While Newtown sisters Katie and Jamie Rowan are happy hanging out and playing games or taking an occasional romp on the family trampoline with big sister Amanda, the younger siblings know how their family depends on the sensitive and expert support they receive from state Department of Developmental Services (DDS) professionals who are expert at handling behaviors related Amanda’s autism spectrum disorder.

So when Katie, who attends Reed Intermediate School, learned that proposed state budget cuts could greatly reduce or eliminate Amanda’s DDS services, she became one of the younger and more vibrant voices arguing against those possible cuts.

Katie was instrumental in helping present a petition to Governor Dannel Malloy and the Legislature’s Appropriations Committee requesting lawmakers rescind any such service cuts for families and individuals like Amanda across Connecticut. She even took to the microphone to make her concerns known during a Capitol press conference back in early March hosted by The Arc Connecticut, an organization protecting the rights of people with intellectual and developmental disabilities.

“My sister gets help through a voluntary services program,” Katie said during a visit to The Bee. “Our help comes to the house to take her out to the store, or out to eat.”

Amanda’s DDS workers also are teaching her to begin writing letters using an erasable white board, how to read, and help create weekly activity charts so Amanda always knows what is coming up next during her support visits. Perhaps most importantly, the state DDS staffers are well trained at helping diffuse the occasional outburst or tantrum that could suddenly develop if Amanda becomes concerned or agitated.

“I’m worried if they stop coming to our house to take care of [Amanda], she may not be able to live with us anymore,” Katie said. “That would make us really sad.”

Mom Christine Rowan said the entire family is worrying about losing the critical home support component of Amanda’s service regiment, or having to deal with significant reductions in services.

“Two-thirds of the budget being looked at for elimination is specific to the services Amanda is getting,” Ms Rowan said. “We currently have an entire behavioral plan set up and maintained by our DDS workers.”

Self-Hiring Option

Another important component of the Rowans’ program is the ability for them to self-hire some of their support personnel, which helps them identify individuals who are particularly gifted at responding to Amanda’s particular needs, and who help the family tailor support that is sensitive to the entire family.

“We’ve been able to tap into resources and access people who know Amanda, including two special education teachers and two college students who previously interacted with Amanda when they were in the Newtown High School Best Buddies program together,” Ms Rowan said.

“They come with familiarity of the community, because most of them are from Newtown and the immediate area,” she added. “So far it’s been a great experience — it’s so much more than just a job for them when it comes to serving Amanda.”

“She really looks forward to them coming every week,” Katie said. “And when they’re here, and Amanda starts getting upset, they come right in and know how to help her right away.”

During the Arc of Connecticut community forum and press conference, Katie said she became aware of how her sister’s issues are shared by hundreds of others across the state, and she got an idea of how important these budget cuts could be to so many more families just like hers.

“It feels kind of good to know we’re not alone,” Katie said.

“We know and represent several other Newtown families who couldn’t get involved as much because they are struggling to maintain their own day-to-day supports for loved ones, even though they are already getting state services,” Ms Rowan said.

Katie said as a result of the close bond and activities she is able to successfully engage in with Amanda, she is now comfortable serving as a buddy to a fellow Reed student with special needs. Thanks to seeing how her sister receives modifications from Amanda’s DDS workers, Katie knows how to modify the rules to board games she is playing with her Reed buddy.

“She’s able to adapt these games to the skill levels and communications capabilities of her friends at school,” Ms Rowan said. “I’m so proud of her — she talks to them as a peer. She can see past their disability to identify with the individual.”

Katie’s Wisdom

Katie’s Capitol testimony indicates the Reed student apparently possesses wisdom beyond her years.

“This program doesn’t just help my sister Amanda, it also helps my family,” Katie said in her testimony. “Before we had the help, we couldn’t do any of the things we wanted to as a family. My mom could never come to any of my soccer games or school events. Also, my family loves to hike and snowshoe, but Amanda is not able to do those things. She can get tired, or off balance. When Amanda’s helpers are here, we can get to do some things we don’t normally do.”

While Katie’s long-term plans include aspirations to become a professional soccer player, she is already making room for the possibility of other pursuits if a sports career eludes her.

“I think I could work with kids sometime in the future,” she said.

The family is asking all Newtowners to consider signing an online petition supporting budget measures sustaining the types of DDS services they receive. Organizers are currently about 1,400 shy of their goal to deliver 15,000 signatures to lawmakers and the governor supporting existing budget allocations for these voluntary support services.

Sign the petition by visiting:

http://petitions.moveon.org/sign/tell-the-state-of-connecticu(Note: There is no ‘t’ on 'Connecticut' in the above web address.)