Financing Care and Cerebral Palsy

Health care expenses for a person living with a chronic illness can be astronomical, and can impose a financial burden on the families of those persons with disabilities. While each person with cerebral palsy’s needs differ, a child or adult with cerebral palsy can expect to require hospital care, ambulatory services and case management services, all of which adds up year after year. Financing the care of a person with cerebral palsy is one of the greatest stresses a family can come up against in their experiences with cerebral palsy, but it is possible to fund your child’s care effectively, and hopefully with a minimal direct cost to you.

Funding can come from a bevy of different sources, the most common of which are the family’s own funds, private health insurance, government programs, and private philanthropic sources. It is estimated that roughly one fifth of all your child’s healthcare costs will come out of the family’s pocket, although as it is only an estimation, some will pay more, and some will pay less. Funding the care of an adult with a chronic illness such as cerebral palsy is a different story, however, and is generally decided by the adult’s status. If he or she is a working adult, health insurance usually supplements the adult’s expenditures for health care. If the adult is dependent and is without private health insurance or other resources, Medicaid may cover the cost of medical care. Many private insurance policies do not provide chronic care coverage. If you are a low-income adult who meets the requirements of eligibility as determined by the state, Medicaid may also pay for your medical bills.

Medicaid is a program of federal grants to states that pays for certain health services for eligible people. The eligibility criteria are specific to each state but are based on financial need. Each state may add services beyond what is required by law. To be eligible for Medicaid assistance, a family must not earn more than a certain income, which is decided by the state. Once a member of the family reaches ages 18 or 21 (it depends on the state), that member is judged on his or her individual income. General services covered by Medicaid include inpatient hospital care, physicians’ and other out patient services, skilled nursing services, and lab tests. Coverage varies by state over services such as medications, home health care, eyeglasses, and dental care. Medicaid regulations change from time to time because of budgetary constraints and use of resources, and congress continues to reform laws with respect to eligibility, reimbursement, and benefits. Investigate limits of Medicaid coverage in your state to be sure of the current situation.

For the child who is highly dependent on technology, who might otherwise remain in the hospital to receive skilled nursing care, Medicaid has a program for those who seek greater independence that is aimed at reducing the costs of hospitalization and decreasing unnecessary hospital stays. This program, called the Medicaid Home and Community Based Waiver, pays for needed care, but that care is provided in the home or a community-based center certified to provide such services, such as a group home.

The government also has programs outside of Medicaid for children with special needs, called Programs for Children with Special Health Care Needs, formerly called Services for Crippled and Handicapped Children. These are included under the Maternal and Child Health (MCH) Block Grant and provide case management and other health services such as nursing, social work, and physical and other therapies to eligible children with chronic illness. Each state sets its own eligibility criteria and its own list of services covered. Currently, there is an income requirement, or a level a family’s income may not rise above in order to be eligible for services. Another governmental support program, called Supplemental Security Income (SSI), is an income support program for aged, blind, and disabled adults, and for children with disabilities.

To be eligible for SSI services, a child must live in a low-income household and must meet the SSI criteria of disability. If a child is eligible to receive SSI, health care services are provided through Medicaid.