TJC Story Blog
Christina Wolfe lives in Nashville, Tennessee, with her 25-year-old daughter. Her daughter has some disabilities and has been enrolled in the ECF CHOICES program since 2016. It has been a constant and tremendously difficult struggle for the family to find a reliable home caregiver for the daughter. Ms. Wolfe thinks that a number of factors contribute to the caregiver problem that they have experienced, including that the caregivers are not getting paid anywhere close to what they deserve and that often the caregivers who are providing care under a health insurance company are not given health insurance or other benefits themselves. Ms. Wolfe explained how when her daughter became enrolled in the ECF CHOICES program, there were lots of great options in the program, but the resources weren’t lined up to properly provide those options. Ms. Wolfe shared that the programs’ services are fabulous–if they work. She said the ECF CHOICES program had some requirements for the enrollee to work or volunteer, but her daughter couldn’t do those things without a caregiver being with her. Because it is so hard to find a reliable caregiver to cover enough hours, Ms. Wolfe can’t work when she has to care for her daughter, which has basically forced the family into poverty.
Ms. Wolfe shared that her daughter suffers from PTSD and abandonment issues, which has made the frequent turnover of caregivers especially traumatic. With one of the new caregivers, it took her daughter 6 months before she would finally let the caregiver touch her, so Ms. Wolfe was having to take over a lot of the responsibilities. She also said that the agencies often do not share sufficient details about the client with the caregiver before they place the caregiver. She’s learned a lot over the past few years and that, other than the caregiver issue, her daughter’s TennCare has been “such a blessing,” and they haven’t run into any other problems. Ms. Wolfe’s daughter finally has a fabulous new PA that the family really likes, and they hope that the PA can stay with them for years to come!
Ms. Wolfe has also had difficulty getting health insurance for herself. She has finally been able to get a plan through the Marketplace that she described as “fabulous” with very minimal cost, but she described the past year trying to get affordable health insurance as being horrible and making her a “nervous wreck.” She also suffers with PTSD and has problems walking into doctors’ appointments because she worries about what will happen if she is asked for money if she doesn’t have insurance that will cover her services. She talked about how close she was to falling into the Medicaid coverage gap. The plan she was looking at last year had $681/month premiums and she has a medication that costs over $300 a month. She receives $700/month in alimony which would not even cover those medical costs. Ms. Wolfe shared that she had an infection last year and she did not want to go to the hospital because of the Covid-19 pandemic and of the cost of seeking care. Luckily, she was able to get care at a Saint Thomas hospital and they helped her with her bills. She called a lot of places and often the people she talked to were not helpful. TJC was able to help her and help her answer questions about filing taxes as well. Ms. Wolfe is sharing her experiences with finding a reliable caregiver for her daughter and finding affordable health insurance for herself to highlight the need for more affordable health insurance options and the need for more reliable caregivers who receive appropriate pay and benefits.