Adequate Insurance

Goal: All families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need.

Need

Health insurance coverage plays a critical role in ensuring appropriate access to care for children and youth with special health care needs (CSHCN). Nearly one in 10 CSHCN, or 1.3 million children, have no health insurance. Uninsured CSHCN are three times more likely than insured children to have unmet needs for health care and related services. The majority of uninsured families cite the high cost of insurance as the main reasons for the absence of health coverage.

More than one-third of CSHCN have insurance through a public program, notably Medicaid or the Children’s Health Insurance Program (CHIP). Nearly 55 percent are privately covered through employer-based insurance. Even when insured, CSHCN experience access problems. Among insured CSHCN, one in seven lacks a regular clinician, one in 10 goes without needed care over the course of a year, and one in five families of insured CSHCN reports being dissatisfied with their child’s care.

These access problems testify to the problem of underinsurance, most commonly expressed as inadequate benefit coverage and limited out-of-pocket protections. Many health insurance packages have gaps in coverage for key services, such as mental health, ancillary therapies, home health care, and durable medical equipment.

Activities

The MCHB Health Insurance and Financing Program focuses on three key areas:

1. expanding insurance to include uninsured CSHCN;
2. assuring that currently insured CSHCN have access to the benefits and services they need; and
3. strengthening the financing system.

Since 1994, the MCHB has been a leader in funding projects that address key health insurance for CSHCN, especially in managed care settings. These projects have developed a base of knowledge about caring for CSHCN in several key areas, including identification of CSHCN in managed care; quality assurance; financing and reimbursement strategies; and models of care in building partnerships with managed care organizations (MCOs). This health insurance initiative has developed partnerships among Medicaid and Title V agencies, health plans, providers, and families to improve health care for CSHCN.

Get On Board

• Identify or establish a community action group to study and address the health insurance needs of the children and families living in your community. Publish the results in your community newspaper.
• Invite the health care plans serving your community to speak at meetings about how their plans serve the needs of children with special health care needs.
• Work with health insurance companies and the State Medicaid program to establish a family advisory board or to include family representatives on existing committees.

Resources

• Centers for Medicare and Medicaid Services: www.hcfa.gov
• Maternal and Child Health Policy Center: www.mchpolicy.org
• Institute for Child Health Policy, Children in Managed Care: www.ichp.edu/managed/Default.htm
• American Academy of Pediatrics: www.aap.org

Voices from parents reflect the strengths and weaknesses of the current health insurance system for children with special health care needs:

“We are able to receive all primary and most secondary (specialists) care under one roof. They collaborate and practice family-centered care. We have very little paperwork, so it’s an immense relief.”

“Medicaid is OK. They pay for all the doctors, surgeries, etc. For a permanently handicapped child, it should not be based on income, because there are no insurance companies willing to cover her because of her pre-existing conditions.”

“Our son’s health insurance covers all outpatient visits, but does not cover any of the cost of his being home, i.e., private duty nursing or medical supplies. It only covers what they would have covered if he had no disability and none of the care he needs because of his disability.”

For the past 3 years, New England SERVE and Neighborhood Health Plan (NHP) have worked collaboratively to improve the quality of care for families and CSHCN. Prior to this initiative, CSHCN in NHP were “faceless, invisible, and voiceless.” Together they have established meaningful roles for families, separate pathways for care coordination and member services, new approaches for determining medical necessity and covered services, and specialized provider network arrangements.

The Hood Center for Children and Families works with Anthem BCBS New Hampshire and Cigna New Hampshire to improve access and build a better system of care for CSHCN. These two plans are sharing data and staff to offer an innovative care management program to CSHCN. Data have shown a decrease in costs.

Increasingly, MCOs and Medicaid agencies are asked to involve consumers in the planning and monitoring of managed care in their communities. Parents Helping Parents established a partnership with Kaiser Permanente and sites have been established to train health professionals and parents on the elements of family-centered care, cultural competence, and the formation of parent/professional collaborations.

The Maternal and Child Health Policy Research Center/University of California, San Francisco, provides research and analysis of legislative, regulatory, and policy strategies related to improving health insurance coverage; and The Center on Financing for Children with Special Health Care Needs/
The University of Florida Institute for Child Health Policy focuses on developing strategies to improve the financing of services for CSHCN.