The Autism Society Event and Education Recordings Archive

State systems evolve into silos. Departments receive funding that drive work. For example, the public health agency works on public health issues and the education agency works to educate children. Each agency has its own policies and procedures to accomplish its work. They each have different reporting requirements for their funders. This appears quite logical except when consumers or customers need to access both systems to meet their needs. From the customer’s point of view, to solve one problem, they might have to fill out repetitive forms, talk to multiple people and navigate multiple systems.

Maine has sponsored a program called the Pervasive Developmental Disorders (PDD) Systems Change Initiative, designed to analyze and simplify how individuals with autism spectrum disorders (ASD) interact with state systems to have their needs met. We have found that in order to have comprehensive services and supports, families must become experts of many public systems.

Although the PDD Systems Change Initiative has evaluated and begun to assist Maine agencies in making improvements in topic areas, such as early intervention, transition and healthcare, this poster session will focus on early identification. The Initiative identified that it takes an average of 32 months for diagnosis of a PDD to be made in Maine. We documented and charted the current process of identification. Then, we charted a simplified process, created an implementation plan and drafted a method for provision of that plan.  Since the initial study, Maine has implemented universal screening and is in the process of instituting a much simpler process of early identification.

This poster session will illustrate the method that the PDD Systems Change Initiative is using to improve fragmented systems.

Pervasive Developmental Disorders (PDD) Systems Change Initiative Structure

In 2008, the Maine Departments of Health and Human Services, Education and Labor responded to the increasing numbers of individuals with ASD by launching the PDD Systems Change Initiative. The Initiative exemplifies public and private collaboration. The Commissioners of the three state agencies and a representative of the Governor’s Office make up the Steering Committee. Lead staff in each agency coordinate and ensure the availability of staff and other resources necessary to accomplish project tasks.  The PDD Initiative Coordinator, housed at the Maine Developmental Disabilities Council (MDDC), organizes and facilitates all work to address the areas of focus. An Advisory Committee provides input on the work and recommendations to ensure the work is relevant and likely to achieve desired outcomes. 

The Advisory Committee includes the following representatives:

·         Autism Society of Maine (ASM)

·         Center for Community Inclusion and Disabilities Studies (CCIDS)

·         Disability Rights Center (DRC)

·         Parents of children with PDD

·         Individuals with PDD

·         Maine Parent Federation (MPF)

·         Maine Administrators of Services for Children with Disabilities (MADSEC)

·         Maine Transition Network (MTN)

·         Providers

In addition to incorporating recommendations from the Advisory Committee, the Initiative has formalized the opportunity for individual input. Today, more than 200 commenters, including adults with PDD, family members, physicians and other interested parties, provided ongoing input into the Initiative’s work and products. Their comments are documented and incorporated in all work products of the Initiative. The number of interested parties continues to grow as the Initiative proceeds and expands areas of work. Recognizing the urgency of identifying children early, the Steering Committee of the PDD Systems Change Initiative chose to make early identification one of its first priorities.

Using LEAN as a Method to Improve Systems

LEAN is a quality management system that looks at the work process through the eyes of the customer. What is the customer willing to pay you to do to produce the service/product he or she wants?  Or, in social services, what is the minimum number of steps for the customer to take in order to get the service that he or she needs? LEAN began in the manufacturing world and is increasingly being used by government and service organizations. The most popular LEAN tool is the Value Stream Map (VSM). This looks at a work process, defined with a beginning and an end, and identifies the current state (What is the process today? What is happening now?). Inefficiencies are identified (duplication, wait time, excess people motion, etc.) and a future state and implementation plan are developed. LEAN is based on the belief that the people who do the work are the ones who know the work process best and the ones who should develop the VSM.

The VSM is a fast way, often as little as three days, to bring all stakeholders together and visibly chart a process. Making the process visible not only helps the workers identify steps in the process that other systems require the families to take, it allows areas for improvement to be easily shown. The stakeholders then discuss the process and design improvements, which builds automatic buy-in of the new process.

Early Identification

The Plan

In May 2008, the DHHS Office of LEAN Management hosted four full-day meetings to focus on the process of identifying children with autism and other PDDs and find ways to improve that process. Families met the first day to share their stories and provide recommendations for improvement in the identification process. They described their experiences, which included long wait times, multiple steps, and inconclusive answers or no answers at all. The family stories documented that obtaining a diagnosis took an average of 31 months.

The PDD Early Identification Workgroup convened three full-day meetings to examine the current system, design an improved system, and create an implementation plan to accomplish needed changes and additions.  This Workgroup included broad representation from physicians, psychologists, developmental clinicians, families and advocates. The Workgroup also included representatives from Head Start, Child Developmental Services and various divisions of DHHS, including Child Behavioral Health Services (CBHS) and Children with Special Health Needs (CSHN).

The Workgroup's recommendations included that Maine state agencies:

• Ensure the use of standardized tools for universal screening,

• Design and implement an efficient referral for diagnostic evaluation by a qualified medical provider, and

• Ensure prompt referral to early intervention services.

Multi-Level Buy-in

The PDD Early Identification Report was then sent out to over 200 commenters, including individuals with PDD, their families, professionals, physicians and interested parties for comment. Over 26% commented on the report. All of the comments were favorable. A few comments are as follows: 

·         "The idea for an integrated system focusing on a child’s needs is an excellent one.  No more silos!” (Parent)

·         "I’m so psyched that Maine is finally addressing this!” (Diagnostician)

·         “You folks hit it out of the park, this is wonderful!” (Parent)

The Advisory Committee then met to review the report and public comments. They recommended to the Steering Committee that Maine implement one item at a time. The Steering Committee reviewed the work plan and approved the next phase of work -  to develop recommendations and determine cost and resource implications for:

·         Tools for universal screening,

·         Process for referral to a diagnostician,

·         Diagnostic evaluation components, and

·         Required credentials for qualified diagnosticians.

Once reviewed, the Steering Committee then approved implementation of universal screening and then, at a later date, defined and standardized professionals who would diagnose individuals with PDD.

Implementation

Universal Screening

In November 2008, a diverse team of medical professionals, including pediatricians, developmental specialists, general practitioners, nurse practitioners and professionals in the fields of social work and speech pathology met to address protocols for universal screening. This group made the following recommendations:

·         Screen all children using the Parents Evaluation Developmental Status (PEDS screening tool at their 9- and 18-month well-child visits, 

·         Screen all children using the Modified Checklist for Autism in Toddlers (M-CHAT) screening tool at their 18- and 24-month well-child visits, and 

·         Provide an automatic referral for services and further evaluation whenever a parent voices strong concern about his/her child’s developmental progress. 

The Workgroup also recommended that a minimum of four concurrent pilot projects lasting approximately six months should be established to test how best to implement these requirements on a statewide basis.  This would provide the basis for continuing support for medical offices to integrate the screening tools and schedule into their practices on a statewide basis.

After gaining approval from the Maine CDC, four pilots from diverse areas of the state were conducted between the months of June and November 2009. One practice reported that:

“As far as results, physician response to the screen has been overall positive. Personally, I have found it makes visits go smoother and streamlines the visit by allowing parents to visually organize their concerns. I recently had a very positive screen, which is in the midst of a workup at our local developmental pediatrician's office. The screen was definitely useful in bringing this particular patient to further care.”

Due to the success of the pilots, Maine’s Medicaid program, MaineCare, added the screening protocol to their well-child visit forms. Currently, the PDD Initiative and the Maine CDC are sponsoring trainings for physicians on why the new screening protocol is important and use of the new process.

Qualified Diagnosticians

The PDD Early Identification Workgroup identified that families were needing to subject their children to multiple and duplicative evaluations from the separate service systems in order to obtain appropriate early intervention. 

On May 8, 2009, the PDD Initiative hosted a meeting of professionals who are widely accepted as experts in diagnosing autism and other PDDs to address the following issues:

• Competencies a professional must have in order to diagnose a child with a PDD

• Components of a comprehensive evaluation necessary to confirm a diagnosis of autism or other PDD in children

This group developed recommendations to standardize who can diagnose children with autism. They asked to circulate those recommendations in order to obtain input from other medical and behavioral health professionals. 

One hundred and six letters were sent to potential diagnosticians for feedback on the new recommendations, with a rate of return over 56%. Thirty diagnosticians were confirmed across the state. In general, the comments were very positive. The two most common concerns were that diagnostic evaluation should be inter-disciplinary and the standardized tool should be specified.

After taking the diagnosticians’ comments into consideration, the Workgroup finalized the recommendations that:

Medical professionals with the necessary competencies to diagnose a child with a PDD are:

·                     Developmental Pediatricians

·                     Child Neurologists

·                     Child Psychiatrists

·                     Psychologists who have declared child competency to their Licensing Board

Components to be included in an evaluation to diagnose a child with a PDD:

·                     Developmental History

·                     Family History

·                     Medical History

·                     Review of official DSM-IV Manual or other acceptable future manual

·                     Information solicited from more than one setting (if appropriate)

·                     One standardized instrument (emotional/behavioral/social/specific/developmental)

·                     Direct observation and interaction with the child

·                     Reasonable effort to obtain health records from the child’s primary-care physician, birth hospital and other involved specialists

·                     Adaptive Behavior Assessment

 Next Steps

The next steps are to work with state departments to write policy that will ensure consistency of practice for service models.

Conclusion

Through the process of evaluating the problem using the LEAN methodology, gaining multiple-level buy-in and input, and step-by-step implementation, the PDD Initiative has been able to make changes to many processes, including early identification of children for PDD. Using early identification of children with PDD, as an example, this poster session aims to share a systems change improvement model.