The High Costs Of Cerebral Palsy: A Guide For Families & Caregivers

The High Costs Of Cerebral Palsy: A Guide For Families & Caregivers

Cerebral palsy is a lifelong medical condition that often requires some form of long-term supportive care. People diagnosed with cerebral palsy often have associated conditions as well, including seizure disorders and cognitive impairments, which may require their own specific treatments.

How Much Does Cerebral Palsy Care Cost?

The condition’s impact on families, both emotional and financial, cannot be trivialized.

Sleeping Child

Beyond direct medical expenses, special education services and the costs of assisted living, families must also take into account the fact that many children born with cerebral may not be able to work. Research from 2005 out of Denmark found that adults with cerebral palsy are far less likely to be employed in competitive positions than people without the condition.

Thus “indirect” costs must be accounted for, including the effects that long-term limitations in activity may have on projected income. Considering these direct and indirect costs, the CDC researchers found that every new case of cerebral palsy in the US in 1992 had an estimated economic cost of $503,000.

Lifetime Cost To Families In 2003: $921,000

An even more influential study, published 11 years later, sought to estimate the costs of cerebral palsy that directly impact families. Using a wealth of government-collected data, researchers at the CDC calculated the lifetime expected cost of a cerebral palsy diagnosis to be $921,000. Direct medical expenses, however, only contributed to a little over 10% of this total, around $93,942. Far more consequential were indirect costs, including the inability to work that we mentioned earlier. These indirect costs amounted to over 80% of cerebral palsy’s lifetime cost, at around $742,326.

Needless to say, the $921,000 estimate only truly applies to cases of cerebral palsy diagnosed in 2003. The costs associated with cerebral palsy, along with co-occurring medical conditions, are undoubtedly higher today due to inflation. Adjusting for inflation, the lifetime cost rises to over $1.2 million in 2016 dollars.

Unexpected Expenses

It should also be noted that this total estimate, $921,000, does not take several extremely important expenses into account. Perhaps most importantly, the CDC’s number does not consider the wages that many parents forego in order to care for their children. Nor does it include out-of-pocket expenditures or emergency medical services, which can be far more costly when cerebral palsy patients are hospitalized. In a 2006 study, pediatricians at the University of Utah found that, when compared to children who are not diagnosed with cerebral palsy, children with cerebral palsy:

  • are hospitalized for longer periods of time (6.3 vs 4.1 days)
  • are hospitalized at greater expense ($16,042 vs $9,952)
  • receive more diagnoses during their hospital stay (5.6 vs 3)
  • receive more procedures during their hospital stay (1.7 vs 1.1)

Moreover, children with cerebral palsy are more likely to be transferred from the hospital to other medical facilities, rather than being discharged entirely. In the event of a discharge, children with cerebral palsy are more likely to be prescribed home health care services than children without the condition.

The Impact Of Co-Occurring Intellectual Disabilities

In a second study, conducted in 2012, CDC analysts looked into the financial implications of, not only a cerebral palsy diagnosis, but the diagnosis of a co-occurring intellectual disability as well. While families of children with cerebral palsy were found to incur medical expenses around $15,047 more, per year, than for children without cerebral palsy, an intellectual disability nearly doubled those expenses.

Parents of children with cerebral palsy and a co-occurring intellectual disability paid about $26,617 more to care for their children that families of children diagnosed with cerebral palsy alone. Compared to families of children without cerebral palsy, the parents of children with cerebral palsy and an intellectual disability may incur expenses of nearly $42,000 more annually.

Financial Help Is Available

It should go without saying that the extraordinary costs of a cerebral palsy diagnosis are difficult for many families to bear. Thankfully, there are numerous government and non-profit programs that can help.

In many states, Medicaid can cover many costs of medical care for families that don’t make enough to obtain private insurance. CHIP, the Children’s Health Insurance Plan, is also available to families who cannot afford private insurance, but earn above Medicaid’s eligibility requirements. Supplemental Security Income, a program offered through the Social Security Administration, can help low-income families of children with special needs meet their day-to-day expenses.

In addition to state and federal programs, some families will choose to file medical malpractice lawsuits. A significant percentage of cerebral palsy cases are caused by hypoxic-ischemic encephalopathy, a form of asphyxia that infants can suffer during childbirth. While birth asphyxia isn’t always evidence that a medical professional acted negligently, it certainly can be. As a result, some families will be eligible to pursue compensation, including long-term medical expenses, through a civil birth injury lawsuit.

Keep in mind that every family’s expenses will be different. Averages and estimates aren’t particularly helpful where individual children, with unique needs, are concerned. Many experienced attorneys work closely with life care planners to help individual families identify the needs, medical and non-medical, that their children will require to thrive.

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By | 2017-12-08T08:48:31-05:00 December 12th, 2016|Cerebral Palsy|Comments Off on The High Costs Of Cerebral Palsy: A Guide For Families & Caregivers

About the Author:

John Bair has dedicated his career to helping families plan their futures after a lawsuit. Founder of Milestone Consulting, a settlement management company, John is devoted to providing resources for families of children with special needs. More of John's work is available at the Legal Examiner.