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Community Corner

Planning for a Special Needs Child

Joe Parisi gives advice for parents raising children with special needs.

“If you took an inventory of families who have children or adults with special needs only 10 percent of the families have done any type of planning,” Joe Parisi, Special Needs Planner Representing Met Life, said on Monday during his presentation at the .

Parisi described four types of planning for special needs children: educational, medical, legal and financial. His presentation focused mainly on the legal and financial aspects of planning for the future of a special needs child, including naming a care provider, creating a will and the importance of a Special Needs Trust.

But, the main point over all was to create an awareness of the legal actions parents can take to support for their child while they are alive and even after they pass.

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“If you die without a will, the state decides who gets what and what amount,” Parisi said.

Even if the guardian does not invest in a trust for the special needs child, Parisi stresses the importance of at least creating a will for the child and family. If this is not done, the money is divided up between the family members by the state, a dangerous scenario for a special needs child in the state of New York.

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If a child has more than $2,000 in their name they can lose out on their benefits. This includes Medicaid and Supplemental Security Income (SSI). Parisi also informed the audience that when a child turns 18 and parents are no longer considered legal guardians, they are eligible for these benefits.

“Once the child is 18 years old, they don’t look at the parent’s income anymore. They look at the child’s assets and income. Once the child is 18 they could be eligible for benefits.”

If a child is not able to care for himself at age 18, Parisi advised parents to go to the and apply for legal guardianship. Once they obtain a 17-A Guardianship Application, parents must have the child evaluated to prove to the judge that he or she is not capable of making medical and financial decisions on their own.

To avoid risking the individual’s benefits being taken away, Parisi advised the audience to create a trust.

“The key point here is that the child is the beneficiary of the trust but the asset is not in the child’s name,” he said. “This is where you get to keep government benefits and you could leave a million dollars in here, the trustee takes title of it, manages it, invests it, and distributes it to the child, but not to take the place of Medicaid and SSI.”

While Medicaid assists the child with medical support and SSI benefits go toward clothing and shelter, the trust is used to add to the quality of life for the child as a supplemental income.

Parents can create a “Testamentary Trust,” which can be set up as a provision in the will, stating the assets for the child go directly into a trust for the special needs child. A “Living Trust” is another option for parents as they can add money and assets as they please or another relative can to leave money for the child in the trust’s name.

Aside from the will and trust, Parisi spoke about obtaining a caretaker for the child after the parents pass away. If a person accepts responsibility for the child after the death of the parents, it is the parent’s responsibility to inform the caretaker of all the necessary information about the child in a letter of intent.

“I like to call it an owner’s manual for a special needs child,” Parisi said. “This is where you get to put down everything in a central location.”

The document contains names, phone numbers and addresses of the child’s doctors are provided. Parents provide a medical history and other necessary information, even food preferences or daily routines. While not a legally enforceable document, the letter of intent provides the caretaker a full knowledge of the child and even the wishes of the parents for the child.

Parisi also informed the audience of other resources on planning for their special needs child.

“Planning for the Future: A Guide for Families and Friends of People with Developmental Disabilities” is a manual that contains information for families with special needs children. The guide is published by New York State Developmental Disabilities Planning Council and can be contacted at 1-800-395-3372 or via their website.

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