Planning a Future For a Child with Down Syndrome

Friends and family of children with Down Syndrome often find social networks like Facebook to be a wonderful forum in which to share information, interesting experiences with their children and, ultimately, to express their doubts and sometimes, even their insecurities about a myriad of issues. Recently, when viewing one such page, we came across an interesting question posed by the mom of a toddler with Down Syndrome called Ryder. While Ryder’s mother had already set up savings account for the future University and car expenses of her older children, she wondered how to plan financially for Ryder’s future. She said that she was unsure why she had not yet started a savings fund/established a special needs trust for him, and asked advice from followers of her page as to what steps they had taken – the answers were as swift as they were helpful.
Most of Ryder’s followers expressed that it was vital to plan and set aside funds for the future for all the children in the household; just as his siblings would incur costs in getting to and from University or different training colleges and/or schools, there was no reason that Ryder wouldn’t like to attend a course, work full-time, or have a partner and live independently in the future, in which case funds set aside for a downpayment on a property, or for a vehicle to get to and from work, were crucial. Indeed, one parent mentioned that Ryder may just need the funds in the future to sign up for the Special Olympics! Most of all, parents were concerned about obtaining optimal care and housing conditions for their children. Some parents express concern that their children find accommodation in safe, drug-free areas; it was vital, they said, for their children to stay far away from those who might manipulate them or influence them to indulge in behaviors that may be detrimental to their physical and mental well-being; after all, addiction can be incredibly difficult to overcome, despite the wealth of rehabs offering luxury settings and cutting edge new treatments. The aim for parents and families of children with Down Syndrome is to ensure that their children achieve independence, a good education and the chance to interact socially in safe surroundings. Proper financial is crucial for all these goals to be attainable.Many parents lament the state of the current federal law, which stipulates that persons are not eligible for Supplemental Security Income (SSI) and/or Medicaid, if they possess over $2,000 in assets. This seriously impedes a parent’s freedom to adequately prepare for their child’s future, since they cannot, for instance, purchase a house in the name of a child with Down Syndrome for fear of loss of entitlement to government aid. Most parents said they chose one of the following options:

• Setting Up a Special Needs Trust: SSI is allocated for clothing, food and shelter. The reason a special needs trust does not wrest SSI from a child is that it allows for other expenses – for instance home appliances, technology, education, transport, travel, personal care items and medications which need to be paid out-of-pocket. Most parents said that they chose a family member (often a sibling or aunt/uncle of the child) to act as trustee.
• Special Provisions Regarding Inheritance: Some parents preferred to stipulate in their will that assets would be sold and shared between surviving children. One sibling would act as trustee for his sibling with Down Syndrome. The latter, it was hoped, for have sufficient funds to be able to either live independently or share her living space with roommates. The idea, said parents, was that since they perceived that their child might not go to college, the amount they would have spent could go instead to independent living. Another set of parents devoted the amount they would have spent on a car (their child did not drive) to renovating their home so that their child with Down Syndrome live in their own, independent space within the family home.
• Setting Up a Savings Account for the Child in the Parent’s Name and that of Another Family Member: Some parents prefer the freedom of a typical savings account, placed in their name and that of another family member – in case something should happen to them or their spouse, the other account holder could see to it that their child’s need were met.

Whichever way you deem right for your family, the importance of seeking professional financial advice (if possible from assessors specializing in special needs) cannot be stressed enough. This is because although options like the third one, mentioned above, can work perfectly well in many families, it is vital that a child’s future be protected against all possible contingencies. A special needs trust is still probably the most secure way to ensure your child has the independence and financial freedom that will enable them to be the best worker, student, roommate or partner they can be.

by Claire James