Jane Hash has been a trailblazer her entire life. Born with osteogenesis imperfecta, a genetic condition that caused her bones to break easily, Jane was the first physically disabled student to attend public school in her hometown of Madison, Ohio. In 2014, she co-founded a nonprofit organization, Classy Little Fashions Foundation, which supports adults with physical disabilities who have non-standard body types by developing and supporting venues that make age-appropriate fashionable clothing accessible.
So, being among the first to be enrolled in a new program for people who have both Medicare and Medicaid was nothing new for Jane. The program, MyCare Ohio, was launched in 2014 with the aim of better coordinating needed care – physical health, behavioral health, and long-term services and supports – for this population.
Jane’s primary goal once she enrolled in MyCare Ohio was to maintain her long-term services and supports benefits. For years, she had relied on the assistance of a team of personal care attendants (PCAs), requiring 14 hours of assistance each day. Because of her condition, Jane weighs only 38 pounds and is a non-ambulatory wheelchair-user, so her PCAs assist her with bathing, dressing and meal preparation, sometimes referred to as “activities of daily living.”
Prior to the start of MyCare Ohio, Jane had received her PCA services under the state’s Medicaid home care waiver. Through this program, Jane was able to interview PCA candidates, hire, train and (if necessary) fire them. This autonomy is essential for people like Jane who live independently yet rely on others for care in their homes. Jane has very specific criteria for those that work for her. As she explains in her self-authored “A Home Health Guide to Making Me Happy,” PCAs must be exceedingly punctual in order to meet her bodily needs. They must be appropriate in public since Jane is so often attending meetings or classes. And, importantly, they must respect her privacy and give her space. Once Jane found someone she felt was a good fit for the job, the person would apply to the state to become an “independent provider” of PCA services and then begin work with Jane.
The process was relatively straightforward, but after Jane enrolled in MyCare Ohio, things changed. In the early months of the new program, the state changed third-party administrators, and independent providers went unpaid for weeks and months. Many independent providers, often low-income themselves, could not sustain themselves and had to leave their clients. Indeed, one of Jane’s PCAs left, meaning that her smaller team of PCAs became burned out as they were left to fill her 98-hour schedule with fewer people rotating shifts.
Though the payment issue was eventually resolved, Jane also found that the new PCA processes under MyCare made it difficult for her to keep a full team of PCAs engaged. For instance, the process by which PCAs are approved to become independent providers can take up to five or six months. And, the application itself is quite generic, requiring her PCAs to sort through questions that often have greater applicability to providers with medical training, yet failing to ask questions that are most relevant for PCA work.
One bright spot in Jane’s MyCare experience thus far has been her care coordinator, who fulfills a dual role as her Care Manager, through the Area Agency on Aging. The care coordinator, who has been with her for over a year now, comes to meet with Jane in person a couple of times each year and has been quite helpful in helping Jane get her wheelchair repaired. Despite this helpful and ongoing relationship, Jane does worry that the fact her care coordinator has limited access to her records with the health plan will hamper future coordination.
Ongoing challenges aside, Jane feels fortunate that she is able to navigate the system well enough to get by. And, she uses her experience to help other MyCare beneficiaries: whether as a founding member of her health plan’s consumer advisory committee or in her work as one of the first Member Co-Chairs of the Ohio Consumer Voices for Integrated Care Coalition, organizing MyCare Ohio members to improve the program.
Indeed, ever the trailblazer.
The needs and experiences of health care consumers — particularly people in marginalized or low-income communities or with complex needs and significant disabilities — are the driving force of the Center’s work. Documenting and amplifying patients’ real-life health care situations, in their own words, is central to our ability to create a health care system that works for all of us. Click below for video stories from some of the consumers we work with.