Special Education Series—

Local Groups Aiming To Support Special Ed Caregivers’ Social, Procedural Challenges

By John Voket

(This is the first of a planned series of reports on  Newtown’s Special Education Department.)

About one out of every 11 students in the Newtown school system is receiving services from the district’s Special Education Department. And in the latest school budget, taxpayer support of that department increased more than a half-million dollars.

With about 11 percent of the overall student population receiving direct services costing $6.5 million this year — totaling just under ten percent of the district’s overall budget — it may be a common assumption that every “spec-ed” student is receiving all the support needed to ensure every aspect of their academic, administrative, and social needs are met.

But in recent months, two grassroots organizations headed by local parents have sprung up to provide support its founders believe is lacking for Newtown’s special education students and their families.

One of those organizations, spearheaded by parent Suzanne Lang, is among the first in Connecticut aimed primarily at uniting district administrators, teachers, and related experts to better support and educate participating parents and caregivers about myriad legal and procedural intricacies related to special education.

The second group was formed by Linda Jones in memory of her late son, Tyler, a former district student diagnosed with autism who died in 2009. That group, Families United in Newtown (FUN), was conceived almost five years ago, as Ms Jones began networking with spec-ed parents who, like her, were trying to carve out small increments of time to maintain their disappearing social lives while providing the sometimes overwhelming level of care required by some of Newtown’s most intellectually and physically challenged children.

The first activity sponsored by FUN, which took place Halloween day at the Newtown Youth Academy, enlisted almost two dozen Newtown High School honors students, who supervised 15 children for about an hour while their parents enjoyed a catered lunch and independent socializing.

“When I started thinking about it, the idea was to create a recreational program for Newtown’s special kids,” Ms Jones said. With donations both she and her husband, Duane, requested in lieu of gifts for their individual 50th birthdays, a fund was established to help underwrite future FUN activities.

But that was just the beginning of what the Jones family conceived their organization could achieve on behalf of local spec-ed families. While caring for Tyler, who had needs that required extremely intensive support outside the school arena, Ms Jones admitted she and Duane “could absolutely never go anywhere together. It was very stressful on our relationship as a couple.”

And while she knew there were other support groups, virtually every one she knew of would only permit one parent to attend while the other, or a sitter in the case of single-parent households, stayed home to care for the child or children involved.

“We wanted this to be different. We envisioned a situation where everybody comes together, the kids split off to be watched over in a safe environment and the couple enjoy some social time together,” Ms Jones said. “We wanted to provide a place where everybody could get a break and have a little fun at no cost. Typically it costs so much to find a sitter capable and willing to watch their kids, it really becomes too much of a burden for them to even go out for a quick date.”

Since one of Tyler’s all-time favorite activities was walking, the Joneses also wanted the meetings to have a recreational component.

“I know in a lot of cases, as with Tyler, the more physical activity he had, the better his behavior was,” she said.

Involving The Honors Society

After Tyler’s untimely passing, Ms Jones decided to pitch the idea of forming such an initiative to the high school’s Honors Society.

“The long-term goal was to teach these honors students now about how to establish a similar program in their community, no matter where they ended up,” she said. “Something that could make a difference.”

Ms Jones hopes the group can eventually serve as a model for high school honors societies across the nation, “So kids everywhere can contribute to their community while providing critically needed respite for special families — which honors the original idea we first came up with almost five years ago.”

Following the success of its Halloween event, which drew a total of 68 participants and volunteers, FUN is planning a holiday-themed activity on December 12. Ms Jones eventually hopes to schedule seven to eight meetings annually, and if parents request, expanding the agenda to include expert speakers like occupational or music therapists, and others who can speak to specific challenges these parents may face.

Newtown PAC

In a different vein, Ms Lang sought to establish the Newtown PAC (Parents Advocating for their Children)  in the spring of 2009 in an effort to support parents whose children have learning differences such as dyslexia, dyscalculia, dysgraphia, auditory and visual processing disorders, nonverbal learning disabilities, ADD, and ADHD.

According to the group’s website, “These children often have average to above average intelligence yet have difficulty with reading, writing, spelling, math, recalling and/or organizing information which makes it extremely difficult for them to be successful in a typical educational setting.”

Based on a similar model that currently only exists in a handful of Connecticut school districts, Ms Lang’s goal is to provide a place for parents to access informative speakers, referrals to area workshops, online information, and most of all, providing a safe environment for those parents to speak to other parents who share similar spec-ed situations.

Ms Lang believes by sharing information and providing encouragement for special ed parents and caregivers, the local PAC can make a positive difference in the lives of families dealing with learning differences.

“I thing by helping parents become more effective advocates for their children, their children will have a better chance of learning to their ability rather than their disability,” Ms Lang said. 

In June, Ms Lang said Superintendent of Schools Janet Robinson visited with a full house of PAC supporters.

“Parents of children with an array of disabilities were present, many of whom work or have worked as educators in other districts,” Ms Lang reported. At a previous meeting, she said Dr Robinson informed the group that the New Haven-based Haskins Lab, one of the top reading disability research labs in the United States, was working with teachers at Middle Gate School. Dr Robinson updated the group, telling them that faculty members have since been working with Literacy How, a company that branched off of Haskins Lab, to provide educational support and training.

The June meeting also touched upon a number of other issues including a perceived “disconnect” between schools in the district; concerns about various special ed requirements, including the IEP (Individualized Education Program or Individualized Education Plan) process; bullying; and offered a general consensus of the parents about the quality of pupil services being received.

Its latest meeting December 1 provided an opportunity for parents to hear from Representative Chris Lyddy about the state mandated IEP task force. That group, consisting of teachers, state representatives, and parents, was put together to look at the Planning and Placement Team (PPT) and IEP processes.

“The group asked a lot of questions and much of the conversation revolved around accountability, transparency and providing resources to parents and teachers,” Ms Lang reported.

The Newtown PAC meets regularly, and provides additional resources through a website: pacfamilyresourcecenter@pbworks.com. Its next meeting, January 13, will be an open forum for parents to chat and network about concerns and issues they face.