Syracuse autism clinic in limbo; north country left with limited options
Watertown Daily Times - 4/30/2019
April 30-- Apr. 30--SYRACUSE -- A state-funded Syracuse clinic that diagnoses autism and other developmental disabilities is under pressure to move due to a lease expiration in September, limiting its new patient intake.
The Margaret L. Williams Developmental Evaluation Center, which evaluates about 300 children a year from a 15-county area, does not have a new location yet. The center, as of last week, was not taking new patients to focus on completing evaluations of children on its seven-month waiting list before it moves. However, the center now said it will take in an undetermined number of new patients before its lease expires Sept. 30.
The center has known for nearly two years it had to leave its space in the former Sumner school owned by Peace Inc. The agency runs a Head Start pre-school program in the building and plans to expand it into the space occupied by the center.
Joe O'Hara, executive director of Peace, said his agency notified the center in May 2017 it would not be renewing the center's lease.
"We've given them ample time," Mr. O'Hara said.
The center, jointly funded by SUNY Upstate Medical University and the New York State Office for People with Development Disabilities, provides in-depth evaluations for children up to age 7 by an interdisciplinary team of medical doctors, psychologists, speech pathologists and other specialists who perform an extensive battery of tests. The evaluations usually are paid for by publicly funded early intervention programs.
The state agency said in a prepared statement that "closure of the center is not being considered at this time." Without the evaluations, children often cannot get the extra services they need in school such as speech and occupational therapy, according to Kathy L. Connor, program director of family support services at Northern Regional Center for Independent Living.
"For many of the children who have autism or autism spectrum delays, it includes speech," Ms. Connor said. "By not getting the intervention that you need early, your outcomes aren't quite as successful."
The center diagnosed Adriana Campany's 5-year-old twin daughters last year with autism.
Autism is a disorder which can lead to problems with communication, social interaction and behavior. Symptoms can vary in intensity for each child. Autism affects about 1 in 59 children.
Ms. Campany, who lives in St. Lawrence County, was concerned because the girls did not make eye contact, respond when called by name, had limited speech skills and behavior problems.
After getting the evaluation from the center, the district provided the girls applied behavioral analysis, a therapy that improves or changes certain behaviors, Ms. Campany said. The district also provided teacher's aides and other services.
"All these things would not have been accessible to us without the evaluation," Ms. Campany said.
This delay in service comes at a time when autism diagnoses in children are soaring.
The number of special education students statewide with autism grew from 6,752 in 2000 to 37,435 in 2016, a nearly six-fold increase, according to the state Education Department. In north country public schools, 17 percent enrolled are special education students in Jefferson County, 19 percent in Lewis County and 16 percent in St. Lawrence County.
"It's very concerning -- we don't have a lot of options in the north country for developmental evaluations," Ms. Connor said. "Primarily with autism, they are being assessed through [the center], so it'll create a void."
At the Northern Regional Center for Independent Living, Ms. Connor said of the roughly 500 children they serve, about 25 percent are on the autism spectrum.
The center has always been the organization's first referral suggestion for parents, but Ms. Connor said now they will refer them to a pediatrician. The next option is a referral to Davis Psychological Services and Consulting, with locations in Carthage and Boonville, which also does evaluations.
Davis Psychological Services and Consulting didn't respond to requests for comment on Monday.
Outside of the area, children can be evaluated at Upstate Golisano Children's Hospital, Syracuse, which has a 17-month waiting list. Other clinics will take parents as far as Rochester or Albany.
Ms. Connor said the community needs to look at more options, with seemingly never ending wait lists at most extensive evaluation facilities.
"It was a problem before this situation, and it's an even bigger problem now," Ms. Connor said.
Tribune News Service contributed to this report.
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