PDD Systems Change Initiative

The Maine Developmental Disabilities Council is coordinating a Systems Change Initiative to address the need for increased capacity and effectiveness in public services and supports for individuals with autism and other pervasive developmental disorders (PDDs) across the age span. Individuals with PDDs may require a variety of services and supports during their lifetimes, depending upon the functional limitations associated with their disability. These services and supports may include early intervention services, special education, in-home supports, as well as community and employment support services. The System Change Initiative’s initial areas of focus are early identification, early intervention, and transition from school to adulthood. The Initiative will also address in-home support services, integrated planning, supports for employment and community involvement, etc. for children, adolescents and adults.

What is PDD? According to the DSM-IV, a Pervasive Developmental Disorder— (PDD) is characterized by marked impairments in several areas of development, including reciprocal social interaction skills, communication skills, and, for some types of PDDs, the presence of stereotyped behavior, interests, and activities.

The category of PDD includes the following diagnoses:

• Autistic Disorder
• Asperger’s Disorder
• Rett’s Disorder
• Childhood Disintegrative Disorder
• Pervasive developmental disorder—not otherwise specified (known as PDD-NOS)

At the national level, there has been a dramatic increase in prevelance of PDD (especially autism) is labeled an epidemic by the U.S. Centers for Disease Control.

This "epidemic" is reflected in Maine Special Education data for the last five years:

• Annual increase of 18%—this is the average increase each year in the number of children served in Maine schools under the category of autism.
• 100% increase in transition-aged youth—the number of youth ages 14-18 served in Maine schools under the autism category has doubled.
• 95% increase in number of students with autism—the number of students in the autism category in public schools in fall, 2007 is nearly double the number in that category in fall 2003.

National surveillance studies indicate comparable increases across the country, with a current prevalence rate of 1 in 150 births.

For more data about individuals with autism click here (pdf).

The Steering Committee: The PDD Systems Change Initiative is overseen by a Steering Committee, comprised of the Commissioners of Health and Human Services, Education, and Labor and the Governor’s Senior Policy Advisor for Education, and Health and Human Services.

The Advisory Committee: Input and feedback about initiative activities is received from a stakeholder advisory committee. Currently members of the advisory committee include representatives from: The Center for Community Inclusion and Disability Studies, Maine Parent Federation, Autism Society of Maine, Disability Rights Center, Parents, MADSEC, Spurwink, and Maine Transition Network.

The PDD Systems Change Initiative and the DHHS Office of LEAN management hosted four full-day meetings to focus on the process of identifying children with autism and other Pervasive Developmental Disorders (PDD) and the process of transitioning from youth programs to adult programs.

Below are copies of reports documenting the work and recommendations:

• PDD Early Identification Workgroup [word document, 1617Kb]
• PDD Transition Workgroup [pdf file, 1195Kb]

The Steering Committee met in mid-July to review the reports of the PDD Early Identification Workgroup and the PDD Transition Workgroup. The Steering Committee discussed recommendations and made decisions about next steps for the project. They have authorized the following work to continue moving the Initiative forward.

• Early Identification Screening Tools and Process — The Maine Developmental Disabilities Council (MDDC) will convene a stakeholder workgroup to recommend:
  • Screening tools
  • A referral process
  • Components that should be included in a diagnostic evaluation
  • Expertise needed to diagnose young children with a PDD
  • Resource needs to implement recommendations
• Public awareness — MDDC will compile and report on effective ways of sharing information with targeted groups in order to increase public awareness. Groups will include families, medical care providers, and child care providers.
• Transition — MDDC will collect and provide to the Steering Committee information regarding resource needs, potential policy changes, and other factors associated with implementing the recommendations of the PDD Transition Workgroup.
• Adult Services — At the request of the Steering Committee, MDDC will compile information about model programs, innovations and other efforts across the United States to provide effective services and supports for adults with PDD so that they may participate successfully in their community, post secondary education, and employment.