Steven C. Holt, MD, Colorado Section vice chair and legislative chair
An initiative to better assist children born with cerebral palsy and their families is underway in Colorado. The Cerebral Palsy Care Project has drafted legislation that, if enacted, would create a five-year demonstration project with the following purposes:
To provide care, resource coordination, and resources frequently not available to families affected by birth-related cerebral palsy
To demonstrate that such programs are more effective, financially efficient, and conducive to improving medical care and systems than the current fault-based medical liability process
Term, birth-related cerebral palsy neonates with a birth weight of at least 2,500 grams who survive 90 days after birth and exhibit all the essential criteria of neonatal encephalopathy within the first seven days of life would qualify for the project and its afforded benefits. All benefits would be second to existing public and private insurance and entitlements. A care coordinator would be assigned to assist the family to obtain benefits and help determine needs. Respite care, home and van modifications, and educational support services would be potential benefits. Benefits would be available for life.
The project’s board of directors would be comprised of stakeholders and cerebral palsy experts. The board would determine additional eligibility for inclusion if there are irregularities attendant in the child’s birth. These irregularities could include neonates with inadequate delivery information to establish criteria or out-of-hospital births.
The project’s Program Benefits Committee members would be appointed by the board and include, among other stakeholders and providers, a family law attorney, a physical therapist, and an insurance benefits expert. This committee would determine benefits, and disputes would be resolved by a defined arbitration process.
The Medical Review Board for each case would include providers from involved specialties, a cerebral palsy family representative, a patient safety representative, and representatives from the hospital where the birth occurred. Providers and other personnel present at the birth would be included as requested, and all necessary records for review would be provided and protected.
The review board would be afforded peer-review protections and have no disciplinary authority unless it finds an immediate threat to public safety. In that case, a report would be made to the appropriate regulatory board. Aggregated and de-identified information of use to the health care community would be published as the review board deems appropriate, and a privileged report would be submitted to the birth hospital. These actions would not preclude institutional peer review. Medical review would be conducted as a learning opportunity, not as a forum for finding fault.
Funding would come from insurers and self-insurance funds currently providing liability coverage. Contributions would be based on prior expense experience in settling and defending term cerebral palsy cases. There will be an annual expense and overall program report submitted to the commissioner of insurance and the Colorado Legislature. Should the program become actuarially unsound, it would be terminated and liability action might be filed.
The project will not likely be introduced this year. Members of the Colorado Section plan to meet with sponsors and other stakeholders after the current legislative session ends.