A variety of factors impacts the transition from childhood to adulthood for persons with special health care needs or disabilities. Among these are the barriers in care coordination associated with our bifurcated health care delivery system in which pediatric medicine does not smoothly link up with the medical care received by adults. After reviewing the literature, we discuss the strong case to be made for reconceptualizing the medical home model, introducing a life span perspective to resolve the postpediatrician transition. Rather than a “hand off” from pediatrician to adult provider, this approach provides a pathway to fully integrating this patient population into our evolving health care system.
AanesenM.LotheringtonA. T.OlsenF. (2011). Smarter elder care? A cost-effectiveness analysis of implementing technology in elder care. Health Informatics Journal, 17, 161–172.
AysolaJ.John OravE.AyanianJ. Z. (2011). Neighborhood characteristics associated with access to patient-centered medical homes for children. Health Affairs, 30, 2080–2089.
4.
BendixenR. M.LevyC. E.OliveE. S.KobbR. F.MannW. C. (2009). Cost effectiveness of a telerehabilitation program to support chronically ill and disabled elders in their homes. Telemedicine and E-Health, 15(1), 31–38.
BershadskyJ.TaubS.EngleJ.MoseleyC. R.LakinK. C.StancliffeR. J.BradleyV. (2012). Place of residence and preventive health care for intellectual and developmental disabilities services recipients in 20 states. Public Health Reports, 127, 475–485.
7.
BlumR. W.HirschD.KastnerT. A.QuintR. D.SandlerA. D.AndersonS. M.ZiringP. (2002). A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110, 1304–1306.
8.
CooleyW. C.SagermanP. J. (2011). Clinical report-supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128, 182–200.
9.
DeJongG.PalsboS. E.BeattyP. W.JonesG. C.KrollT.NeriM. T. (2002). The organization and financing of health services for persons with disabilities. Milbank Quarterly, 80, 261–301.
10.
DokaK.LavinC. (2003). The paradox of ageing with developmental disabilities: Increasing needs, declining resources. Ageing International, 28, 135–154.
11.
FeinbergL. (2012). Moving toward person and family centered care. AARP, p. 60.
12.
GolnikA.ScalP.WeyA.GaillardP. (2012). Autism-specific primary care medical home intervention. Journal of Autism and Developmental Disorders, 42, 1087–1093.
13.
HaitE.ArnoldJ. H.FishmanL. N. (2006). Educate, communicate, anticipate—Practical recommendations for transitioning adolescents with IBD to adult health care. Inflammatory Bowel Diseases, 12, 70–73.
14.
HarbrechtM. G.LattsL. M. (2012). Colorado’s patient-centered medical home pilot met numerous obstacles, yet saw results such as reduced hospital admissions. Health Affairs, 31, 2010–2017. doi:10.1377/hlthaff.2012.0359
15.
HerzerM.GoebelJ.CortinaS. (2010). Transitioning cognitively impaired young patients with special health needs to adult-oriented care: Collaboration between medical providers and pediatric psychologists. Current Opinion in Pediatrics, 22, 668–672.
16.
HomerC. J.KlatkaK. K.RommD.KuhlthauK.BloomS.NewacheckPerrinJ.M. (2008). A review of the evidence for the medical home for children with special health care needs. Pediatrics, 122, e922–e937.
17.
IezzoniL. I. (2011). Eliminating health and health care disparities among the growing population of people with disabilities. Health Affairs, 30, 1947–1954.
18.
KennedyA.SawyerS. (2008). Transition from pediatric to adult services: Are we getting it right?Current Opinion in Pediatrics, 20, 403–409.
19.
KleinmanA. (2013). From illness as culture to caregiving as moral experience. New England Journal of Medicine, 368, 1376–1377.
20.
KoganM. D.StricklandB. B.BlumbergS. J.SinghG. K.PerrinJ. M.Van DyckP. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122, e1149–e1158.
21.
KuhlthauK. A.BloomS.Van CleaveJ.KnappA. A.RommD.KlatkaK.PerrinJ. M. (2011). Evidence for family-centered care for children with special health care needs: A systematic review. Academic Pediatrics, 11, 136–143.
22.
KuoD. Z.CohenE.AgrawalR.BerryJ. G.CaseyP. H. (2011). A national profile of caregiver challenges among more medically complex children with special health care needs. Archives of Pediatrics & Adolescent Medicine, 165, 1020–1026.
23.
LindA.ArchibaldN. (2012). Structuring new service delivery models for individuals with intellectual and developmental disabilities. Center for Health Care Strategies. Retrieved from http://familiesusa2.org/assets/pdfs/toolkit/CHCS-IDD.pdf
24.
LotsteinD. S.GhandourR.CashA.McGuireE.StricklandB.NewacheckP. (2009). Planning for health care transitions: Results from the 2005-2006 National Survey of Children With Special Health Care Needs. Pediatrics, 123, e145–e152.
25.
LotsteinD. S.KuoA. A.StricklandB.TaitF. (2010). The transition to adult health care for youth with special health care needs: Do racial and ethnic disparities exist?Pediatrics, 126, S129–S136.
26.
LugasiT.AchilleM.StevensonM. (2011). Patients’ perspective on factors that facilitate transition from child-centered to adult-centered health care: A theory integrated metasummary of quantitative and qualitative studies. Journal of Adolescent Health, 48, 429–440.
27.
LynnJ.StraubeB. M.BellK. M.JencksS. F.KambicR. T. (2007). Using population segmentation to provide better health care for all: The “bridges to health” model. Milbank Quarterly, 85, 185–208.
28.
MadgeS.BryonM. (2002). A model for transition from pediatric to adult care in cystic fibrosis. Journal of Pediatric Nursing, 17, 283–288.
29.
MaengD. D.GrahamJ.GrafT. R.LibermanJ. N.DermesN. B.TomcavageJ.SteeleG. D.Jr. (2012). Reducing long-term cost by transforming primary care: Evidence from Geisinger’s medical home model. American Journal of Managed Care, 18, 149–155.
30.
McManusM. A.NewacheckP. W.GreaneyA. M. (1990). Young adults with special health care needs: Prevalence, severity, and access to health services. Pediatrics, 86, 674–682.
31.
McManusM. A.PollackL. R.CooleyW.McAllisterJ. W.LotsteinD.StricklandB.MannM. Y. (2013). Current status of transition preparation among youth with special needs in the United States. Pediatrics, 131, 1090–1097.
32.
MichaudP. A.SurisJ. C.VinerR. (2004). The adolescent with a chronic condition. part II: Healthcare provision. Archives of Disease in Childhood, 89, 943–949.
33.
National Quality Forum. (2012). Measuring healthcare quality for the dual eligible beneficiary population: Final report to HHS. Washington, DC: Author.
34.
National Survey of Children With Special Health Care Needs. (2009–2010). Data query from the child and adolescent health measurement initiative. Available from http://www.childhealthdata.org
35.
NishikawaB. R.DaalemanT. P.NageswaranS. (2011). Association of provider scope of practice with successful transition for youth with special health care needs. Journal of Adolescent Health, 48, 209–211.
36.
OkumuraM. J.KerrE. A.CabanaM. D.DavisM. M.DemonnerS.HeislerM. (2010). Physician views on barriers to primary care for young adults with childhood-onset chronic disease. Pediatrics, 125, e748–e754.
37.
PalsboS. E.DiaoG. (2010). The business case for adult disability care coordination. Archives of Physical Medicine and Rehabilitation, 91, 178–183.
38.
PalsboS. E.MastalM. F.O’donnellL. T. (2006). Disability care coordination organizations: Improving health and function in people with disabilities. Lippincott’s Case Management, 11, 255–264.
39.
PatelU. B.RathjenC.RubinE. (2012). Horizon’s patient-centered medical home program shows practices need much more than payment changes to transform. Health Affairs, 31, 2018–2027. doi:10.1377/hlthaff.2012.0392
40.
RaskasR. S.LattsL. M.HummelJ. R.WennersD.LevineH.NussbaumS. R. (2012). Early results show WellPoint’s patient-centered medical home pilots have met some goals for costs, utilization, and quality. Health Affairs, 31, 2002–2009. doi:10.1377/hlthaff.2012.0364
41.
ReissJ. G.GibsonR. W.WalkerL. R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, 115, 112–120. doi:10.1542/peds.2004-1321
42.
RoerbroeckM. E.JahnsenR.CaronaC.KentR. M.ChamberleinM. A. (2009). Adult outcomes and lifespan issues for people with childhood-onset physical disability. Developmental Medicine & Child Neurology, 51, 670–678. doi:10.1111/j.1469-8749.2009.03322.x
43.
RomaireM. A.BellJ. F.GrossmanD. C. (2012a). Health care use and expenditures associated with access to the medical home for children and youth. Medical Care, 50, 262–269.
44.
RomaireM. A.BellJ. F.GrossmanD. C. (2012b). Medical home access and health care use and expenditures among children with special health care needs. Archives of Pediatrics & Adolescent Medicine, 166(4), 323–330.
45.
RosenD. (1995). Between two worlds: Bridging the cultures of child health and adult medicine. Journal of Adolescent Health, 17, 10–16.
46.
SawyerS. M.AroniR. A. (2005). Self-management in adolescents with chronic illness. what does it mean and how can it be achieved?Medical Journal of Australia, 183, 405–409.
47.
ScalP.IrelandM. (2005). Addressing transition to adult health care for adolescents with special health care needs. Pediatrics, 115, 1607–1612.
48.
The SCAN Foundation. (2012, September). Achieving person-centered care: The five pillars of system transformation (Policy Brief No. 7). Long Beach, CA: Author.
49.
ShattuckP. T.WagnerM.NarendorfS.SterzingP.HensleyM. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatrics & Adolescent Medicine, 165(2), 141–146.
50.
StarfieldB.ShiL. (2004). The medical home, access to care, and insurance: A review of evidence. Pediatrics, 113, 1493–1498.
51.
StricklandB. B.SinghG. K.KoganM. D.MannM. Y.Van DyckP. C.NewacheckP. W. (2009). Access to the medical home: New findings from the 2005-2006 National Survey of Children With Special Health Care Needs. Pediatrics, 123, e996–e1004.
52.
StricklandB.McPhersonM.WeissmanG.Van DyckP.HuangZ. J.NewacheckP. (2004). Access to the medical home: Results of the National Survey of Children With Special Health Care Needs. Pediatrics, 113, 1485–1492.
53.
U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau (2007). The National Survey of Children with Special Health Care Needs Chartbook 2005–2006.Rockville, MD. U.S. Department of Health and Human Services. Source: http://mchb.hrsa.gov/cshcn05/MI/NSCSHCN.pdf
54.
VenkatA.JauchE.RussellW. S.CristC. R.FarellR. (2012). Care of the patient with an autism spectrum disorder by the general physician. Postgraduate Medical Journal, 88, 472–481.
55.
ViolaD.ArnoP. (2012). Long term care planning for individuals with developmental disabilities. In TulleyR.CrewsJ (Eds.), The multiple dimensions of caregiving and disability (pp. 169–183). New York, NY: Springer.
56.
WarfieldM. E.GulleyS. (2006). Unmet need and problems accessing specialty medical and related services among children with special health care needs. Maternal and Child Health Journal, 10, 201–216.
57.
WeedonD.CarboneP.BilderD.O’BrienS.DoriusJ. (2012). Building a person-centered medical home: Lessons from a program for people with developmental disabilities. Journal of Health Care for the Poor and Underserved, 23, 1600–1608.
58.
WhiteP. H.BlumR. W. (2002). Access to health care: Health insurance considerations for young adults with special health care needs/disabilities. Pediatrics, 110, 1328–1335.
59.
WilliamsE. D.RedheadC. S. (2010). Public health, workforce, quality, and related provisions in the Patient Protection and Affordable Care Act (PPACA) [Congressional Research Service, 7–5700]. Washington, DC.
