New study: Down syndrome not an extreme financial burden on families

Many people have misconceptions about what it means to raise a child with Down syndrome. The stereotypes are usually negative: it will take more time, more money, and will be much more difficult to raise a child with Down syndrome than it is to raise a typical child. A new study — the first of its kind — is shattering at least one of those stereotypes.

Led by Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital in Boston, the study found that while children with Down syndrome do, on average, face some extra medical expenses, families are not typically heavily burdened.

“I think many people will be surprised to learn that parents have few extra medical expenses when raising a child or adolescent with Down syndrome, since health insurance covers most of the costs,” Skotko said. The study, published on December 14th in the American Journal of Medical Genetics, Part A, found that the extra cost amounted to, on average, approximately $80 more a month compared to typical children. Skotko explained that he hopes this information will help families facing a new diagnosis of Down syndrome.

“After expectant couples receive a prenatal diagnosis of Down syndrome, many of them search online for information and find the lengthy list of medical conditions that might accompany their child,” Skotko explained. “This can leave them to wonder whether their families will be facing financial hardship; so we wanted to provide them with accurate data reflecting the current situation.”

The study examined insurance claims from 1999 through 2013, finding almost 5,200 children under the age of 18 with Down syndrome. They compared this information to nearly 21,000 children who do not have Down syndrome. During the first year, the cost difference was higher, at $1,907. But when the children became teenagers, it dropped to the lowest amount, at just $537 a year. Skotko believes that arming parents with this information can help them plan, saying, “Parents today have an array of financial planning and investment options, including special needs trusts, so I hope our findings can help families better prepare for their own financial futures.”

It’s worth pointing out that there aren’t just financial misconceptions about raising a child with Down syndrome. Many people assume that raising a child with special needs is extraordinarily stressful and creates massive hardship on families. But facts increasingly show that this isn’t the case. In addition to not being an incredible financial burden, almost 100% of parents of children with Down syndrome report that they love their children, with siblings saying that they feel they are better people because of their brothers or sisters with Down syndrome. Another study found that parents reported having a more positive outlook on life after having children with Down syndrome.