Cerebral Palsy Blog

Cerebral Palsy Blog

Cerebral Palsy and California's Home Care Services Consumer Protection Act of 2013

Tuesday, October 29, 2013

In mid-October, California Governor Jerry Brown signed the Home Care Services Consumer Protection Act of 2013. It requires improved training, better oversight, more rigorous background checks and accountability for the home healthcare industry. People with cerebral palsy may be healthy and independent enough to live at home but may need help with ambulation, bathing, eating, using the toilet and other daily activities that such in-home caregivers can provide. Until now, in California, companies that provided these types of custodial and non-medical services were not regulated strictly enough according to some advocates for the disabled.

AB 1217 was written by Long Beach Assemblymember Bonnie Lowenthal and was signed by the governor on Sunday October 13, according to a recent press release from her office. When the law goes into effect next year, it will require thorough background checks on workers by their employers, at least five hours of training for each employee, and certification through a state licensing process. The law also provides for an online registry of all in-home aides. Some workers may be disqualified from getting licensed as in-home aides if they have been convicted of certain crimes such as elder abuse, fraud or prostitution.

Home healthcare agencies that provide nurses to people with cerebral palsy and other medical conditions are well regulated. These organizations often work closely with doctors and other healthcare providers. But in-home service providers that offer only non-medical care have been less rigorously scrutinized and often operate quite independently. The new law should satisfy many who have been critical of California's oversight of the industry. Organizations who officially endorsed the Home Care Services Consumer Protection Act of 2013 included the advocacy groups the Arc: For People with Intellectual and Developmental Disabilities and United Cerebral Palsy.

What is Selective Dorsal Rhizotomy Surgery and is it Right for your Child with Cerebral Palsy?

Wednesday, October 16, 2013

For some children whose ability to walk has been severely compromised as a result of CP, selective dorsal rhizotomy (SDR) may provide relief. The surgery is an irreversible neurosurgical procedure that is performed to reduce spasticity that is often a symptom of CP. The procedure has been practiced for over 100 years but fell out of favor until the 1960s when it was modified and modernized (Selective dorsal rhizotomy for spastic cerebral palsy: A review). Parents contemplating SDR for their child may be able to rely on new resources to determine if the procedure is right for their family or if another treatment option is best. SDR is only one of many surgical procedures that may benefit a person with CP

Spastic cerebral palsy prevents the brain from properly controlling muscle contractions, joint contractures and often makes responses to stimuli erratic. The difficulties can make movement difficult and lead to persistent pain and other challenges. Many of these challenges are created by excessive flow of nerve impulses; SDR interrupts this flow and is designed to reduce stiffness for people with particular varieties of spastic cerebral palsy. The surgeon typically gains access to the nerve roots through the patient's spinal column and severs many of the roots to reduce the excessive muscle contractions that lead to spasticity. Though this reduction in spasticity may allow for greater ease of movement, the long-term impact of the procedure has been little understood. Dr. Hurwitz of the University of Michigan recently published a study designed to explore the long-term impact of the procedure for people who had it performed when they were children.

In "Functional outcomes of childhood dorsal rhizotomy in adults and adolescents with cerebral palsy," Dr. Hurwitz analyzed and evaluated the following in relation to SDR: medical outcomes, interventions, satisfaction with life and subjective impressions about the procedure in older adolescents and adults who underwent the surgery when they were children. His research revealed that the majority would recommend SDR to others and only a small number reported negative feelings about the surgery and its impact on their lives.

While Dr. Hurwitz did focus his study on people who had SDR performed on them between 1986 and 2000, the sample included only those patients who had the surgery performed at two particular academic medical centers. Thus the sample may not be representative of your particular situation. Though this study may be helpful for parents of children with cerebral palsy, each family should seek out as much information as possible despite the positive reports regarding SDR in the study. Because the procedure is irreversible and does involve the severing of nerve roots, alternatives should always be considered and extensive information should be gathered before proceeding.