For some families, watching their children swim is commonplace. But for Christine, who requested we use only her family members’ first names to protect their privacy, watching Alison learning how to swim for the first time was a huge victory. Alison, now 9, had been born with an airway that was too small, and for her entire life before this, she relied on a breathing tube, called a tracheostomy. While doctors hoped that they would be able to surgically create a new airway for Alison someday, she had to wait until she was older and stronger to consider the delicate procedure.

Last summer, Christine saw something that she’d been looking forward to for years. To the Central California mother, it represented her daughter’s resilience and tenacity. Christine’s youngest daughter, Alison, jumped into a pool.

Meanwhile, as Alison tried to live as normal a life as possible, the family came to depend heavily on in-home nursing care. First for just eight hours a week, and then for eight hours a day, Alison’s nurses helped Christine and her husband with the around-the-clock care. Alison’s tracheostomy tube needed to be cleaned and suctioned regularly; a few times, it fell out, requiring quick action so Alison could continue to breathe.  

Over the years, different nurses came and went, and sometimes the schedule needed to be adjusted, but overall, having a nurse, especially one who could accompany Alison to school, was crucial to creating the best life possible for Alison. Then, at age 7, Alison’s surgeon felt ready to begin preparing her for removing her tracheostomy. This was exciting news, but for Christine, it was also nerve-wracking. She worried whether or not the surgery would work, and what it would mean for Alison’s quality of life. There was a lot to coordinate with her doctors in Stanford from their home in Kings County. “And then we get this letter in the mail one day from CCS,” said Christine. “They were denying nursing care for Alison.”

Since Alison was born, the family had been relying on California Children’s Services, or CCS, to manage her many complex medical needs. CCS is a statewide program providing health services to children and young people under 21 with certain diseases and disabilities. According to the most recent data released in September 2024 by the California Department of Health Care Services, 188,000 children were actively enrolled in CCS. While a crucial lifeline for many, the program is notoriously complex. Many families caring for children with special health care needs find navigating the CCS paperwork and bureaucracy overwhelming. Christine and her family had few difficulties, until the shocking news that her nursing care was no longer being considered required.

“Their premise was that the care the nurses gave her was ‘routine’ and therefore not needed,” said Christine, who explained that CCS had their own doctor who “supposedly read over her medical history” and made the determination without consulting the doctors Alison saw regularly. On the back of the denial letter, Christine read CCS’s instructions for filing an appeal on their website. She hoped that things could be resolved quickly.

But the appeals process, the family soon learned, was difficult to navigate and extremely time-consuming, and they’re not the only ones who were experiencing this. Through their work with CCS beneficiaries across California, the National Health Law Program was aware of how difficult it was to find complete and practical information about challenging CCS’s decisions. Stories like Alison and Christine’s helped propel the organization to create the CCS Due Process Toolkit, a new document designed to help families know their rights and manage their appeals.

“As health policy lawyers, we really want to make sure children in the CCS program and their families understand their due process protections,” said Alicia Emanuel, a senior attorney with the National Health Law Program’s Los Angeles Office, which prepared the toolkit.

In 2022, the National Health Law Program surveyed more than 100 families to learn about their experiences with CCS notices, hearings, and appeals. The organization’s first major finding was that many families are unclear about their rights when CCS denies a service for their child. Of the 85 English-speaking families surveyed, 16 reported that their child had been denied a CCS service, including medical equipment, home nursing care, medical tests and physical therapy. Of the 20 Spanish-speaking families, two had received denials.

The survey found that most families were unaware that they could ask Medi-Cal to cover a service that CCS had denied, even though they were also enrolled in Medi-Cal. Since most families that had received a denial ended up paying for their own equipment or service, NHLP concluded that the Department of Health Care Services could do more to let families know about their due process rights.

“We come to this work with the awareness that if a child doesn’t get an oxygen machine or a life-saving medication there can be very grave consequences,” said Emanuel. “So we try to put practical tips throughout the toolkit to make it as accessible as possible.”

In Alison’s case, Christine was able to connect with an attorney through a friend whose child is also enrolled in CCS. The attorney helped Christine request ongoing care while they waited for the appeal to move forward, and they only lost access to Alison’s nurse for a week. And yet, the difficult process continued. After filing the initial appeal, Christine received a notice that Alison had been re-approved for nursing. Relieved, she and her lawyer withdrew their case. “Lo and behold, a month later we get another denial,” said Christine.

The law program’s survey makes it clear that the confusion and miscommunication that Christine experienced is common among families issued denials by CCS. Many families found that their children’s needs were urgent, and they could not wait for a decision from CCS, forcing them to pay for these services out-of-pocket.

Now, the law program hopes that the Due Process Toolkit, created in collaboration with Disability Rights California with support from the Lucile Packard Foundation for Children’s Health, will distill some of the necessary information down to help families understand what their options are at all stages of the appeals process. The toolkit, Emanuel explained, is intended to be a “general blueprint of steps and options they have [so] they can take the approach that best meets their child’s needs.”

After their second denial, Christine and her lawyer spent months going back and forth with CCS and Medi-Cal, acquiring letters of medical necessity from Alison’s doctors and giving the programs full access to her medical history. Finally, they went to court. While presenting their case to a judge over the phone, Christine said that hearing CCS’s refusal was hurtful. Fortunately, by the end of the call, the judge had decided that withdrawing nursing care from Alison was not in her best interest. 

Alison was able to keep her nurse until her surgery. It took a few follow-up procedures, but then, in May of last year, Alison was finally free from her tracheostomy. Breathing under the power of her own airway, she no longer needed a nurse. Her journey with CCS was over.

Reflecting on their experience with the appeals process, Christine is grateful that her attorney took their case pro bono; she’s not sure if she would have been successful without legal aid. Still, she describes the ordeal as “an epic waste of time and money” for all involved, saying that her “eyes were opened” to the challenges of so many families across the state. She wishes that all families could have outcomes as positive as Alison’s, and the law program team is optimistic that the tool kit will make that more likely.

Seeing her daughter finally able to enjoy the simple pleasure of swimming, something many of her peers take for granted, Christine is thankful to be on the other side of her complex care. “When they handed us her diagnosis at two days old,” said Christine, “this is what we had always hoped for.”

California Health Report receives grant funding from the Lucile Packard Foundation for Children’s Health but is editorially independent.