Proposed legislation intends to change perception of Down syndrome in Idaho

BOISE – The Idaho Down Syndrome Council hopes proposed legislation will change how Down syndrome is perceived in Idaho.

Sponsored by Sen. Fred Martin, R-Boise, the Down Syndrome Diagnosis Information Act would require health care professionals to give written information about Down syndrome, resources and support groups to parents receiving a prenatal or postnatal diagnosis of Down syndrome.

“Research shows that a parent’s experience of receiving a diagnosis of Down syndrome for their baby is very impactful,” said Mary Murray, president of the Idaho Down Syndrome Council. “Often, the memory of fear or hope stays with a parent for a lifetime.”

Murray, of Idaho Falls, is a parent of a child with Down syndrome, was one of many who spoke to the Senate Health and Welfare Committee. The committee unanimously sent the bill to the Senate floor with a do-pass recommendation Monday.

The bill comes after two years of work by the IDSC and a survey of about 70 families who experienced a Down syndrome diagnosis. According to the IDSC, the survey shows 68% of Idaho families had negative experiences when receiving Down syndrome diagnoses.

“Too many Idahoans have started their journey with Down syndrome feeling terrified and isolated because they were not given accurate information and resources at diagnosis,” Murray said. “We want to create a culture of optimism and support by providing information and assistance when a diagnosis is delivered.”

Multiple parents testified that when learning of a prenatal diagnosis of Down syndrome they were given information primarily about abortion, instead of other options. Many parents shared that they were confused about what their options were.

“No parent should have to hear, ‘I’m sorry,’ when expecting the joy of their life,” one mother said. “And nobody should be offered an abortion as the only way out.”

What is Down syndrome?

Down syndrome is a condition in which a person has an extra chromosome. Chromosomes are small “packages” of genes in the body. They determine how a baby’s body forms and functions as it grows during pregnancy and after birth. Typically, a baby is born with 46 chromosomes. Babies with Down syndrome have an extra copy of one of these chromosomes, chromosome 21. … This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby. …

Each person with Down syndrome has different talents and the ability to thrive.

Source: CDC

Patrick Mangan, a sophomore at Idaho Falls High School, has Down syndrome and also spoke before legislators. Patrick described how he has many friends and likes to ride his bike. Patrick said he aspires to graduate high school, go to college and make his own money someday.

“My family and friends hope my dreams come true because they know I can do it,” Patrick said.

It is stories like Patrick’s that Murray said can give people hope and they want people to see that with Down syndrome.

The IDSC has already drafted some literature and information that gives parents the full picture of Down syndrome and connects them to support. Murry told EastIdahoNews.com IDSC is supportive of the medical community and recognizes many providers do not have the correct information needed to give hope to those receiving a diagnosis.

“The ultimate goal of this bill is to change the perception of Down syndrome,” Murray told EastIdahoNews.com. “Where people are excited about people with Down syndrome, people accept them, see them for who they are. Everybody wants to be loved and give love in life, and people with Down syndrome are no different.”