References

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

43New 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.