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Medicaid Beneficiaries Who Need Home and Community-Based Services: Supporting Independent Living and Community Integration

Irene, Age 79, Valrico, Florida

Medicaid HCBS will help daughter continue to care for mother with Alzheimer’s disease at home.

Irene has Alzheimer’s disease, and her condition has worsened significantly over the last six to 12 months. Irene needs help with dressing, preparing meals, and using the bathroom at night. She cannot be left alone and wakes up at night confused and crying. Irene lives with her 45 year old daughter, Julia, in a single family house. Julia moved from Colorado to Florida to care for her mother about five years ago. Julia says that “she’s not my mom anymore mentally,” but physically, Irene is healthy. Irene always was very independent, raising four children as a single mother. She was athletic well into her 60s, engaging in swimming, diving, tennis, softball, and whitewater rafting.

At this point, anything helps. . . in retrospect, I would have applied for services earlier rather than later.”
-Irene’s daughter, Julia

Irene has Medicare and is about to receive Medicaid, including 10 hours per week of in-home care. For the last six months, Julia has paid out-of-pocket for a companion aide, four hours a day, three days a week, to help with Irene’s care. However, Julia has concerns about her ability to continue to afford the companion aide because she left her job in Colorado to care for her mother full-time.

Julia says that her family always had talked about having Irene remain at home instead of going into a nursing home when Irene got older. Initially, Julia thought that she could handle Irene’s care but says that it has been very stressful, and her own health has deteriorated as a result – she has gained weight and her blood pressure has gone up. Julia’s plan is to keep Irene at home “as long as possible” but says that a lot depends on her continued ability to provide Irene’s care. Julia says that this has become increasingly difficult as Irene’s disease has progressed, and there is a “time when you want to give up.”Julia also believes that her mother now needs more care than the companion aide can provide. For example, Julia worries that Irene may start falling because she has started to “shuffle” while walking and is “wobbly.” Irene also has started wandering from the house. Julia installed door alarms, but recently Irene got out of the house, climbed over a fence, fell, and rolled down a slope in the front yard. Julia now needs to ask a neighbor to watch her mother while Julia walks her dog.

Julia started applying for Medicaid home and community-based waiver services for Irene about a year ago, after learning about the program at a local Alzheimer’s support group. She suggests that the application process could be streamlined to avoid the “exact same interview with three different people.” Julia says that she initially was “nervous” about applying for services because she thought that there were “probably people worse off” but now thinks that she was “in denial” about how difficult it had become for her to handle Irene’s care. Now that Irene has been approved for Medicaid HCBS, her case worker is “trying to rush things” to get services in place.

Margot, Age 38, Charlotte, North Carolina Mark, Age 43, Nashville, Tennessee