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Disability

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By Nancy Burner, Esq.

Nancy Burner, Esq.

When planning for the differently abled, the use of supplemental needs trusts as part of your estate planning will ensure that you have provided protections for those with special needs and disabilities.

When considering your estate planning, it is important to consider any beneficiaries who may have special needs or disabilities. Receiving an outright inheritance could negatively affect these individuals, as oftentimes they are entitled to, and receive, need-based government benefits such as SSI, Medicaid and Group Housing, to name a few, which either supplement or fully cover the living and medical expenses of the individual.

Safeguarding these benefits by using supplemental needs trusts rather than an outright distribution can ensure that you can leave funds to a loved one who has special needs without the risk of interfering with their government benefits.

Supplemental needs trusts can be established as “first-party” or “third-party trusts.” This article highlights third-party supplemental needs trusts which are, simply stated, trusts funded with the assets of a third-party, anyone other than the differently abled individual.

To understand the difference, first-party trusts are funded with the assets or income of the differently abled person and are often used to safeguard benefits after the individual receives an inheritance or some other windfall. First-party supplemental needs trusts are also often used to protect money that was in the name of the individual at the onset of a disability. 

First-party supplemental needs trusts are available to persons under the age of 65, and thanks to recent legislation, can be created by the individual him or herself, a parent, guardian or through the court. Although a terrific planning tool, when possible it is preferable to address these planning needs ahead of time to ensure no interruption of benefits and a maximum preservation of assets. 

The first-party trust requires a payback provision which dictates that any monies that remain in the trust at the time of the individual’s death must be paid to the state in an amount equal to the medical assistance paid on behalf of the individual. 

Third-party supplemental needs trusts can either stand alone or be incorporated into your estate planning. These trusts can be created by anyone for the benefit of the disabled individual. They can be funded upon creation or can be prepared with the idea of funding at the time of the death of the creator.

The assets in the trust can be used to provide the individual with comforts they would otherwise not be able to afford. Because these trusts are set up with the fund of a third party, unlike the first-party supplemental needs trusts, they do not have a payback provision.

Upon the death of the original beneficiary of the trust, whatever assets remain in the trust can be distributed in accordance with the grantor’s wishes. By leaving assets in a supplemental needs trust, you would be able to provide for your loved one and ensure the continuation of imperative benefit on which he or she relies.

It is important to note that funds between a first-party trust and a third-party trust should never be co-mingled. Specifically, if monies which originated with the disabled individual go into a third-party trust, the protections afforded to third-party trusts (i.e., no payback provision) may extinguish and a payback could be required. 

Overall, supplemental needs trusts are invaluable for planning for those differently abled. The trusts can enhance the quality of life for the person and supplement the benefits he or she is already receiving.

Nancy Burner, Esq. practices elder law and estate planning from her East Setauket office.

Business employs other local disabled individuals

Pictured, Brittney (left) and Logan (right) Wohl, co-owners of Our Coffee with a Cause, with their mother Stacey Wohl (center), company founder/president. Photo from PRMG New York

The sister-and-brother team, Brittney, age 18, and Logan Wohl, age 16, of Northport, are the newly appointed co-owners of Our Coffee with a Cause Inc., a business that employs individuals with cognitive and developmental disabilities and funds local charities that support them. These siblings with autism have dedicated their time to helping other special-needs teens and adults by providing gainful employment opportunities in a supportive business setting.

Our Coffee with a Cause was founded in 2012 by Stacey Wohl, mother of Brittney and Logan, in response to the growing concern for special-needs individuals on Long Island who are aging out of schools to find job opportunities and a learning environment to acquire real-life skills. The employees package coffee, apply labels to the bags and coordinate shipments. Additional opportunities are available during Our Coffee with a Cause’s sales and informational events, during which employees work with an assistant to sell coffee and products using a custom-designed iPad app and interacting with customers.

A portion of the business proceeds benefit Our Own Place, a non-profit organization that Stacey Wohl founded to provide unique opportunities to special-needs children and their single parents. The organization’s ultimate mission is to open a weekend respite home for families of children with cognitive disabilities that will provide job training and socialization skills to its residents and will feature a café at which Our Coffee products will be brewed and sold.

Stacey Wohl and her mother and business partner, Susan Schultz, bring to the company a combined 50 years of business experience, along with the knowledge of addressing the unique needs of teens and adults with disabilities.

“Our Coffee with a Cause is dedicated to employing special-needs adults and showing that there is ability in disability,” says Stacey Wohl. “I am proud to name Brittney and Logan as the owners of this business, which provides careers to people with disabilities who may not otherwise have the opportunity.”

Although 53 million adults in the United States are living with a disability, as many as 70 percent of this working-age population are currently unemployed. For many, the current systems in place to support both young adults and their families disappear once the teen “ages out” of the education system, typically when they turn 21. In 2016, nearly 500,000 autistic persons will enter this category, in addition to adults with Down Syndrome and other cognitive conditions.

For more information, visit www.ourcoffeewithacause.net.

DogFest Walk ‘n Roll Long Island takes place on Sat.

Giavanna DeStefano, flanked by mom Cynthia, and Harry, a golden Labrador retriever, meet at a training session in February. Photo from John Bentzinger

They say dog is man’s best friend, and for one Northport family, the adage couldn’t be any truer.

The DeStefanos are on a quest to raise money this week for Canine Companions for Independence’s DogFest Walk ‘n Roll fundraising event. The nonprofit group matches assistance dogs to children and adults with disabilities at no cost to the individual.

It was through CCI that Northport 9-year-old Giavanna DeStefano, who is disabled, met Harry, a golden Labrador, in February. And life has changed significantly for the DeStefanos since he joined their family, according to Giavanna’s mom, Cynthia DeStefano.

“Harry cleans her room for her,” DeStefano said in a phone interview on Tuesday. “For me, I should say. She likes having him around. It’s like her little buddy that’s there for her.”

Harry is Giavanna’s friend and helper. The girl, who was born with a genetic anomaly called Trisomy 9 Mosaicism syndrome, is nonverbal and has global developmental delays and balances issues. For instance, if someone were to bump into her, she would fall and wouldn’t know to brace herself to cushion the fall. She can only speak about seven words.

The dog is trained in more than 40 commands, and can do things like open and close doors, turn light switches on and off, and pick up dropped items for Giavanna, according to John Bentzinger, public relations spokesperson for the group.

“But his main job will be to give her constant companionship, and he is a social bridge to her peers,” Bentzinger said in an email.

The dogs go through a rigorous training process. It costs about $45,000 to train each of the dogs, and it’s through the DogFest Walk ‘n Roll that CCI helps raise money to fund some of those expenses, Bentzinger said. Last year, the group raised more than $40,000, and this year, they are aiming for $60,000.

There’s a waiting list of about a year and a half for one dog. CCI owns 53 dogs in the northeast region, and the nonprofit owns more than 500 dogs nationally.

Harry is Giavanna’s companion. The two-year-old lab sleeps with her at night. When Giavanna returns home from school, Harry gets antsy awaiting her arrival, when he hears the bus. He picks up her stuffed animal toys around the room. He swims in the family’s shallow pool with her. He attends doctors appointments with her.

When his vest is on, Harry is ready to go to work, Giavanna’s mom said.

“He’s helpful for her,” she said. “He’s very funny.”

Through Harry, Giavanna is gaining a greater sense of responsibility. Giavanna helps her mother groom and feed him, take him for walks. Having Harry by Giavanna’s side makes her more approachable and gives her more attention, which she likes, her mom said.

“They see him, they see her, and it softens the whole ‘what’s wrong with this situation’ kind of thing,” she said.

Experiencing life with Harry motivated the DeStefanos to give back by fundraising for CCI, Cynthia DeStefano said.

“It’s a great organization,” she said. “Going through the program was amazing, and to see what these dogs can do, and how they adapt to each person’s needs, is an amazing thing. We’re blessed to have been able to do this.”

So far, they’ve raised $185 out of their $300 goal. To donate to the DeStefanos’ team, go to their fundraising page at www.tinyurl.com/nn3sn4y.

The fundraiser DogFest Walk ‘n Roll Long Island takes place this Saturday, Oct. 3, at Marjorie Post Park in Massapequa. For more information, visit www.cci.org.