Thompson Center partners with national research initiative
Are you able to get the services that your child needs the most?
The Thompson Center is now surveying families in Missouri and across the nation about their ability to get services for children with autism spectrum disorders. The survey is being conducted in partnership with Kennedy Krieger Institute in Baltimore, Maryland, as part of the national autism registry called the Interactive Autism Network (IAN).
This new survey is being administered online and is entitled the Access to Care Questionnaire. Getting needed health care services and treatments is critical for families with a child who has an autism spectrum disorder, yet little is known about the challenges families face. Researchers want to learn:
- Are you able to get the medical and mental health care, speech and language therapy, or occupational therapy your child needs?
- How well do your providers coordinate care?
- How sensitive are your child's health care providers to your family's concerns and values?
- How satisfied are you with the care your child receives?
Parents with older children also will be asked about their providers’ ability to address the needs of their children as they become adults. These are some of the topics this new questionnaire addresses.
It is our hope that the information provided from the Access to Care Questionnaire will inform care providers and policy makers so that parents of children with autism spectrum disorders can get the services they need for their children.
Parents who live in Missouri and are already enrolled in IAN will automatically receive an electronic mail invitation to take the survey. A sample of IAN participants living in other states will also receive an electronic mail invitation.
Parents who are interested in enrolling in IAN can go to the following site to register: Interactive Autism Network (IAN) Project. Parents of children who are not yet participants in IAN will first need to complete the basic online surveys to register, and then will be sent the Access to Care Questionnaire. If you would like to speak to someone at the Thompson Center about this project, contact Mary Clark at 572-884-5711 or clarkmj@health.missouri.edu.
More information about the IAN registry is available at www.ianproject.org.
Eligibility requirements:
- Families must have a child who lives in the USA, is less than 18 year of age, and has been diagnosed with an autism spectrum disorder by a professional
- Time required: at least 1 hour
- Location: Any computer with internet access
- Monetary compensation: No
- Contact person: Mary Clark, RN; 573-882-5711, clarkmj@health.missouri.edu
- Research study directors: Janet Farmer, PhD, University of Missouri; Paul Law, MD, Kennedy Krieger Institute
