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  • Herb Thomas

Important Information About Fragile X Syndrome & Considerations in Planning a Special Needs Trust

Updated: Sep 24, 2020

Did you know that one-third of the individuals affected by fragile X syndrome also have autism, or autistic traits, such as the avoidance of eye contact? These challenges can make it difficult or impossible for an individual to care for himself or herself. While rare, fragile X syndrome is a genetic condition that causes intellectual disabilities like delayed development and sensory integration problems.

If you have a loved one with FXS, these are some of the most important things to consider when creating a Special Needs Trust.

Special Needs Trust

Deciphering Special Needs Trusts for Fragile X Syndrome

  1. Every case of fragile X syndrome is different, which means it’s vital to accurately assess the needs of your child on an individual basis.

  2. There are two types of Special Needs Trusts (SNTs), commonly referred to as first-party and third-party SNTs. The difference is determined by how the trust is funded.

  3. If the property that funds the Special Needs Trust belonged to someone other than the beneficiary, it’s considered a third-party Special Needs Trust. Most often the parents, grandparents, other relatives, or friends of a person with special needs will establish a third-party SNT to ensure the child is always provided for.

  4. A first-party SNT is often established by a person who has a disability, either through the inheritance of money that is not set up through a Special Needs Trust, or a court settlement.

Planning for the Future

It’s important to plan for a time when you’re no longer able to care for your loved one. Individuals who suffer from fragile X syndrome experience varying degrees of impairment and some are not able to manage their own finances, or perform basic upkeep of their home. If your child needs extra care, it's vital to include a plan in your Estate Planning to ensure that your child has access to the assistance they need.

A Special Needs Trust is one of the most secure ways to safeguard private and public benefits for your child with fragile X syndrome. Kairos Fiduciary Services can serve as the administrators of a Special Needs Trust to ensure that your child always has access to the care they need. Schedule a consultation online, or contact us at 510-749-8358.

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