Parents of children with Done syndrome are getting more resources, thanks to new state legislation.
Some families say when they received the news their child had Down syndrome it was provided in a negative way by physicians. Now those families hope that House Bill 552 will change that.
Melissa and her husband Josh Giles were celebrating with friends and family in the hospital 19 months ago when they had their bright eyed little boy Sawyer. Then the Giles received some news about their new baby boy.
“The nurses came in and asked if they could speak with us alone. And we were kind of nervous then because that is not a normal thing to do,” Melissa said.
The couple was told Sawyer has Down syndrome. They were given information about the genetic birth defect and informed about the group, Down Syndrome Association of Greater Cincinnati (DSAGC).
According to DSAGC's Health Outreach Coordinator, prenatal screening for Down syndrome happens as early as nine weeks into the pregnancy via a blood draw. However, studies in 2012 show most families are not sure what is being screened or, if a positive diagnosis occurs, what life with Down syndrome looks like. Health care professionals have admitted at times their training is inadequate on the prenatal testing and often fail to teach or provide resources to patients after a test result.
However, not all families have this experience when they are informed about their child having Down syndrome.
“In medical school there is a lack of information on treating individuals with Down syndrome, it's still such a negative stigma unfortunately in this day and age,” Kathleen Ferrara said.
Ferrara is a registered nurse and also has a daughter with Down syndrome. She now works as the health outreach coordinator at DSAGC and tries to educate physicians and new parents of children with Down syndrome of what life is like with a child with Down syndrome.
New state legislation is now helping her crusade.
“It is a really simple and straight forward bill but it really filled, what we felt was a gap, in this important area,” former Rep. Peter Stautberg (R-Cincinnati).
House Bill 552 otherwise known as the Pro-Information Law, makes it mandatory for physicians to have more information regarding diagnostic tests, treatment and therapy. It will also provide resources for families who find out their child has Down syndrome. HB 552 is considered to be the broadest legislation helping people with disabilities since Congress passed the Americans with Disabilities Act in 1990.
“Now that they are required to by law to do so, it's going to make a huge difference.” Families who are going to get a diagnoses are going to feel alone, they are going to feel nervous and scared for their child, but when you have that information given to you in a loving and supportive way and we will see if we can help you,” Ferrara said.
In other legislation, the ABLE Act, Achieving a Better Life Experience, was passed in 2014 and allows people with disabilities to set up savings accounts, with no tax on the earnings, similar to 529 college savings accounts, to cover housing, transportation and other expenses. The measure allows families to build a “financial cushion” without jeopardizing eligibility for Medicaid and Social Security benefits.
Before the House Bill passed, families of children with disabilities had little incentive to save for their future, because if they saved more than $2,000 for college, an apartment, or transportation to work, they risked losing critical benefits for their children, including medical and supplemental coverage.
The Ohio State Bill passed unanimously and will be enacted on March 20.
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