Current restraint policy in public education leaves many shaking their heads, or worse.

When Phyllis Musumeci found out that her autistic son Christian had been restrained at his public school, she was devastated. Previously an outgoing and friendly child, Christian's behavior had deteriorated rapidly over the last year.  He began to act out in school, showed signs of increasing anxiety and became socially withdrawn.  Phyllis brought Christian to a psychiatrist and sought out a number of other behavior specialists before one of them recommended that she request her child's restraint logs. The logs, which recorded 89 incidents of restraint over a two-year period, left her feeling helpless.

"When this happened to my son, I didn't know who to turn to,” she said.  “Everyone I turned to knew nothing and then I started turning to government agencies and advocacy groups, but still no one could help me."

Today, Christian is in a residential psychiatric home where, despite being diagnosed with post-traumatic stress disorder, he is improving.  Meanwhile Phyllis has not only become an outspoken advocate against restraining children, but also provides support to other parents who are suffering. 

Families Against Restraint
Her organization, Families Against Restraint, consists of a network of parents with children who have been restrained or secluded in educational settings.  Phyllis said she has been contacted by over 150 parents.  She helps them locate others in their area who have dealt with similar issues and coaches them on how to contact elected officials to push for restraint policies that don't allow for abuse.

A number of parents whose children with disabilities have suffered from restraint and seclusion in public schools have pursued a similar path, moving expeditiously from the role of victims of poor restraint policy to advocates against it.

Anna Moore, whose autistic son Isaiah was violently restrained by his behavioral analyst, said that finding an ally in Musumeci was a "blessing."  Moore now makes video collaborations highlighting incidents of restraint for online distribution.  She hopes that her work will allow other parents whose children have been restrained to know they are not alone.

Disability Rights Network
Advocates working on the recently introduced federal bill to prohibit restraint and seclusion in public schools point to parent-led advocacy groups as instrumental in the effort.  Jane Hudson, a senior attorney with the Disability Rights Network, said that "parents have helped by creating coalitions, telling their stories and keeping up the pressure."  Many parents frequently write and lobby their legislators, and the 18 grassroots organizations that form The Alliance for the Prevention of Restraint and Aversive Intervention (APRAIS) are thick with parent volunteers.

Though the current effort is primarily focused at pushing through the federal bill, parents have also been instrumental in creating reform at the state level.

Jean Bowden, whose autistic daughter Abbie was violently pinned to the ground on videotape in 1998, crusaded successfully for a law in Massachusetts to reduce restraint in public schools.  Musumeci served on a Florida advisory committee in June of 2007 that authored state-wide restraint policy guidelines.  Though she was satisfied with the committee's recommendation, she said that most of the guidelines were either loosened or not enforced when they trickled down to the individual school districts.

State Laws on Restraint Policy Vary
Currently, state laws regulating restraint and seclusion vary widely and are considered to be spotty and ineffective.  There are 19 states with no guidelines and only four that record data on restraint incidents, something that will be mandated in the federal bill.

Though Musumeci and others said they have small qualms with the scope of the federal bill, they all support the legislation, which Hudson believes is symbolic of an "attitudinal shift" in protection for children with disabilities. As grassroots organizations are expected to be instrumental in the passing of the bill, it's likely that the advocacy of parents will continue to be crucial in formulating restraint policy.