DESCRIPTORS:  mandated special education programs, family-centered services, early intervention, Individual Family Service Plan, Service Coordination, eligibility requirements.
SYNOPSIS: Over the past 25 years, the United States of America has incorporated early intervention services for young children birth to three years of age into mandated special education programs.  This article discusses three key elements of the mandated regulations that highlight the importance of family-centered services incorporated into Part C of the Individuals with Disabilities Education Act.   The three elements include the Individual Family Service Plan, Service Coordination and eligibility requirements.

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From the diagnosis at birth that he had a hearing impairment, to that lapse of time of 3-months before early intervention started that was probably the hardest time.  And then I finally met Erin, our service coordinator/service provider.  Then it was better, it was great.  (Parent)

Federal law in the United States requires services to very young children (birth to up to 3 years of age) and their families who are at risk for or who have a developmental delay (IDEA, 2004).  The law was enacted as a consequence of parent advocacy, legislation brought forth by politicians with family and/or friends with disabilities and research, services to very young children with disabilities. In 1997, early intervention services were included in the amendments to IDEA. The requirements of the current Individuals with Disabilities Education Act (IDEA) for very young children are mandated under Part C of the regulations.  These mandates are relatively new as the pathway to providing services to very young children at risk for or with disabilities began 25 years ago when in 1986 congress passed Public Law (P.L.) 99-457.  The law provides incentives to states to serve children from birth that had special needs or were at risk for later problems (Danaher, Goode & Lazara, 2010; Umansky, 2009). 

The requirements under Part C of IDEA (2004) are unique and differ from other mandates for serving older children with disabilities.  These mandates were developed from research conducted since 1968 with the passage of the Handicapped Children’s Early Education Assistance Act.  This act was the first major federal recognition of the importance of early education.  The legislation provided for the development of the Handicapped Children’s Early Education Program (HCEEP) (Umansky, 2009).  The HCEEP administered and provided technical assistance to 3-year demonstration programs.  Present day services to children birth to three and their families have evolved from the research that emerged from the HCEEP demonstration programs and subsequent research and studies (Umansky).  In providing an overview of Part C of IDEA, this article will focus on three distinctive aspects of Part C: 1) the population served in Part C; 2) the role of families; and (3) service coordination.

Children Served under Part C

According to the United States federal government, the term “infants and toddlers with disabilities” means individuals younger than 3 years old who need early intervention services because they are experiencing developmental delays in the areas of cognitive development, physical development, language and speech development, social or emotional development, or self-help skills (IDEA, 2004). In addition, those infants and toddlers who have a diagnosed mental or physical condition that typically results in a delay, or who are at risk of substantial delay, are included in the definition (at the state’s discretion). The criteria for these definitions are to be determined by each state (IDEA, 2004).  Each state is given the responsibility to determine specific eligibility guidelines for who qualifies for early intervention services.   Although the federal law does not outline specific eligibility guidelines, it does encourage states to serve children who are at risk for developing a delay later in childhood.  The number of children served in 2008 in the United States is shown in Table 1. Data includes the number of young children by age who received early intervention services (Danaler, Goode & Lazaras, 2010).

Table 1 - Number of Children Served Under Part C (2008)

Part C eligibility is determined by each state's definition of developmental delay and whether it includes children at risk for disabilities in the eligibility formula. An important part of the evaluation process for infants and toddlers (ages 0 - 36 months) includes informed clinical opinion of professionals experienced with the development of very young children. For example, in California, an infant or toddler is eligible for early intervention services, when as a result of an assessment and evaluation the child meets one of three state determined criteria. First, infants and toddlers with a developmental delay in one or more of the following five areas: cognitive development; physical and motor development, including vision and hearing; communication development; social or emotional development; or adaptive development. Developmentally delayed infants and toddlers are those who are determined to have a significant difference between the expected level of development for their age and their current level of functioning. This determination shall be made by qualified personnel who are recognized by, or part of, a multidisciplinary team, including the parents.  Second, infants and toddlers with established risk conditions, who are infants and toddlers with conditions of known etiology or conditions with established harmful developmental consequences. The conditions shall be diagnosed by qualified personnel recognized by, or part of, a multidisciplinary team, including the parents. The condition shall be certified as having a high probability of leading to developmental delay if the delay is not evident at the time of diagnosis. Third, infants and toddlers who are at high risk of having substantial developmental disability due to a combination of biomedical risk factors, the presence of which is diagnosed by qualified clinicians recognized by, or part of, a multidisciplinary team, including the parents (California Department of Developmental Services, 2006)

Family Centered-Practice

The Individualized Family Service Plan (IFSP).  A distinctive aspect of early intervention is the focus on the role of the family.  Part C of IDEA requires parent-related services. One avenue for family involvement is incorporated through the Individualized Family Service Plan (IFSP).  An Individualized Family Service Plan documents and guides the early intervention process for children with disabilities and their families. The IFSP is the vehicle through which effective early intervention is implemented in accordance with Part C of IDEA. It contains information about the services necessary to facilitate a child's development and enhance the family's capacity to facilitate the child's development. Through the IFSP process, family members and service providers work as a team to plan, implement, and evaluate services tailored to the family's unique concerns, priorities, and resources (Howard, Williams & Lepper, 2010). The IFSP is intentionally family-focused.  The needs of the family are central in the development of the IFSP. A required component of the IFSP is the Priorities, Concerns and Resources section.  Parent/caregivers are invited to share their priorities for their child, primary concerns and resources available to support the family of a child with special needs (California Department of Developmental Services, 2006).  In addition, not only is parental consent required to assess their child, parents should be included in the assessment process.  Parents can contribute to the assessment process through an interview and/or completing a checklist.  

Family-centered practice focuses on building partnerships with families that are respectful; it honors their decisions and values and thereby supports the functioning of the family (Dunst, Trivette & Hamby, 2007).  Fundamentally, family-centered care was defined by Brewer, McPherson, Magrab and Hutchin (1989) as:
A philosophy of care in which the pivotal role of the family is recognized and respected...[in which] families should be supported in their natural caregiving and decision-making roles...[in which] parents and professionals are seen as equals (as cited in Espe-Sherwindt, 2008). 

The focus on service delivery emphasized not only what services are provided but how the services are provided.  Therefore the interactions with the family will be framed around three significant elements: (1) A focus on family and child strengths rather than deficits; (2) A fostering of family choice and control over desired resources; and (3) The development of a collaborative relationship between parents and professionals (Dunst, Trivette & Deal, 1994). 

A desired outcome of early intervention, as specified in both IDEA (2004) and the DEC Recommended Practices in Early Intervention/Early Childhood Special Education (Sandall, McLean & Smith, 2000) is that parents of children receiving early intervention services feel efficacious in supporting their children’s growth and development.

Natural environment.  Family –centered principles include the delivery of services in the natural environment.  The natural environment is defined as providing early intervention services where the child naturally would be, such as, the home or at child-care center. Table Recent data collected by the U.S. Department of Education Office of Special Education Programs (OSEP) demonstrates that very young children with disabilities are receiving early intervention services in the natural environment (Danaher, Goode & Lazara, 2010).  As Table 2 illustrates, 86% of children served under Part C received their intervention services in the home.

Table 2 - Number of Infants and Toddlers Ages Birth to Two Years Served Under Part C by Early Intervention Setting 

Service Coordination

 The provisions in Part C require that each family receive the service of a service coordinator. Essentially, the service coordinator is a family’s case manager (Howard, Williams & Lepper, 2010).  The service coordinator is responsible for the IFSP and the rules and regulations that govern Part C.  In addition, the service coordinator is the one person, working with the family, who “actively advocates for services in response changing needs, and is responsible for implementation of an integrated program of services, in consultation with colleague specialists” (Division of Early Childhood, 1987).  Legally, service coordinators are responsible for ensuring that seven components of program delivery are completed in compliance with federal and state laws:

• Performing child evaluations and assessments
• Developing, reviewing and evaluating individual family service plans
• Identifying available service providers
• Coordinating and monitoring the delivery of available service
• Informing families on the availability of advocacy services
• Coordinating services with medical and health providers
• Developing a transition plan to preschool services (at age three) when appropriate

The service coordinator does not provide all the services, but ensures that the family has access to all the services that are needed in order for the child and family to meet the desired outcomes outlined in the IFSP.  Furthermore, a crucial goal of service coordination is to foster family empowerment.  Through the development of family empowerment, families become more self-efficacious and competent in advocating for their child once the child turns three years of age and transitions to preschool (Howard, Williams & Lepper, 2010).

Summary

Early intervention services to very young children with disabilities provide families with support and services.  Over the past several decades, these services and supports have become refined as the field of early childhood special education (ECSE) has expanded.  The number of children served, the role of families and the designation of natural environments as the setting for early intervention services are positive outcomes that developed out of the early federal legislation in 1986.  Research continues in the field of early childhood special education as we continue to learn more about families and how to best support young children with disabilities.  This quote, from 1990, provides a reminder that in 2011, we continue to strive to provide effective and meaningful support to families.

The challenges presented by our growing commitment to families of young children with handicaps promise to make the 1990s an exciting decade in early intervention.  Many questions remain as to the types of support which are likely to be most useful to families...(Beckman, 1990 p. 195).

References

Beckman, P., Bailey, D. (1990).  Preface-special issue on families.  Journal of Early Intervention, 14(3), 195
Department of Developmental Services State Interagency Coordinating Council on Early Intervention Annual Reports, July 1, 2002 to June 30, 2003 & July 1, 2003 to June 30, 2004 (2006).Retrieved from: http://www.dds.ca.gov/EarlyStart/docs/ICCAnnual_Report02_04.pdf
Danaher, J., Goode, S. & Lazara, A. (Eds.). (2010). Part C updates (11th ed.). Chapel Hill: The University of North Carolina, FPG Child Development Institute, National Early Childhood Technical Assistance Center.
Dunst, C., Trivette, C., & Deal, A. (1994). Supporting and strengthening families (Vol.1) Methods, Strategies and Practices.  Cambridge, MA: Brookline Books.
Dunst, C., Trivette, C., & Hamby, D. (2007). Meta-analysis of family-centered help-giving practices research. Mental Retardation and Developmental Disabilities Research Review, 13(4), 370-378.
Espe-Sherwindt, M. (2008). Family-centred practice: Collaboration, competency and evidence. Support for Learning, 23(3), 136-143.
Howard, V., Williams, B., Lepper, C. (2010). Very young children with special needs: A foundation for educators, families and service providers (4th Ed.)  Upper Saddle River, N.J: Pearson Education.
McWilliam, R. (2006). What happened to service coordination? Journal of Early Intervention, 28(3), 166-168.
Trivette, C. , & Dunst, C. (2004). Evaluating family-based practices: Parenting experiences scale. Young Exceptional Children, 7(3), 12-19.
Umansky, W. (2009). Introduction to young children with special needs. In S. Hooper & W. Umansky (5th ed), Young Children with Special Needs (pp.2-4).  Upper Saddle River, NJ: Pearson Education.