Report of the Recommendations - Autism / Pervasive Developmental Disorders

Why the Early Intervention Program is Developing Clinical Practice Guidelines

In 1996, a multi-year effort was initiated by the New York State Department of Health (DOH) to develop clinical practice guidelines to support the efforts of the statewide Early Intervention Program. As lead agency for the Early Intervention Program in New York State, the DOH is committed to ensuring that the Early Intervention Program provides consistent, high-quality, cost-effective, and appropriate services that result in measurable outcomes for eligible children and their families.

This guideline is a tool to help assure that infants and young children with disabilities receive early intervention services consistent with their individual needs, resources, priorities, and the concerns of their families.

The guideline is intended to help families, service providers, and public officials by offering recommendations based on scientific evidence and expert clinical opinion on effective practices for the following:

• Early identification of children at risk or suspected of having a disability through routine developmental surveillance and screening targeted to identify specific disabilities.
• Provision of multidisciplinary evaluations and assessments that result in reliable information about a child's developmental strengths and needs and, when possible, a diagnosis.
• The determination of effective intervention strategies and reaching agreement on the frequency, intensity, and duration of early intervention services that will lead to positive outcomes for children and families.
• The measurement of outcomes achieved.

The impact of clinical practice guidelines for the Early Intervention Program will depend on their credibility with families, service providers, and public officials. To ensure a credible product, the DOH elected to use an evidence-based, multidisciplinary consensus panel approach. The methodology used for these guidelines was established by the Agency for Health Care Policy and Research (AHCPR). The DOH selected the AHCPR model for this effort because it is an effective, scientific, and well-tested approach to guideline development.

The DOH has worked closely with the State Early Intervention Coordinating Council throughout the guideline development process. A state-level steering committee of early intervention officials, representatives of service providers, and parents was also established to advise the department of this initiative. A national advisory group of experts in early intervention has been available to the department to review and to provide feedback on the methodology and the guideline. Their efforts have been crucial to the successful development of this guideline.

The New York State Early Intervention Program is part of the national Early Intervention Program for infants and toddlers with disabilities and their families, first created by Congress in 1986 under the Individuals with Disabilities Education Act (IDEA). IDEA is also the federal law that ensures all children and youth ages 3 to 21 years with disabilities the right to a free, appropriate education. In New York State, the Early Intervention Program is established in Article 25 of the Public Health Law and has been available to all eligible infants and toddlers and their families since July 1, 1993.

To be eligible for services, children must be under 3 years of age and have a confirmed disability or established developmental delay in one or more areas of the following areas of development: physical, cognitive, communication, social-emotional, and adaptive development.

The Early Intervention Program offers a variety of therapeutic and support services to infants and toddlers with disabilities and their families, including: family education and counseling, home visits, and parent support groups; special instruction; speech pathology and audiology; occupational therapy; physical therapy; psychological services; service coordination; nursing services; nutrition services; social work services; vision services; and assistive technology devices and services.

Major provisions of the New York Public Health Law that govern the Early Intervention program require:

• Local administration of the program by an Early Intervention Official (EIO) designated by the chief elected official of each of the fifty-seven counties and New York City. The EIO is responsible for ensuring eligible children and families receive the services included in the Individualized Family Service Plan (IFSP) that is developed for the child and family.
• Identification and referral of children at risk or suspected of disability by primary referral sources (including physicians and other health-care providers).
• Periodic developmental screening and tracking of at-risk children.
• Provision of service coordination services to eligible children and their families.
• A multidisciplinary evaluation of children referred to the program, at no cost to families, to determine eligibility.
• Individualized Family Service Plans (IFSP) for eligible children and their families.
• Provision of early intervention services as specified in the IFSP at no cost to the family.
• Delivery of services in natural settings in the community where peers are typically found to the maximum extent appropriate.

The mission of the Early Intervention Program is to identify and evaluate as early as possible those infants and toddlers whose healthy development is compromised and provide for appropriate intervention to improve child and family development. The program goals are to:

• Support parents in meeting their responsibilities to nurture and to enhance their children's development.
• Create opportunities for full participation of children with disabilities and their families in their communities by ensuring services are delivered in natural environments to the maximum extent appropriate.
• Ensure early intervention services are coordinated with the full array of early childhood health and mental health, educational, social, and other community-based services needed by and provided to children and their families.
• Enhance child development and functional outcomes and improve family life through delivery of effective, outcome-based high quality early intervention services.
• Ensure early intervention services complement the child's medical home by involving primary and specialty health care providers in supporting family participation in early intervention services.
• Assure equity of access, quality, consistency, and accountability in the service system by ensuring clear lines of public supervision, responsibility, and authority for the provision of early intervention services to eligible children and their families.

New York State Public Health Law designates the Department of Health as the lead agency for this statewide program. As the lead agency, the DOH is responsible for the overall supervision and administration of the Early Intervention Program. Responsibilities include:

• Implementing statewide policies, procedures and programmatic and reimbursement regulations.
• Implementing a comprehensive public awareness and child-find system.
• Approving, compiling, and disseminating lists of approved service coordinators, evaluators, and service providers.
• Providing training and technical assistance to municipalities and service providers to enable them to identify, locate, and evaluate eligible children; developing individualized family service plans; ensuring the appropriate provision of early intervention services; and promoting the development of new services where there is a demonstrated need.
• Safeguarding parent and child rights under the Early Intervention Program.
• Establishing and maintaining an Early Intervention Coordinating Council to advise and assist the department in program implementation.