Every state has its way to reach special needs children

State activities to provide services to children with special health care needs under Medicaid managed care vary and do not always conform with interim criteria for such services issued by the federal government in June 1999, according to a recent survey of six states.

The National Academy for State Health Policy in Portland, ME, conducted site visits in Colorado, Connecticut, Delaware, Massachusetts, Michigan, and New Mexico last fall, talking with officials from Medicaid and other state agencies, managed care organizations (MCOs), parents of children identified as eligible for services, providers, and advocates.

The goal was to inform federal agencies of the fit between the states’ activities and the interim criteria, to determine whether the criteria should be adjusted as the Health Care Financing Administration (HCFA) applied them to state waiver requests. At the time the study was conducted, the criteria did not apply to any of the states visited. The academy looked at current state services in terms of definition of children with special health care needs; identification and tracking of such children; enrollment and disenrollment; provider capacity, access to specialists, and access to benefits; quality of care; coordination of care; payment methodology; and stakeholder input:

Definition. The academy found that states use various methods to define children with special health care needs (CSHCN), depending on the purpose and objectives of their initiatives. States may use diagnostic criteria, presence of risk, functional status, or utilization of services to define CSHCN, and also may use one or more of the categories set forth by Congress in the Balanced Budget Act of 1997:

— receiving SSI;

— eligible under 1920 (e)(3);

— in foster care;

— receiving foster care or adoption assistance payments;

— receiving Title V-funded care coordination services.

Those interviewed told the academy that while the congressional criteria can be useful for identifying groups of children for whom a state must seek a waiver and develop certain safeguards prior to enrolling them in mandatory managed care, a strict application of the criteria isn’t sufficient to identify some children with the greatest need for safeguards. Specifically excluded from the criteria are special needs children who qualify for Medicaid under different eligibility categories than those in the definition or who received Title V-funded services without care coordination. Those participating in the survey also cautioned against using the congressional criteria to attempt to produce a consistent count of CSHCN across states or to get an unduplicated count within a state since the groups overlap.

Identification and tracking. State sources at the sites said they were using their own definitions of CSHCN, all of which differed from HCFA’s interpretation of the congressional definition in the interim criteria. The sources explained that they considered it more important to use a definition that would allow them to identify and track individual children and their care needs rather than simply identifying aggregate groups of children. The Medicaid agencies said they could identify all children in the five groups in the congressional definition if they had to, although none were doing so at the time of the visit.

Enrollment and disenrollment. State agencies said their processes for enrollment and disenrollment generally were not specific to CSHCN, but rather applied to all populations enrolling for managed care. The agencies said they found it difficult to conduct more targeted activities specific to CSHCN because of the difficulty in identifying those children prior to enrollment and insufficient information about their health status, current provider, or contact information. Many stakeholders said the availability and transfer of information in the enrollment process was a key concern. Families wanted to know which, if any, aspect of their children’s care would be disrupted by the move to managed care and wanted to know how to access care in their new managed care organization. Managed care organizations wanted accurate and complete contact information for new enrollees, as well as information from claims or encounter data about services the children were receiving prior to enrollment so they could prevent disruption in care.

Provider capacity, access to specialists, and access to benefits. The academy says states reported contract provisions in place with their managed care organizations to assure sufficient provider capacity and access to specialty care. Although their policies were not identical to those in the interim criteria, states put considerable importance on the availability of qualified providers who can serve all managed care enrollees, including those with special needs. Interviewers found that the importance of experienced providers goes beyond physicians to include all who come in contact with a special needs child, from personal care assistants to child welfare agency staff to durable medical equipment suppliers, to X-ray technicians and the managed care organization staff.

Parents said they were as interested in availability of services such as wheelchairs, in-home therapy, diapers and other supplies, private duty nursing, and pharmacy services as they were concerned about access to appropriate physicians. Parents and providers want to know that there is an established and ongoing system of care, whether it is provided through managed care or fee-for-service, that can respond to the chronic nature of a child’s illness or disability and the ongoing needs of the family.

Quality of care. Few of the Medicaid agencies surveyed had implemented performance measures specific to CSHCN, as envisioned in the interim criteria, although all had conducted qualitative studies and measured MCO performance in areas of concern to special needs children. The states said that low enrollment numbers from the target population and lack of performance measures specific to that population were barriers to implementing quality programs such as envisioned in the criteria.

Coordination of care. Those interviewed said that the interim criteria leave unaddressed many important elements that could ultimately affect the impact of care coordination on a beneficiary’s health status and care needs. They said that some of the terms used in the criteria — such as assessment, treatment plan, and case management — have different meanings to different stakeholders, leading to confusion about who should receive care coordination, what is to be provided, and what the outcomes of care coordination should be.

Payment methodology. All Medicaid agencies interviewed said they were adjusting payments by demographic factors such as age, sex, and eligibility category, and those would meet the requirements of the interim criteria. The academy reported there was a growing consensus among the agencies to move beyond these factors and to base capitation payments on enrollee health status and use payments to provide incentives to improve MCO performance. Other concerns raised included adequacy of overall payments to MCOs to accommodate the special needs and frustration about the difficulty in establishing payment responsibility for specific services among the multiple agencies that serve children with special needs.

Stakeholder Input. The agencies surveyed said they had processes in place for development of the managed care program similar to those in the interim criteria. States typically involved those responsible for caring for children with special needs, including families, advocacy groups, providers, MCOs, and Medicaid and other state agencies. Those interviewed said it was important to involve stakeholders in all aspects of managed care program operation and evaluation, not just program development, and to measure the results of stakeholder input by assessing the changes that come from their involvement.

Conformity with the criteria is easier on some than others, according to Neva Kaye, director of the Medicaid managed care resource center at the National Academy for State Health Policy.

"The biggest potential problem is in the definition," says Ms. Kaye. "It was good for where it started — to decide if a waiver is needed. But when you try to apply it to the other criteria, it can create problems."

Another problem area is quality. "HCFA’s a little beyond the state of the art on quality. State agencies would like to go there, but they’re not sure how to do it and could use some technical assistance," she adds. "It’s clear that states have been thinking about capacity issues and access to specialists, and there’s the least for them to do in that area."

Ms. Kaye says there could be problems tracking clients. States can identify people at enrollment, but then there is a question of whether they are the right people to be tracked. And that goes back to the definition. "Everyone agrees that coordination of care is important, and everyone believes they can do it better. The terms are not well-defined, so states may or may not be meeting the criteria."

Ms. Kaye says states are doing particularly well on stakeholder input. Some involve people not just in waiver development but also in program operations and some hire stakeholders to work on staff in the programs. She says the academy did its best to pick a representative sample and adds that it gives a good picture of what’s going on in all the states. HCFA is revising its criteria based on the report, but Ms. Kaye has not had feedback yet on specific revisions and is unsure when they will be issued.