Suspecting something may be wrong with your child’s development is a scary thought. It can be confusing as to what one does next. If your child is born with an apparent disability, the pediatrician will refer your infant or toddler to the birth-to-three system, where a team of professionals will assess your infant or toddler. Should your child qualify for services under the Individuals with Disabilities Education Act (IDEA)-Part C, then the team, which includes the parent as a vital member, will develop an Individualized Family Service Plan (IFSP), which is a detailed approach regarding how the service team will support you and your child in addressing their developmental delay or disability.
To qualify for services in the birth-to-three system, a child will go through an assessment using standardized assessment techniques, observations, and parental interviews regarding the infant or toddler’s behavior. Some medical conditions automatically qualify an infant or toddler for services. Others are less obvious and need a thorough assessment. The infant or toddler must demonstrate on appropriate diagnostic instruments a delay of 25% of the infant or toddler’s chronological age in one or more developmental areas of cognitive development; physical development, including vision and hearing; communication development; social or emotional developmental and adaptive developmental (OCDEL, 2013). If the infant or toddler scores 1.5 standard deviations or greater from the average score of an infant or toddler at that age or stage of development, the standardized measures are normed, meaning they have taken measures of thousands of infants and toddlers to calculate what is typical behavior at that age. The recognized standardized test must be valid (i.e., measures what it is supposed to measure) and reliable (i.e., produces the same results for an infant each time it is used). A standard deviation is the amount of time a particular score varies from the average score. An infant or toddler qualifies for service by scoring 1.5 standard deviations below the mean on an assessment for one or more developmental areas, has a diagnosed physical or mental condition that has a high probability of resulting in a developmental delay, or, in the opinion of the assessment team, the infant or toddler is at risk of a developmental delay. Regarding the latter option of determining eligibility for services, the process is referred to as Informed Clinical Opinion. It is reserved for situations where it is difficult to measure aspects of child development and is used to determine the potential need for early intervention services (OCDEL, 2013).
Diagnosed conditions can include:
- Chromosomal abnormalities
- Genetic or congenital disorders
- Sensory impairments
- Inborn errors of metabolism
- Disorders reflecting the disturbance of the nervous system
- Congenital infections
- Severe attachments disorders
- Disorders secondary to exposure to toxic substances, including fetal alcohol syndrome, etc. (EITA, 2024a)
According to EITA, there may be a child who is referred to the Infant/Toddler Early Intervention program who may be considered “at risk” for developmental delay. If the child meets at least one of six at-risk categories, they are eligible for “tracking:”
- Low birth weight (under 1500 grams)
- Cared for in a hospital neonatal intensive care unit (NICU)
- Prenatal substance exposure, including alcohol
- Referred by a county children and youth agency
- Exposed to lead
- Experiencing homelessness (EITA, 2024a)
There is a shift in the assessment process when the child reaches preschool age. Preschool age is defined as from 3 to the beginning of school. States vary in the age upon which school attendance is compulsory. This is usually at the age of 5 or 6 years old. In PA, the Informed Clinical Opinion of the assessment team can no longer be used to determine eligibility. The second significant difference from the Infant/Toddler system is that the assessment team can no longer consider a diagnosed physical or mental condition which has a high probability of resulting in a developmental delay as an automatic path to eligibility for services. Instead, eligibility is a two-pronged approach in the Commonwealth of Pennsylvania. To qualify for special education services under Individuals with Disabilities Education Act, both prongs must be satisfied. A preschool child is eligible if they score 1.5 standard deviations below the mean on the standardized measures described above or by being identified as a child with a disability as defined under IDEA. Under Individuals with Disabilities Education Act, a child is eligible for special education services if they are determined to have one of 13 disability categories, with autism being one such category. In Pennsylvania, the Preschool child must also satisfy the second prong of eligibility. The child must need special education and related services to be eligible for early intervention services (OCDEL, 2013). Further, the child’s presenting needs must impact their ‘ability to participate in developmentally appropriate daily routines and activities’ (Commonwealth of Pennsylvania, P.42-43). Unlike the determination in the Infant/Toddler system, the assessment team may NOT use Informed Clinical Opinion to determine eligibility for early intervention services.
Under the Individuals with Disabilities Education Act (IDEA, 2004), the 13 disability categories are:
- Intellectual Disability
- Hearing Impairment
- Speech and Language Impairment
- Visual Impairment (including blindness)
- Emotional Disturbance
- Orthopedic Impairment
- Autism
- Traumatic Brain Injury
- Other health impairment
- Specific Learning Disability
- Deafness
- Deafblindness
- Multiple disabilities (34 CFR § 300.8)
For parents in the Philadelphia and the City of Chester – Upland catchment areas, the process of determining eligibility for Early Intervention services begins with a call to Elwyn’s Intake Center. Here, the coordinators will ask a series of screening questions of the parent or guardian about the types of concerns they may have about a preschool-aged child. The coordinator will refer the family to the Behavioral Health Division or the Early Learning Services (ELS) Division. The family is sent a Permission To Evaluate (PTE), and an evaluation is scheduled with one of our Multi-Disciplinary Evaluation (MDE) Teams. At intake, the coordinators determine if English is the primary language spoken in the home or if the family needs a translator at the meetings; the evaluation is to be conducted in their primary language, and subsequent documentation & paperwork are to be translated into their primary language. The families are sent information regarding procedural safeguards and rights to privacy under the Family Education Rights Privacy Act (FERPA, 1975)
The Multi-Disciplinary Evaluation (MDE) teams consist of a variety of professionals, including Speech and Language therapists (SLPs), Occupational Therapists (OT), Special Education Instructors (SI), etc., who will assess your child in several domains. Depending upon the nature of the concern, not all the professional team will participate in the evaluation. The teams will assess your child in 5 domains, including cognitive, communication, social-emotional, physical development, and adaptive behavior, using standardized tests such as the Battelle Developmental Inventory 3 (BDI-3) or the Developmental Assessment of Young Children, 2nd Edition, commonly referred to as the DAYC 2 as well as other measures and qualitative observations. DAYC 2 is a norm-referenced assessment. In other words, your child’s score is compared to a group of representative children (EITA, 2024b). As part of a standardized assessment, the team may present tasks and/or directions to your child. These assessment items are done in the same way for each child tested. Further, families and caretakers are often required to respond to standardized interview items that help capture children’s developmental skills that may otherwise be difficult to capture through assessment items and/or be difficult to have an opportunity to observe. (Newborg, J., 2020, P. 43). Norm-referenced tests are useful in determining eligibility. However, they are not the complete picture of your child. Teams must use a variety of approaches such as parent and/or teacher interviews, direct observation of the child in play and/or their natural environment, and review of any relevant records, including but limited to medical diagnosis. The team will also use criterion-referenced assessments, which measure whether the child has accomplished a certain set of skills. These tools are useful in planning educational interventions.
The MDE teams will use other normed and criterion-referenced assessments, depending on the area of concern. When autism is suspected, the team may opt to use the Autism Diagnostic Observation Schedule 2nd edition (ADOS-2), the Child Autism Rating Scale 2 (CARS-2), or the Autism Diagnostic Interview-Revised (ADI-R). After the evaluation meeting occurs and all the assessments have been scored, the MDE team presents its findings to the family in a separate meeting later. The MDE Team explains to the family why their child qualifies for Early Intervention Services. As a team, with the parents as equal team members, the group develops an Individualized Education Plan (IEP) outlining what kind of services the child will receive, in which setting, how frequently, and provided by whom (which professional discipline). Conversely, it is also the team’s responsibility to explain to families why their child is not eligible for special education services as a part of Early Intervention. In addition, they will offer recommendations and referrals regarding where to receive support for their child who is not a part of the special education system. Parents have the right to disagree with the results of the evaluation or the team’s recommendations. They also have the right to request an Independent Educational Evaluation (IEE).
Ernst VanBergeijk, PhD, MSW, is Senior Director of Local Education Agency and Brandon Gordon, EdS is Lead School Psychologist of Early Learning Services at Elwyn. Elwyn has been serving the I/DD population since 1852 and operates in 8 states. Early Learning Services supports over 11,000 preschool children in Philadelphia and the City of Chester – Upland, PA. Ernst can be contacted at Ernst.VanBergeijk@elwyn.org, and Brandon can be contacted at Brandon.Gordon@Elwyn.org.
References
34 Code of Federal Regulations § 300.8. Assistance to the States for the Education of Children with Disabilities.
Commonwealth of Pennsylvania, Department of Education (2009). Chapter 14 Special Education Services and Programs State Regulations COMPARED TO Part 300 Individuals with Disabilities Education Act Federal Regulations.
Individuals with Disabilities Education Improvement Act (IDEIA) (2004). (P.L. 108-446).
Office of Child Developmental and Early Learning (OCDEL). (2013). Eligibility for Infant/Toddler and Preschool Early Intervention. Intervention Announcement. (EI13- #08).
Early Intervention Training Agency (EITA) (2024a). How is Eligibility for Early Intervention in Pennsylvania Established? Retrieved from: training.eita-pa.org August 19, 2024.
Early Intervention Training Agency (2024b). Developmental Assessment of Young Children, 2nd Edition (DAYC 2) 2024-2025. Retrieved from training.eita-pa.org August 20,2024.
Newborg, J. (2020). Battelle Developmental Inventory, 3rd Edition: Examiner’s manual. Riverside Assessments, LLC.
The Family Rights Educational Rights and Privacy Act (FERPA). (20 U.S.C. § 1232g; CFR Part 99)