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Special Needs

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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.

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File Photo

By Desirée Keegan

Suffolk County police arrested an Amityville woman, who is an employee of United Cerebral Palsy, for falsely reporting an incident about a sexual offense between an employee and a resident at the group home Sept. 13.

An anonymous caller made an allegation to the New York State Justice Center for the Protection of People with Special Needs that a male employee of a United Cerebral Palsy residence, on Indian Head Road in Commack, inappropriately touched a female resident of the home. An investigation 4th Squad detectives determined the anonymous caller was another employee, Judy Campbell. Campbell, who had previously dated the male employee, admitted she lied about the allegation. A further investigation concluded no abuse occurred.

Campbell, 53, was arrested and charged with third-degree falsely reporting an incident. Campbell will be arraigned today at First District Court in Central Islip.

TOPSoccer program brings smiles to children with mental and physical disabilities

Children race across the soccer field grinning from ear to ear, eyes beaming as they learn skills and play games, and it’s all because of Rocky Point’s TOPSoccer league, which is a program for children with mental and physical disabilities.

“We’ve been in a couple of programs where it was hard for them to keep up with the other kids, and this one, working with the big kids is amazing,” said Samantha Netburn, whose young children Justin and Summer participate in the league. “They really support them.”

Rocky Point varsity soccer coaches Joe Camarda and Pete Costa have wanted to start the program for years now, but hadn’t had enough interest. The two also teach in the district, and after hearing some parents were looking for a program like this one, the coaches teamed up with Long Island Junior Soccer League to create the current team, which has approximately 10 kids along with varsity team members as helpers.

“For our first year I think it’s a successful program,” Camarda said. “I like to see the interaction between the varsity kids and the kids that are involved.”

Athletes from the boys’ and girls’ teams donate their time, teaching the kids how to dribble, juggle and play offense and defense. They also group up to do various exercises, and the volunteers encourage the kids and repeatedly tell the young athletes how great a job they’re doing. The team recently competed in its first tournament, where Rocky Point played two games against TOPS teams from other clubs in Commack. There were close to 300 members competing.

Netburn said it has really boosted her children’s self-esteem.

“It’s such a small community and everyone is so kind to each other,” she said. “My kids look forward to coming here.”

Michele Anzaldi, whose son Frankie is in the league, said she too hadn’t been able to find anything like it for her son.

“He absolutely loves soccer — we love our ‘soccer Saturday’ and Frankie looks at the weather all week long to make sure it’s going to hold up for soccer,” she said. “We’re so grateful that the coaches and kids are taking the time and it’s refreshing to see high school kids treating kids with disabilities so well and so nicely.”

Frankie said he’s having a lot of fun.

“I like to play soccer,” he said, after scoring a hat trick. “It’s awesome.”

For varsity players like Ryan Hembury, it’s also a great time.

“It’s a good thing to do for the community and a way to give back,” he said.

Registration is still open at www.rockypointsoccerclub.com, with two more weekends left in the spring before a trophy day on June 11. The program could return in the fall, and Netburn said she’s already spreading the word and getting more families involved.

“It’s nice to see everyone happy,” Camarda said. “It’s a reward you can’t pay for.”

Matthew W. Surico stars in a sensory-friendly performance of ‘My Christmas Elf: The Musical’ on Dec. 5 at 11 a.m. Photo by Kristen Digilio

By Melissa Arnold

For a child with special needs, the world can be overwhelming.

The things many of us take for granted — a trip to the mall, stopping for a coffee or going to a show — can be frightening and confusing to children with sensory processing issues.

A sensory processing disorder affects how someone experiences their surroundings. Their senses might be too dull, or heightened to the point of discomfort. The disorder, which impacts at least 1 in 20 children, according to the SPD Foundation, can vary widely from person to person. The foundation also reported that 80 percent of people with autism experience symptoms of SPD, though not all people with SPD are autistic.

One thing is shared among them, however: SPD can make life’s little pleasures nearly impossible, not just for those with the disorder, but for their families and caregivers as well.

This year, the Noel S. Ruiz Theatre at the CM Performing Arts Center in Oakdale has been hard at work adapting their children’s theater program for audiences with sensory difficulties.

Office manager Terry Brennan was inspired to bring sensory-friendly shows to the theater after reading about it in a magazine. Broadway theaters occasionally offer an adapted show, but CM is the only theater to do so regularly on Long Island.

Brennan, the former owner of the now-closed Airport Playhouse in Bohemia, is sympathetic to families and children with SPD. “It’s hard when you see a child in the theater who is extra vocal or likes to move around. It can be challenging for their families,” she explained. “We don’t want them to feel embarrassed. I thought, ‘Why don’t we do something, even if it’s just one performance per production?’”

Using brief instructional videos as a guide, Brennan educated the actors and theater staff on what makes sensory-friendly theater work.

“First, as people come in the door, there are sensory-friendly toys in the lobby, like Koosh balls and blocks, that the kids can play with while waiting for the show to start. They can bring the toys into the theater with them,” she said. “Families may also use cellphones or tablets with children who need distraction throughout the show, as long as the volume is turned off.

The key to an adapted production is to tone down elements of a show that may be disturbing to viewers with SPD. The house lights, which are normally off during a show, are kept on to prevent sudden darkness. Strobe lights, fog machines and most other special effects are not used. In addition, there is typically no intermission, as it can disrupt focus and peace for people with SPD. Most shows will run about one hour straight through.

The volume for sensory-friendly shows is lowered, and actors tend to avoid physical interaction with audience members unless directly approached first.

Beyond that, audience members are welcome to sing, dance, yell and move around to their hearts’ content. They can also meet cast members after the show if they’d like.

The theater held its first sensory-friendly performance, “Pinocchio Jr.,” in the summer of last year. At the time, there were just three families in the audience. But Brennan wasn’t measuring success by audience size, she said.

“To me, success is when a parent comes up to me and says, ‘Thank you, I didn’t feel like I had to leave or feel embarrassed at all.’ She could let her son stay and enjoy. It was wonderful.”

Today, sensory-friendly shows at the theater can bring in audiences of more than 100 people.

Kristen Digilio, director of the children’s shows and an occasional cast member, was working in the light booth during “Pinocchio.”

“Getting to see the kids waving, clapping and getting vocally involved was really exciting,” she recalled. “It was easy for them to get up and dance. We encourage audience participation in all of our shows, and this was special.”

She added that learning the basics of sensory-friendly theater was a breeze for the actors.

“It was really cool to learn about, because as a junior production, we were working with young actors,” she said. “There was even an actor in that show (‘Pinocchio’) with autism, so he was pumped for the changes and was really able to share why it made a difference.”

The theater is currently celebrating 38 years of children’s productions, and they plan to hold one sensory-friendly show per production from now on.

There are two upcoming sensory-friendly shows this season, including “My Christmas Elf” on Dec. 5 at 11 a.m. and “The Musical Adventures of Flat Stanley” on Feb. 27, 2016, at 11 a.m.

Sensory-friendly shows for “Schoolhouse Rock,” “Willy Wonka and the Chocolate Factory,” and “James and the Giant Peach,” in the spring and summer of 2016, will also be held. Dates for those shows will be announced soon.

The CM Performing Arts Center is located at 931 Montauk Highway in Oakdale. Admission for all children’s performances is $12. To learn more about the theater and its sensory-friendly productions, call 631-218-2810 or visit www.cmpac.com.

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Nikos Inslee photo from SCPD

Story update, Sept. 10, 10:15 a.m.: Police reported that Nikos Inslee has been found, unharmed.

A missing teenager with a mental illness might be suicidal and is in need of his medication, the Suffolk County Police Department reported on Wednesday afternoon.

Authorities issued an alert for the missing 15-year-old from Centereach, Nikos Inslee, who has bipolar disorder.

Police described Nikos as white, 5 feet 7 inches, and about 145 pounds. He has brown eyes and brown hair and was last seen wearing a red T-shirt with a Crooks Castle logo, sweatpants that are red, black and white, and black shoes.

Anyone with information about Inslee’s location is asked to call 911 or the 6th Squad detectives who are searching for him at 631-854-8652.