Cost

Although Cerebral Palsy was identified more than a century ago, little has been published about Cerebral Palsy’s economic impact on the nation, or about the average lifetime expense to the family when a child is born with Cerebral Palsy. The expense associated with managing Cerebral Palsy is significant; however health insurance, financial planning, government assistance and community support are available for families who need assistance.

Cost of Cerebral Palsy

Cerebral Palsy is a long-term chronic medical condition that requires long-term supportive care services. Those with Cerebral Palsy often have other associative and co-mitigating medical conditions, including cognitive challenges, vision loss, hearing impairment, and seizures. These conditions require diagnosis, treatment and maintenance - all at significant cost.

The family of an individual with Cerebral Palsy is likely to incur significant expenses related to the ongoing need for medical care, special education services, developmental assistance, and assisted living. Other factors, such as the indirect costs of lost productivity and wages, as well as occupational limitations, also contribute to the overall expense.

Cerebral Palsy is the most common developmental disability among children in the United States. According to the United Cerebral Palsy Foundation, approximately 764,000 children and adults in the U.S. are living with one or more symptoms of Cerebral Palsy.

According to the National Institute of Neurological Disorders and Stroke, the percentage of babies who develop Cerebral Palsy has remained constant over the past 30 years, despite advances in prevention and treatment.

The Centers for Disease Control and Prevention and UCP estimate approximately 8,000 to 10,000 babies will develop Cerebral Palsy each year.

These prevalence and incidence rates, combined with ongoing medical expenses – both direct and indirect – place a significant financial burden on families and society as a whole, and therefore dictate the need for prevention and screening measures.

The cost of Cerebral Palsy to the nation

The Morbidity and Mortality Weekly Report is the CDC’s primary vehicle for communicating public health information to the medical, scientific, education, and research communities. One commonly quoted study detailing the cost of Cerebral Palsy in the U.S. was published by MMWR on January 30, 2004 and titled, “Economic Costs Associated with Mental Retardation, Cerebral Palsy, Hearing Loss, and Vision Impairment – United States, 2003.” The study, a collaborative effort between the CDC and RTI International, examines direct and indirect medical expenses associated with developmental disabilities. The study was based on 2003 dollars for individuals born with developmental disabilities in the year 2000.

The article reports “lifetime costs in 2003 dollars are expected to total $51.2 billion for persons born in 2000 with mental retardation, $11.5 billion for persons with Cerebral Palsy, $1.9 billion for persons with hearing loss, and $2.6 billion for persons with vision impairment.”

Of the $11.5 billion expense for persons with Cerebral Palsy:

• Indirect costs – 80.6%, or $9.241 billion, accounts for indirect expenses such as productivity loss due to inability to work; limitation in the amount or type of work; and premature mortality
• Direct medical costs – 10.2%, or $1.175 billion, includes physician visits, prescription medications, in-patient hospital stays, assistive devices, therapies, rehabilitation, and long-term care
• Direct non-medical costs – 9.2%, or $1.054 billion, includes such expenses as special education, home and automobile modifications

Source: Centers for Disease Control and Prevention. Economic costs associated with mental retardation, Cerebral Palsy, hearing loss, and vision impairment — United States, 2003. MMWR 2004; 53:57-9.

The cost of Cerebral Palsy to a family

The same MMWR report also disclosed the cost to a family as “average lifetime costs per person were estimated at $1,014,000 for persons with mental retardation, $921,000 for persons with Cerebral Palsy, $383,000 for persons with hearing loss, and $601,000 for persons with vision impairment.”

Of the $921,000 estimated per person expense of Cerebral Palsy:

• Indirect costs – 80.6%, or approximately $742,326.
• Direct medical costs – 10.2%, or $93,942.
• Direct non-medical costs – 9.2%, or $84,732.

Note: The expenses listed above do not include out-of-pocket expenditures, emergency room visits, lost wages of family members caring for those with the disability, and psychosocial effects. This cost reflects additional expenses incurred as compared to raising a child without a disability. The cost will vary with the severity of the disability, co-mitigating medical expenses, and may be constrained by insurance reimbursement practices. The same study conducted today would likely result in a greater estimate of costs due to factors such as inflation, exclusion of pain and suffering, and economic expenses to caregivers in lost wage and productivity.

Source: Centers for Disease Control and Prevention. Economic costs associated with mental retardation, Cerebral Palsy, hearing loss, and vision impairment — United States, 2003. MMWR 2004; 53:57-9.

Financial assistance is available

Most parents prefer to handle their own affairs, but when the family has a child with special needs, support from others is often welcome and appreciated.

The cost of Cerebral Palsy is significant, but not necessarily insurmountable. There is hope, help and support. Some resources include:

• Government programs – The government recognizes the expense associated with long-term chronic health impairments. As a result, regulations support inclusive and accessible environments, and programs provide economic assistance to families in need, including public assistance, access to affordable health care options, food and nutrition supplements, tax credits, and programs for community development funds, to name a few.
• Community-based organizations – Many community organizations form solely to support community initiatives, which help citizens within their own communities. Many organizations in the community, mostly nonprofit, aim to improve child welfare, financial stability, and promote healthy environments for families.
• Health insurance – Health insurance is intended to safeguard against high and unexpected health care expenses. Health insurance helps obtain and pay for health care services.
• Charity organizations – The primary purpose of many organizations is to serve community members. The mission of many community organizations is to incorporate one or more of the following types of assistance: support, counseling, connections, expertise, research, resources, information, equipment, advocacy, and funding.

Support is often the greatest gift a community can provide members with special needs. Support arrives in many forms — a phone call from a family member; a coffee break with a friend; a Supplemental Security Income payment from the government; a donated wheelchair lift from a charity organization; assistance with an Individualized Education Plan through the school system or support programs offered through the community center.

A recent Pediatrics study concludes that a strong supportive family unit, along with an extended network of assistance, influences a caregiver’s health while also benefiting the individual with special needs. Embracing the resources provided by government agencies, Cerebral Palsy organizations, disability networks, community groups, and charitable associations helps safeguard the health and well-being of the entire family.

Across the country, awareness of the mission and capacity of various organizations is growing. Many organizations pride themselves on advocacy and ability to assist others. So, although some parents may feel uneasy asking for help, many come to realize the positive impact support affords.