On Saturday, March 5th, over 100 researchers, scientists, NY state advocates, professionals, service providers and parents gathered in NYC for a public policy roundtable on the challenges of enhancing early intervention services for toddlers with ASD. It is estimated that over 1300 children between 18 and 30 months living in NYC will be diagnosed with ASD, however, it’s likely that not all of them are receiving the services they need. When it is delivered, early intervention can lead to improvements in outcome (http://www.pbs.org/pov/bye/)
What then, are the barriers? In some cases, pediatricians may not be implementing screening tools to find toddlers with ASD. Also, parents don’t know what to do even if they are told that their child has screened positive. Interventions themselves may be inaccessible or nonexistent. How then can scientists who are developing and determining effectiveness of interventions work with pediatricians and service providers in their communities? How can state agencies and advocacy organizations help their efforts? What needs to be done to build upon or improve existing systems?
First, CAPACITY should be built to train specialists working with the children in both medical and non-medical settings to identify those with ASD early on. This includes working with nurses, day care and child care providers, and family members to learn to identify early signs of ASD. Its important when identifying and referring individuals with ASD to early intervention is to be mindful of CULTURE. In the ethnically diverse New York City, there are neighborhoods that speak dozens of languages. Instead of screening tools used in doctors offices, there is a need for alternative, observational tools that can be used in a variety of settings. Screening should be implemented in a family friendly way, and speakers and participants provided examples of ways they have been working with pediatricians and other professionals to make the most of a very short 18 month well child visit.
Once children are identified, service providers unanimously agreed that there should be CONSISTENCY and COORDINATION across teams of service providers, parents, and clinicians. At the core, better COMMUNICATION is needed. Communication always sounds like a good solution, but more specifically, communication with the parent in helping families find the help they need was highlighted as a need. Also, those who are working with the child on an intervention should have the opportunity to communicate with each other to develop the most effective and feasible treatment plan.
Parents with children with ASD also need COACHING to use time at home to deliver interventions. The internet is a valuable tool for helping parents promote the same skills that clinicians are using, and can do so in a variety of settings. This improves behavior in different CONTEXTS. Gary Mesibov, from UNC stated “rather than simply looking at efficacy, which is the scientific evaluation of whether a treatment works, psychologists should be examining the generality of effects across patients, therapists, culture, settings and especially the feasibility of delivering the treatments in real world settings”. Of importance, early intervention services should be CUSTOMIZED. The challenge is finding the right service or intervention for the right family at the right time in the right setting. Different children will respond to different therapies. What are the right ingredients to an effective intervention?
What does this all come down to? COST. Health economist Michael Ganz presented some theoretical models which showed that while initial cost of early intervention service would be high, the long term savings in cost of therapy over a lifetime, decrease in special education services and increase in lifetime earnings would make this initial investment worthwhile from a financial perspective as well. Currently, service eligibility and reimbursement is based on a diagnosis. If they were based on a risk of diagnosis from very early markers, the outcomes of children at risk for a number of disorders could be very different.
Those were the challenges. How about the solutions? Autism Speaks is CONTRIBUTING on a number of levels:
- Randomized control research on the efficacy on different early interventions which all use a parent-mediated component (http://www.autismspeaks.org/science/research/initiatives/toddler_treatment_network.php)
- Advocacy for insurance coverage of screening, diagnosis, treatments as well as support for future federal and state funding (www.autismvotes.com)
- Fostering training in different communities, including low-resource countries, to improve the availability of services both within and outside the United States (http://www.autismspeaks.org/science/research/initiatives/gaph.php)
- Resources and tools such as the Autism Video Glossary that help parents and professionals learn more about autism’s early signs and diagnostic features and the 100 Day Kit that assist families in getting the critical information they need in the first 100 days after a child’s is diagnosed with autism.
What else is needed? Let us know what you think – while we may not be able to answer every comment we do read them and appreciate your thoughts. More information on the roundtable can be found here: http://www.hunter.cuny.edu/autismroundtable/home