|
| ||||||||||||||||||||||||||||||||||||||||||||||||
PEDIATRICS Vol. 107 No. 5 May 2001, pp. 1155-1157
REVIEW ARTICLE:
Role of the Pediatrician in Family-Centered Early Intervention
Services
 |
ABSTRACT |
|---|
Top
Abstract
Background
Recommendation
Conclusion
References
|
|---|
There is growing evidence that early intervention services have had a positive influence on the developmental outcome of children with established disabilities or those considered "at risk" for disabilities and their families. Various federal and state statutes now mandate that community-based, coordinated, multidisciplinary, family-centered programs be established, which are accessible to serve children and families in need. The pediatrician, in close collaboration with the family and the early intervention team, plays a critical role in guiding the clinical and developmental aspects of the early intervention services provided. This role can be best served in the context of providing a medical home for children with special health care needs. The purpose of this statement is to assist the pediatrician in assuming a proactive role on the multidisciplinary team providing early intervention services.
Early intervention services are designed to meet the
developmental needs of children from birth to 3 years of age who have a
developmental delay in physical, cognitive, communication, social, emotional, or adaptive development or have a diagnosed condition that
has a high probability of resulting in developmental delay. States must
offer all early intervention services to children with developmental
delay or those with an established disability; they have the option of
serving those at risk of having poor developmental outcomes. The type
and extent of services varies on the basis of the Individualized Family
Service Plan (IFSP). However, by federal statute all must include but
not be limited to assisted technology, audiology, family training
counseling and home visits, health services, medical services for
diagnosis and medical evaluation, nursing services, nutrition,
occupational therapy, physical therapy, psychological services, service
coordination, social services, special intervention, speech and
language pathology, transportation and related costs, and vision
services needed by these children and their families. They must be
provided in conformity with the IFSP.1
These services have been developed because early intervention is
recognized to be important if children with disabilities are to achieve
their full potential. During the past 25 years, Congress and
administrations have taken a series of steps to promote improved infant
and child developmental outcomes through early intervention services.
The first major federal legislation was passed in 1975 when Public Law
(PL) 94-142, The Education of the Handicapped Act, established the
right of children between 5 and 18 years to a free, appropriate public
education and related services; services to children aged 3 to 5 years
were optional. This law was amended in 1986 as PL 99-457, which
supported the development of early intervention programs for infants
and children with disabilities or developmental delays, from birth to 3 years. The law also mandated a free and appropriate public education
provided by the states' education departments for 3- to 5-year-olds by
the 1990-1991 school year. It established guidelines and regulations
for the development of far-reaching, coordinated, multidisciplinary
services for these children and their families. In 1990, it was again
amended as PL 101-476, The Individuals With Disabilities Education Act
(IDEA). One component, Part H, the Program for Infants and Toddlers
With Disabilities, required states to develop and implement
community-based systems of care that are coordinated, family centered,
and culturally competent, with greater interagency collaboration. It
requires early identification and provision of services to
infants and toddlers with developmental delays and those with
established conditions (conditions with a high probability of
developmental delay occurring), and at state's option, those who would
be at risk of experiencing developmental delay if early intervention services were not provided. It required that the identified children be
referred, free of charge, for a comprehensive, multidisciplinary evaluation by a team who, with the family, decides which services are
needed. These are listed on the IFSP and reevaluated at least annually.
A service coordinator is appointed who helps the family access them.
Most recently, The IDEA Amendment of 1997, PL 105-17 (Part C, formerly
Part H), encouraged the states who did not serve the at-risk population
to track and monitor these children so that they can be referred when
needed.2,3
Until 3 decades ago, in the absence of laws mandating access to
educational services for all children regardless of the degree of
disability, many children with developmental disabilities and their
families had few choices, except either state hospital-sponsored custodial care or an isolated homebound existence. Since then, much has
been accomplished in the field of health care and special education for
children with disabilities. Recent advances in medical expertise and
technology have improved the developmental potential, health, and
survival rate of infants and children with special health care needs.
These advances have enabled these children to participate more fully in
public education. Recently, neurocognitive research has demonstrated
that there are optimal periods for all children during which the brain
is particularly efficient at specific types of learning. Well-designed,
timely early intervention can improve the outcome and the quality of
life of young children at risk of developing cognitive, social, or
emotional impairment.4-6 The early childhood years
present a singular opportunity to influence lifelong development and to
prevent or minimize developmental problems in children with
disabilities or at risk of developing disabilities.
Coordinated, community-based, multidisciplinary programs for early
intervention have been established for children and their families. The
types and severity of the conditions affecting children with
disabilities are varied, and so are the intensity and extent of the
services provided. Despite these differences, however, studies that
evaluated the efficacy of early intervention programs show
that from a public policy standpoint, they have achieved much. Recent
literature documents that these programs may be effective not only in
improving some individual child cognitive outcomes, but can also lead
to important improvements in family function.7-10 Results
of The Early Intervention Collaborative Study showed that, despite the
great variability of child and family function and of the types and
extent of services offered, most young children in early
intervention programs improved in all domains of
functioning.11 The Infant Health and Development Program
(IHDP) is a multicentered, randomized, controlled, nationwide study of
low birth weight premature infants and their families who received
coordinated health and developmental services for the first 3 years of
life. Those who had received comprehensive, multidisciplinary early
intervention services scored higher at 3 years of age on tests of
mental abilities than those who received health services alone. The
cognitive and academic achievement in the higher birth weight group was
maintained at 8 years of age.1,12-16 School outcomes of
children in the intervention group were consistently better than those
who did not receive intervention. Several aspects of family development
were also enhanced by the IHDP. The Carolina Abecedarian Project
recently showed that "poor children who received early educational
intervention starting in infancy had higher scores on mental, reading,
and math tests than children who didn't receive the intervention and,
more importantly, these effects persisted until at least age
21."17
The family, as the primary caregiver, plays a vital role in ensuring
the health and well-being of children. The focus of health and
developmental services has evolved from a child-centered, traditional
"medical" model to a family-centered "developmental" model.
That is, it also takes into consideration the important contributions
of the family unit, the stressors that affect families (be they social,
financial, and/or psychological), and the ability of families to adapt
to new challenges. The pediatrician, as the central figure in the
medical home, is attuned to special family circumstances that influence
children with special health care needs. He or she must involve family
members in all areas of planning, delivery, and evaluation of health
and developmental services. Communication between parents and
pediatricians should be open, comprehensible, culturally sensitive, and
sincere, showing mutual respect.17,18
The pediatrician, because of his or her unique training, interest, and
commitment, should be a vital member of the early intervention health
team. He or she is the most appropriate health care consultant, coordinator, and source of referral for clinical services for children
with special health care needs and their families. Whether in a local
pediatrician's office or in a multispecialty referral center, these
children and their families should be offered comprehensive care
that is family centered, continuous, compassionate, and culturally sensitive. Regardless of the pediatric health care setting, this care
can be provided in accordance with the precepts of the medical home.19-21
The role of the pediatrician caring for children with disabilities
and their families should include:
BACKGROUND
Top
Abstract
Background
Recommendation
Conclusion
References
STATEMENT OF THE PROBLEM
NEW INFORMATION
RECOMMENDATIONS
Top
Abstract
Background
Recommendation
Conclusion
References
| |
CONCLUSION |
|---|
|
Top
Abstract
Background
Recommendation
Conclusion
References
|
|---|
By providing leadership for the medical home and as a member of the early intervention team, pediatricians can help set the standard of care in their communities for children with disabilities or those at risk of developmental delays. Through ongoing consultation with rehabilitation therapists, services and therapy prescriptions should be provided with specific treatment goals in mind. The treatment plans should be regularly and periodically reviewed, revised, or renewed if indications show that they are accomplishing their intended purpose.
It is vital for pediatricians to be sensitive to their role as the medical care provider on the team promoting rehabilitative therapies for children with disabilities. An environment should be created in which the physician, family, and other service providers work together in a caring, collegial, and compassionate atmosphere that ensures that early intervention services are of high quality, accessible, continuous, comprehensive, and culturally competent.
Committee on Children With Disabilities, 2000-2001
Adrian D. Sandler, MD, Chairperson
Dana Brazdziunas, MD
W. Carl Cooley, MD
Lilliam González de Pijem, MD
David Hirsch, MD
Theodore A. Kastner, MD
Marian E. Kummer, MD
Richard D. Quint, MD, MPH
Elizabeth S. Ruppert, MD
Liaison Representatives
William C. Anderson
Social Security Administration
Bev Crider
Family Voices
Paul Burgan, MD, PhD
Social Security Administration
Connie Garner, RN, MSN, EdD
US Department of Education
Merle McPherson, MD
Maternal and Child Health Bureau
Linda Michaud, MD
American Academy of Physical Medicine and Rehabilitation
Marshalyn Yeargin-Allsopp, MD
Centers for Disease Control and Prevention
Section Liaisons
J. Daniel Cartwright, MD
Section on School Health
Chris P. Johnson, MEd, MD
Section on Children With Disabilities
Staff
Karen Smith
| |
FOOTNOTES |
|---|
The recommendations in this statement do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.
| |
ABBREVIATIONS |
|---|
IFSP, Individualized Family Service Plan; PL, Public Law; IDEA, Individuals With Disabilities Education Act; IHDP, Infant Health and Development Program.
| |
REFERENCES |
|---|
|
Top
Abstract
Background
Recommendation
Conclusion
References
|
|---|
- The Individuals with Disabilities Education Act Amendments, PL 105-17 (1997) (codified as 20 USC §1431-§1445)
- Danaher J, Guadagno N, eds. Part C Updates: Third in a Series of Updates on Selected Aspects of the Program for Infants and Toddlers With Disabilities, (Part C) of IDEA. Chapel Hill, NC: National Early Childhood Technical Assistance System; 1998
- Shackelford J. Providing early services to children with special needs and their families. In: Health Services for Young Children Under IDEA. Chapel Hill, NC: National Early Childhood Technical Assistance System; May 1994: Paper No. 1
- Shore R. Rethinking the Brain: New Insights Into Early Development. New York, NY: Families and Work Institute; 1997
- Wynder EL Introduction to the report on the conference on the `critical' period of brain development. Prev Med 1998; 27:166-167 [CrossRef][Medline]
- Black JE How a child builds its brain: some lessons from animal studies of neural plasticity. Prev Med 1998; 27:168-171 [CrossRef][Medline]
- Guralnick MJ, ed. The Effectiveness of Early Intervention. Baltimore, MD: PH Brookes Publishing Co; 1997
- Bennett FC, Guralnick MJ Effectiveness of developmental intervention in the first five years of life. Pediatr Clin North Am 1991; 38:1513-1528 [Medline]
- Berlin LJ, Brooks-Gunn J, McCarton CM, McCormick MC The effectiveness of early intervention: examining risk factors and pathways to enhanced development. Prev Med 1998; 27:238-245 [CrossRef][Medline]
- Majnemer A Benefits of early intervention for children with developmental disabilities. Sem Pediatr Neurol 1998; 5:62-69
- Shonkoff JP, Houser-Cram P, Krauss M, et al. Development of Infants With Disabilities and Their Families: Implications for Theory and Service Delivery. Chicago, IL: University of Chicago Press; 1992
-
Ramey CT,
Bryant DM,
Wasik, BH, Sparling JJ, Fendt KH, LaVange LM
Infant Health and Development Program for low birth weight, premature
infants: program elements, family participation, and child
intelligence.
Pediatrics
1992;
89:454-465
[Abstract/Free Full Text] -
Brooks-Gunn J,
McCarton CM,
Casey PH,
Early intervention in low
birthweight premature infants: results through age 5 years from the
Infant Health and Development Program.
JAMA
1994;
272:1257-1262
[Abstract/Free Full Text] -
McCarton CM,
Brooks-Gunn J,
Wallace IF,
Results at age 8 years
of early intervention for low birth weight premature infants: The
Infant Health and Development Program.
JAMA
1997;
277:126-132
[Abstract/Free Full Text] - McCormick MC, McCarton CM, Brooks-Gunn J, Belt P, Gross RT The Infant Health and Development Program: interim summary. J Dev Behav Pediatr 1998; 19:359-370 [Medline]
- Holloman HA, Scott KC Influence of birth weight on educational outcomes at age 9: the Miami site of the Infant Health and Development Program. J Dev Behav Pediatr 1998; 19:404-410 [Medline]
- Early Learning, Later Success. The Abecederian Project. Executive Summary. Available at: http://www.fpg.unc.edu/~abc/embargoed/executive_summary.htm. Accessed October 1999;19
- Egg Harbor Family Summit, National Coalition for Family Leadership. The ABC's of Managed Care. Standards and Criteria for Children With Special Health Care Needs. Lansing, MI: Michigan Department of Health; 1996
- Able-Boone E Ethics and early intervention: toward a more relationship-focused intervention. Infants Young Child 1996; 9:13-21
-
American Academy of Pediatrics, Committee on Children With
Disabilities
The role of the pediatrician in prescribing therapeutic
services for children with motor disabilities.
Pediatrics
1996;
98:308-310
[Abstract/Free Full Text] - American Academy of Pediatrics. The Medical Home and Early Intervention: Linking Services for Children With Special Needs. Elk Grove Village, IL: American Academy of Pediatrics; 1995
Pediatrics (ISSN 0031 4005). Copyright ©2001 by the American Academy of Pediatrics
The following policy statement is a revision:
- Role of the Medical Home in Family-Centered Early Intervention Services
- Council on Children With Disabilities
Pediatrics 2007 120: 1153-1158.[Abstract] [Full Text] [PDF]
This article has been cited by other articles:
 |
|
 |
|
  Y.-T. Wu, K.-I. Tsou, C.-H. Hsu, L.-J. Fang, G. Yao, S.-F. Jeng, and For Taiwan Infant Developmental Collaborative Stud Brief Report: Taiwanese Infants' Mental and Motor Development 6 24 Months J. Pediatr. Psychol., January 1, 2008; 33(1): 102 - 108. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 M. Concepcion, S. Murphy, and D. Canham School Nurses' Perceptions of Family-Centered Services: Commitment and Challenges The Journal of School Nursing, December 1, 2007; 23(6): 315 - 321. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 V. B. Gupta, On behalf of the AAP Autism Expert Panel, P. H. Lipkin, and On behalf of the AAP Policy Revision Committee on Early Autism Identification: In Reply Pediatrics, June 1, 2007; 119(6): 1253 - 1254. [Full Text] [PDF]
|
|
|
|
 |
|
 B O Olusanya, L M Luxon, and S L Wirz Ethical issues in screening for hearing impairment in newborns in developing countries. J. Med. Ethics, October 1, 2006; 32(10): 588 - 591. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 R. C. Tervo Identifying Patterns of Developmental Delays Can Help Diagnose Neurodevelopmental Disorders Clinical Pediatrics, July 1, 2006; 45(6): 509 - 517. [PDF]
|
|
|
|
|
|
Council on Children With Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee, and Medical Home Initiatives for Children With Special Identifying Infants and Young Children With Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening Pediatrics, July 1, 2006; 118(1): 405 - 420. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
Council on Children With Disabilities Care Coordination in the Medical Home: Integrating Health and Related Systems of Care for Children With Special Health Care Needs Pediatrics, November 1, 2005; 116(5): 1238 - 1244. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
Committee on Community Health Services The Pediatrician's Role in Community Pediatrics Pediatrics, April 1, 2005; 115(4): 1092 - 1094. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
R. C. Sneed, W. L. May, and C. Stencel Policy Versus Practice: Comparison of Prescribing Therapy and Durable Medical Equipment in Medical and Educational Settings Pediatrics, November 1, 2004; 114(5): e612 - e625. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
W. C. Cooley and and Committee on Children with Disabilities Providing a Primary Care Medical Home for Children and Youth With Cerebral Palsy Pediatrics, October 1, 2004; 114(4): 1106 - 1113. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 J. Williams and C. A. Holmes Improving the Early Detection of Children with Subtle Developmental Problems J Child Health Care, March 1, 2004; 8(1): 34 - 46. [Abstract] [PDF]
|
|
|
|
 |
|
 C. A. Peterson, S. Wall, H. A. Raikes, E. E. Kisker, M. E. Swanson, J. Jerald, J. B. Atwater, and Wei Qiao Early Head Start: Identifying and Serving Children with Disabilities Topics in Early Childhood Special Education, January 1, 2004; 24(2): 76 - 88. [Abstract] [PDF]
|
|
|
|
|
|
Committee on Pediatric Workforce Nondiscrimination in Pediatric Health Care Pediatrics, November 1, 2001; 108(5): 1215 - 1215. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 S. L. Hyman, P. M. Rodier, and P. Davidson Pervasive Developmental Disorders in Young Children JAMA, June 27, 2001; 285(24): 3141 - 3142. [Full Text] [PDF]
|
|
|
|
|
|
Committee on Children With Disabilities Technical Report: The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children Pediatrics, May 1, 2001; 107(5): 85e - 85. [Abstract] [Full Text]
|
|
| ||||||||||||||||||||||||||||||||||||||||||||||||