Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs

All Children Have a Medical Home

Summer 2004

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Size of the Problem

According to the National Survey of Children with Special Health Care Needs [1], there are over 160,000 children with special health needs in Minnesota. Only 48.7% of the children with special health needs in Minnesota have a medical home, which is defined as accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective primary care.

Nearly 89% of the children with special health needs in Minnesota have a usual source of care. 85% of the children with special health needs have a personal doctor or nurse; 76.5% of the children with special health needs who need a referral to other health related services have no problem obtaining a referral.

Children with Special Health Needs Have a Medical Home
Essential Element of a Medical Home
% Success (MN)
% Success (US)
a. The child has a usual source of care
88.7
90.5
b. The child has a personal doctor of nurse
84.6
89
c. The child has no problems obtaining referrals when needed
76.5
78.1
d. Effective care coordination is received when needed
40.5
39.8
e. the child receives family-centered care
69.9
66.8
MEDICAL HOME OUTCOME
48.7
52.6

Only 40% of the children with special health needs have effective care coordination when needed. While the children and their families overwhelmingly have professional care coordination when needed (79.3%), doctors communicating well with one another and doctors communicating well with other programs are problematic (51.2% and 27.6% respectively).

Approximately 70% of the children with special health needs in Minnesota receive family-centered care.

Seriousness

Minnesota ranks 44th nationally in the percentage of children with special health needs who have a medical home. Massachusetts and Maine lead the nation in the percentage of children with special health needs in their states who have a medical home (61% and 60% respectively). Only children in Alaska, California, Washington DC, Florida, Mississippi, and New Mexico are less likely to have a medical home than children in Minnesota.

Children with special health care needs have, or are at increased risk for, chronic physical, developmental, behavioral, or emotional conditions. In the U.S., 12.5 million children require health and related services of a type or amount beyond that required by children generally [2,3,4]. While comprising about 18 percent of children in the U.S., children with special health care needs (CSHCN) account for 80 percent of pediatric health care expenditures. This group of children has grown by 30 percent over the past two decades, due largely to improved diagnosis and early identification, enhanced survival from prematurity, birth defects, and chronic illnesses, and better access to specialized care.

According to the National Initiative for Children's Healthcare Quality (NICHQ), comprehensive health needs of these children and adolescents do not fit with the services traditionally offered by the primary care system, which is designed for the 80 percent of children who do not have special needs. "The Medical Home concept provides the organizing principles for caring for children with special health care needs."

In May 2004, the journal, Pediatrics, released a Supplement issue devoted to Medical Home. One article by Starfield and Shi [5] presented the results of a comprehensive review of the literature on Medical Home and its impact on costs and quality.

There is an advantage of having a particular practitioner or a particular place. "It is clear that for most aspects of care and health outcomes, identification of a particular practitioner provides better services than mere identification of a particular place. . ."

From the literature review, Starfield and Shi found the "evidence good" (as opposed to "moderate") that "identification with a person" within a practice rather than to a place led to:

  • Better Problem/Needs recognition
  • More accurate/earlier diagnosis
  • Less emergency department use
  • Fewer hospitalizations
  • Lower costs
  • Better prevention
  • Fewer unmet needs
  • Increased satisfaction

Primary care-oriented countries achieve notably better outcomes for health in early childhood: low birth weight ratios, postneonatal mortality, infant mortality and child mortality, including deaths from injury. It is notable that the United States ranks near the bottom or at the bottom on all of these measures and is rated the lowest in primary care orientation of all countries. The advantages of primary care are most notable for health outcomes in childhood, although they are also marked for some health outcomes later in life.

Two additional characteristics are related to the nature of primary care practice and outcomes: comprehensiveness of primary care services and family orientation. Better outcomes and lower costs are correlated with the extent to which a wide range of services are provided by primary care practitioners and the family orientation of these services

In their conclusion, Starfield and Shi state that a medical home provides better effectiveness of services as well as fewer disparities and more equity in health across population subgroups. "A concerted attempt to provide health insurance for all the country's population as well as a medical home for everyone should be of high priority if the United States is take its place among countries with the best health," write the study's authors.

Interventions

In an assessment of a Pediatric Alliance for Coordinated Care (PACC) intervention by 6 pediatric practices which operationalized medical home with CSHCN, it was found that at a cost per child of $400, [6] there was a statistically significant decrease in parents missing > 20 days of work (26% at baseline; 14.1% after PACC) and there was a statistically significant decrease in hospitalization (58% at baseline; 43.2% after PACC).

In Minnesota, a partnership between MCSHN, PACER Center and the Minnesota Chapter of the American Academy of Pediatrics is seeking to expand Medical Home through a Learning Collaborative and through support of advocacy and educational efforts with parents and primary care physicians providing services to CSHCN. The Medical Home's emphasis on care coordination and family involvement in decision-making results in both increased family satisfaction and improved outcomes for CSHCN/youth.

Status

The US Maternal and Child Health Bureau has launched an integrated set of six core outcomes to be achieved by 2010 so that children with special health care needs will: [7]

  • Receive on-going comprehensive care within a Medical Home
  • Have adequate private and/or public insurance
  • Be screened early and continuously
  • Have services organized in ways that families can use them easily
  • Have their families participate in decision making at all levels and will be satisfied with the services they receive
  • Receive services necessary to make appropriate transitions to all aspects of adult life

None of these outcomes will be completely meaningful without substantial progress on all of them. However, the improvement of primary care services toward the Medical Home concept provides the context for achievement of the other five outcomes. To that end, MCHB has partnered with the American Academy of Pediatrics, Family Voices, and other important stakeholders to support the widespread development of the Medical Home [8].

Many voices are demanding Medical Homes for CSHCN:

  • Family Voices, 2000 [9]
  • The American Academy of Pediatrics, 2002 [10]
  • Maternal and Child Health Bureau, 2001 [11]
  • Center for Medical Home Improvement, 2001 [12]

The American Academy of Pediatrics has established access to high quality health care through a medical home with appropriate reimbursement to the pediatrician as its top priority. . . . "We need not only the vision of the medical home but also the demonstration of practical tools and methods that have proved successful in overcoming recognized barriers to providing care that is accessible, family centered, comprehensive, continuous, coordinated, compassionate, and culturally effective" [13].


1. Centers for Disease Control and Prevention, National Center for Health Statistics, State and Local Area Integrated Telephone Survey, National Survey of Children with Special Health Care Needs, 2001
2. Neff, J., Sharp, V., Muldoon, J., Graham, J., Popalisky, J., & Gay, J. (2002). Identifying and classifying children with chronic conditions using administrative data with the clinical risk group classification system. Ambulatory Pediatrics, 2(1), 77-79.
3. Newacheck, P., Strickland, B., Shonkoff, J., Perrin, J., McPherson, M., McManus, M., Lauver, C., Fox, H., & Arango, P. (1998). An epidemiologic profile of children with special health care needs. Pediatrics, 102(1), 117 - 123.
4. Stein, R., & Silver, E. (2002). Comparing different definitions of chronic conditions in a national data set. Ambulatory Pediatrics, 2(1), 63 - 70.
5. Barbara Starfield, M.D., M.P.H. and Leiyu Shi, DrPH, MBA. "The Medical Home, Access to Care, and Insurance: A Review of Evidence" Pediatrics, Supplement, May 2004 (Volume 113, Number 5, Part 2 of 2),
6. Judith S. Palfrey, MD; Lisa A. Sofis, MPA; Emily J. Davidson, MD; Jihong Liu, PhD; Linda Freeman, MS, MBA, and Michael Ganz, PhD. "The Pediatric Alliance for Coordinated Care: Evaluation of a Medical Home Model," Pediatrics, Supplement, May 2004 (Volume 113, Number 5, Part 2 of 2).
7. McPherson, M., & Honberg, L. (2002). Identification of children with special health care needs: a cornerstone to achieving Healthy People 2010. Ambulatory Pediatrics, 2(1), 22 - 23.
8. US Maternal and Child Health Bureau. (2001). All aboard the 2010 express: a 10-year action plan for children with special health care needs and their families. Washington, DC: US Department of Health and Human Services, HRSA
9. Family Voices. (2000). A medical home: consistent, knowledgeable, and comforting care. Algodones, NH: Family Voices.
10. Committee on Children with Disabilities of the American Academy of Pediatrics. (1999). Care coordination: integrating health and related systems of care for children with special health care needs. Pediatrics, 104(4), 978-981.
11. US Maternal and Child Health Bureau. (2001). All aboard the 2010 express: a 10-year action plan for children with special health care needs and their families. Washington, DC: US Department of Health and Human Services, HRSA
12. Center for Medical Home Improvement. (2001). Building a medical home: improvement strategies in primary care for children with special health care needs. Lebanon, NH: Center for Medical Home Improvement.
13. E. Stephen Edwards, E.S. M.D., FAAP, Immediate Past President of American Academy of Pediatrics, "Forward." Pediatrics , Supplement, May 2004 (Volume 113, Number 5, Part 2 of 2),