Program Profile

Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities

Coordinated Care for Children in D.C.: Health Services for Children with Special Needs, Inc.


Bruce Goldman is Chief Operating Officer, Health Services for Children with Special Needs, Washington, D.C.

Margaret Fisk Mastal is Director of Special Projects with Delmarva Foundation, District of Columbia, Washington, D.C.

In the early 1990s, the District of Columbia government, in considering ways to better manage the cost and quality of services for its Medicaid enrollees, decided to implement Medicaid managed care programs. This decision was controversial, with particular concern raised regarding the pediatric population with special health care needs. There were two schools of thought about this population: One was that they could not be part of a managed care program because they could fall through the cracks of the delivery system, and the other held that they would benefit from a specially designed program of managed care.

During that time, the HSC Pediatric Center in Washington, D.C. hosted a conference sponsored by the National Association of Children’s Hospitals and Related Institutions in which these issues were explored. The conference focused on the future of managed care and the role of pediatric specialty care facilities in the continuum of care for children and youth with disabilities. All involved in caring for this population expressed their frustration with the lack of care coordination when children were discharged from inpatient care. Out of this conference a decision was made by the HSC Pediatric Center leadership to submit a letter of intent to the District of Columbia government expressing interest in developing a Medicaid managed care program for children with disabilities. The District’s public agency responsible for administering the city’s Medicaid program, the Commission on Health Care Finance, was receptive to the submitted proposal. After much discussion and debate, the Center for Medicare and Medicaid Services (formerly the Health Care Finance Administration), the District government, and the HSC Pediatric Center contracted to launch a pilot program, naming it Health Services for Children with Special Needs (SN). In February 1996, SN enrolled its first member.

Mission and Goals

Health Services for Children with Special Needs, Inc. is a health plan that coordinates health and life care for children and youth with special health care needs. It’s a voluntary program available to pediatric Supplemental Security Income (SSI) enrollees in the District of Columbia. The mission of SN is to ensure that children and youth with special needs, their families, and their communities have appropriate, timely, and cost-effective access to and use of quality, medically necessary health benefits and services. Specific goals include:

  • Ensuring access to health care and services through developing, supporting and partnering with a committed network of community-based providers and services.
  • Facilitating members’ appropriate, timely usage of services that focus on disease prevention, restoration to optimal health, adaptation to chronic illness/disease, health promotion, and palliation at the end of life.
  • Collaborating with public and private organizations, agencies, caregivers, and members to jointly identify and creatively remedy situations and circumstances that threaten the optimal health of children and youth with special needs, their families, and communities.
  • Maximizing the effectiveness of monies allocated for health care and services needed by the member population.

Program Components

In carrying out its work, SN addresses eight key areas: provider network, benefit structure, member eligibility, care coordination, member services, outreach, financing, and quality management. The following are the primary characteristics of each area:

  • Provider Network.The provider network is based on an “open panel” design that allows any provider (physicians, hospitals, etc.) that meets SN’s credentialing and practice requirements to execute a contract with the plan. Emphasis is placed upon obtaining contractors with experience and interest in caring for children and youth with disabilities, and guaranteeing access to the wide array of services that members require.
  • Benefit Structure. The benefit structure for members includes traditional Medicaid benefits that meet the criteria for medical necessity, as well as the option to design special benefits that meet an individual child’s health needs. Special benefits address multiple needs and emphasize keeping the child in the community setting; they include respite care for families and caregivers of home-bound children and youth, home reconstruction to accommodate wheelchairs, and assistive devices.
  • Member Eligibility.Eligibility is through SSI designation for children and youth, birth through age 21. The most unique feature of program eligibility is that children and youth with both physical and psychosocial primary diagnoses are members. SN uses an integrated biopsychosocial model with each member receiving holistic care coordination addressing medical, mental health, behavioral, and developmental needs in home, school, and work environments.
  • Care Coordination.Care coordination staff include care managers, member service personnel, and outreach staff, interacting to enhance care coordination activities and outcomes. Care management staff, of which there are two levels, handle the actual care coordination services. Care managers are licensed registered nurses (RNs) and licensed social workers who coordinate care for medically and psychosocially complex members. At the other level, care manager associates have baccalaureate degrees but are not licensed; they are assigned the members with less complex needs. The education and backgrounds of the associates includes nursing, social work, education, and health care management. The staff function in teams of care managers and care manager associates, working with the providers, members, and caregivers (parents or legal guardians) to develop and implement an individualized plan of treatment for each SN member. The plan of treatment identifies the member’s needs and appropriate benefits and services, documents advice on the member’s health situation, and serves as the rationale for members to access and receive timely, quality care. The care manager or care manager associate coordinates all benefits and services for each member assigned to their caseload, from medical appointments, to appropriate home modifications, durable medical equipment and supplies, and special benefits.Within the care coordination department are five teams, each with a team leader. Because over 60% of the members have a mental/behavioral health diagnosis, one team is responsible for the care coordination of members with severe mental health diagnoses. A pediatric psychiatrist supervises this team of social workers who are experts in behavioral health services. A second group of members who have their care coordinated by a distinct team is infants and children from to five years of age. These children pose a unique challenge due to the intensive intervention and teamwork with the caregivers that are necessary. In 2005, a third specialized team will be organized to work with the adolescent population in recognition of the particular issues facing these youth, including needs in relation to transitioning out of SN’s program; the transition period begins at 19, in preparation for when the member “ages out” at 22. The remaining teams are general, working with a cross-mix of the membership whose needs are not as intense or complex.Care coordination staff report to the medical director to ensure total collaboration between medical treatment and care coordination.
  • Member Services. The Member Services Department is the first contact for members and providers to access care coordination services. They are available 24/7 to transfer callers to the appropriate department or staff member, receive complaints, and make all transportation arrangements for health appointments.
  • Outreach.Outreach staff work in the community, contributing significantly to care coordination efforts by locating potentially eligible members as well as unreachable members and families. Families enrolled in Medicaid are often transient and frequently change contact telephone numbers, resulting in difficulty locating them for needed health care. Outreach workers are known and trusted in the community, connecting with individuals who can help locate missing members and their families.
  • Financing. SN receives a fixed rate of payment per member per month regardless of the complexity of a member’s needs. Eighty-six percent of these funds are used for medical and health care services. If the costs for a particular member exceed 86%, Medicaid pays for the overage, which must be justified by SN. The administrative and care coordination cost components of the per-member-per-month expenses are covered by SN from its resources.
  • Quality Management. Managing quality of care coordination and of the health care that members receive has been an evolving process, starting with ethical considerations and expanding to include both quality assurance and quality improvement dimensions. An Ethics Advisory Panel provides a multidisciplinary advisory group for counsel about specific ethical issues. In addition, SN has a Director of Quality and quality management department, which monitor outcomes in terms of member health and satisfaction.


Health Services for Children with Special Needs, Inc. has grown from an idea and a pilot program into a respected and valued source of care coordination for over 3,200 children and youth with special needs who receive SSI. In September 2003, an external evaluation of SN utilizing the Consumer Assessment Of Health Plans Survey showed SN receiving strong approval levels from its members, with 88% of members “highly satisfied” with their overall plan. And, in December 2003, SN received accreditation from the Joint Commission on Health Care Organizations. Today, it continues to improve and increase its capacity to provide timely and cost-effective access to quality health care for some of the District of Columbia’s most vulnerable children and youth.