By Nancy Kirsch
JOHNSTON – The Autism Project, an affiliate of Gateway Healthcare, recently received a $1.2 million grant from the Health Resources and Service Administration, according to a press statement from Gateway Healthcare, a Lifespan entity.
The main focus of the grant, said Joanne Quinn, executive director of The Autism Project, is to improve the outcomes of individuals with autism spectrum disorder or developmental disabilities in underserved communities. These grant funds, disbursed over three years, will enable the organization’s new initiative, Project IDENTIFY, to screen, evaluate and assess more children primarily for ASD and, to a lesser extent, for DD, and provide information about and resources for appropriate interventions, said Quinn.
Under the grant, the majority of children screened and assessed will be newborns through age 5. “We plan to … focus on training everyone who might come into contact with families with young children. We recommend screening [for ASD and DD] the minute there is a concern. … Early intervention is key,” said Quinn, who noted that the organization will also work with older individuals with ASD or DD.
The Autism Project will also collaborate with Lifespan’s Bradley Hospital on issues related to research, evaluation and outcomes. The grant requires the organization to demonstrate, by 2019, a 25 percent increase in referrals and screenings over 2016 numbers, said Quinn, who added that DOH has gathered most of this baseline data. “We’ll work … to then improve the number in underserved areas,” she said. According to the 2016 Rhode Island KIDS COUNT Factbook, in June 2015, 2,316 Rhode Island children, ages 3 to 21, with ASD received special education services.
Two family navigators have been hired and The Autism Project will hire four additional navigators to provide training, education and increased awareness about these issues to parents and organizations, said Quinn. Assigned to a geographic region, each navigator must have a child with ASD or DD, said Quinn. “It’s a richer experience for everyone if [the navigator] can really empathize with the family.”
The grant also supports telehealth initiatives, said Quinn, so training will be available face to face and online through live streaming and webinars, for example. That will ensure easy 24/7 access for professionals as well as parents, who often find it especially challenging to get babysitters for their children with ASD or DD. With ASD- and DD-resources more concentrated in Providence, Warwick and the northern part of the state, Quinn said, “we’ll be bringing the education to families … to link up with organizations and [learn] what they can do in the home [for their affected children]. We’ll meet families where they’re at. … We’re going to work on geographic and language and income and cultural barriers, and explain: ‘A referral is OK [and will get you] the help you need.’ ”
The organization will do so through several venues – the telehealth initiatives, family navigators and Rhode Island’s Medical Home Portal. That portal, which will launch in September, will contain information and resources pertaining to children and youth with special needs, including autism, said DOH spokesperson Joseph Wendelken.
DOH expects the portal will offer the following, Wendelken said,
Project IDENTIFY will collaborate with DOH to ensure the portal includes up-to-date, comprehensive information on ASD and DD resources in the state and ensure that the portal is easily accessible, said Quinn.
Noting that The Autism Project began as a grassroots organization now entering its 20th year, Quinn said, “It’s a feather in our cap to get this grant … and it will help us reach more families in Rhode Island.” Asked what success will look like after Project IDENTIFY has done its work, she said, “More families getting off waiting lists and having access to the care they need.” Quinn continued, “We could do so much more if Medicaid and [private] insurance companies were fattened up. We need to put more funding toward these programs that can help families who have insufficient resources to pay for them.”
Some 225 families participate in The Autism Project’s groups and summer camps and the organization serves more than 6,000 individuals through outreach, training, consultation and more, said Quinn.