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Early Intervention of Delay and Disability

Introduction

Recommendations for Primary Care Physicians

Early Identification

References

Resources for Families

Advisory Committee

Publication Information

INTRODUCTION

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Early intervention is a system of coordinated services that promotes the child’s growth and development and enhances the capacity of the family to meet their child’s needs during the critical early years. Research shows that participation in family-centered early intervention services during the first years of life has substantial positive effects on the cognitive development, social adjustment, and overall development of children with developmental disabilities. These services to eligible children are federally mandated under Part C of the Individuals with Disabilities Education Act (IDEA) (and in California by the California Early Intervention Services Act). Upon referral to an early intervention program, such as California’s Early Start Program, providers work with families to develop an Individualized Family Service Plan (IFSP), and each family is provided a service coordinator to advocate at their request.

Additionally, the American Academy of Pediatrics (AAP) has strongly advocated for a “medical home” for children with disabilities in which regular and specialized medical services are family-centered and well-coordinated with other early intervention services. Coordinated care should attempt to maximize appropriate services and avoid duplication and gaps in services. The relationship between the child, parents, and primary care physician is very important in promoting the long-term health and development of the child, and should take the form of a partnership as much as possible. The family’s culture, values, resources, priorities, and expectations may impact family-centered services.

RECOMMENDATIONS FOR PRIMARY CARE PHYSICIANS

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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.

Upon identification of a disability or delay, a primary care physician may:

  • Provide medical history and current health status to screening service coordinators; promptly communicate any changes in health status to the intervention program
  • Provide or arrange for all medically necessary Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) services
  • Participate in the development of the Individualized Family Service Plan (IFSP)
  • Ensure that the IFSP is consistent with the child’s current health status and health needs
  • Support the IFSP
  • Enable families to feel competent as advocates
  • Work within the individual family’s resources, priorities, values, and beliefs
  • Refer to community-based programs (schools, regional centers (click here), disability support groups, etc.)
  • Provide or arrange for all medically necessary therapies (physical, occupational, speech/language, psychological, etc.) and durable medical equipment/assistive technology devices/services.
  • Encourage families to cultivate support networks (friends, extended family members, etc.)
  • Discuss the possibility of Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and Medicaid (MediCal in California)

Note: In California, a Newborn Hearing Screening Program is being implemented. Primary care physicians and birthing hospitals will help ensure that all infants receive hearing screening.

EARLY IDENTIFICATION

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Eligibility Criteria

Referral to early intervention services can be based on objective criteria, screening tests, or clinical suspicion. Under IDEA, individual states retain the right to determine eligibility criteria for early intervention services, and some require referral within a certain time period. The following two eligibility criteria are typical of most states:

  1. Birth to 3 years of age; and
  2. Developmental delay or deficit in one or more of these areas:
  • Cognitive development (e.g., limited interest in environment, play, and learning)
  • Physical and motor development, including vision and hearing (e.g., hypertonia, dystonia, asymmetry)
  • Communication development (e.g., limited sound use, limited response to speech)
  • Emotional-social development (e.g., impaired attachment, self-injurious behavior)
  • Adaptive development (e.g., feeding difficulties)

Note: While most states require children to demonstrate one or more of these types of deficits, some states permit children to be enrolled who are at risk for delays or disabilities due to environmental factors.

Support Services

California Children’s Services, 916-654-0499

California Department of Developmental Services, 916-654-1690,

http://www.dds.ca.gov

California Family Resource Centers, 800-515-BABY

California Regional Centers, 915-654-1958,

http://www.dds.ca.gov/rc/RCInfo.cfm

California’s Early Start Program, 800-515-BABY

Child Health and Disability Prevention Program, 916-875-7151

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

Bailey,D.B. et al. (2005).Thirty-Six-Month Outcomes for Families of Children Who Have Disabilities and Participated in Early Intervention. Pediatrics, 116, 1346 – 1352.

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

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

Epps, S., Kroeker, R. (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.

Palfrey, J.S. et al (2005). The Brookline Early Education Project: A 25-Year Follow-up Study of a Family-Centered Early Health and Development Intervention. Pediatrics, 116, 144 – 152.

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. (1999). Sacramento: 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.

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.

Early Intervention Services. Department of Developmental Services. Retrieved on June 9, 2006 from http://www.dds.ca.gov/EarlyStart/ESHome.cfm

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

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

RESOURCES FOR FAMILIES

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The Arc, 800-433-5255,

Home

California Children’s Services, 916-654-0499

California Department of Developmental Services, 916-654-1690,

http://www.dds.ca.gov

California Family Resource Centers, 800-515-BABY

California Regional Centers, 915-654-1958,

http://www.dds.ca.gov/rc/rclist.cfm

California’s Early Start Program, 800-515-BABY

Child Health and Disability Prevention Program, 916-875-7151,

http://www.dhs.cahwnet.gov/pcfh/cms/chdp

Early Start Resources, 800-869-4337

Exceptional Parent Magazine, 800-247-8080,

http://www.eparent.com

Family Voices, 888-835-5669,

http://www.familyvoices.org

National Childhood Technical Assistance System, 919-962-2001,

http://www.nectac.org

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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Funded by a grant from the California Department of Developmental Services

For more information, contact:

Center for Health Improvement

1330 21st Street, Suite 100

Sacramento, CA 95814

(916) 901-9645

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 and the Center for Health Improvement.

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