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The Patient Center Medical Home: Bridging Child-Oriented to Adult- Oriented Care for Children and Young Adults with Disabilities Deborah Viola, PhD Peter Arno, PhD

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Page 1: The Patient Center Medical Home: Bridging Child-Oriented ...€¦ · The Patient Center Medical Home: Bridging Child-Oriented to Adult-Oriented Care for Children and Young Adults

The Patient Center Medical Home: Bridging Child-Oriented to Adult-Oriented Care for Children and Young Adults with Disabilities

Deborah Viola, PhD

Peter Arno, PhD

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Prevalence of Children with Special Health Care Needs: US 7/ 30/ 12 3:57 PMNS- CSHCN Compare All Years: How many children/ youth have special health care needs?, Nationwide

Page 2 of 2http:/ / www.childhealthdata.org/ browse/ survey/ results?q= 1792&r= 1&t= 1&ta= 116

Edit Search Criteria

Compare States:

Select a State or Region

Return to single year data results

Change question, topic or survey

With funding and direction from the Maternal and Child Health Bureau, the National Survey of Children with Special Health Care Needs was conducted by the

Centers for Disease Control and Prevention’s National Center for Health Statistics. CAHMI is responsible for the analyses, interpretations, presentations and

conclusions included on this site.

Suggested citation format: National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health

Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved [mm/dd/yy] from www.childhealthdata.org.

The Data Resource Center for Child and Adolescent Health is a project of the Child and Adolescent Health Measurement Initiative (CAHMI) supported by

Cooperative Agreement 1-U59-MC06980-01 from the U.S. Department of Health and Human Services, Health Resources and Services Administration

(HRSA), Maternal and Child Health Bureau (MCHB). With funding and direction from MCHB, these surveys were conducted by the Centers for Disease

Control and Prevention’s National Center for Health Statistics. CAHMI is responsible for the analyses, interpretations, presentations and conclusions

included on this site.

© 2012 The Child and Adolescent Health Measurement Initiative

Sign up for E-updates About CAHMI Contact Us Site Map Accessibility Legal and Privacy Policy

2009/10 National Survey of Children with Special Health Care Needs; childhealthdata.org

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Prevalence of Children with Special Health Care Needs with Behavioral Issues: US 7/ 30/ 12 3:58 PMNS- CSHCN Compare All Years: Children whose special needs include ongoing emotional, behavioral or developmental issues, Nationwide

Page 2 of 2http:/ / www.childhealthdata.org/ browse/ survey/ results?q= 1820&r= 1&t= 1

Edit Search Criteria

Compare States:

Select a State or Region

Return to single year data results

Change question, topic or survey

With funding and direction from the Maternal and Child Health Bureau, the National Survey of Children with Special Health Care Needs was conducted by the

Centers for Disease Control and Prevention’s National Center for Health Statistics. CAHMI is responsible for the analyses, interpretations, presentations and

conclusions included on this site.

Suggested citation format: National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health

Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved [mm/dd/yy] from www.childhealthdata.org.

The Data Resource Center for Child and Adolescent Health is a project of the Child and Adolescent Health Measurement Initiative (CAHMI) supported by

Cooperative Agreement 1-U59-MC06980-01 from the U.S. Department of Health and Human Services, Health Resources and Services Administration

(HRSA), Maternal and Child Health Bureau (MCHB). With funding and direction from MCHB, these surveys were conducted by the Centers for Disease

Control and Prevention’s National Center for Health Statistics. CAHMI is responsible for the analyses, interpretations, presentations and conclusions

included on this site.

© 2012 The Child and Adolescent Health Measurement Initiative

Sign up for E-updates About CAHMI Contact Us Site Map Accessibility Legal and Privacy Policy

2009/10 National Survey of Children with Special Health Care Needs: childhealthdata.org

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Prevalence of Children in Need in the UK

2011:

390,300 children, equivalent to a rate of 343.3

per 10,000 children

Total of 736,400 episodes of need

education.gov.uk

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Transitioning and Health Care

“An increasing number of chronically ill children are

surviving into young adulthood. With over 85

percent of children with chronic illnesses (Betz, 1999)

and 90 percent of those with disabilities (Bloomquist

et al., 1998) surviving into adulthood, there is a

growing need for specialised care to ensure a

seamless transfer and transition from children’s to

adult health care services. There is also a need for

greater attention towards transition within mental

health services for 16 to 18 year olds.”

rcn.org.uk

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From the perspective of health care providers

Need “health care providers to have the knowledge and tools to screen,

diagnose and treat the whole person

with a disability with dignity.”

U.S. Department of Health and Human Services. 2005. Office of the Surgeon General. Surgeon General’s call t o act ion to improve the health and wellness of persons with disabilities. Rockville, MD.

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US outcomes: health care from physician’s perspective

“A total of 57% of the general pediatricians

reported that it was easy to communicate with an adult provider to transition their young adult

patients to adult-based care, and 62% of internists reported that it was easy to communicate with a pediatric provider about

transitioning.”

Okumura, M.J., E.A. Kerr, M.D. Cabana, M.M. Davis, S. Demonner, and M. Heisler. 2010. Physician Views on Barriers to Primary Care for Young Adults with Childhood-Onset Chronic Disease. Pediat rics 125:e748

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US: Satisfaction with Care

Variable CSHCN with

ASD %

CSHCN with

other EBD problems %

Other

CSHCN %

Any unmet need for specific care services

30.9 25.4 12.3

Any unmet need for family support services

19.3 10.7 1.8

Child had delayed or foregone care

13.8 12.2 6.8

Child had no usual source of care

5.6 7.0 5.2

Child had no personal physician or nurse

5.7 7.2 6.2

Difficulty receiving referrals 31.2 27.1 18.1

Kogan, M.D., B.B. Strickland, S.J. Blumberg, G.K. Singh, J.M. Perrin, and P.C. van Dyck. 2008. A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005-2006. Pediat rics 122:6:e1149-e1158.)

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Institutional Bias

“Historically, people with disabilities have been severely disadvantaged in accessing private health insurance … Medicaid’s institutional bias…perhaps kept too many people with disabilities in nursing homes, despite clear consumer preference for and the cost-effectiveness of community living.”

2011: 221 children in secure homes in UK

Locked environment

Restrict personal liberties

Kuo et al 2011; education.gov.uk

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Benefits of community living

Community-based services are “critical for optimal medical, developmental, and service outcomes.”

Healthreform.gov

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Transition Barriers

2 distinct health care systems

Organization of care

Effective communication

Physical barriers

Social barriers

Disease-specific barriers

Lack of awareness

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The Affordable Care Act

“The Affordable Care Act advances

community living by extending the Money Follows the Person program, improving the

Medicaid home-and-community based services (HCBS) option, and creating new options and incentives making it easier for

states to provide HCBS– including Community First Choice.”

healthreform.gov

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UK: National Health Services

2 sections:

Primary Care

‘frontline’

Independent contractors

Secondary Care

‘Acute Health Care’

disabled-world.com

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Medical Homes in the UK

“In 2001, the United Kingdom’s National Health

Services contracted with general practitioners to provide medical home services to patients.

By 2005 these contracts had improved the quality of care. The rate of improvement further accelerated when financial incentives were

added in 2005.”

Rosenthal TC. The medical home, access to care, and insurance: a review of evidence. Pediat rics. 2004;113(5)(Suppl.):1493-1498

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Medical Homes in the UK

“Across the diverse healthcare systems

included in the study, patients who were connected to a medical home in general had

more positive care experiences, including better support for managing chronic conditions, better communication, and better

care coordination.”

www.healthcareitnews.com/news/medical-homes-prove-worth-us-and-abroad

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Medical Homes in the US

American Academy of Pediatrics:

The medical home is “an approach to

providing comprehensive primary care” that “facilitates partnership between patients,

physicians, and families”

medicalhomeinfo.org

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Medical Home Data: CSHCN

7/ 30/ 12 5:06 PMMedical Home for Children with Special Health Care Needs, by Age: 2005- 2006 - Kidsdata.org

Page 1 of 2http:/ / www.kidsdata.org/ data/ topic/ table/ special- needs- medical- home- access- age.aspx

kidsdata.org

Access to Services for Children with SpecialHealth Care Needs (State-Level Data)

Measures of Access to Services for Children with Special Health Care

Needs (State-Level Data) on Kidsdata.org

Learn More About this Topic

Medical Home for Children with Special Health Care Needs, byAge: 2005-2006 (Age: All; Access to a Medical Home: All)

Definition: Percentage of children ages 0-17 with special health care needs who received coordinated, ongoing,

comprehensive care as part of a 'medical home', by age group.

Data Source: Child and Adolescent Health Measurement Initiative. National Survey of Children with Special Health

Care Needs, Data Resource Center. http://cshcndata.org/Content/Default.aspx Retrieved 02/11/2009.

Footnote: Children with special health care needs are defined as those who have a chronic physical,

developmental, behavioral, or emotional condition and who also experience consequences due to their condition,

such as above-routine use of health and related services or limitations in activities compared to other children. For

information about statistical significance, see the report in the Data Source above. The American Academy of

Pediatrics defines a medical home as a model of delivering primary care that is accessible, continuous,

comprehensive, family-centered, coordinated, compassionate, and culturally effective. For more information, see

http://www.medicalhomeinfo.org.

United States Percent

Age Had Medical Home Did Not Have Medical Home

Ages 0-5 50.4% 49.6%

Ages 6-11 47.4% 52.6%

Ages 12-17 45.2% 54.8%

California Percent

Age Had Medical Home Did Not Have Medical Home

Ages 0-5 41.4% 58.6%

Ages 6-11 47.7% 52.3%

Ages 12-17 37.7% 62.3%

7/ 30/ 12 5:08 PMMedical Home for Children with Special Health Care Needs, by Income Level: 2005- 2006 - Kidsdata.org

Page 1 of 2http:/ / www.kidsdata.org/ data/ topic/ table/ special- needs- medical- home- access- income.aspx

kidsdata.org

Access to Services for Children with SpecialHealth Care Needs (State-Level Data)

Medical Home for Children with Special Health Care Needs, byIncome Level: 2005-2006 (Income Level: All; Access to a Medical Home: All)

Definition: Percentage of children ages 0-17 with special health care needs who received coordinated, ongoing,

comprehensive care as part of a' medical home', by household income level.

Data Source: Child and Adolescent Health Measurement Initiative. National Survey of Children with Special Health

Care Needs, Data Resource Center. http://cshcndata.org/Content/Default.aspx Retrieved 02/11/2009.

Footnote: Children with special health care needs are defined as those who have a chronic physical,

developmental, behavioral, or emotional condition and who also experience consequences due to their condition,

such as above-routine use of health and related services or limitations in activities compared to other children. For

information about statistical significance, see the report in the Data Source above. The American Academy of

Pediatrics defines a medical home as a model of delivering primary care that is accessible, continuous,

comprehensive, family-centered, coordinated, compassionate, and culturally effective. For more information, see

http://www.medicalhomeinfo.org/. For more information on the Federal Poverty Level, see

http://aspe.hhs.gov/poverty/. Percentages are weighted to population characteristics. Comparisons between

2000/2001 and 2005/2006 surveys should not be made due to differences in reporting of households with unknown

income. For more information on 2000/2001 survey income level, see

http://cshcndata.org/DataQuery/Derived.aspx?qseed=1024. For more information on 2005/2006 income-level, see

United States Percent

Income Level Had Medical Home Did Not Have Medical Home

0-99% of Federal Poverty Level

(FPL)34.0% 66.0%

100-199% of FPL 41.2% 58.8%

200-399% of FPL 51.1% 48.9%

400% of FPL or Higher 56.3% 43.7%

California Percent

Income Level Had Medical Home Did Not Have Medical Home

0-99% of Federal Poverty Level

(FPL)30.0% 70.0%

100-199% of FPL 31.7% 68.3%

200-399% of FPL 39.5% 60.5%

400% of FPL or Higher 55.2% 44.8%

kidsdata.org

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Lifespan Approach/Team Approach

Group patients with similar needs

Discuss changing health needs and critical care issues

Team setting: learn from encounters and consolidate resources

Improved care outcomes

Cost effective

Improved patient and provider communications

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Lifespan Approach/Team Approach

“Youth with lifespan-oriented providers were more likely than youth with child-only providers to have discussed changing health needs in adulthood and adult health insurance…these associations persisted after adjusting for demographics.”

Medical homes have proven to be cost-effective and considering the efficiencies and sustained access to resources and therapies over the patient’s lifetime, savings for CSHCN would even be greater.

Nishikawa et al 2011; Kogan et al. 2008; Palsbo & Diao , 2010.

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Ideal model for future care

Practices consisting of healthy patients and special health care patients

Flexibility in transition services

Direct access to specialty care

“medical homes should not become

barriers to specialty access”

Rosenthal TC. The medical home, access to care, and insurance: a review of evidence. Pediat rics. 2004;113(5)(Suppl.):1493-1498

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Holistic Framework

Education

Domain

Medical Domain

Social Welfare

Domain

Integrated Care Organization

Medical Home

Common agenda for the initiative: to

reduce disparities in access to services and encourage independence in planning for long term care for those

with developmental disabilities.

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Contact Information

Deborah Viola, PhD

[email protected]

Acknowledgment:

Research assistance provided by Alexandra Rubino.

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Bibliography AAP (American Academy of Pediatrics). 1996. Committee on Children With Disabilit ies and Committee on Adolescence: Transit ion of Care Provided for Adolescents With Special Health Care Needs. Pediat rics 98:1203. AAP (American Academy of Pediatrics). 2002. Medical Home Init iatives for Children with Special Needs Project Advisory

Committee. Policy Statement: the medical home. Pediat rics 110:184-186. Access t o Services for Children with Special Health Care Needs (St ate-Level Data). Lucile Packard Foundation for Children's Health, n.d. Web. 5 Aug. 2012. <http://www.kidsdata.org/data/topic/table/special-needs-health-care-access.aspx?loc=1774>.

"Adolescent t ransit ion care." Royal College of Nusing, July 2004. Web. 5 Aug. 2012. <http://www.rcn.org.uk/__data/assets/pdf_file/0011/78617/002313.pdf>. Bindman AB, Weinger JP, Majeed A. Primary care groups in the United Kingdom: quality and accountability. Healt h Aff

2001;20:132-45. C. Schoen, R. Osborn, D. Squires, M. M. Doty, R. Pierson, and S. Applebaum, New 2011 Survey of Pat ients with Complex Care Needs in 11 Countries Finds That Care Is Often Poorly Coordinated, Healt h Affairs Web First , Nov. 9, 2011.

Claypool, Henry. "What the Affordable Care Act Means for Americans with Disabilit ies." U.S. Department of Health & Human Services, 21 May 2010. Web. 5 Aug. 2012. <http://www.healthreform.gov/forums/blog/disabilit ies.html>.

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Bibliography DeJong, G., S. Palsbo, P.W. Beatty, G.C. Jones, T. Kroll, and M.T. Neri. 2002. The organizat ion and financing of health services for persons with disabilit ies. Milbank Quart erly 80(2):261-301 DfE: Referrals, assessments and children who were t he subject of a child prot ection plan (2010-11 Children in Need census, Provisional). N.p., 28 Sept. 2011. Web. 5 Aug. 2012.

<http://www.education.gov.uk/rsgateway/DB/STR/d001025/index.shtml>. "Disability Equality Scheme." Royal College of Nursing, Feb. 2007. Web. 5 Aug. 2012. <http://www.rcn.org.uk/__data/assets/pdf_file/0006/78738/003132.pdf>.

Doka, K., and C. Lavin. 2003. The paradox of ageing with developmental disabilit ies: increasing needs, declining resources. Ageing Int ernational 28(2): 135-154. Hait , E., J.A. Arnold, and L.N. Fishman. 2006. Educate, Communicate, Ant icipate—Practical Recommendations for Transit ioning Adolescents With IBD to Adult Health Care. Inflamm Bowel Dis 12:70–73.

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Kennedy, A., and S. Sawyer. 2008. Transit ion from Pediatric to Adult Services: are we gett ing it right? Current Opinion in Pediat rics 20:403-409. Knox, Graham. "Children Accommodated in Secure Children's Homes At 31 March 2011: England and Wales." Department for Education, 31 Aug. 2011. Web. 5 Aug. 2012.

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Bibliography Kogan, M.D., B.B. Strickland, S.J. Blumberg, G.K. Singh, J.M. Perrin, and P.C. van Dyck. 2008. A National Profile of the Health Care Experiences and Family Impact of Aut ism Spectrum Disorder Among Children in the United States, 2005-2006. Pediat rics 122:6:e1149-e1158. Kuo, D.Z., Cohen, E., Agrawal, R., Berry, J.G., Casey, P.H. 2011. A National Profile of Caregiver Challenges Among More

Medically complex Children with Special Health Care Needs. Arch Pediat r Adoslesc Med 165(11)1020-1026. Lotstein, D.S., R. Ghandour, A. Cash, E. McGuire, B. Strickland, and P. Newacheck. 2009. Planning for Health Care Transit ions: Results from the 2005-2006 National Survey of Children with Special Health Care Needs. Pediat rics 123;e145.

Lugasi, T., M. Achille, and M. Stevenson. 2011. Pat ients’ Perspective on Factors that Facilitate Transition From Child-centered to Adult-centered Health Care: A theory Integrated Metasummary of Quantitative and Qualitat ive Studies. Journal of Adolescent Healt h 48; 429-440. Lynn, J., B.M. Straube, K.M. Bell, S.F. Jencks, and R.T. Kambic. 2007. Using Populat ion Segmentat ion to Provide Better

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[08/05/12] from www.childhealthdata.org. National Survey of Children with Special Health Care Needs. NS-CSHCN 2005/06. Data query from the Child and Adolescent Health Measurement Init iative, Data Resource Center for Child and Adolescent Health website. Retrieved [08/05/12] from www.childhealthdata.org.

NHS- The Unit ed Kingdom's Healt hcare Syst em. Disabled World, n.d. Web. 5 Aug. 2012. <http://www.disabled-world.com/medical/healthcare/uk-healthcare/>. Nishikawa, B. R., T.P. Daaleman, and S. Nageswaran. 2011. Associat ion of provider scope of practice with successful

t ransit ion for youth with special health care needs. Journal of Adolescent Healt h 48 (2):209-211. Okumura, M.J., E.A. Kerr, M.D. Cabana, M.M. Davis, S. Demonner, and M. Heisler. 2010. Physician Views on Barriers to Primary Care for Young Adults with Childhood-Onset Chronic Disease. Pediat rics 125:e748

Okumura, M.J., E.A. Kerr, M.D. Cabana, M.M. Davis, S. Demonner, and M. Heisler. 2010. Physician Views on Barriers to Primary Care for Young Adults with Childhood-Onset Chronic Disease. Pediat rics 125:e748 Palsbo, S.E., Diao, G. 2010. The Business Case of Adult Disability Care Coordination. Arch Phys Med Rehabil 91:178-183.

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Bibliography Reiss, J.G., R.W. Gibson, and L.R. Walker LR. 2005. Healthcare transit ion: youth, family, and provider perspectives. Pediat rics 115:112-120. Roerbroeck, M.E., R. Jahnsen, C. Carona, R.M. Kent, and A.M. Chamberlein. 2009. Adult outcomes and lifespan issues for people with childhood-onset physical disability. Development al Medicine & Child Neurology 51:670-678.

Romaire, M.A., Bell, J.F., Grossman, D.C. 2012. Medical Home Access and Health Care Use and Expenditures Among Children with Special Health Care Needs. Arch Pediat r Adolesc Med 166(4):323-330. Rosen, D.S. 1995. Between two worlds: bridging the cultures of child health and adult medicine. Journal of Adolescent

Healt h 17:10-6. Rosenthal TC. The medical home, access to care, and insurance: a review of evidence. Pediat rics. 2004;113(5)(Suppl.):1493-1498

Sawyer, S., and R. Aroni. 2005. Self-management in adolescents with chronic illness. What does it mean and how can it be achieved? Medical Journal of Aust ralia 183:405-409. Scal, P., and M. Ireland. 2005. Addressing Transit ion to Adult Health Care for Adolescents with Special Health Care Needs. Pediat rics 115:1607.

Shattuck, P.T., M. Wagner, S. Narendorf, P. Sterzing, and M. Hensley. 2011. Post-High School Service Use Among Young Adults With an Autism Spectrum Disorder. Archives of Pediat ric Adolescent Medicine 165(2):141-146. Starfield, B., and L. Shi. 2004. The Medical Home, Access to Care, and Insurance: a Review of Evidence. Pediat rics

113(suppl 4): 485-1492.

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Bibliography Strickland, B., M. McPherson, G. Weissman, P. van Dyck, Z.J. Huang, and P. Newacheck. 2004. Access to the Medical home: Results of the National Survey of Children with Special Health Care Needs. Pediat rics 113(5):1485-1492. Tuffrey C, Pearce A. Transit ion from paediatric to adult medical services for young people with chronic neurological problems. J Neurol Neurosurg Psychiatry. 2003;74:1011–1013.

U.S. Department of Health and Human Services. 2005. Office of the Surgeon General. Surgeon General’s call t o act ion to improve t he health and wellness of persons with disabilities. Rockville, MD. van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW. Prevalence and Characterist ics of Children with Special Health Care Needs. Arch Pediat r Adolesc Med. 2004;158(9):884-890.

White, P.H. 2002. Access to Health Care: Health Insurance Considerat ions for Young Adults with Special Health Care Needs/Disabilit ies. Pediat rics 110(6): 1328-1335.