A National Resource Center Is Not the Answer to Better Health Care for Special Needs Kids
From 1999 to 2000, staff at the HSC Foundation conducted a study to determine the feasibility of a proposed national resource center that would assist children with disabilities and their families in overcoming obstacles to receiving health care and other needed services.
- Parents and providers have no central source of information on health care and services for children with special needs.
- Health care and other services for children with disabilities are fragmented.
- There is a lack of communication between and within agencies and organizations that serve these children.
- Low reimbursement rates frequently result in a shortage of providers willing to care for special needs children.
- Funding for services should be funneled through a single entity, such as a managed care organization, which would provide parents of special needs children with a single point of contact and would monitor and coordinate utilization of services.
- As a result of the study, investigators abandoned their goal of creating a national resource center for special needs children and their families.
The Robert Wood Johnson Foundation (RWJF) supported this project through a grant of $50,000.
About one in five American children have a chronic, physical, developmental, behavioral or emotional condition, according to the American Academy of Pediatrics. A significant number of such special needs children are minorities, poor or socially disadvantaged and are concentrated in economically depressed urban communities. In recent years, the federal government has encouraged states to enroll in managed care programs those children with disabilities, but it has offered little guidance on how best to serve that population.
The goal of the project was to determine the feasibility of a national resource center that would identify and address the issues that children with disabilities and their families face when they attempt to access care and navigate the health care system. Project staff also planned to identify about five urban with significant numbers of children with special needs in which the potential was high because of existing services and leadership and in which to develop such a system. Under a Medicaid managed care program that it operated in Washington, D.C., the grantee, the HSC Foundation, had had experience coordinating the entire range of social, health and other services that children with disabilities need.
Project investigators conceived the national resource center as a place that local organizations could learn about best practices (such as HSC's Washington project) and replicate them in their own cities. They also planned to explore establishing regional centers in those cities that could serve as central sources of information about services for children, provide data on that population and perhaps coordinate the care of those children. The investigators named an advisory committee to assist them in the planning phase of the project. (See the Appendix for details).
Under the grant, investigators conducted telephone interviews, analyzed demographic data, and searched the Internet and medical literature to identify cities with high proportions of low-income special needs children. Based on the research, the staff visited eight cities Atlanta; Baltimore; Cleveland; Detroit; Houston; Miami; Oakland, Calif.; and San Diego and held discussions, at each site, with an average of 20 people at each site who had responsibility and experience in caring for such children. Participants included parents and other caregivers, public and private providers of health care and other services, and government and private agency leaders.
As a result of the interviews, investigators abandoned their goal of creating a national resource center for special needs children and their families. Through the site visits, they learned that each city has a distinctive population with its own needs and set of services already in place and that it would be difficult to import a single model of health care delivery into every one of the areas. They also concluded it would be difficult in most cities to establish a regional center that could serve as a locus for coordinating children's health needs and could be a resource for parents and providers. Most local organizations were wary of joining together with other groups to work in a coordinated fashion.
In their report to RWJF entitled A Review of Eight Big Cities: Access to Care Issues for Children with Special Needs, the investigators concluded that in most of these localities:
- There is no central source of information on health care and other services for children with special needs. There is no single place where parents or providers can go to find out about services and programs for children.
- Health care services for children with special needs remain extremely fragmented. Services and programs may be in place, but it is not known if these efforts can adequately serve the population or how inclusive the services are.
- There is a lack of communication between and within agencies and organizations that serve these children. This contributes to duplication of services, which increases the costs of caring for this population.
- Low reimbursement rates can result in a shortage of providers willing to care for children with special needs. This is particularly true in the Medicaid program especially for certain categories of service, such as mental health and dental care.
- Funding for special needs children should be consolidated and funneled through a single point to facilitate monitoring and coordination of services. The managed care organization (MCO) should become the conduit through which, at a minimum, governmental program funds would flow and be controlled. Through the coordinating MCO, each family would have a single contact point to help negotiate the way through community systems of care and ensure that there is continuity of care.
- MCOs should not be placed at risk for medical costs of special needs children. Given the choice, many parents select fee-for-service health coverage for their children with special needs because they have learned that when MCOs assume the risk for medical costs, there are incentives to limit access to care. If the disincentives created by risk were removed, leaving the MCO with only the care management/coordination function, there would be no limitation on services.
- Provider organizations should be encouraged to develop comprehensive, integrated services that maximize one-stop shopping and minimize coordination challenges.
- Aggregate funding levels must be established to ensure that adequate resources are and remain available for this population. In some cases, the aggregate level is adequate, but it needs to be distributed better. For example, while there is a shortage of home care services for special needs children, there is a surplus of acute inpatient resources.
HSC Foundation disseminated the report to about 50 participants at roundtable discussions of providers and others, which were held in three cities after the grant ended.
AFTER THE GRANT
Investigators proposed establishing an Internet-based resource center, which would direct parents and others to information about health care and other services in their area. RWJF declined to provide funding for a follow-up project. No further work has been completed.
GRANT DETAILS & CONTACT INFORMATION
Development of a National Resource Center on Sociocultural and Financial Barriers for Children with Special Needs
The HSC Foundation (Washington, DC)
Dates: May 1999 to September 2000
Thomas W. Chapman, M.P.H., Ed.D.
John Agwunobi, M.D.
Hospital for Sick Children
Burt Grebin, M.D.
St. Mary's Healthcare System for Children
Health Services for Children with Special Needs
U.S. Department of Health
U.S. Health Care Financing Administration
Bob Master, M.D.
Neighborhood Health Plan
Judith Palfrey, M.D.
Medicaid Working Group
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
A Review of 8 Big Cities: Access to Care Issues for Children with Special Needs. Washington, D.C.: Health Services for Children Foundation, 2000. Distributed to about 50 participants at three roundtable discussions held after the grant closed.
"HSC Foundation Gets Grants for Resource Center for Children with Special Needs," in the Washington Sun, June 3, 1999.
Report prepared by: Susan G. Parker
Reviewed by: Richard Camer
Reviewed by: Robert Crum
Program Officer: Rosemary Gibson