Cerebral palsy is a lifelong disorder, without a cure. Symptoms vary widely between patients, but the underlying neurological condition can lead to many physical, mental, and emotional impacts – each requiring costly care.
CP is not progressive, so damage does not worsen over time, but symptoms can change and develop as a patient ages. Long term management is expensive and with many co-existing conditions resulting from the disorder; the cost of living with cerebral palsy quickly rises.
A 2003 study published by the CDC estimates lifetime expenses approaching $1,000,000 for each cerebral palsy patient.
Adjusted costs put the figure well above one-million in today’s dollars, and totals are compounded by costly complications, lost wages and standard living expenses. Another aspect of the longitudinal study, looking at the economic impact of the disorder, projected lifetime living expenses for CP patients born in 2000 will cumulatively grow to more than $11 billion over the course of their lives. These staggering sums point to the extraordinary expense of treating the complex disorder and also to the indirect costs of living with cerebral palsy.
Help comes from various sources, furnishing financial assistance for therapy, care, assistive devices and other cerebral palsy expenses. Families facing CP turn to these resources for financial help, guidance and support:
- Government agencies
- Legal assistance
- Disability advocacy groups
- Health insurance
- National CP organizations and local chapters
- Community organizations
How Much Does it Cost to Treat and Care for a Child with Cerebral Palsy?
Effective CP management calls for long-term support, but the cost of the disorder shows itself early on. Raising a child with cerebral palsy includes customary family expenses, but the disorder also adds many costs, unique to CP.
In 2005, among Medicaid enrollees, health care costs were higher for those with CP, when compared to children not facing the disorder. In fact, medical costs for children living with cerebral palsy alone were 10 times that of children without CP. When intellectual disability was also present, cerebral palsy costs rose to more than 25 times the cost of raising a child without CP or intellectual impairment.
Among other medical expenses, cerebral palsy care and treatment includes the cost of:
- Special education
- Physical therapy
- Assisted living
- Specialized therapy
- Assistive and augmentative equipment
- Doctor and hospital visits
The cost of care and treatment varies for individuals challenged by cerebral palsy, depending upon the severity of symptoms and the particular needs of each patient. Co-occurring conditions add further expense, calling for targeted treatment and therapy for hearing difficulties, vision problems, seizures and other CP complications.
International research illustrates the cost of cerebral palsy. In Australia, for example, the overall national impact of cerebral palsy was estimated at $1.47 billion in 2007. A subsequent study of the CP population in Denmark identified lifetime costs at more than €800,000, for each cerebral palsy patient.
In the U.S., 2005 Medicaid figures distinguished between the cost of raising a child without disability and the annual cost of cerebral palsy care and maintenance. At the time, a healthy child was expected to incur annual expenses of approximately $1,600, while the yearly cost of raising a child with cerebral palsy might exceed $16,000.
Costs are Greater for Children with Intellectual Disabilities
Children with co-occurring intellectual challenges require specialized care, beyond therapy and rehabilitation for the physical impairment caused by cerebral palsy. As a result, cerebral palsy costs quickly climb higher when intellectual disability is present.
Cognitive impairment strikes a substantial share of CP sufferers. Estimates vary, but it is thought 30-50% of cerebral palsy patients also experience some level of intellectual impairment. The more severe the symptoms of an individual’s cerebral palsy, the more likely it will also affect his or her cognitive functioning. Therapy, including early intervention, strives to help each patient thrive within his or her abilities. According to CDC figures, annual costs of raising a child diagnosed with cerebral palsy and cognitive limitations can approach $50,000.
Direct medical expenses account for about 10% of the total cost of caring for a CP patient. This share includes doctor visits, hospital stays, medication and other health care spending. Another 10% of the total tabulation is attributed to direct non-medical costs, like special education expenses and home modifications for families managing CP. While some of the costs may be covered by insurance, direct non-medical expenses often fall outside coverage limits.
More than 80% of the financial impacts of cerebral palsy are indirect, encompassing lost productivity and other financial forfeitures related to the disorder. Indirect costs are measured in these terms:
- Wages – Lost earning potential for those unable to work.
- Occupational Limitations – Cerebral palsy conditions may prevent a patient from advancing within his or her field of employment.
- Premature Death – CP complications can result in premature mortality, limiting a patient’s productive years.
Finding Help Paying for Cerebral Palsy Treatment and Care
Cerebral palsy presents financial challenges, often calling for outside resources. Families facing the disorder benefit from government programs, charitable aid, and resources put forth by committed cerebral palsy advocacy organizations.
- Government Programs – In the US, disability and other benefits help ease the financial burden for residents living with chronic long-term illnesses. Cerebral palsy patients may qualify for cash assistance, access to health care coverage, tax credits, counselling services and other federally funded benefits. State support may also be available, providing resources for cerebral palsy patients.
- Early Intervention Programs – Under the collaborative care of various specialists, early intervention programs promote therapy and treatment for young children. The intensive, subsidized treatment programs strive to head-off further complications with early therapy, beginning before age 3.
- Nonprofit Organizations – Outside public funding for cerebral palsy, patients rely on advocacy organizations for resources and support. Help comes from charitable organizations, church groups, advocates for the disabled, and other community supporters.
- Legal Compensation – When negligence or errors lead to cerebral palsy, patients may be eligible for compensation. Cerebral palsy lawyers can provide professional legal consultation and help sort out the facts helping parents make informed decisions.