Managed Care and Children with Special Health Care Needs: Creating a Medical Home

Reprinted from American Academy of Pediatrics News, February 1996

Introduction

Children with special health care needs have a broad range of primary, specialized, and related service requirements. Recognizing these needs, managed care systems face a critical issue: Can they control utilization and still offer the full range of appropriate services?

Pediatricians who are part of a managed care system may be caught in the middle. To provide a medical home to children with special needs and their families, the pediatrician must understand how to balance the provision of comprehensive, quality health care with the demand to manage service utilization.

What is a Medical Home?

The American Academy of Pediatrics defines a medical home as the provision of care that is accessible, family centered, continuous, comprehensive, coordinated, compassionate, and culturally competent. The medical home implies joint accountability between physician and family. Providing a medical home means addressing medical and non-medical needs of the child and family. For the primary care physician, this may involve identifying and making referrals to community, state, and federal resources that benefit the child and family.

The Pediatric Primary Care Physician’s Role

Specific Skills: To create an effective medical home, the primary care physician should establish a partnership with the child’s family. Together, the physician and family should develop a long-range health care plan for the child. This plan should:

Anticipate infancy, early and middle childhood, and adolescent issues.

Encompass the medical, developmental, educational and social issues that are commonly encountered by children with special needs.

The managed care plan should include:

A reliable network of pediatric medical subspecialists and surgical specialists who can evaluate the child and communicate their findings promptly and completely.

To ensure this network exists, the primary care physician should review the managed care contract and advocate for any services not included.

Families also should be encouraged to advocate for any services needed.

Medical Management: It is important to have a strong network of pediatric medical subspecialists, pediatric surgical specialists, and consultants. The following principles allow effective comanagement between primary care physicians and pediatric specialists:

The diagnosis and prognosis should be established, realizing that this is not always possible.

In the absence of a diagnosis, it is helpful to families to have as full an explanation of symptoms and function as possible, and a forthright plan for dealing with uncertainty.

Once the diagnosis or characterization of the problem is established, functional/developmental abilities should be determined. It is also helpful to determine the medical, surgical, habilitative, and rehabilitative or maintenance interventions currently recommended and available for the child’s condition.

The risks and benefits of each intervention need to be explored and pursued with the child’s family, including family burden as well as medical and psychosocial risks for the child.

Referral to appropriate specialists does not mean that care of patient is relinquished by the primary care provider. The best system is comanagement with clearly delineated care protocols.

Steps to Meet the Challenge: There is no question that fitting children with special health care needs into managed care is a challenge, but several steps should improve the chances for success:

Define the population of children you are seeing who have special health care needs.

Work with the utilization management and quality of care staff in the managed care organization to create a shared database between primary care and specialist physicians, the emergency department, and the hospital.

With each patient and family, define the extent of the health and functional needs based on the diagnosed condition, and the resources at home and in the community.

Create a health care program with the family and the other providers that is approved by the managed care plan.

Work with the quality of care staff of the managed care plan to develop new, improved approaches for continuously improving the care of children with various chronic conditions.

Create comprehensive pediatric case management/care coordination, family education, and support programs through the managed care plan, to enable both the primary and specialty physicians to more efficiently use their time, and to improve families’ satisfaction with care.

Create ongoing education and training opportunities within the managed care plan for primary care physicians and specialists (including those serving adult children) in state-of-the-art approaches to evaluation, diagnosis, and treatment of chronic conditions.

Work with each family and help them understand how the managed-care plan operates in terms of coverage and authorization procedures.

Physician decision makers should not be controlled by the cost issue.

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