TJC Story Blog

Apr 2021


Katie Beckett Recipient

In October 2020, a baby with a rare genetic disorder was born to a family living in Memphis. The disorder presents complex health complications, including severe heart defects. These heart defects require the infant to undergo a series of open-heart surgeries. He has already had one open-heart surgery and will need at least two more. The infant also needs a G-tube and can’t go to daycare because of his high level of needed care. The parents both work and have insurance through an employer. However, the insurance covers hardly any private duty nursing hours, so one of the parents hasn’t been able to go back to work. The family had begun to pay out of pocket for nursing care just so they could have a break, since caring for a medically fragile infant full-time is overwhelming. The family calculated that if the parent went back to work to keep their employer insurance, they would spend almost their entire income paying for nursing care. They said it would cost about $100,000 a year for private-duty nursing, which is not affordable for most families.

When the family was at the hospital with their infant, they were told about the Katie Beckett program. The parents began looking into the program online and found that a lot of the information was difficult to find on the website. They applied for their infant and were approved quickly for Part B. They applied in January of 2021 and got the money in March. The family knew that the infant should qualify for Part A, though, which is for children with more severe needs and who require more resources. The family talked to lots of doctors who agreed that the infant should be eligible for Part A of Katie Beckett, and they went through and highlighted the infant’s medical documents to identify the places that showed the level of need that should qualify him for Part A.

The Part A application was denied, so the family called TennCare to ask about the denial. They found out there are quite a few qualifications that older children are screened for that could qualify them for Part A, but for infants there are much fewer qualifications that did not seem adequate. The family knows others with very sick infants who definitely should qualify and who need help immediately. The screening process did not seem to work for their infant, and if other families with sick infants run into the same problem, it could become very financially overwhelming while they wait for an appeal process without receiving any benefits. The family described that “waiting 6 months is an eternity” for families who need immediate help caring for their sick children.

The family has a CaringBridge website where they update family and friends on their infant’s health. They posted about their Katie Beckett Part A denial on the website, and one of their coworkers responded recommending someone who might be able to help. They contacted that person, who referred them to Jane Beasley at the Tennessee Justice Center. They called Jane and talked through some options. Jane recommended they appeal the denial and that they call their state representatives to inform them of the situation. A case was opened for the family, and they began working with TJCs Vanessa Zapata, who helped them with their appeal and who said she would offer support if the appeal went to a hearing. The family also called their state representative and their state senator. They never heard back from the state representative, but a legislative aide with their state senator called back the next day saying they would look into the situation. Within 48 hours, the denial was reversed, and the infant was approved for Part A of the Katie Beckett Waiver.

The family has never been eligible for state benefits before, so all the red tape that came with navigating the TennCare program was new to them. They knew that since they were being told that their infant was not eligible for Part A, something was wrong with the criteria that was being used. They are now receiving the Part A benefits, and things seem to be working smoothly. They have learned, though, that once their child is old enough to walk, there will need to be another adult that is home with them at all times with the nurse. This means that if the parents are both working, they will have to hire a nanny to stay with their child in addition to having a nurse there the whole time. The family is fortunate that they can afford to pay a nanny, but they know that for many other families this could add a big financial strain.

They think the initial screening of their infant for Katie Beckett, which was done by a therapist, was not thorough, which likely led to the initial denial. Through this process, the family has learned the power of legislative advocacy. They don’t know what would have happened if their state senator’s office had not taken action so quickly. They also shared that it was a relief to find TJC and to work with people who could explain what was going on. The process has been a big learning curve for the family, but they are glad to finally have their child enrolled in Part A of the Katie Beckett program!