Experimental State Health Program May Hurt Medically Fragile Children, Including Me

“Change is extremely difficult, and sometimes even fatal, for children like us with special health care needs. Like many who are experiencing this transition, I am struggling, too,” writes the author.  Photo: istockphoto.com

I was born with a rare genetic disorder, and have seen the same specialists for nearly all of my life.

Now, because of changes to the state’s health program for children with chronic medical conditions, I will likely need to change doctors. For most patients, changing doctors is time consuming but manageable. But for medically fragile children like me, changing doctors can be life threatening.

My two hearing specialists have expressed reluctance to participate in the new health program, called the Whole Child Model. I will likely be forced to find a new and unfamiliar ear, nose and throat doctor in an already overburdened provider network. Though I have acquired a new audiologist, he is twice as far away and timely access is an issue. I believe I will be unable to see my neurologist after the continuity of care requirement is met unless I can prove it is medically necessary—under the CCS program, I would have been allowed to see him until I was 21.  I’m sure I’m not the only one experiencing these changes.

About 9,500 medically fragile children in California who are low-income have already been moved to the Whole Child Model program, and 19,000 more will be enrolled on Jan. 1.

JC Aguirre III

While the state says the program will streamline care for us, I have serious concerns about how it will affect my health.

For most of my life, I was enrolled in the California Children’s Services health program. My family has very little money, and as a result, I am also enrolled in the state’s low-income health plan, Medi-Cal.

I was born with Oculo-Auricular-Vertebral Syndrome, a rare genetic disorder that caused me to be blind and deaf on my left side. I have malformed vertebrae in my neck, a deformed heart and had 18 surgeries before I was 9. Other children who are also being moved to the Whole Child Model have cystic fibrosis, hemophilia, cerebral palsy, heart disease and cancer.

Change is extremely difficult, and sometimes even fatal, for children like us with special health care needs. Like many who are experiencing this transition, I am struggling, too.

I just got a new hearing aid before the July 1 transition in Merced County and received all the supplies I would need to maintain it. Now, however, I must get prior authorization for any supplies needed to maintain and operate my hearing aid.

I feel that instead of streamlining care by consolidating it into one organization, this change has only added extra layers of complexity to an already hard to navigate system. Like my hearing aid supplies, diabetes supplies will also need prior authorization, which can be life threatening.

Now, on top of having to live with their condition, medically fragile children in Merced County who have Medi-Cal will have to constantly prove that whatever they need is medically necessary.

The phase-in approach used by the state Department of Health Care Services does not take into consideration the demographics of each county, and instead transitions children according to health plan. I believe that the department should reinstate California Children’s Services until it has considered the long-term sustainability of the new program and is ready to transition all Children’s Services children, not just the ones on Medi-Cal.

The only way to make the Whole Child Model work now would be to streamline the authorization process, streamline the transportation process and make billing universal, with statewide billing forms and statewide billing codes so that a doctor could bill any health plan throughout the state of California the same way.

It is unfathomable that the Health Care department would single out this one group of economically challenged children to undergo this experimental program, especially considering the status of Merced County’s provider network, the agency’s lack of a comprehensive plan, and that the Medi-Cal managed health care plans are developing new policies as they go along.

Meanwhile, children who are financially better off and are enrolled in the California Children’s Services program do not have to go through this change. The result is that the transition is creating unequal access to health care for low-income, medically fragile children.

It is unethical that low-income children are the only ones required to make this transition. They should remain under the California Children’s Services program until a more comprehensive plan is put in place to transition all children at the same time, in a safe manner, to minimize the risk of injury or death and promote equality in the health care system.

JC Aguirre III is a junior in high school who loves science, Polynesian dancing and studying Polynesian culture. He lives in Merced County.

X Close

Subscribe to Our Mailing List

  • This field is for validation purposes and should be left unchanged.