Why I’m fighting the state on behalf of my son

Yuki and Nate Baba. Photo from Yuki Baba.
Yuki Baba and Nate Kyle. Photo from Yuki Baba.

Nate Kyle is 8 years old and diagnosed with a brain malformation characterized by lack of proper wrinkles on the brain. Since he cannot sit up on his own, he spends a lot of time on his blanket on the floor. When he is healthy, he attempts to logroll. As he succeeds, a big grin emerges on his face, and he is enthusiastically applauded by his dad and his mom — me.

When my son is on his wheelchair, his upper body is supported by a chest harness as well as neck and head supports. Gravity is not a friend of Nate’s extremely low muscle tone. In order to slow the progression of his scoliosis (abnormal curvature of the spine), Nate wears a torso brace. One of Nate’s doctors called him “a noodle” as he is so floppy. Nate was diagnosed with cerebral palsy by his physicians.

For children like Nate who have significant physical challenges, it is extremely important that they participate in physical therapies and have proper medical equipment, so they can avoid injuries, maintain the existing abilities and improve their physical functionalities. Medical Therapy Unit (MTU) of California Children’s Services (CCS) is a state agency that supports children with such challenges.

MTU provides physical therapy, occupational therapy, medical equipment and the consultation to California children who have “CCS eligible medical conditions”. The MTU specialists assess the clients’ therapy and equipment needs, including the wheelchair, walker, stander and assistive technology tools. Such highly specialized knowledge, skills and experiences of the MTU specialists are invaluable to the children with severe motor skill problems, and often cannot be found among the therapists in the hospitals and public schools.

Yet for Nate and others in his position, those services are not available because the state has decided they do not qualify for assistance. And the bureaucracy that makes those decisions is difficult to navigate, even for someone who has the time and resources to do so. The state needs to fix this problem before more kids suffer.

It is evident that Nate needs the MTU services. However, we were notified that Nate did not have “CCS qualified medical conditions” and therefore cannot receive the MTU services. It was a big surprise, as “cerebral palsy” is one of the CCS qualified medical conditions.

All of Nate’s physicians said that Nate had cerebral palsy, but the state uses an extremely narrow definition of cerebral palsy that is inconsistent with commonly used medical definitions. In defining cerebral palsy, none of the major medical institutions in the U.S., that I know of, use the narrow and limited symptoms that CCS does.

Cerebral Palsy Foundation, a New York-based clinical research organization, defines cerebral palsy as follows, “Cerebral Palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbance of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.”

Under Cerebral Palsy Foundation’s definition, and under the other major medical institutions’ definitions, Nate clearly has cerebral palsy. Where did the number of very specific conditions included in CCS definition of cerebral palsy come from then?   I asked CCS to identify the sources it was using for its definition, but CCS has not provided me with the answer.

Nate is not alone in being denied CCS’s MTU services. I have met other parents of hypotonic children who were denied the MTU services. To us, the parents of severely disabled children, this is devastating and extremely frustrating.   MTU was established to support the children like ours, but our children are denied MTU services because of the unreasonably narrow definition of cerebral palsy.

The conditions that CCS mandates to qualify children for the MTU services under cerebral palsy are unfounded in the medical community. CCS should eliminate the unreasonably narrow conditions under the cerebral palsy qualification and support all the children who suffer from hypotonia due to the lesion in their brains. These children face tremendous physical challenges everyday and desperately need MTU services.

Yuki Baba is from Yokohama, Japan and lives in Berkeley with her husband Peter, son Nate and cat Lester.  She is a freelance translator and enjoys growing vegetables and baking pies in her free time. 

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