I. Referrals to the Early Intervention Program
Section 2542 (1)(a) of the Public Health Law (PHL) requires Early Intervention Officials (EIOs)1 to identify and locate children who are eligible for the Early Intervention Program and to provide for the identification, screening, and tracking of children at risk for developmental delay.2 PHL and regulations further require the following primary referral sources to refer children suspected of having disabilities, or at risk of having disabilities, to the EIO of the municipality in which the child resides (unless the child has been referred or the parent objects to the referral). Primary referral sources include: all individuals who are qualified personnel; all approved evaluators, service coordinators, and providers of early intervention services; hospitals; child health care providers, including pediatricians; day care programs; local school districts; public health facilities; early childhood direction centers; local health units; local school districts; local social service districts; public health facilities; and operators of any clinic approved under Article 28 of the PHL, Articles 16 or 31 of the Mental Hygiene Law, and other such social service and health care agencies and providers specified in State regulation.
If a parent objects to a referral to the EIP by a primary referral source, the primary referral source is required to document the parent's objection to the referral; provide the parent with the name and telephone number of the EIO in the child's county of residence; and, make reasonable efforts within two months to follow up with the parent, if appropriate, to refer the child unless the parent objects.3
Parents may also refer their child directly to the EIP if they have a concern about their child's development, or when they agree with a concern raised by someone else about their child. For example, if a child's primary health care provider is concerned about his or her development, the parent may directly refer the child to the EIP or ask the physician to refer the child.
It is important to differentiate the responsibilities of municipalities for children referred to the EIO as at risk for disability and children referred with a suspected or confirmed disability (either a developmental delay or diagnosed condition with a high probability of resulting in developmental delay). In New York State, children at-risk for disability are not eligible for the Early Intervention Program. However, any child who meets risk criteria established in EIP regulations (see Section 10 NYCRR §69-4.3 (f) – see Appendix A) must be referred to the Early Intervention Program for developmental surveillance (screening and tracking). The purpose of developmental surveillance is to identify potential delays or disabilities, as early as possible, in children who are typically developing but are at high risk for developmental problems due to medical/biological neonatal or medical/biological post-neonatal and early childhood risk factors. Developmental surveillance has been described by the American Academy of Pediatrics as a "flexible, continuous process whereby knowledgeable professionals perform skilled observations of children during the provision of health care." The components of developmental surveillance include eliciting and attending to parental concerns, developmental history, making accurate and informative observations of children, and sharing opinions and concerns with other professionals.4
Developmental surveillance, which may include developmental screening (a brief assessment procedure to identify children who should receive more intensive diagnosis or assessment), for these children is generally accomplished through their primary health care providers. When families cannot be engaged with a primary health care provider, municipalities may directly provide developmental screening (for example, by using the Ages and Stages Questionnaire or other appropriate developmental screening tools).
A new provision of the Federal Child Abuse Prevention and Treatment Act (CAPTA)5 requires state child protection agencies to establish "provisions and procedures for referral of a child under three years of age, who are involved in substantiated child abuse or neglect, to early intervention services funded under Part C of the Individuals with Disabilities Education Act." In the 2004 reauthorization of the Individuals with Disabilities Education Act (IDEA), a new provision was added to Part C that requires states to provide "a description of State policies and procedures that require the referral for early intervention services …of a child under the age of three who (A) is involved in a substantiated case of child abuse or neglect; or, (B) is identified as affected by illegal substance abuse, or withdrawal symptoms resulting from prenatal exposure."6 As part of its reauthorization of IDEA, Congress clarified that the intent of this provision is not to require state early intervention programs to provide a multidisciplinary evaluation for all children referred to Part C as the result of being the subject of a substantiated case of child abuse or neglect or affected by illegal substance abuse. Rather, the intent of these provisions is to ensure that these children are screened, either by a designated primary referral source or Part C provider to determine whether a referral for an evaluation for early intervention services under Part C is warranted.7
State PHL and EIP regulations8 require EIOs, as part of their role in the child find system, to coordinate the efforts made by other agencies and community programs that serve infants and toddlers to identify, locate, and track children, and identify, track, and screen at-risk children, using available resources and resources allocated by the Department for this purpose. Under the new provisions of IDEA and CAPTA, municipalities are required to ensure that children involved in substantiated cases of child abuse and neglect and those affected by illegal substance abuse are included in child find efforts. Early Intervention Program regulations at 10 NYCRR §69-4.3(a) require primary referral sources to refer children at risk of having a disability to the EIO based on medical/biological risk criteria identified at 10 NYCRR §69-4.3(f), including maternal prenatal alcohol abuse, maternal prenatal abuse of illicit substances, and prenatal exposure to therapeutic drugs with known potential developmental implications (such as psychotropic, anticonvulsant, or antineoplastic medications). EIP regulations further specify that the following risk criteria may be considered by a primary referral source in the decision to make a referral: no prenatal care; parental developmental disability or diagnosed serious and persistent mental illness; parental substance abuse, including alcohol or illicit drug abuse; no well child care by six months of age or significant delay in immunizations; and/or, other risk criteria as identified by the primary referral source.9
In accordance with new IDEA and CAPTA requirements, and existing PHL and regulations governing the EIP, children involved in substantiated cases of child abuse and neglect, and those affected by illegal substance abuse or withdrawal symptoms resulting from prenatal exposure should be considered at-risk for developmental delay and included in local child find efforts (unless a child also has a developmental delay or diagnosis that makes him or her potentially eligible for the EIP). This means that EIOs are responsible for collaborating with all available resources in the community to ensure that these children are identified, screened, and tracked, so that a referral to the EIP for a multidisciplinary evaluation can be made if a developmental delay or disability is suspected. Municipalities should provide direct developmental screening for those children for whom no other resources are available to provide screening and tracking services, using Early Intervention Administration funds allocated to municipalities to administer the EIP.10 Municipalities should already have child find procedures in place to work with hospitals and health care providers to ensure that children affected by illegal substance abuse are referred to the EIP for screening and tracking purposes.
EIOs and local EIP program staff should work with their local departments of social services and local early intervention coordinating councils to collaborate on the development of local procedures to ensure appropriate referrals of children in the child protective system to the EIP. As mentioned above, resources allocated to municipalities by the Department, through Early Intervention Administration contracts to administer the EIP (including child find), can be used to collaborate with local departments of social services to identify children involved in substantiated cases of child abuse or neglect for whom a referral to the EIP may be appropriate. For example, it may be appropriate for municipalities to conduct developmental screening programs in conjunction with local departments of social services for children involved in substantiated cases of child abuse and neglect. It is also important for EIOs and staff to educate child protective staff about eligibility requirements for the EIP and the types of developmental services available through the program, so that families and staff have appropriate expectations about early intervention services.
Finally, many young children in the child protective system who have been involved in a substantiated case of child abuse and neglect may be in the foster care system. The Protocol for Children in the Early Intervention Program and Foster Care, issued by the Department in 2003, should be helpful to assist you in collaborative efforts to implement the new IDEA and CAPTA requirements.
As mentioned above, for all children at-risk who are referred to the EIP, municipalities should be working closely with primary health care providers and other community resources to ensure that children receive periodic developmental screening. Local child find efforts related to children involved in substantiated cases of child abuse or neglect, or who are affected by illegal substance abuse, should include efforts to assist families in accessing primary health care providers who can provide preventive health care services, including developmental surveillance.
It is important to note that under the PHL and regulations governing the EIP, the involvement of a child in a substantiated case of child abuse and neglect or prenatal exposure to illicit substances (including withdrawal symptoms), in the absence of a suspected or confirmed developmental delay or diagnosed condition with a high probability of resulting in developmental delay is insufficient to qualify the child for the EIP, including service coordination services, multidisciplinary evaluations, development of an individualized family service plan (IFSP), and provision of early intervention services. Only those who are referred to the EIO as having a suspected or confirmed disability (either a developmental delay or diagnosed condition with a high probability of developmental delay), and are therefore thought to be eligible children, are entitled to receive service coordination services and a multidisciplinary evaluation to determine eligibility for the EIP. Therefore, an initial service coordinator should be designated and a multidisciplinary evaluation provided only to those children referred to the EIO because they are involved in an indicated case of child abuse and neglect or have been exposed prenatally to illicit substance abuse (or have experienced withdrawal symptoms), and for whom a developmental delay or diagnosed condition is also suspected or confirmed and identified by the primary referral source at the time of the child's referral.
State and federal law and regulations require that children who are referred to EIOs with a confirmed or suspected disability are entitled to receive a comprehensive, multidisciplinary evaluation to determine whether they meet the eligibility criteria for the EIP. EIP regulations at 10 NYCRR §69-4.1(m) define evaluation to mean "the procedures used by appropriate qualified personnel to determine a child's initial and continuing eligibility for the Early Intervention Program, including determining the status of the child in each of the following areas of development: cognitive, physical, communication, social or emotional, and adaptive." EIP regulations at 10 NYCRR §69-4.1(ac) define multidisciplinary as "the involvement of two or more professionals from different disciplines in the provision of integrated and coordinated services, including evaluation and assessment services..." For children with a confirmed disability (i.e., a diagnosed condition with a high probability of developmental delay), the purpose of the multidisciplinary evaluation is to confirm the diagnosis through a review of appropriate medical or other child records, with parent consent (see Section II of this document, "Use of Findings of Other Examinations"); and, to conduct an evaluation and assessment of all developmental domains to assist in development of the Individualized Family Service Plan (IFSP). Requirements for multidisciplinary evaluations are described in detail in Section II of this document.
Because children thought to be eligible for the EIP are entitled to a multidisciplinary evaluation,11 municipalities cannot "prescreen" them (for example, complete a developmental screening such as the ASQ or other type of screening) to determine whether or what type of an evaluation should be completed. Upon receipt of a referral for a child with a suspected or confirmed disability, the EIO must promptly designate an initial service coordinator to assist the child's parent(s) in selection of an evaluator to conduct a multidisciplinary evaluation.
Municipalities are responsible for ensuring that parents have the opportunity to select an evaluator from the list of approved evaluators under contract with the municipality to deliver early intervention evaluations, and to ensure that initial service coordinators have access to and use an up-to-date list of available evaluators in their discussions with parents about selection of an evaluator. The initial service coordinator is responsible for providing parents with: a list of all evaluators approved and under contract with their municipality; and, objective information about potential evaluators to assist parents in selecting evaluators appropriate for the individual needs of their children at the time of referrals.
When children in foster care are referred to the EIP with a suspected disability, the EIO is responsible for making a determination, in conjunction with the local Commissioner of Social Services or his/her designee, regarding the availability of the child's parent and the need to appoint a surrogate parent for purposes of the EIP, including providing consent for the evaluation and participation in the evaluation process.
1Throughout this document, the term "EIO" will be used to reference both Early Intervention Officials and their designees.
2 PHL §2542(1)(a)(c)
3 10 NYCRR §69-4.3(a)(3)
4 American Academy of Pediatrics: Developmental Surveillance and Screening of Infants and Young Children. Committee on Children with Disabilities. Pediatrics, Vol 108, No. 1, July, 2001, pp 192-195.
5 42 U.S.C. 5106a(b)(xxi)
6 H.R. 1350, Sec. 637(a)(6)
7 Conference Report on H.R. 1350, pg 126
8 PHL §2542(1) and 10 NYCRR §69-4.2 (a)(2)(3)
9 10 NYCRR §69-4.3(g)
10 Rates established by the Department for screening can only be used by evaluators to perform a screening, when appropriate, for a child referred to the EIP as a potentially eligible child for a multidisciplinary evaluation. See Section II, "Required Components of the Multidisciplinary Evaluation," for a discussion about when it may be appropriate for evaluators to conduct a screening.
11 PHL §2544(1)