Pediatric Annals

guest editorial

Maris D Rosenberg, MD

Abstract

THIS ISSUE:

Therapeutic Approaches to Developmental Disabilities in Young Children

Abstract

THIS ISSUE:

Therapeutic Approaches to Developmental Disabilities in Young Children

It is estimated that developmental disorders affect about one in six children under 18 years in the United States.1 Therefore, in one's practice, pediatric primary care providers are likely to encounter delays related to motor disabilities, cognitive impairments, developmental language disorders, and autism spectrum disorders.2 Additional challenges are associated with managing problems, such as feeding, and behavioral disturbances, such as attention-deficit/ hyperactivity disorder (ADHD). Children with disabilities, as all children with special health care needs, require coordination among health, educational, and community resources.3,4

Pediatricians* are well aware of the concept of developmental surveillance,5,6 a critical component in the provision of a medical home to young children.7 The American Academy of Pediatrics (AAP) has endorsed an algorithm for developmental surveillance and screening that specifies routine surveillance at every well-child visit, with use of standardized screening instruments at regular intervals or at any point at which there is concern.810 Concerns may be raised by worried parents or based on observations that necessitate the initiation of a difficult dialogue with parents who have not recognized or acknowledged a problem. Once delays are noted, a process must begin assuring proper evaluation, access to interventions, provision of support/information to the family, and assessment of the child's progress during a period of time. Who can provide better oversight of this process than the primary pediatrician within the child's medical home? Suspicion of developmental delays or confirmation of medical conditions placing children at risk of delays entitle children, from birth, by law, to appropriate evaluation and intervention services as specified in the Individuals with Disabilities Education Act (IDEA)." Key components of IDEA involve the identification of children with disabilities through a comprehensive, multidisciplinary evaluation, the development of an individualized family service plan (IFSP) for children 0 to 3 years or an individualized education plan (IEP) for children 3 to 21 years, provision of educational and related services in natural settings/the least restrictive environment, and the parental right to due process in the formulation and implementation of the individualized plan.12

There are several important roles for the pediatrician under IDEA.12 In addition to provision of a medical home and appropriate screening, surveillance and diagnosis, the pediatrician must be knowledgeable about the referral process, the child's right to a multidisciplinary evaluation, and eligibility criteria for services. Furthermore, the pediatrician should participate in the multidisciplinary assessment by offering input to and receiv-

ing feedback from the assessment team. The need for communication between physicians and therapists has long been recognized.13 Such communication can assist pediatricians in providing proper counseling to parents regarding results of the child's evaluation, recommendations for treatment, and in setting realistic goals.

There are no universal guidelines for prescribing therapies among states, and barriers to access may exist in some settings.14 The pediatrician may be called upon to advocate for and prescribe specific rehabilitative therapies, as well as to review the progress of the child throughout time to determine if treatment should continue.15 The AAP specifies critical elements in prescribing therapies for children with motor disabilities, which include statement of the child's diagnosis and special precautions, specification of the type, frequency, and duration of therapy along with the designation of goals.16 This is not a simple task, because the pediatrician is asked to prescribe interventions outside the realm of his or her expertise, and it has been said that approving recommendations and prescriptions devised by others is "like signing a blank check."17 A survey of pediatricians in training and in practice demonstrated a relative lack of specific training and confidence in prescription of therapeutic interventions and durable medical equipment, as well as lack of experience in working as a member of a multidisciplinary team.17 Therefore, pediatricians must be educated about treatment regimens across disciplines. Variations in techniques, patient characteristics, and outcome criteria all contribute to the relative lack of an evidencebase for many interventions,16 rendering the task of prescribing all the more difficult.

Nowhere is the lack of consensus and evidence more apparent than in the use of complementary and alternative medicine (CAM) for treatment of developmental disabilities. Mass media bombard parents with claims of causes and cures, particularly the internet, which may offer parent education by "experts" of questionable authority. This is all too often appealing to parents who are frustrated and desperate to try to find help for their children. Studies indicate that the majority of parents of children on the autism spectrum, for example, use CAM.1820 Pediatricians must anticipate parents' curiosity and provide an open, supportive atmosphere for discussion of such interventions, assuring the parents that safety and efficacy are the primary concerns.

It is with all this in mind that this issue of Pediatric Annals is designed. It is a true multidisciplinary collaboration, much like the approach to diagnosis and management of young children with disabilities should be. It is my hope that the information provided will assist the pediatrician in the identification of at-risk children, assessment of therapeutic needs, ongoing monitoring of progress, and provision of information and support to families. Although this issue deals primarily with interventions for young children with disabilities, the principles outlined are applicable across the pediatric age spectrum. There is a need to continue to accumulate evidence to support interventions that are associated with functional outcomes representing a child's maximum potential and to assure access to such services for all eligible children.

*A note from the editors:

For the purposes of this discussion, the term "pediatrician" is meant to include all providers of pediatric primary care.

REFERENCES

1. Boyle CA, Decoufle P, Yeargin-AIlsopp M. Prevalence and health impact of developmental disabilities in U.S. children. Pediatrics. 1994;93(3):399-403.

2. American Academy of Pediatrics Committee on Children with Disabilities. Technical report: the pediatrician's role in the diagnosis and management of autistic spectrum disorders in children. Pediatrics. 2001;107(5):e85.

3. American Academy of Pediatrics Committee on Children with Disabilities. Care coordination: integrating health and related systems of care for children with special healthcare needs. Pediatrics. 1999:104(4 Pt 1):978-981.

4. American Academy of Pediatrics Council on Children with Disabilities. Care coordination in the medical home: Integrating health and related systems of care for children with special healthcare needs. Pediatrics. 2005;1 16(5):1238-1244.

5. Dworkin PH. Detection of behavioral, developmental, and psychosocial problems in pediatric primary care. Curr Opin Pediatr. 1 993 ;5(5):53 1-536.

6. American Academy of Pediatrics Committee on Children with Disabilities. Developmental Surveillance and Screening of Infants and Young Children. Pediatrics. 2001;108(1):192-195.

7. Medical Home Initiatives for Children with Special Needs Project Advisory Committee. The Medical Home. Pediatrics. 2002;1 10(1):184-186.

8. American Academy of Pediatrics Council on Children with Disabilities, Section on Developmental-Behavioral Pediatrics, Bright Futures Steering Committee, and Medical Home Initiatives for Children with Special Needs Project Advisory Committee. Identifying infants and young children with developmental disorders in die medical home: an algorithm for developmental surveillance and screening. Pediatrics. 2006;1 18(l):405-420.

9. Rudz D, Shevell MI, et al. Developmental screening. J Child Neurology. 2005;20:4-20.

10. Glascoe FP. Screening for developmental and behavioral problems. Ment Retard Dev Disabil Res Rev. 2005;11(3):173-179.

11. http://idea.ed.gov. Accessed July 12, 2007.

12. American Academy of Pediatrics Committee on Children with Disabilities. The pediatrician's role in the development and implementation of an individual education plan (IEP) and/or an individual family services plan (IFSP). Pediatrics. 1999;104(1 Pt 1):124-127.

13. Levine MS, Kliebhan L. Communication between physicians and physical and occupational therapists: a neurodevelopmentally-based prescription. Pediatrics. 1981;68(2):208-214.

14. American Academy of Pediatrics Committee on Children with Disabilities. Provision of related services for children with chronic disabilities. Pediatrics. 1993;92(6):879-881.

15. American Academy of Pediatrics Committee on Children with Disabilities. The role of the pediatrician in familycentered early intervention services. Pediatrics. 2001; 107(5): 1155-157.

16. Michaud LJ, American Academy of Pediatrics Committee on Children with Disabilities. Prescribing therapy services for children with motor disabilities. Pediatrics. 2004;113(6): 1836-1838.

17. Sneed RC, May WL, Stencel CS. Training of pediatricians in care of physical disabilities in children with special health needs: results of a two-state survey of practicing pediatricians and national resident training programs. Pediatrics. 2000;105(3 Pt 1):554-561.

18. Hanson E, Kalish LA, Bunce E, et al. Use of complementary and alternative medicine among children diagnosed with autism spectrum disorder. J Autism Dev Disorders. 2007;37(4):628-636.

19. Wong HH. Smith RG. Patterns of complementary and alternative medicine therapy use in children with autism spectrum disorders. J Autism Dev Disorders. 2006;36(7):901-909.

20. Harrington JW, Rosen L, Garnecho A1 Patrick PA. Parental perceptions and use of complementary and alternative medicine practices for children with autism spectrum disorders in private practice. J Dev Behav Pediatr. 2006;27(2 Suppl):S156-S161.

10.3928/0090-4481-20070801-02

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