Access to genetic counseling for children with autism, down syndrome, and intellectual disabilities

Pediatrics

Volumn 124, Issue SUPPL. 4, 2009, Pages

  McGrath, Robert J ^a   Laflamme, David J ^a,b   Schwartz, Amy P ^a,c   Stransky, Michelle ^a   Moeschler, John B ^d,e  

^a UNIVERSITY OF NEW HAMPSHIRE   (United States)

^b NH Dept of Hlth and Human Services   (United States)

^c New England Genetics Collaborative   (United States)

^d DARTMOUTH MEDICAL SCHOOL   (United States)

^e CHILDREN S HOSPITAL AT DARTMOUTH   (United States)

Author keywords

Children with special health care needs; Genetic counseling; Health policy; Medical home

Indexed keywords

ARTICLE; AUTISM; CHILD; DOWN SYNDROME; FEMALE; GENETIC COUNSELING; HANDICAPPED CHILD; HEALTH CARE ACCESS; HEALTH CARE NEED; HEALTH CARE POLICY; HEALTH INSURANCE; HEALTH SURVEY; HUMAN; LOGISTIC REGRESSION ANALYSIS; MAJOR CLINICAL STUDY; MALE; MENTAL DEFICIENCY; PRIORITY JOURNAL;

AUTISTIC DISORDER; CHILD; DOWN SYNDROME; FEMALE; GENETIC COUNSELING; HEALTH BEHAVIOR; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH POLICY; HEALTH SERVICES ACCESSIBILITY; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; LOGISTIC MODELS; MALE; MENTAL RETARDATION; PATIENT-CENTERED CARE; UNITED STATES;

EID: 71749101475     PISSN: 00314005     EISSN: 10984275     Source Type: Journal    
DOI: 10.1542/peds.2009-1255Q     Document Type: Article

References (26)

1. National Society of Genetic Counselors' Definition Task Force; Resta R, Biesecker BB, Bennett RL, et al. Task force report: a new definition of genetic counseling. J Genet Couns. 2006;15(2):77-83
2. Simonoff E. Genetic counseling in autism and pervasive developmental disorders. J Autism Dev Disord. 1998;28(5):447-456 (Pubitemid 29101860)
3. American Academy of Pediatrics, Committee on Genetics. Health supervision for children with down syndrome. Pediatrics. 2001;107(2):442-449
4. Moeschler JB, Shevell M; American Academy of Pediatrics, Committee on Genetics. Clinical evaluation of the child with mental retardation or developmental delays. Pediatrics. 2006;117(6):2304-2316
5. GeneTests. Who should have a genetics consultation? Available at: www.genetests.org/servlet/ access?id=8888891&key=G8maQRj7kz2Sa& fcn=y&fwVO=L9&filename=/concepts/primer/primerwhoshould.html. Accessed November 4, 2008
6. Filipek PA, Accardo PJ, Ashwal S, et al. Practice parameter: screening and diagnosis of autism - report on the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology. 2000;55(4):468-479 (Pubitemid 30647241)
7. McConkie-Rosell A, Finucane B, Cronister A, Abrams L, Bennett RL, Pettersen BJ. Genetic counseling for fragile X syndrome: updated recommendations of the National Society of Genetic Counselors. J Genet Couns. 2005;14(4):249-270 (Pubitemid 41095420)
8. Pletcher B, Toriello H, Noblin S, et al. Indications for genetic referral: a guide for healthcare providers. Genet Med. 2007;9(6):385-389 (Pubitemid 46956481)
9. Wang G, Watts C. Genetic counseling, insurance status and elements of medical home: analysis of the National Survey of Children With Special Health Care Needs. Matern Child Health J. 2007;11(5):559-567 (Pubitemid 350055482)
10. Medical Home Initiatives for Children With Special Health Needs Project Advisory Committee. The medical home. Pediatrics. 2002;110(1 pt 1):184-186
11. Strickland B, McPherson M, Weissman G, van Dyck P, Huang ZJ, Newacheck P. Access to the medical home: results of the National Survey of Children With Special Health Care Needs. Pediatrics. 2004;113(5 suppl):1485-1492 (Pubitemid 38580669)
12. Porterfield S, McBride T. The effect of poverty and caregiver education on perceived need and access to health services among children with special health care needs. Am J Public Health. 2007;97(2):323-329 (Pubitemid 47279382)
13. Newacheck PW, McManus M, Fox HB, Hung YY, Halfon N. Access to health care for children with special health needs. Pediatrics. 2000;105(4 pt 1):760-766 (Pubitemid 30219522)
14. Starfield B, Shi L. The medical home, access to care, and insurance: a review of evidence. Pediatrics. 2004;113(5 suppl):1493-1498 (Pubitemid 38580670)
15. Mulvihill BA, Altarac M, Swaminathan S, Kirby R, Kulczycki A, Ellis D. Does access to a medical home differ according to child and family characteristics, including special-health-care-needs status, among children in Alabama? Pediatrics. 2007;119(suppl 1):S107-S113 (Pubitemid 46397954)
16. Rosenstock I. Historical origins of the health belief model. Health Educ Monogr. 1974;40(2):328-335
17. Blumberg SJ, Welch EM, Chowdhury SR, Upchurch HL, Parker EK, Skalland BJ. Design and operation of the National Survey of Children With Special Health Care Needs, 2005-2006. Vital Health Stat 1. 2008;(45):1-188
18. Kogan MD, Strickland BB, Newacheck PW. Building systems of care: findings from the National Survey of Children With Special Health Care Needs. Pediatrics. 2009;124(suppl 5):S333-S336
19. Centers for Disease Control, National Center for Health Statistics. National Survey of Children With Special Health Care Needs 2005-2006, interview questionnaire: questions c4q06-x02 and c4q06x02a. Available at: www.cdc.gov/nchs/data/slaits/interview-formatted-freqs.pdf. Accessed September 8, 2008
20. Centers for Disease Control, National Center for Health Statistics. National Survey of Children With Special Health Care Needs 2005-2006. Available at: www.cdc.gov/nchs/slaits/imputed-data.htm. Accessed September 8, 2008
21. Child and Adolescent Health Measurement Initiative. National Survey of Children With Special Health Care Needs 2005-2006 SPSS Codebook: Outcome #2 - Coordinated, Ongoing, Comprehensive Care Within a Medical Home. Data Resource Center for Child and Adolescent Health. 2008. Available at: http://cshcndata. org/ViewDocument. aspx?item=26. Accessed October 13, 2009
22. Haley J, Kenney G. Low-income uninsured children with special health care needs: why aren't they enrolled in public health insurance programs? Pediatrics. 2007;119(1):60-68 (Pubitemid 46397843)
23. Eisenberg JM, Power EJ. Transforming insurance coverage into quality health care: voltage drops from potential to delivered quality. JAMA. 2000;284(16):2100-2107
24. Oswald P, Bodurtha J, Willis J, Moore M. Underinsurance and key health outcomes for children with special health care needs. Pediatrics. 2007;119(2). Available at: www.pediatrics.org/cgi/content/full/119/2/e341
25. Chung PJ, Schuster MA. Access and quality in child health services: voltage drops. Health Aff (Millwood). 2004;23(5):77-87
26. Dorn S, Garrett B, Holahan J, Williams A. Medicaid, SCHIP and Economic Downturn: Policy Challenges and Policy Responses. Washington, DC: Kaiser Family Foundation; 2008