Lauren was about 2-years-old when she was diagnosed with autism, and her mother, Darcie Crawford, was overwhelmed, not only by this news, but about how to proceed in finding the right specialists and services for her little girl.
"We didn't really know. Where do we go for this?" remembers the West Hartford mom. "What should we do and how do we get it? That really wasn't laid out for us."
Crawford's confusion is all too common, and that's why the Hospital for Special Care in New Britain is taking steps to become the first Patient Centered Medical Home in the state, a hub where families affected by autism can turn for answers to many questions.
"It's a concept," explains HSC's Chief Operating Officer Lynn Ricci. "It's a way of putting the patient and their family at the center of care and helping to navigate and coordinate the complex medical system, and specific to autism, it's very complex."
Imagine a chart where the family is at the center, and the "autism universe" – made up of medical, education and lifestyle specialists — surround the child like spokes in a bicycle wheel. The Bond Commission recently awarded the hospital a grant for $3.6 million to develop this chart as an electronic medical record, which would be kept in New Britain and could be accessed by parents through computer or smart phone. In early May, Gov. Dannel Malloy attended a briefing to hear about this addition to the autism initiative. This record is a requirement for the HSC to be certified nationally as one of only eight emerging Patient Centered Medical Home's for Autism Spectrum Disorders in the entire country.
"It's a way of putting the whole package together and making it meaningful for all of the players," says Ricci, the mother of a teen with autism.
The hospital opened its Autism Center in 2012 and has been flooded with families seeking help.
"The incidents of autism are going through the roof," says Ricci, noting that recent statistics from the CDC show 1 in 88 children are now on the spectrum. The bright facility houses diagnostic doctors, along with speech and occupational therapists. These professionals also go out into the community to raise awareness.
Crawford says nothing like this concept exists for families right now: "There really is a need out there for it. A lot of people that I know are worried about their children getting older, for example. Where will they live? What will they do?"
Lauren, now 9, is thriving through her work at the center. Her social skills have improved and she enjoys relationships with friends and her companion dog, Sara.
"Everything has been hard won but it's worth it," says Crawford, who is very proud of her daughter. "We just kept going."
This new system could help many kids "keep going" to achieve the highest quality of life possible with a neighborhood of support.
>>To see a PCMH chart, and HSC's Autism Center, tune into today's Fox CT Morning News. To contribute your own adventures in motherhood, or to read more from Fox CT reporter Sarah Cody and freelancer Teresa Pelham, go to http://www.ctnow.com/mommyminute.