Emily Mulligan, Judith Ursitti and Amy Weinstock were the featured speakers during a roundtable discussion on autism advocacy at the Genesis Center last night. (Photo by Hope E. Tremblay)
WESTFIELD – A roundtable discussion about autism advocacy was held at Genesis Spiritual Life Center in Westfield last night, with a panel of three experts addressing concerns of about two dozen parents and local service providers.
Judith Ursitti, CPA, Autism Speaks’ director of state government affairs,
Amy Weinstock, director of the Autism Insurance Resource Center at the Shriver Center at UMass Medical Center, and Autism Speaks’ Autism Response Team Senior Coordinator Emily Mulligan were the featured speakers at the event, sponsored by Autism Speaks New England.
Autism Spectrum Disorders (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. Today, the prevalence of autism is one in 68 people – and one in 42 boys – under age 21 has ASD. The panel spoke mainly about autism insurance and Individual Education Plans IEP) and fielded questions from the audience during the intimate seminar.
Ursitti said in 2010 Massachusetts passed the Autism Insurance Law, known as ARICA,which required health insurers in Massachusetts to provide coverage for the diagnosis and treatment of Autism Spectrum Disorder. Some audience members said that their insurance companies were providing little to no coverage for autism services, including Applied Behavior Analysis (ABA).
Ursitti said self-funded insurance was likely the problem.
“Self-funded insurance is usually offered by large companies that are in several states,” said Ursitti. “They don’t buy insurance. They fund it out of a bank account.”
Because insurance is not purchased in one state, it is not state regulated but federally regulated. Currently, there are no federal insurance requirements to cover autism.
“That’s the goal,” said Ursitti, who travels the country to help families advocate for autism insurance coverage.
While changing a large company’s insurance coverage is a difficult task, Ursitti said it’s not impossible. She spoke specifically about Capital One and its lack of autism coverage. When a group of employees in need of ASD coverage banded together to advocate for the coverage, the company included autism coverage in its next policy.
Some participants in the discussion asked about the lack of ABA coverage with MassHealth. Weinstock said there are options.
“You can get premium coverage with MassHealth and get autism services,” she said, warning that it can be a lengthy process, but she and Ursitti know the tricks to fiding many “doors and windows” to get the needed autism coverage.
All three panelists said parents need to persevere while advocating for their children when it comes to services, insurance and IEPs.
“Take these things as they come, but never give up hope,” Weinstock said.
Both Weinstock and Ursitti have children on the spectrum, and both women began the fight for insurance coverage for their own children and realized the need for autism coverage across the country. Ursitti even moved her family from her native Texas to Massachusetts because the insurance and opportunities were better here.
“As challenging as it is, Massachusetts is so far ahead of just about every state,” she said.
When asked how to approach IEP meetings, the panelists said parents must be firm and educate themselves, but often, a professional autism advocate is the best way to get results, particularly in the early years when parents are still learning their way through the IEP process.
Weinstock said parents are the key to success.
“Don’t ever let anybody suggest you shouldn’t have the same dreams as families without these challenges,” she said.
For more information on ASD, insurance, IEPs and more, visit www.autismspeaks.org and www.disabilityinfo.org.
