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, it is critical for pediatricians to understand how to balance the provision of comprehensive, quality health care with the demand to manage service utilization.

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 the physician and the family. Providing a medical home means addressing the medical and non-medical needs of the child and family. For the primary care physician, this role may involve identifying and making referrals to community, state, and federally-funded resources that will benefit the child and family.

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 services needed.

Reimbursement: One way to protect the time for managing the care of children with special health care needs is to negotiate an enhanced capitation rate for caring for such children. To do so, the pediatrician should negotiate a favorable capitation rate with the managed care organization in advance.

To establish a fair capitation rate, it is important to know:

• the complexity of coordinating activities as well as the increased time associated with face-to-face encounters.

• the number of children involved and the services they may require.

• Data on the covered population can be obtained from the managed care plan or the employer.

• Clinical pathways and practice guidelines offer valuable new resources to project needed resources.

• For children covered under Medicaid, it is important to ensure that the capitation rate reflects the full range of required benefits such as Early and Periodic Screening, Diagnosis, and Treatment (EPSDT).

Note: Partially and fully capitated reimbursement strategies can put the physician at risk for specialty referrals and other medically necessary, expensive ancillary services. Individual physicians should avoid accepting risk for all physician services.

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.

1. A diagnosis and prognosis should be established, realizing that this is not always possible or cost-effective.

2. In the absence of an etiologic 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.

3. Once a 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 that are currently recommended and available for the child's condition.

4. The risks and benefits of each intervention need to be explored and pursued together with the child's family. These risks may include family burden as well as medical and psychosocial risks for the child.

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

The Role of Specialists in Managed Care: For managed care to work for children with special health care needs, effective communication systems are essential. To do so, the following is needed between the primary care and specialty providers:

• a common database that includes pertinent history, physical examination, laboratory, and radiological information; and

• open and timely communication to ensure appropriate management of problems and eliminate unnecessary referrals.

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:

Step 1. Define the population of children you are seeing who have special health care needs.

Step 2. Work with the utilization management and quality of care staff in the managed care organization to create a shared data-base between primary care and specialist physicians, the emergency department, and the hospital(s).

Step 3. With each patient and family, define the extent of the health and functional needs based on the diagnosis, condition, and resources at home and in the community.

Step 4. Create a health care plan together with the family and the child's other providers that is approved by the managed care plan.

Step 5. Work with the quality of care staff of the managed care plan to develop new and improved approaches for continuously improving the care of children with various chronic conditions.

Step 6. Develop 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 improve families' satisfaction with care.

Step 7. Create ongoing education and training opportunities within the managed care plan for primary care physicians and specialists (including adult specialists serving children) in state-of-the-art approaches for the evaluation, diagnosis, and treatment of chronic childhood conditions.

Step 8. Work with each family to help them understand how the managed care plan operates in terms of service coverage and authorization policies.

Step 9. Work with the managed care plan to explore options to implement a health status adjustment to the capitation rate (i.e., ACGs).

Physician decision makers should not be controlled by the cost issue, but by medical judgment. Capitated risk situations should not be structured to make the physician suffer financially for providing care to this vulnerable population.

Contributing Authors

Judith Palfrey, MD
Marilynn Haynie, MD
AAP Medical Home Program for Children With Special Needs

Condensed version of an insert that appeared in AAP News, February 1996.