children with special needs

It is crucial for parents of children with special needs to plan out the health care and financial options when it comes to their child’s transition to adulthood.

Debora Thivierge, founder and executive director of the ELIJA School and the ELIJA Foundation, and Melissa Negrin-Wiener of Cona Elder Law, PLLC spoke on this topic during a webinar titled “Plan for Your Child with Special Needs” hosted on March 3 by Schneps Media, the parent company of the Long Island Press.

“We are not a society that prepares enough for this process,” said Thivierge, “This could be done much sooner to avoid the enormous burden that families have. Where are [the children] going to be living? Where are the children going to be when we’re no longer here to support them?”

Thivierge’s ELIJA Foundation is a not-for-profit organization that serves parents, educators, professionals and caregivers of children with Autism Spectrum Disorder on Long Island. The focus of the foundation is to provide the community with educational opportunities that can help prepare families to plan for the future of their children with Autism.

Thivierge discussed that as parents and guardians get older, it may become worrisome to think about the future care of their child. “Parents get older, parents may no longer be available to do this level of advocacy; they may have their own personal health issues, and it’s super stressful,” said Thivierge, “That jump from going to the school bus, picking and dropping off your child, to that of no longer being a benefit, is frightening”.

Wiener highlighted that these worries can be alleviated by some simple planning in order for parents to ensure that their child with special needs will have all of their future financial and health care concerns taken care of. 

‘When people are turning 18, they need to have the power of attorney, a health care proxy and a living will,” said Wiener.

Having been a partner of Cona Elder Law for 11 years, Wiener has expertise in guiding families who have children with special needs by assisting them in accessing government benefits, handling their estate planning and Special Needs Trusts.

Wiener stressed the importance of a health care proxy, which allows a child to grant a parent access to continue making healthcare decisions once the child reaches the age of 18. Another important step to take is issuing the power of attorney, which is a document put into place that allows a parent to handle financial decisions of an individual who can’t handle it themselves. A living will is another significant option for children who have grandparents or other relatives with assets that can be left for the child.

Wiener also went into detail about the types of Special Needs Trusts that can be set up for a child. These trusts being: a First Party Trust, which sets up an account with the child’s money, a Third Party Trust, which sets up an account for the child with the parent’s money, and a Pooled Trust, which protects the child’s excess income and/or assets through a not-for-profit trustee.

“These documents are really important for everybody,” said Wiener, who noted how surprised she was at the amount of parents with special needs children who were unaware of these options.

This webinar was sponsored by Cona Elder Law and The ELIJA school.

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