Clarksville residents Angelika and Ed “Willie” Williams did not hesitate when the need arose for them to provide care for their granddaughter, Justine.
Justine has always been an important part of Angelika and Willie’s lives. When Justine was 2, her parents separated. It was impossible for her mother to provide the care that Justine needed and work to provide for their needs on her own. So Angelika and Willie stepped in and adopted their beloved granddaughter. Angelika says, “Justine’s mother is a great woman, and she loves Justine very much. We stepped in to adopt Justine because we knew that we could make sure she was taken care of and had a good life. She had always been like one of our own children.”
Justine was born with a very rare condition called hydranencephaly, a condition in which the brain does not develop fully and instead is filled with fluid, creating pressure inside the skull. Generally, the life expectancy for children with hydranencephaly is under 1 year, but because of the love and care provided by her grandparents, 23-year-old Justine is able to share her love with her family and pets, whom she has always shown a special fondness for. As a child, Justine had a close bond with her cat, Mimi, who would always be by her side anytime she was in pain.
Because her condition can present a variety of symptoms, Angelika and Willie assist Justine with all activities of daily living, including coordinating her care and ensuring that she is safe.
In December 2012, the Williams learned that Justine’s TennCare insurance company was going to dramatically reduce her home health care services. These services are vital for Justine’s safety and ability to thrive. Angelika filed an appeal with TennCare and requested that Justine continue to receive her home health care during the appeal process. Just a few days later, she was told that Justine had neither the right to a hearing nor to the continuation of her care.
While tending to their own health issues and dealing with the stresses of the holiday season, the Williams did all they could to keep their granddaughter safe with the lower number of hours. They were confused, tired, and angry that Justine’s care was cut with no notice and no opportunity for a hearing. Angelika described it as one of the hardest time of their lives together, but their dedication to their granddaughter’s well-being never wavered.
Feeling overwhelmed and exhausted, the Williams sought help from the Tennessee Justice Center late in December. After reviewing their case, TJC found that Justine’s TennCare health maintenance organization (HMO) made a mistake. The HMO asserted that Justine was getting more care than allowed under TennCare policy, but they missed an exception that allowed her to receive an increased number of hours of care.
TJC wrote a letter to the State on her behalf, explaining the misunderstanding and requesting immediate reinstatement of Justine’s home health care. The State agreed that the HMO had made the mistake and her care was reinstated.
“We know what our granddaughter needs, and the Tennessee Justice Center had the legal knowledge to help her,” Angelika said. “We are so grateful for the TJC’s help.”
The Williams’ advocacy for Justine and their initiative to seek help saved the care that keeps her safe. The Williams steadfast care for their granddaughter is why they are named as one of our 2013 Honorees of the Year.
To read about our 2013 honorees, past honorees, and why we honor mothers, please go here.
Photo credit: Sally Bebawy