Health Care Story of the Week - 8/26/09

Brandon has two young sons, ages 11 and 5. In 2004, he was playing with his son on a trampoline when a fall caused severe injuries to his spine. A quadriplegic as a result of this accident, Brandon now relies on TennCare-provided nurses and aides to care for him. Brandon went from working full time with his father as an industrial laborer, to needing constant care. In his words, he “depends on someone else’s hands” for everything he does. He also has a tracheostomy, which causes breathing problems and requires skilled care. Brandon is an active father despite his disabilities, and enjoys spending time with his sons. He’s also a college student, and is in the middle of his fifth term towards a degree in Business and Accounting. The one-on-one attention that his nurses and aides provide is working miracles for his health, and Brandon is slowly regaining some movement in his left arm.

A change to TennCare’s home health policies last fall, and the disappearance of a TennCare eligibility category, now threaten the life that Brandon has built since his accident. Essentially, TennCare is now requiring Tennesseans who need extensive care to make do with a dramatic reduction in home health hours or go into nursing homes, where the care would ostensibly be cheaper. Adding insult to injury, Brandon may lose his TennCare altogether because TennCare closed the category of eligibility Brandon qualified for.

Brandon says that there is more to care than its price tag, and his doctors agree that Brandon’s health would suffer in a nursing home. His tracheostomy requires frequent suctioning, and his doctors fear that he wouldn’t get the attention needed to keep him safe in a nursing home. Brandon lives with his grandmother, who does what she can to help, but is not physically able or properly trained to keep her grandson healthy and safe. Without constant in-home care, Brandon will be forced into a nursing home, to drop out of school, and to leave the community where his sons live. If Brandon loses his TennCare entirely, he’ll lose all his services and be left with no option but institutionalization, all before his 30th birthday.

The cuts that threaten Brandon’s family are in stark contrast to the recent promises to increase home and community based services for disabled Tennesseans. Cutting disabled individuals from TennCare flies in the face of the national movement to provide quality affordable choices for all Americans. Tennessee ranks among the worst states for home and community based options. Solutions such as the Long Term Care Choices Act were touted as improvements that would help keep families like Brandon’s together. Unfortunately, the State has not honored its promises, and many families now find themselves with no choice but to split up or face inadequate care. Likewise, the state has promised for years to open the Standard Spend Down program, a way for people losing TennCare to get back on if their medical bills are nearly equal to their monthly income. Still, the program remains closed, TennCare retains a surplus of millions of dollars, and Tennesseans like Brandon suffer.

Determined to keep his family together and to stand up for disabled parents across Tennessee, Brandon contacted the Tennessee Justice Center (TJC). With the help of TJC and Memphis attorney Linda Casals, Brandon is fighting his home health cuts in Chancery Court. Brandon has shared his story with legislators on the State and Federal level, and continues to be a strong advocate for all families struggling with health care issues. TJC recognized Brandon as a Father of the Year in 2009, and held a reception in Memphis in his honor.

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Health Care Story of the Week

Jennifer Perry is an energetic 32 year old. She volunteers at the Montgomery Christian Academy, where music students know her as “pretty Miss Jennifer.” Jennifer likes singing opera and art music, and has a Bachelor of Arts with a vocal concentration. Many of the people she met as President of the Handicap Educational Liaison Partners were surprised to learn that she is disabled, because she looks able-bodied and healthy. But Jennifer has advanced multiple sclerosis (MS), a disease that makes the brain and spinal cord unable to communicate with each other.

Jennifer had been on TennCare for about seven years when she received a letter that said she would be cut off later this month.

Among other symptoms, MS gives Jennifer blurry vision, numbness in her fingers, difficulty balancing, breathing, and moving, urinary and bowel difficulty, hypersomnia (similar to narcolepsy), hives, a weak immune system, severe allergies, muscle spasms, chronic pain, severe migraines, blackouts, mood disorder, and depression. She has had to have her front teeth replaced multiple times due to falling, and was recently forced to quit her job at a household appliance store because her symptoms were getting so bad.

Due to the two year waiting period, Jennifer will not be eligible for Medicare until late 2010. Without TennCare or Medicare, she will not be able to afford most of the roughly 25 medications she needs to remain stable. Her medications cost about $60,000 per year, but her annual income is below $10,000. “If I don’t have my medicine, something bad is going to happen to me,” she said.

Despite her disability, Jennifer worked from age 16 until just a few months ago, when her symptoms got so bad that she was forced to stop. Then, Jennifer’s father passed away suddenly. This and her escalating symptoms made her decide to move in with her elderly mother, who is also disabled. But Jennifer’s troubles weren’t over yet. Soon afterwards, she received the letter about her TennCare ending. Jennifer and her mother pray that Jennifer will find some way to get the health care her life depends upon.