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Tri-State Area parents say it's taking months, even years, to find therapy services for children with autism

Tri-State Area parents struggling to get medical care for kids with disabilities 03:39

NEW YORK -- Some Tri-State Area parents say it has been a battle getting their children with disabilities the medical care they need.

"It was at least six months," Sarah Marle said.

"I waited two years. Two years," Tracy-Ann Samuels said.

"Right now, I've officially been in this process for more than a year," Michelle Sinigallia said.

These three moms may not know each other, but as CBS2's Cory James reports, they all are dealing with a similar struggle -- getting their children who are on the spectrum therapy services, something that has taken months, and in some cases, years.

"I just kept thinking, I'm losing time, I'm losing time," Marle said.

"There's not one step that's just been, you know, easy, click, send, done," Sinigallia said.

"I'm educated. I have a master's degree in social work, and if it's difficult for me," Samuels said.

A challenging battle Samuels is fighting for her 14-year-old son, Trey. The high school freshman is musically gifted and was non-verbal.

Samuels says she's determined to prepare him for adulthood, but submitting paperwork to New York state's Office for People with Developmental Disabilities, or OPWDD, is a runaround game.

"We did get something back saying, 'Your documentation was received,'" Samuels said. "But I kept on calling. I was told that they can't find the application. They said to send it again to another website, which I did. I resent it. Call back again. 'We can't find your application.'"

Samuels says her son's application was found two months later, and now they are waiting on approval.

The agency is responsible for coordinating services through a network of approximately 500 nonprofits.

Sinigallia is also going through them for her 11-year-old, who is severely autistic.

"I have probably 150 sheets of paper that I've had to scan, and fax ... In this day and age, there is absolutely no excuse for, A, not to be fully digitized and to be streamlined," she said. "I think that we really need to understand and acknowledge that the population we're dealing with is very time sensitive."

CBS2 reached out to the OPWDD, who sent the following statement --

"OPWDD completes on average about 10,000 eligibility determinations every year. Typically, the biggest delays to processing eligibility determinations are caused by incomplete applications or missing information needed to determine eligibility for services. While the COVID-19 pandemic and staffing shortages in multiple fields caused some delays in the evaluation of people with developmental disabilities and the processing of applications for new OPWDD services, Governor Hochul has lifted the state hiring freeze that was implemented during the prior administration resulting in improvement in OPWDD's ability to process eligibility requests. OPWDD is also currently working on plans to further streamline the application process."

"Over the last two years, we've heard of an increase in wait times," said Lindsay Naeder, vice president of services and supports community impact for Autism Speaks.

Autism Speaks, a global organization helping families who have children on the spectrum, tells CBS2 they get between 5,000-7,000 calls every month from people needing help getting appointments. That's a 20% increase from when COVID began in March 2020.

"I'm definitely seeing contacts from suburban areas willing to go into New York," Naeder said. "But then that puts more stress on the major metro areas because there's a lot of people with autism that already live there."

Katherine Wiedermann, who is a board-certified behavioral analyst and special education consultant, says those services are few and far between now that many providers are leaving their careers to work from home for the same hourly rate.

"If these kids at 3 aren't getting the right treatment, then at 21, it's a whole new ballgame of issues," she said.

A game these moms are playing in hopes of getting early intervention so that their children can win.

"Time is of the essence for these kids and their development, so when you're told then, OK, now wait some more, it's paralyzing," Marle said.

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