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Early Identification of Developmental Delay and Disability

Introduction
Early Identification
References
Resources for Families
Advisory Committee
Publication Information

Learning Points

  • Confirm that as many as one in eight children have mental retardation and/or a developmental disability.
  • Explain the rationale for screening infants and children 0 to 2 years of age (i.e., this is an age at which the clinician is very closely involved with children and families and is in a position to have significant impact on the course of the child’s development).
  • List three essential components of the screening process; e.g.,
    • Sensitive attention to parental concerns
    • Thoughtful inquiry about parental observations
    • Observation of a wide variety of the child’s behaviors
  • Identify three brief screening tests that are available and access same; e.g.,
    • Brigance Screens
    • Denver Developmental Screening Test – II
    • Early Language Milestones CHAT
  • Restate five risk factors for developmental disabilities; e.g.,
    • Chromosomal anomaly
    • Neurological disorder
    • Inborn error of metabolism
    • Visual or hearing impairment
    • Prematurity
  • Differentiate between the following categories of major developments and milestones:
    • Gross motor
    • Fine motor
    • Visual and problem solving
    • Expressive language
    • Receptive language
    • Social/adaptive
  • Restate two recommendations for primary care physicians; e.g.,
    • Screen all infants and children from the first encounter and each subsequent encounter for risk or existence of developmental delays or disabilities.
    • Listen to and investigate parental concerns about the child’s development or behavior.
  • Refer families to appropriate resources.

INTRODUCTION
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With as many as one in eight children having mental retardation and/or a developmental disability (Glascoe 1997), it is vital that delays and disabilities are identified as early as possible so these children receive the benefits of early detection and intervention. Scientific research consistently shows that the first three years of life are critical for the development of brain structure and functioning. Because developmental screening is a process that selects those children who will receive the benefits of more intensive evaluation, or of treatment, all infants and children should be screened for developmental disabilities, otherwise some may be denied access to needed care. (AAP, 1994) Unfortunately, many are not identified until after these critical years. Screening to create a complete developmental profile is a brief assessment procedure designed to identify children who should receive more intensive diagnosis or assessment. The emphasis in screening has shifted to a younger age, with the current focus being on infants and children birth through 2 years of age. This is an age at which the clinician is very closely involved with children and families and is in a position to have significant impact on the course of the child’s development.

EARLY IDENTIFICATION
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The limited ability of infant tests, whether intended for screening or definitive diagnosis of intellectual functioning, to predict future function has led to controversy concerning their use. However, when physicians use only clinical impressions, estimates of children’s developmental status are often inaccurate. The advantage of screening instruments is that they state their norms explicitly, serve as a reminder to the clinician to observe development, and are an efficient way to record the observations.

Essential components of the screening process are as follows:

  • Sensitive attention to parental concerns
  • Thoughtful inquiry about parental observations
  • Observation of a wide variety of the child’s behaviors
  • Examination of specific developmental attainments
  • Use of all encounters for observing and recording developmental status
  • Screening of vision and hearing to rule out sensory impairment as a cause of the delay
  • Observation of parent-child interaction.

Screening will likely lead to one of the following conclusions:

  • The child has a disability and should be referred for early intervention services;
  • The child does not have a disability or other significant problem; or further observation is warranted to determine whether or not a disability is present.

Screening Tests

There are several brief screening tests available for primary care physicians to conduct in their offices. Examples include:

  • Brigance Screens
  • Denver Developmental Screening Test – II
  • Battelle Developmental Inventory Screening Test
  • Early Language Milestones CHAT
  • Additional tools can be found at First Signs, Inc. Web site

Additional tests through more informal questioning or formal questionnaires examples include:

Detecting Delays or Disabilities

Delays or deficits in development may be suspected based on one or more of the following:

  • The child is known to have risk factors by history or exam (see list of risk factors below);
  • The child presents physical findings or medical conditions commonly associated with delays or disabilities (e.g., problems with cognition, mobility, language, sensory perception, feeding, sleeping, elimination, or temperament); or
  • The child manifests delays or fails to achieve milestones on time (see below).

Risk Factors for Developmental Disabilities

  • Chromosomal anomaly
  • Neurological disorder
  • Inborn error of metabolism
  • Visual or hearing impairment
  • Prematurity
  • Asphyxia or need for ventilator assistance
  • Central nervous system infection or abnormality
  • Toxin exposure in utero
  • Severe injury, accident, illness, or other trauma
  • Parent with a developmental disability
  • Intrauterine Growth Restriction (IUGR)Average Age of Attainment of Major Developmental Milestones (adapted from Capute 1991)Gross motor
    • 1 month: lifts head
    • 4-6 months: rolls prone to supine; rolls supine to prone; sits with support
    • 6-8 months: sits unsupported; creeps; comes to sit; crawls
    • 8-10 months: pulls to stand
    • 10-14 months: walks
    • 12-18 months: runs

    Fine motor

    • 3 months: opens fists
    • 4-6 months: reaches for objects; transfers objects
    • 10-12 months: releases objects voluntarily; makes marks on paper with pencil
    • 24 months: displays handedness
    • 36 months: draws circles and basic images of people

    Visual and problem solving

    • 1 month: appears visually alert; briefly fixates on faces/objects; moves eyes vertically
    • 2 months: shows some coordinated head and eye movement; visually follows moving objects
    • 3 months: has good coordinated eye movement and head turning; displays some hand-eye coordination; reacts to visual threats
    • 7-8 months: inspects objects
    • 9-12 months: throws objects; uses two or more objects together; makes marks on paper with pencil
    • 16-18 months: scribbles on paper

    Expressive language

    • 1-3 months: coos
    • 4-6 months: ah-goos; razzes
    • 6-10 months: babbles; uses nonspecific “dada” and “mama”
    • 11-14 months: says first three words; uses specific “dada” and “mama”; uses immature jargon
    • 15 months: uses 4-6 words
    • 16-18 months: uses mature jargon; uses 7-20 words
    • 19-21 months: uses 2-word combinations; has 50-word vocabulary
    • 36 months: uses 250 words; forms 3-word sentences; repeats 3 digits; gives age, sex and name

    Receptive language

    • 0-2 months: alerts to some sounds; smiles socially
    • 2-4 months: orients to voices
    • 4-8 months: responds to voices, bells and other sounds
    • 9-10 months: understands “no”; gestures
    • 11 months: follows 1-step command with gesture
    • 14 months: follows 1-step command without gesture
    • 15-18 months: points to pictures; recognizes 5-10 body parts
    • 24 months: follows 2-step command
    • 36 months: identifies colors
    • 54 months: follows 3-step commands

    Social/adaptive

    • 4-6 weeks: smiles socially
    • 7 months: feeds self with fingers
    • 12 months: helps dress self
    • 12-18 months: learns toilet training and sphincter control; uses spoon and cup
    • 24 months: engages in parallel play; does some undressing
    • 30 months: uses fork
    • 36 months: engages in group play; undresses self completely
    • 48 months: dresses self completely
    • 60-72 months: uses knife for spreading; ties shoes

    Recommendations for Primary Care Physicians

  • Screen all infants and children from the first encounter and each subsequent encounter for risk or existence of developmental delays or disabilities (assess family history; observe or test for risk factors listed above; monitor attainment of developmental milestones listed above; determine any genetic etiologies; observe behavior and interaction with parents/caregivers; administer screening tests or parent questionnaires listed above)
  • Provide or arrange for all medically necessary Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) services
  • Provide or arrange for all medically necessary therapies (physical, occupational, speech/language, psychological, etc.) and durable medical equipment
  • Provide medical advice and counseling regarding the delay or disability
  • Listen to and investigate parental concerns about the child’s development or behavior
  • Encourage parents to keep a written record of unusual behavior or developmental patterns
  • Screen vision and hearing to rule out sensory impairment as cause of delay
  • If significant delays are discovered, refer for early intervention services (e.g., Regional Center, local school district [for a child above the age of 3], or other local support agency)
  • Advocate for the child’s access to the appropriate medical and surgical specialists Provide continuity of health care, including periodic and ongoing services aimed at preventing secondary disabilities

Informing parents that their child may have a developmental delay or disability may be difficult. This information should be discussed in a comfortable setting and presented in an understandable way. Parents will likely experience feelings of grief, confusion, shock, anger, stress, anxiety, disbelief, guilt, and loss. Educating them about the disability and what can be done to maximize their child’s potential, and referring them to appropriate intervention services, can be extremely helpful.

REFERENCES
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Peer-reviewed Journal Articles/Academies

American Academy of Pediatrics, Committee on Children With Disabilities. (1993). Pediatric Services for Infants and Children With Special Health Care Needs. Pediatrics, 92(1), 163-165.

American Academy of Pediatrics, Committee on Children With Disabilities. (1994). Screening Infants and Young Children for Developmental Disabilities. Pediatrics, 93(5): 863-865.

American Academy of Pediatrics, Committee on Children with Disabilities. (2001). Developmental Surveillance and Screening of Infants and Young Children. Pediatrics 108, 192-195.

American Academy of Pediatrics, Committee on Children with Disabilities. (1999). The Pediatrician’s Role in the Development and Implementation of an Individual Education Plan (IEP) and/or an Individual Family Service Plan (IFSP). Pediatrics 104(1), 124-127.

American Academy of Pediatrics, Committee on Children with Disabilities, (2001). Role of the Pediatrician in Family-Centered Early Intervention Services. Pediatrics, 107(5), 1155-1157.

Bailey, D.B, Jr., et al. (1998). Family Outcomes in Early Intervention: a Framework for Program Evaluation and Efficacy Research. Exceptional Children 64(3), 313-328.

Bernstein, H.K., Steitner-Eaton, B., Ellis, M.,(1995). Individuals with Disabilities Education Act: Early Intervention by Family Physicians. American Family Physician, 52(1), 71-75.

Cameron, R.J., (1997). Early Intervention for Young Children with Developmental Delay: the Portage Approach. Child Care, Health and Development 23(1), 11-27.

Epps, S and R Kroeker. (1995). Physician Early Intervention Referral as a Function of Child Age and Level of Developmental Delay. Mental Retardation, 33(2), 104-110.

Glascoe, F.P., Foster, E.M., Wolraich, M.L., (1997). An Economic Analysis of Developmental Detection Methods. Pediatrics, 99(6), 830-837.

Thompson, L., et al. (1997). Pathways to Family Empowerment: Effects of Family-centered Delivery of Early Intervention Services. Exceptional Children 64(1), 99-113.

Special Interest Groups/Other Publications

California’s Early Start Program: The Role of the Health Care Provider. Sacramento: (1999). Department of Developmental Services, Prevention and Children Services Branch.

Capute, A.J., Accardo, P.J. (1991). Developmental Disabilities in Infancy and Childhood. Baltimore: Paul H. Brookes Publishing.

American Academy of Pediatrics (2001). Committee on Children with Disabilities

Developmental Surveillance and Screening of Infants and Young Children. Pediatrics, (108), 192 – 195.

Johnson, C.P., Kastner T.A. (2005).The Committee/Section on Children With Disabilities

Helping Families Raise Children with Special Health Care Needs at Home

Pediatrics,115, 507 – 511.

Sand, N, Silverstein, M., Glascoe, F.P.,Gupta, V.B., Tonniges, T.P., O’Connor, K.G.

Pediatricians’ (2005). Reported Practices Regarding Developmental Screening: Do Guidelines Work? Do They Help?

Pediatrics,116, 174 – 179.

Shipman, S.A, Helfand,M., Moyer, V.A., and Yawn, B.P.(2006). Screening for Developmental Dysplasia of the Hip: A Systematic Literature Review for the US Preventive Services Task Force. Pediatrics, 117, 557 – 576.

Shonkoff, J.P., Dworkin, P.H., Leviton, A., Levine, M.D.(1979). Primary Care Approaches to Developmental Disabilities

Pediatrics, 64, 506 – 514.

Child, Parent, Primary Health Care Provider: ‘Important Relationship’ Promotes Long-Term Development of Children.(1999). Early Start Connections 2 (1): 1. Department of Developmental Services, Early Start Resources

Hochstein, M.. Halfon, N. (1998). Brain Development: Nearly Half of California Parents Unaware of Important First Three Years. Sacramento, CA: California , Growing Up Well series.

Johnson, L, et al. (1994). Meeting Early Intervention Challenges: Issues from Birth to Three (2nd ed.). Baltimore: Paul H. Brookes Publishing.

RESOURCES FOR FAMILIES
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The Arc
800-433-5255

California Children’s Services
916-654-0499

California Department of Developmental Services
916-654-1690

California Family Resource Centers
800-515-BABY

California Regional Centers
915-654-1958

California’s Early Start Program
800-515-BABY

Child Health and Disability Prevention Program
916-875-7151

Early Start Resources
800-869-4337

Exceptional Parent Magazine
800-247-8080

Family Voices
888-835-5669

National Childhood Technical Assistance System
919-962-2001

ADVISORY COMMITTEE
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Theodore A. Kastner, M.D., M.S.
Felice Weber Parisi, M.D., M.P.H.
Patricia Samuelson, M.D.
Larry Yin, M.D., M.S.P.H., F.A.A.P.

PUBLICATION INFORMATION
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This document does not provide advice regarding medical diagnosis or treatment for any individual case, and any opinions or statements contained in this document are not intended to serve as a standard of medical care. Physicians are encouraged to view the considerations presented in this document in light of evolving scientific information. This document is not intended for use by the layperson. Reproduction of this document may be done with proper credit given to California Department of Developmental Services.

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