Early Access to Care Initiative: Chicago, IL Community Screening Event

December 10, 2013

Although the prevalence of Autism Spectrum Disorder (ASD) is rising, it still remains extremely difficult for parents to learn where to go and how to obtain diagnostic and therapeutic services. While parents can detect symptoms as early as 12 months of age, the average age of diagnosis is 4 ½ years and the average age of diagnosis among African American and Latino children is significantly higher than White children. Racial and ethnic disparities in both age of diagnosis and access to services remain a tremendous challenge for our communities of color. No matter economic status or native language, many parents become frustrated during this time period because of excruciatingly long wait-lists and other administrative hurdles.

In collaboration, Autism Speaks, the Illinois LEND (Leadership Education in Neurodevelopmental Disabilities) Program at the Institute on Disability and Human Development (IDHD), University of Illinois at Chicago (UIC), and other key community partners conducted outreach to underserved Latino families by addressing developmental  concerns; screened and referred families for additional testing; and provided guidance and support from culturally-competent, trained clinicians and service providers, free of cost.

Early Access to Care Initiative

The Early Access to Care Initiative aimed to lower the age of diagnosis of ASD and increase access to evidence-based early intervention services. Due to the disparity in ASD diagnosis in African American and Latino communities, this initiative partnered with local community care and service providers and held the event for families that would not have otherwise received such services.  Importantly, an initiative of this degree could not be conducted without the generous contribution of local service providers whom donated their time to ensure that families receive expert consultations. In 2013, the initial Early Access to Care Initiative: Community Screening Events took place in Chicago, IL and Los Angeles, CA. 

Chicago, IL Community Screenig Event

The goal of the Chicago Screening Event on Saturday, September 7, 2013, was to connect Latino families who had developmental concerns about their child, but had not yet accessed services with clinicians, service providers, and resources in a warm, inviting, and friendly environment. The screening event was not meant to replace a full diagnostic evaluation by their health care provider. Rather, it provided the first steps for parents concerned about their child's development, information for families to take back to their health care provider, and next-step tools for families.

The Illinois LEND partnered with key community organizations such as, Autism Speaks, Grupo SALTO (Sociedad de Autismo Latina Trabajando con Optimismo or Latino Autism Society Working with Optimism), and The Family Clinics at the UIC, Department of Disabilities and Human Development, as well as The Autism Program of Illinois (TAP). The full day screening event was held at the Hope Institute & Learning Academy at 1628 W. Washington Blvd., Chicago, IL.

The IL LEND Clinical Training Director, Ann T. Cutler, MD, provided her expertise and leadership as a Clinical Team Leader for the event. Clinical teams consisted of a licensed physician, psychologist, developmental therapist, speech language, or occupational therapist who was experienced in working with families of young children with ASD. Clinical teams were accompanied by a volunteer, as well as a Spanish-speaking translator, if the clinician was not fluent in Spanish. In total, 30 families received developmental screening and support at the event. Family satisfaction and follow-up surveys are currently being conducted.

A generous amount of current and former trainees and faculty of the IL LEND Program responded to the call to provide support for underserved Latino families.

• 8 current LEND trainees from developmental pediatrics, occupational therapy, social work, physical therapy, psychology, public health, and family;
• 4 former LEND trainees from applied behavioral analysis, family, psychology, and nursing; and
• 4 LEND faculty from speech and language, nursing, developmental pediatrics, and social work disciplines volunteered as translators, clinicians, and community liaisons.

The Autism Speaks website is http://www.autismspeaks.org/site-wide/chicago

The Illinois LEND Program is at http://illinoislend.org/