#EveryoneDeservesCare: Vicki's Story
November 30, 2022 / #EveryoneDeservesCare
Vicki Linder loves gardening. She loves her pets and having her daughter as her caretaker in the evenings. Vicki lives in Cincinnati, Ohio and is predominantly bed-bound due to multiple physical disabilities and thus dependent on the assistance of an aide to complete activities of daily living such as bathing, dressing, and feeding. Her daughter, an already overworked attorney, ends up working 80 hours a week when you include the care services she provides and has yet to be paid for.
Vicki also needs assistance with other vital tasks such as handling her finances, cleaning her home, and getting to doctors’ appointments. Because of this, she is approved to receive numerous hours per week of consumer-directed services through Ohio’s Choices Home Care Attendant program, available through MyCare Ohio and PASSPORT, both of which Vicki has tried using. These programs also assists with money management, correspondences, yard work, housekeeping, and other vital services related to independent living. All of these services are vital for Vicki to remain active in her community and daily life.
Remaining at home and in her community makes a world of a difference for Vicki. She can do things at her own rate, keep practicing her religion the way she wants, keep her pets, and her daughter is home in the evenings. In a nursing home, she would be without these liberties. Vicki refuses to go into a nursing home and will do everything in her power to remain independent, as she has witnessed firsthand the harm others have experienced.
If Vicki had all the care she needs, she could thrive in her community. If she had reliable transportation, she could be more active in the community—attend synagogue, see friends, go to the theater—instead she’s stuck at home.
“I’m not participating in life,” Vicki fretted.
Vicki’s lack of care has affected her in innumerable ways. The State’s assessment tool, which calculates the number of weekly service hours she is approved for under the Choices program, fails to account for non-personal care services she qualifies for. This issue came up in both the PASSPORT and MyCare Ohio programs. As a result, Vicki has had to challenge the number of weekly hours she’s entitled to on multiple occasions because the hours were insufficient to meet all of her needs. She understands that many others are being denied access to vital services they are owed due to this flawed assessment mechanism.
Vicki fights for herself and others navigating the barriers and shortcomings of MyCare Ohio, and the PASSPORT program. She has filed complaints, reached out to news outlets, and written to the State, its legislators and even to Washington D.C. to demand that something be done about the mishandling of these programs. Vicki acknowledges her privilege in even knowing what her rights are and having a daughter who is an attorney who can help her.
"I'm frustrated, depressed, and anxious, as there seems to be no hope that the programs meant for the disabled will ever get the attention they need,” confessed Vicki.
The barriers that Vicki continues to face are never-ending. Under the Choices program, Vicki has the right to choose the hourly wage for her care providers, and yet one of the managed care companies under the MyCare Ohio program denied her this choice. Additionally, under both the PASSPORT and MyCare waiver programs, Vicki was unable to have her dietary restrictions met by a company and received much disrespect and lack of compassion in response to her requests for any services that would be covered.
“These programs are meant to protect people who arguably need the most assistance, and yet it is this very type of program that has caused significant stress, anxiety, and hardship in my life for the last few years,” Vicki remarked on the waiver programs.
As a result of the direct care crisis, the availability and quality of care providers has greatly decreased. Vicki complains of aides who stole from her, neglected her, and were extremely unqualified to correctly care for her in the first place. Vicki speaks candidly about the workforce crisis: “Right now there are no aides available. People have found other jobs that pay more money, and they don’t want to be aides and not have benefits...my daughter went through the lists of people that they had as providers and we could not find one person.”
The most upsetting part of Vicki’s rightful concerns about MyCare Ohio’s and PASSPORT’s management due to her mistreatment, is that she has been penalized when she has voiced her concerns or objected to the administration. The managed care company Vicki was receiving assistance from terminated her Medicaid waiver services and deprived her of the ability to pay a qualified provider for almost two months because she indicated her intent to file complaints/grievances each time she experienced a perceived violation of law or policy. Exhausted, but not defeated Vicki asserted, “Fighting these complications has taken a heavy toll on me, but I want to see the light at the end of the tunnel and reach justice.”
When asked what changes need to be made to improve the direct care system, to Vicki, it’s essential that an education course is put into place for case managers who are going to be managing cases under the Choices program. The current case managers have not been taught the meaning of a consumer-directed waiver program—the care plan is centered around what the consumer wants and is not up to the managed care company to make the decisions.
Vicki proclaims, “I have a right to decide who my care team will be. Nobody seems to get that this is my life...not theirs!”
Ultimately, Vicki asks for her situation to not go unnoticed and for those in charge to address the problems within the current care system and workforce crisis. “I’d be fine if I got the help I was supposed to get...they need to listen to what I want, what I need,” declared Vicki.