References and sources consist of several categories – clinical studies from the academic medical literature, government reports and statistical profiles, New York State and federal government websites, organization websites, and interviews with experts in various fields related to children with medically fragile conditions.
Section 1 – Getting Started
1. McPherson M, Arango P, Fox H, et al. A new definition of children with special healthcare needs. Pediatrics.102:137–139, 1998.
2. Srivastava R, Stone BL, Murphy NA. Hospitalist care of the medically complex child. Pediatric Clinics of North America. 52(4):1165–1187, 2005.
3. U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal & Child Health Bureau
4. 2007 National Survey of Children’s Health Data; 2005/2006 National Survey of Children with Special Health Care Needs, Washington D.C.2010.
Section 2 – Planning for Transition
5. Got Transition, National Health Care Transition Center, Center for Medical & Home Improvement, June 2011.
6. Self Advocacy Association of New York State (SANYS) website.
7. Blum RWM, Garell D, Hodgman CH, Jorissen TW, et al Transition from child-centered to adult health-care systems for adolescents with chronic conditions. Journal of Adolescent Health 14 (7): 570-576,1993.
8. Interviews with Edwin Simpser MD, Chief Medical Officer, St. Mary’s Healthcare System for Children.
Section 3 – Creating a Health Profile
9. New York State Department of Health, “Hi Doc” Health Information Form
10. Parent to Parent of New York State, The HealthCare Notebook
11. Microsoft Corporation, Health Vault (Health Information Module)
12. Healthy Transitions NY, SUNY Upstate Medical Center
13. Interviews with Nienke Dosa MD, Associate Professor of Pediatrics, Center for Development, Behavior, and Genetics, SUNY Upstate Medical University, 2011
14. Westchester Institute for Human Development website
Section 4 – The Medical Home
15. Interviews with Nienke Dosa MD, Associate Professor of Pediatrics, Center for Development, Behavior, and Genetics, SUNY Upstate Medical University, 2011
16. Institute of Medicine, Primary Care: America’s Health in a New Era, Washington D.C.1996
17. American Academy of Pediatrics (AAP) website
18. Interviews with Edwin Simpser MD, Chief Medical Officer, St. Mary’s Healthcare System for Children, 2011.
19. Healthy Transitions NY, SUNY Upstate Medical Center
20. American Academy of Family Physicians (AAFP) website
21. Office For People With Developmental Disabilities (OPWDD) website
22. National Center for Medical Home Implementation website
23. National Health Care Transition Center website
Section 5—School and Education Transition
24. New York State Education Department website—Coordination of Transition Activities and Services.
25. New York Sate Department of Labor—Workforce Partnerships.
26. Adult Career and Continuing Education Services – Vocational Rehabilitation, or ACCES-VR, (formerly known as Vocational Educational Services for Individuals with Disabilities –VESID—web site
27. New York State Disabilities Advocacy Association & Network, Kathryn Cappella, Executive Director, 2011.
Section 6 – Health Insurance and Government Benefits
28. Centers for Disease Control and Prevention, National Health Interview Survey 2006-2008.
29. New York State Department of Health website —on waivers
30. Interviews regarding Medicaid waivers with St. Mary’s Healthcare System for Children professional staff – Donna McNamara, Assistant Vice President, Community Programs, and Nancy Zask, Director, Case Management.
31. Office For People With Developmental Disabilities (OPWDD) website
32. Patient Protection and Affordable Health Care Act, 2009, Healthcare.gov/law, 2011
33. New York State Insurance Department—ins.state.ny.us/health
34. Disability.gov website (federal government disability central website)
35. Socialsecurity.gov website (Social Security Administration)
36. CMS.gov website (Centers for Medicare and Medicaid Services)
Section 7 – Residential Options
37. New York State Department of Health—community care, nursing homes—website
38. Office For People With Developmental Disabilities (OPWDD) website
39. Cleveland Hospital for Children—website– Choosing a Nursing Home
Section 8 – Legal, Estate and Financial Planning
40. New York Developmental Disabilities Planning Council website–DDPC.ny.gov, Planning for the Future, 6th edition, Albany, NY, 2006.
41. Interviews regarding Trusts and Wills and Estate Planning with Vincent J. Russo, Special Needs Attorney and Managing Partner, Vincent J. Russo & Associates,
Westbury, NY.
42. New York State Department of Health—MOLST Form—website
Section 9 – Assistive Technology
43. New York State Education Department web site
44. New York State Disabilities Advocacy Association & Network, Kathryn Cappella, Executive Director, 2011.
45. Adult Career and Continuing Education Services – Vocational Rehabilitation, or ACCES-VR, (formerly known as Vocational Educational Services for Individuals with Disabilities –VESID—website
Section 10 – End of Life and Palliative Care
46. Interviews with Edwin Simpser MD, Chief Medical Officer, St. Mary’s Healthcare System for Children, 2011
47. Nemours Foundation website, End of Life Care for Children, 2011.
48. The Planetree website—Putting Patients First, 2011.
49. National Association of Social Workers (NASW)—website/document, Help Starts Here, 2010.
50. Get Palliative Care.org website
51. National Hospice and Palliative Care Organization, Caring Connections, 2011.