An Open Letter in Support of the FASD Respect Act

FASD or Fetal Alcohol Spectrum Disorders is a direct result of alcohol exposure to a developing fetus while in utero.  These disorders are the most common form of developmental disability and birth defects in the Western world.  

The month of September is Fetal Alcohol Spectrum Disorder Awareness Month, with an official proclamation signed by Gov. Holcomb naming September 9th as Indiana’s Fetal Alcohol Spectrum Disorder Awareness Day.

The ninth of September happens to be my birthday.  While this is just one day, my loved one who has an FASD will live with the effects of prenatal alcohol exposure every day after that.  

I need your help. More so, my loved one needs your help.  

This is an open letter in support of the FASD Respect Act. This would bring federal funding to individual states for state/local organizations, non-for-profits in the medical and mental health capacity, and schools and establish a system of care for the lifelong needs of those living with the damaging effects of prenatal alcohol exposure. 

I write this as a teacher, an adoptive mom, and as someone whose family is directly impacted by a loved one diagnosed with Fetal Alcohol Spectrum Disorder. Senator Young, Senator Braun, and Representative Spartz  – Vote yes and pass the FASD Respect Act.   

Did you know that FASD affects 1 out of 20 school-age children and permanently damages areas of the brain, resulting in lifelong physical, behavioral, developmental, and intellectual disabilities? Due to this damage, those children have a significantly higher risk of developing secondary mental health disorders. Most of those affected will be undiagnosed or misdiagnosed.  

We know that this preventable developmental disability is two and a half times more prevalent than autism, yet the diagnosis alone is not tracked by special education in the state of Indiana. 

We also know that these children affected by this disability face higher rates of suspensions and expulsions and are more likely to have repeated law enforcement involvement and struggles with substance abuse and addiction.  We see this in our most vulnerable children  -85% of those diagnosed with an FASD are children living in foster care or adoptees.  

My family is intimately impacted by a loved one who has been diagnosed with an FASD. While it was known at birth of the drug and alcohol exposure, a formal diagnosis was refused to be given by seasoned and well-respected developmental pediatricians within Indiana. Other diagnostic tests were given, and our loved one was given three separate diagnoses – all with overlapping symptoms that are also present in an FASD. It was not until the age of five that our loved one finally received a full diagnostic review and official diagnosis of FASD, but only after traveling out of state to receive it.  

Even after they were given a formal diagnosis of Alcohol-Related Neurodevelopmental Disability (one of five diagnoses under the FASD umbrella), there was no specialist or providers in Indiana to reach out to, no evidence-based interventions, no specific therapies to target their lagging skills, and an Indiana Department of Education that will not recognize FASD as its own eligibility category for special education services.

The fact that providers in the medical and educational field have asked me what FASD is does not show a lack of concern but a lack of information. It shows a lack of awareness of the urgency that prenatal alcohol exposure is having on all systems of care within Indiana.

With vocal support from private citizens as well as organizations within the state of Indiana, the passing of the FASD Respect Act will give millions of dollars in funding to the CDC, National Institute of Alcohol Abuse and multiple grants to individual state and local programs for funding diagnostic tools, research, training medical and mental health professionals, developing projects that are used as intervention in schools, and funding “boots on the ground” to support a lifetime system of care from vocational to housing and mental health.

Are you part of an organization, business, or agency? Sign on to a letter of support!

Do you have a personal connection to FASD or simply want to voice your support as a private citizen? Contact your Indiana state senators and State Representative!

Loving someone who is permanently disabled due to prenatal alcohol exposure has become the most overwhelming and challenging journey I have ever been on.  Vocalizing support for and directly voting for the passing of the FASD Respect Act will fund education, awareness, and resources that our children and families like mine so desperately need.  

This legislation will be a lifeline for so many in Indiana. Please pass the FASD Respect Act.