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Responding to the Rise in Autism
By Coleen Mahr
Mayor Fanwood
& Adrienne P. Robertiello
Autism Education
Children's Specialized Hospital

In New Jersey, approximately 1 in 49 children has been identified as having autism spectrum disorder (ASD), a lifelong disorder characterized by deficits in communication, impairments in social interaction, and limited or repetitive behaviors. Our state has the second highest prevalence rate in the nation.

According to Autism Speaks, an estimated 25,000 New Jersey residents are currently diagnosed. In order to support the needs and interests of these residents, municipal leaders must be aware of the issues that affect community life.

Diagnosis and Childhood Services Early diagnosis of children with ASD offers the most favorable outcomes because these children can receive therapeutic interventions as early as possible. Healthcare providers are dedicated to educating parents, pediatricians, early child care providers, and others working with young children to encourage early identification and provision of services.

To encourage early diagnosis and link families to appropriate local and state resources, a law was passed in 2007 requiring all New Jersey licensed health care providers to report any child diagnosed with autism to the New Jersey Autism Registry.

Under the Division of Family Health Services, the New Jersey Early Intervention System (NJEIS) implements a system of services for infants and toddlers, birth to age three, who have developmental delays or disabilities. Once a child turns three years of age, a Case Management Unit (jointly funded by Special Child Health Services (SCHS) and county freeholders) works with the affected children and their families to develop individualized service plans. These plans address medical, educational, developmental, social and economic needs.

Families in remote or underserved communities and those with language and cultural issues often have difficulty accessing providers to get an early diagnosis. Therefore, these children’s diagnoses may be delayed or missed. Municipalities can partner with local universities, hospitals or social organizations to help to educate and connect these families with appropriate resources and services.

The departments of Human Services, Children and Families, Community Affairs, Education, Department of Labor and Workforce Development and Health and Senior Services have provided a guide “Through the Maze: A Family Guide to Navigating the New Jersey Service Systems for Individuals with Autism Spectrum Disorders and other Developmental Disabilities” to assist families through the state’s system of programs and services.

Autism and Safety The number of requests for autism-related training for police, fire and rescue personnel have been increasing for many reasons. People with ASD are more likely to wander into unsafe areas; lack understanding of fire and other dangers; respond unpredictably or uncontrollably; and be attracted to water (often without ability to swim). First responders are finding it critical to learn more about the characteristics of this disorder.

To help, New Jersey has implemented the Developmental Disabilities Awareness Training for New Jersey First Responders, Public Law 2008, Chapter 80, which requires uniform training for all first responders. To supplement this internet-based learning module, organizations such as Children’s Specialized Hospital provide programs which feature strategies to protect this population.

To assist in locating individuals who have the tendency to wander, each New Jersey county has implemented a personal tracking system. Search and Rescue teams use this mobile tracking device to locate individuals who have wandered unexpectedly.

The New Jersey Office of Homeland Security and Preparedness and the New Jersey Office of Emergency Management have established New Jersey Register Ready—a tool used to gather information to formulate evacuation plans, identify emergency shelter needs, and plan for appropriate notification or alert systems. Register Ready is particularly helpful for those who require assistance to meet their basic needs.

In addition to personal safety matters, there are law enforcement and criminal justice issues that are unique to individuals with ASD. It is important that officers have specific training related to identifying the characteristics of the disorder and appropriate methods of interaction. The Arc of New Jersey Criminal Justice Advocacy Program offers intervention, advocacy, case management, education, training, and personalized justice plans.

As part of municipal court operations, individuals with ASD may be involved as litigants, witnesses, victims, spectators, jurors, volunteers, and as participants in court programs. Several state and local judiciary systems have developed educational materials and tools to support positive interactions with these individuals.

Recreation Programming Many municipal recreation departments have been at a loss for how to include people with ASD and other developmental disabilities in programs and activities. Concerns often involve expenses, resources, equipment, and methods. Although recreation departments often offer separate programs, by law, the choice to participate in an integrated program must be provided to all. Residents with disabilities are entitled to receive reasonable accommodations in general recreation programs without incurring higher fees.

One way the Borough of Fanwood has been able to accomplish this is through their summer recreation program. No campers are turned away because of disability. Teachers serve in leadership positions, bringing specialized training and the ability to offer a broad range of activities. In addition, the borough ensures facilities and equipment are ADA compliant.

Training and resources are available to assist recreation providers in inclusive recreation programming. Municipalities are encouraged to share resources with organizations and surrounding communities. For example,  neighboring towns can share the services of a recreational therapist to help adapt programming. With this scenario, each town benefits from the expertise and the cost is distributed. Communities can also seek supports from local universities, particularly those with special education and therapeutic programs.

Aging Residents with ASD As children with autism age and transition out of the educational system, their needs change. They often require help with daily living skills, employment and housing. They also may need other community supports. In the best interest of the community, municipal leaders should support partnerships that provide or support experiential learning opportunities for this population. Organizations such as Autism Speaks, Autism New Jersey, and The Daniel Jordan Fiddle Foundation provide adult-related resources.

Municipal ADA Requirements Municipalities having 50 or more employees are required by law to designate at least one employee to coordinate ADA compliance and to investigate complaints regarding ADA violations. The name, office address, and telephone number of the ADA Coordinator must be publicized to residents on an ongoing basis, in alternate formats, so that it is accessible to all. The Department of Justice operates an ADA Information Line (800-514-0301) to provide information and publications to the public about ADA requirements.

Community Inclusion Individuals with ASD are a significant and real part of community life. Municipal leaders must take the lead to increase community awareness and inclusion, in order to reduce the stigma commonly associated with autism. Representatives can obtain information and resources from reputable New Jersey autism organizations including The Autism Program at Children’s Specialized Hospital.

Many public libraries are working to train staff members on how to interact and offer programs and resources for patrons with ASD. Children’s Specialized Hospital, the Borough of Fanwood, and Autism New Jersey partnered together to develop Libraries and Autism—We’re Connected. Used by many libraries nationwide. This award-winning resource (www.librariesandautism.org) provides information and practical tools for providing welcoming and supportive library environments.

With funding provided by Kohl’s Cares, Children’s Specialized Hospital has created a community-focused outreach program: Make Friends with Autism (www.makefriendswithautism.org). This resource provides free materials for businesses, recreation providers, neighbors and families to support the integration of people with autism into community life.

Other resources include Autism New Jersey, The Family Resource Network and POAC (Parents of Autistic Children) which provide educational, advocacy, recreational, and support services to individuals with ASD and their families.

Editorial from New Jersey Municipalities, Volume 89, Number 9, December 2012

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