The final word: The Cerebral Palsy Care bill

Sunday, January 01, 2012 12:38 PM

Advocating for families within a framework of public health and patient safety

Edward A. Dauer, LLB, MPH, George D. Dikeou, JD, and Judy Hamm

A coalition of physicians, patient safety groups, care providers and insurance companies have worked for more than two years to develop what has come to be called “The CP Bill.” CP denotes both the bill’s purpose – it is more formally titled the Cerebral Palsy Care Act – and one of its principal architects, Cerebral Palsy of Colorado. When enacted by the Colorado legislature – hopefully, this year – it will redefine birth-related cerebral palsy in the framework of public health and patient safety.

The bill offers a multi-pronged approach to the financial and personal challenges families face when a child is born with what is often a profoundly debilitating condition. Accessing and coordinating the existing medical, educational, rehabilitative and other resources is by itself daunting where it is not overwhelming; and even when all of that can be achieved substantial unfunded needs remain. Health insurance, for example, does not cover mobility, special furnishings, or any aspect of family needs such as respite care. And because the largest majority of CP births are not attributable to provider error, the law’s liability system almost never contributes in a positive way.

The overall structure of the CP bill comprises three main goals: compensation for otherwise-unmet and CP-related needs provided in an efficient and individually tailored way; a patient-safety focus designed to provide learning from every eligible birth; and a link to existing professional review systems which balances accountability where that is necessary with non-punitive health care quality improvement where that would be even better.

In outline, the bill provides the following:

Eligible births: All families resident in Colorado and whose delivery occurs in a Colorado birthing facility are eligible if the child’s birth weight is at least 2500 grams (about 5.5 pounds), if the child exhibits defined neurological deficits predictive of CP within the first seven postpartum days, and if the child is diagnosed with CP at any time within the next eight years.

While some of these criteria may seem limiting, each is necessary to make the program workable. The program’s funding will come entirely from malpractice insurers and self-funded insurance trusts which now pay to defend and, rarely, to indemnify lawsuits alleging provider negligence in connection with birth-related CP. The 2500 grams excludes low birth weight babies whose problems are significant but not birth-related. The seven-day record likewise excludes injuries resulting in CP-type consequences which occur years after the birth. And restricting eligibility to cerebral palsy is appropriate given the demonstration purpose of the program. If it proves successful in its time others may
consider broadening its scope.

Benefits: The benefits will be secondary to a family’s private or public health insurance. The program will fill in where there is unmet medical and related need, and will provide for care and living needs the family requires but which existing programs do not cover. All of the benefits will be afforded on an “as needed” basis. There will be no lump-sum awards, and therefore no risk of compensating some families too little and some too much. Existing legal protections will be available in cases where there are differences of opinion in the evaluation of needs.

Equally important, from the moment an eligible birth is noted (and reporting of those cases will be mandatory) the family will be provided a dedicated case manager – an expert in coordinating medical care as well as in navigating the complex public and private benefits terrain. While financial savings is one objective of effective care coordination, far more valuable will be the expected improvement in life-long outcomes.

Learning and Accountability: The bill will create a new health care quality review capability, staffed by experts in pediatrics, neurology, obstetrics, and others whose knowledge can be helpful in case review – including experts in patient safety and systems performance, and the family itself. The review panel’s findings will be made available to the hospital or other facility for its own QA or professional review. Aggregated and de-identified findings will be widely published and brought to the attention of hospitals, physicians, and others both in health care and the public. The review process will not pursue questions of negligence or fault. Its focus is on learning and where possible remediation or education, using today’s adverse events to prevent tomorrow’s.

Speaking legally, the CP Care program will be available to affected families as their complete and exclusive remedy, i.e. malpractice lawsuits against health care providers will not be available to families otherwise eligible for the CP program. The trade-off is expected to be entirely favorable. Exceedingly few families are successful with birth-related CP cases in the courts today, yet physicians’ and hospitals’ insurers spend literally millions every year winning lawsuits and defending against families’ claims. The vast majority of families gain nothing from the existing legal process. Under the Cerebral Palsy Care Act every affected family will have its needs met; and everyone in Colorado will benefit from its focus on safety, quality, and the prevention of future harm.