Implementation and sustainability of statewide transition support services for youth with intellectual and physical disabilities

Journal of Pediatric Rehabilitation Medicine

Volumn 7, Issue 1, 2014, Pages 93-104

  Ciccarelli, Mary R ^a   Brown, Matthew W ^b   Gladstone, Erin B ^b   Woodward, Jason F ^c   Swigonski, Nancy L ^a  

^a INDIANA UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b INDIANA UNIVERSITY   (United States)

^c CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER   (United States)

Author keywords

Adolescent health services; consultation and referral; implementation science; intellectual disability; physical disability; program development; transition to adult care; youth with special health care needs

Indexed keywords

ADOLESCENT; ADOLESCENT DISEASE; ADULT; ARTICLE; AUTISM; CEREBRAL PALSY; CHILD; CONTROLLED STUDY; DEGENERATIVE DISEASE; DOWN SYNDROME; FEMALE; FOLLOW UP; HAPPY PUPPET SYNDROME; HEALTH CARE DELIVERY; HEALTH CARE FINANCING; HEALTH CARE NEED; HEALTH CARE POLICY; HEALTH PROMOTION; HOME HEALTH AGENCY; HUMAN; INTELLECTUAL IMPAIRMENT; INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH; MAJOR CLINICAL STUDY; MALE; OSTEOGENESIS IMPERFECTA; PATIENT CARE; PATIENT SATISFACTION; PEDIATRIC REHABILITATION; PHYSICAL DISABILITY; PRADER WILLI SYNDROME; PRIORITY JOURNAL; PROGRAM SUSTAINABILITY; QUALITY OF LIFE; SPINAL DYSRAPHISM; SYNDROME CHARGE; TETRASOMY; TRANSITION TO ADULT CARE; TRAUMATIC BRAIN INJURY; CHRONIC DISEASE; DISABLED PERSON; HEALTH SERVICE; INTELLECTUAL DISABILITY; ORGANIZATION AND MANAGEMENT; REHABILITATION; YOUNG ADULT;

ADOLESCENT; CHILD; CHRONIC DISEASE; DELIVERY OF HEALTH CARE; DISABLED PERSONS; FEMALE; HEALTH SERVICES FOR PERSONS WITH DISABILITIES; HUMANS; INTELLECTUAL DISABILITY; MALE; TRANSITION TO ADULT CARE; YOUNG ADULT;

EID: 84902355971     PISSN: 18745393     EISSN: 18758894     Source Type: Journal    
DOI: 10.3233/PRM-140274     Document Type: Article

References (38)

1. Perrin JM, Bloom SR, Gortmaker SL. The increase of childhood chronic conditions in the United States. JAMA. 2007; 297(24): 2755.
2. Shaw TM, DeLaet DE. Transition of adolescents to youth adulthood for vulnerable populations. Pediatrics in Review. 2010; 31(12): 497.
3. Shogren KA, Plotner AJ. Transition planning for students with intellectual disability, autism or other disabilities: Data from the National Longitudinal Transition Study 2. Intellectual and Developmental Disabilities. 2012; 50(1): 16.
4. Kelly A, Golnik A. Cady R. A medical home center: Specializing in the care of children with special health care needs of high intensity. Maternal and Child Health Journal. 2008; 12(5): 633.
5. Brachlow AE, Ness KK, McPheeters ML, Gurney JG. Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children's Health. Arch Pediatr Adolesc Med. 2007; 161(4): 399.
6. McManus M, Fox H, O'Connor K, Chapman T, MacKinnon J. Pediatric Perspectives and Practices on Transitioning Adolescents with Special Needs to Adult Health Care. Fact Sheet No. 8. The National Alliance (updated 2008 Oct; cited 2012 Sept 3) Available from http://thenationalalliance.org.
7. Scal P. Transition for youth with chronic conditions: primary care physicians' approaches. Pediatrics. 2002; 110: 1315.
8. Peter NG, Forke CM, Ginsburg KR, Schwarz DF. Transition from pediatric to adult care: internists' perspective. Pediatrics. 2009; 123(2): 417.
9. American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians- American Society of Internal Medicine. A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs. Pediatrics. 2002; 110(suppl): 1304.
10. Madon T, Hofman KJ, Kupfer L, Glass RI. Public health. Implementation science. Science. 2007; 318(5857): 1728.
11. Committee on Disability in America, MJ Field, AM Jette, editors. The Future of Disability in America. The National Academies Press, 2007.
12. Fixsen DL, Naoom SF, Blase KA, Friedman RM, Wallace F. Implementation Research: A Synthesis of the Literature. Tampa, FL: University of South Florida, Louis de la Parte Florida Mental Health Institute, The National Implementation Research Network (FMHI Publication #231), 2005.
13. National Survey of Children with Special Health Care Needs. NS-CSHCN 2005/06. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. (cited 2012 Sept 9) Available from www.childhealthdata.org.
14. Shipley LJ, Stelzner SM, Zenni EA, Hargunani D, O'Keefe J, Miller C, Alverson B, Swigonski N. Teaching community pediatrics to pediatric residents: Strategic approaches and successful models for education in community health and child advocacy. Pediatrics. 2005; 115(4): 1150.
15. Olsen DG, Swigonski NL. Transition to Adulthood: The Important Role of the Pediatrician. Pediatrics. 2004; 113(3): e159.
16. Oborn E. Barrett M, Prince K, Racko G. Balancing exploration and exploitation in transferring research into practice: A comparison of five knowledge translation entity archetypes. Implementation Science. 2013, 8: 104.
17. Duke NN, Scal PB. Adult care transitioning for adolescents with special health care needs: A pivotal role for family centered care. Matern Child Health J. 2011; 15(1): 98.
18. Cooley WC. Redefining primary pediatric care for children with special health care needs: The primary care medical home. Current Opinion in Pediatrics. 2004; 16(6): 680.
19. King GA, Tucker MA, Baldwin PJ, LaPorta JA. Bringing the Life Needs Model to life: Implementing a service delivery model for pediatric rehabilitation. Physical and Occupational Therapy in Pediatrics. 2006; 26 (1/2): 43.
20. World Health Organization International Classification of Functioning, Disability and Health (ICF). (cited 2012 Sept 3) Available at http://www.who.int/classifications/icf/en/.
21. Gordon JB, Colby HH, Bartelt T, Jablonski D, Krauthoefer ML, Havens P. A Tertiary Care-Primary Care Partnership Model for Medically Complex and Fragile Children and Youth With Special Health Care Needs. Arch Pediatr Adolesc Med. 2007; 161(10): 937.
22. Fordyce M, Bardole D, Romer L, Soghikian K, Fireman B. Senior Team Assessment and Referral Program-STAR. Journal of the American Board of Family Practice. 1997; 10(6): 398.
23. Wright K, Hazelett S, Jarjoura D, Allen K. The AD-LIFE trial: working to integrate medical and psychosocial care management models. Home Health Nurse. 2007; 25(5): 308.
24. Vyt A. Interprofessional and transdisciplinary teamwork in health care. Diabetes/Metabolism Research and Reviews. 2008; 24: S106.
25. Watson D, Abbott D, Townsley R. Listen to me, too! Lessons from involving children with complex healthcare needs in research about multi-agency services. Child: Care, health and development. 2007; 33(1): 90.
26. Woodward JF, Swigonski NL, Ciccarelli MR. Assessing the Health, Functional Characteristics, and Health Needs of Youth Attending a Noncategorical Transition Support Program. J of Adolescent Health. 2012; 51(3): 272.
27. Antonelli RC, Antonelli DM. Providing a medical home: The cost of care coordination services in a community-based general pediatric practice. Pediatrics. 2004; 113 (5 suppl): 1522.
28. Wilson DN, Haire A. Health care screening for people with mental handicap living in the community. British Medical Journal. 1990; 301(6765): 1379.
29. Beecham J, Sloper P, Greco V, Webb R. The costs of key worker support for disabled children and their families. Child: Care, Health and Development. 2007; 33(5): 611.
30. While A, Forbes A, Ullman R, Lewis S,Mathes L, Griffiths P. Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child: Care, Health and Development. 2004; 30(5): 439.
31. Liptak GS, Murphy NA. Council on Children with Disabilities. Providing a primary care medical home for children and youth with cerebral palsy. Pediatrics. 2011; 128(5): e1321.
32. Murphy NA, Carbone PS and the Council on Children with Disabilities. Clinical report: Parent-provider-community partnerships: Optimizing outcomes for children with disabilities. Pediatrics. 2011; 128(4): 795.
33. McAllister JW, Presler E, Cooley WC. Practice-based care coordination: A medical home essential. Pediatrics. 2007; 120(3): e723.
34. Schiff JS, Ricketts A. The Minnesota Medical Home Learning Collaborative: A step to improving care for Minnesota's children with special health care needs. Minnesota Medicine. 2006; 89(1): 51.
35. Scal P, Ireland M. Addressing transition to adult health care for adolescents with special health care needs. Pediatrics. 2005; 115(6): 1607.
36. Perrin JM. How can quality improvement enhance the lives of children with disabilities? Future of Children. 2012; 22(1): 149.
37. American Academy of Pediatrics Committee 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. 2005; 116(5): 1238.
38. Cooley WC, Sagerman PJ, American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011; 128(1): 182.