. The chapters that will be involved include UCP Seguin (IL); The Arc of the Midlands (SC); The Arc of Spokane; The Arc of Anchorage (AK); The Arc of Montgomery County (MD); The Arc of El Paso (TX); The Arc of Monroe County (NY); St. Louis Arc (MO); The Arc of Chester County (PA); Berkshire County Arc (MA); Star, Inc. (CT); The Arc of North Carolina (NC); The Arc Davidson County and Greater Nashville (TN); VersAbility (VA); The Arc of Bristol County (MA); and ADEC (IN), each of which will receive an average sub-grant award of $10,000.

Many of these chapters currently offer high-quality employment services for people with I/DD, such as job development, job coaching, as well as skill-building opportunities like preparation for interviews and resume development. Under their guidance, people with I/DD will receive support to secure competitive employment in their communities. Additionally, over the project period, the chapters of The Arc will strengthen their capacity to place people with I/DD into integrated, community-based employment by developing or deepening partnerships with local, regional, and national employers during the project period. Local, regional, or national employers will be able to improve their ability to successfully employ people with I/DD as a result of their partnership with The Arc.

“This grant is an example of the Walmart Foundation’s commitment to modeling one of our core values – Respect for the Individual, “said Carol May, Program Manager of the Walmart Foundation. “We desire to see communities empower all individuals to reach their full potential.”

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 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.

Managing Legal Settlements

By Neal A. Winston, CELA, Special Needs Alliance®

There are many factors to consider when a family member is seeking legal compensation for personal injuries, whether they result from medical malpractice, a car or workplace accident, or some other mishap. Given the supports that an individual with disabilities might need throughout life, even large sums can prove insufficient and must be carefully managed. Personal injury attorneys are often unaware of how a settlement can affect an individual’s eligibility for important public benefits, and families should ensure that a special needs attorney is consulted as early as possible during the course of their suit.

Liens and Set-Asides

Although personal injury awards are usually not taxable, there may be various liens against the settlement which must be satisfied before putting the money to other uses. If Medicaid, Medicare or, in some cases, private insurers have been paying for injury-related care that has been compensated as part of the settlement, they may need to be reimbursed.

In addition, if the individual is currently on Medicare, or is likely to become covered within 30 months, it may be necessary to create a Medicare Set-Aside (MSA) arrangement. While government guidelines are currently unclear, this can have implications for settlements of $25,000 or more, and legal counsel should be consulted.

Assessing Needs

A candid evaluation of the individual’s short- and long-term needs should guide the family in determining how to manage the remaining funds. Of major importance is whether or not means-tested public benefits such as Medicaid and Supplemental Security Income (SSI) will be required. If such programs will play a role, steps should be taken to ensure that settlement funds won’t disqualify the individual from such programs.

Depending on the size of the settlement and immediate needs, it may be possible to quickly “spend down” the award so that its effect on benefits is short-term. Home renovations to improve accessibility or purchase of a van are among many possibilities.

Another option for smaller settlements is placing up to $14,000 per year in an ABLE account for the individual. Funds held in such accounts are not considered when evaluating someone’s eligibility for Medicaid and SSI and can be used for a wide array of needs relating to the person’s disability. A person is limited to a single ABLE account, the disability must have begun before age 26, and the person must be receiving SSI or Social Security disability benefits, or have a doctor’s diagnosis of a disability meeting Social Security’s definition. If the account balance exceeds $100,000, SSI payments will be suspended, but Medicaid services continue. The maximum value of an ABLE account for Medicaid eligibility without SSI is the same as the maximum value of a 529 college savings account in the state in which the ABLE account is opened. Be aware that upon the beneficiary’s death, funds remaining in an ABLE account must be used to pay back Medicaid for any services rendered on the individual’s behalf after the ABLE account is created.

Larger settlements should be protected in a first party special needs trust (SNT) or a “pooled” SNT account.  While individual first party trusts are administered by trustees chosen by the beneficiary, pooled SNTs are administered by nonprofit organizations.

Like an ABLE account, a first party SNT must reimburse Medicaid upon the beneficiary’s death. In some states, part or all of a pooled trust’s remaining funds revert to the administering nonprofit. Any funds left must then reimburse Medicaid before being available to other beneficiaries.

Distributions

Distributions from a first-party SNT are regulated and must be for the exclusive benefit of the individual for whom the trust has been created. If the money is used for food or shelter, it will reduce SSI payments up to a certain limit. The beneficiary cannot have any individual control over distributions from the trust.

Consideration can be given to reimbursement or compensation from the settlement to third parties in certain circumstances and using the proper procedure without causing benefit program penalties. For instance, a family may have run up significant debt while caring for the injured person. They may have resorted to credit cards or borrowed from friends and relatives. If someone gave up a paying job to care for the individual, they may need to be paid for their services to compensate them for lost pay from their regular work. These are all expenses that might properly be handled with settlement money and are best handled prior to creating the SNT. Money should be held in an escrow account, and payment should be made directly to those to whom the money is owed. Benefit programs have different rules, but most involve a written agreement or understanding reached before the services were rendered for the reimbursement or compensation in order to avoid penalties. Funds passing through parents’ hands could also affect eligibility for benefits. If the individual is a minor or an adult with a guardian or conservator, court approval may be required to make any reimbursement.

Even if government benefits are not a consideration, the beneficiary may need assistance managing the award, in which case a settlement protection trust similar to an SNT, can be established. If initially drafted properly, it may be converted to an SNT at a later date, if necessary.

Investments and Award Management

Trustees have discretion to make a wide range of investments. These might include traditional investment accounts, government insured or guaranteed accounts, life insurance or even real estate, either to produce income or to provide a residence for the beneficiary. Generally, the accounts should only invest in moderate or lower risk entities, and the funds should never be loaned to the trustee or family members. Many states have regulations that control investments and distributions from SNTs and other trusts.

For larger awards, structured payments for a portion of the settlement may be considered. This requires the defendant or his/her insurer to purchase, at the time of the settlement, an irrevocable annuity for the beneficiary that guarantees specific periodic or lump sum payments over an agreed-to period of time. If the timed payments will be large enough to affect eligibility for benefits, arrangements should be made for them to be paid into an SNT and/or an ABLE account.

On the plus side, structured payments are exempt from income tax and have scheduled payouts that ensure that money will continue to be available for a stated period. On the other hand, with interest rates at historic lows, the beneficiary may be locked into long-term dependence on low-performing investments.

Seek Advice

The options for handling a legal settlement are many, with interrelated implications. Families should ensure that a special needs attorney is part of their legal team to ensure that eligibility for means-tested benefits is not jeopardized and other disability-related issues are addressed.

 

The Special Needs Alliance (SNA)® is a national non-profit comprised of attorneys who assist individuals with special needs, their families, and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families. A free manual, “Administering a Special Needs Trust: A Handbook for Trustees,” can be downloaded from the SNA website.

Zach’s Big Move Out: An Update on the Morris Family

zachLast year, The Arc published a blog by Ray Morris, founder of Dads 4 Special Kids and father to Zach and Tyler. The piece highlighted the enormous impact Zach, who has intellectual and developmental disabilities, has made on Ray and the Morris home. The Arc’s readers will be happy to learn that Zach is transitioning through another stage all young adults face: venturing out of their family home, and into the wider world.

Zach’s transition out of the family home began while he was participating in a group at his adult day program. During this time, he met John and Lisa, a couple that has dedicated their lives to caring for adults with disabilities and have been certified to run an Adult Developmental Home (ADH). John and Lisa offered Zach a place to live at their ADH. After many discussions, Zach and his family worked with John and Lisa to make his move and path toward adulthood smoother for everyone.

Like many young adults who have just moved out on their own, Zach is busy soaking up his surroundings and his “personality has flourished” according to his dad. Some of Zach’s new-found hobbies include attending Professional Arena Football games and exploring the Phoenix Home & Garden Show. Zach’s parents and brother, Tyler, are thrilled that Zach is becoming more independent and discovering a new chapter in his life.

The entire Morris family has been changed by Zach’s move out of the family home. Zach’s younger brother, Tyler, recently celebrated his wedding in France. This was a particularly special occasion, for it was also the first family vacation for the Morris’ in over a decade. Ray and Kelly are also enjoying everyday pleasures such as having their house all to themselves and watching their favorite T.V. show without any distractions. Yet, Ray is quick to admit Zach’s absence also highlights “how [their] lives were structured around [his] care” for 27 years. Realizing that they are no longer their son’s primary caregivers is “bittersweet.”

Like any parents, Ray and Kelly have navigated this experience with some anxiety and fear. Ray sometimes wonders if encouraging Zach to pursue his own life at the ADH home was the best decision. However, Ray remembers “It’s allowing and trusting that the decision to transition Zach to an ADH home will provide him a more fulfilled, independent life.” Kelly shares Ray’s concerns and has admitted that the “instinct to protect and hold on to him [has] battled with the reality of what was best for Zach.” All the worry is replaced with reassurance and peace when Ray and Kelly see Zach “laughing and having fun” with his new group of friends and care providers.

With Zach now settled into a routine, embracing all of the changes has become a bit easier. These days the Morris’ are looking toward the future, and The Arc wishes them the best!

Time to Check Your Health Insurance

If you are uninsured or looking for affordable health insurance, now is the time for you to look! During “open enrollment” you can purchase private health insurance through the marketplace in each state. Depending on your income, you may be eligible for assistance with your health insurance costs.

If you currently have insurance through the marketplace, you should look at your current plan and determine if it will continue to meet your needs, or select a better plan. If you do not take action, you will be automatically re-enrolled in your current plan or a similar plan. You should carefully review all health insurance notices and updates. Re-enrollment provides an important opportunity to report any changes to your income. If you income has increased, reporting changes to the marketplace may help you avoid paying future penalties.

2017 Open Enrollment
November 1, 2016
Open enrollment begins

December 15, 2016
Enroll before this date to have coverage January 1, 2017

January 31, 2017
Open enrollment ends

Why you should check your coverage:

  • Even if you like your health plan, new plans may be available and premiums or cost sharing may have changed since last year.
  • Even if your income has not changed, you could be eligible for more financial assistance.

If you have a disability or a health condition, pay attention to possible changes:

  • Are a broad range of health care providers included in the health plan’s network of providers?
  • Are there enough medical specialists in the network to meet your needs?
  • Are needed medications included in the plan’s list of covered drugs?
  • Is there adequate access to non-clinical, disability-specific services and supports?
  • Does the plan have service limits, such as caps on the number of office visits for therapy services?
  • Are mental health services covered to the same extent that other “physical” health benefits are covered?

Where to get help?

Health insurance can be complicated. If you or your family member needs assistance with understanding the options, healthcare.gov can help. This website has information about seeking assistance in local communities, explanations of health insurance terms, enrollment information and much more. There is also a 24-hour phone line for consumer assistance at 1-800-318-2596 to call for help.