More than 11,600 older and disabled Marylanders with Medicaid have been waiting as long as a year for help at home. Some are being hospitalized, institutionalized or even dying in the interim.

These medically vulnerable residents — who need help with tasks such as bathing, dressing, cooking, cleaning and errands — are among a massive backlog of applicants for in-home care through Medicaid, the state-administered public health insurance program for low-income people. The Maryland Department of Health has just eight workers to process the applications.

Family members with their own work and family obligations are having to step in, and often cannot provide the level or frequency of care that their loved ones need. Caregivers often contend with overwhelming stress while their family member’s dignity, well-being and safety are compromised.

Adding to their stress, family caregivers often must manage an opaque and complicated process to get an application for Medicaid home- and community-based services approved. Many report having to make hundreds of phone calls, send hundreds of emails, and submit countless documents, while getting conflicting or inaccurate information from the state and other agencies.

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Rona Battle caught COVID in a nursing home around June 2020, her sister Jayne Felton said, during a short admission for rehabilitation after a fall. Battle, then 55, suffers from high blood pressure and diabetes and cycled in and out of the hospital for COVID-related complications.

At one point she was placed on a ventilator, and later needed a tracheostomy — where doctors cut a hole and insert a tube in the neck — to help her breathe. Felton said her sister, who was discharged to a nursing home in Anne Arundel County, was unable to speak for about a year, but once she began feeling better she expressed how badly she wanted to live on her own again.

Battle “doesn’t like not being in control of her own life,” said Felton, who spoke to The Banner on her sister’s behalf. “She felt her privacy and independence were compromised.”

Jayne Felton shares her most recent photo of her sister, Rona Battle, which was taken in Annapolis on June 8, 2023. (Heather Diehl/The Baltimore Banner)

Battle had been enrolled in Medicaid long-term care coverage when she was admitted to the nursing home, and Felton submitted an application for the home- and community-based services program in March 2022. In May of this year, thanks to Felton’s persistence and countless hours of effort, it was finally approved.

The Maryland Department of Health has said it’s working on clearing the backlog. In May, the department told disability advocates that it was “actively initiating” efforts to contract with an outside agency to process applications and “to assume responsibility for processing plans permanently.” The agency outlined additional plans to make systems more efficient over the long term.

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Chase Cook, acting director of communications, said there are nine open positions for both clinical and nonclinical application reviewers. Base salaries for these jobs will soon go up by $3,000 to $5,000 annually in an effort to recruit more applicants.

A bureaucratic nightmare

Medicaid is the nation’s largest payer of long-term care. Medicare, the public insurance program for people 65 and over, does not cover long-term care. Private long-term care policies are not bound by laws protecting people from coverage denials based on pre-existing conditions, so they must be purchased while a person is still healthy — and they’ll pay escalating premiums for benefits that may never be used.

Without that coverage, people who need long-term care must pay out of pocket, which will often impoverish them in short order — at which point, they apply for Medicaid.

Over the last few decades, research on long-term care, as well as public preference, have come to favor home- and community-based services over nursing home care whenever possible. In-home care lets people opt out of institutional settings in order to “age in place” in the comfort of their own homes, where they enjoy greater self-determination and a stronger sense of well-being.

An AARP survey conducted in 2021 found that 77% of adults 50 and over want to stay in their homes as they age. Home- and community-based services are also significantly less expensive than nursing home care, which saves state and federal Medicaid funds.

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Maryland has three Medicaid programs targeting older and disabled adults, which are tiered according to the level of assistance needed. Battle applied for one called the community options program, which provides the highest level of care for beneficiaries with the greatest needs.

During her interview with The Banner, Felton sifted through reams of documents and old emails to piece together the timeline of her efforts to get her sister in-home care. She has accumulated boxes and folders full of papers and notes.

Battle’s application was first denied in May 2022, two months after submission, because of an error calculating her assets — she was initially deemed too wealthy to qualify. Felton spent two months getting it corrected.

In the meantime, Felton had been working with a support services planner — another required step in the process — to develop an initial plan of care for her sister and connect with a home care agency and other supports. In July, the support services planner told Felton they would need to assign her sister to another caseworker who would need additional documentation.

Communication then went dark until late August, when they called to inform her that Battle would be reassigned to yet another caseworker who would start the process over. Felton was then told that her sister was “not in the database” of waiver applicants, though she later confirmed her application was pending.

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By September, Felton had to renew her sister’s application because six months had passed since she originally applied. She submitted another tranche of documents and got another support services planner.

“They just kept asking for the same stuff over and over again,” Felton said. Often, her sister would need to sign something, so Felton would have to get it printed and drive from her home in Havre de Grace to the nursing home in Annapolis.

In January this year, Felton was notified that her sister had been approved for subsidized housing, but the vacant apartment would only be held for six months. That meant the clock was ticking for approval of the Medicaid home-care application, now pending for 10 months.

In March, Felton got a punch to the gut when her sister was denied for the Medicaid program because her application, last renewed in September, had been pending for over six months.

“I just couldn’t understand that,” Felton said. “What was it that I was supposed to be doing?”

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Felton started over. Another application, a new nursing assessment for her sister, a new support planner. This time, she zeroed in even more, copying everyone involved on every email she sent and making phone calls even more frequently.

In May, with help from the disability advocacy organization Accessible Resources for Independence, who advocated aggressively with the state on her behalf, Battle was finally approved.

‘No person should have to live like that’

At a virtual town hall hosted by the disability support and advocacy organization Independence Nowin early June, 74 people — including Medicaid enrollees, family members, advocates, home care agencies and the caregivers they employ — told often disturbing stories of excessively long waits for benefits and the harm they’ve caused, while state officials quietly listened. Some people described family members or clients who died waiting for care.

Certified nurse assistant and home care worker Cynthia Neely talked about her client, 72-year-old veteran Charles Werrell, who lives alone in the Park Heights neighborhood and does not have family nearby who can care for him. Werrell has chronic obstructive pulmonary disease (COPD) and uses supplemental oxygen 24 hours a day.

Although Werrell only gets 10 hours of care per week, it’s a lifeline for him, Neely said. He is unsteady on his feet and prone to falls, she said, so he’s not able to bathe on his own or prepare hot food, and would go “days and days” without doing these things when he was without care in the past.

Cynthia Neely, certified nursing assistant, poses beside Charles Werrell inside of his home in Baltimore on Thursday, June 9, 2023. (Jessica Gallagher/The Baltimore Banner)

“No person should have to live like that,” Neely said. “I see how much [people] rely on me for everyday basic needs,” and having those needs met is key to maintaining health over the long-term, she said, and being able to stay in one’s home.

At the end of the town hall, officials from the Department of Health reviewed its plans to address the backlog of applications for in-home care as well as workforce shortages and “to design our systems to be much more streamlined and uniform across our home- and community-based services programs,” said Marlana Hutchinson, director of the Office of Long Term Services and Supports.

Ryan Moran, deputy secretary of health care financing and Medicaid director, said the stories shared at the town hall would “catalyze our effort and our commitment to every opportunity that improves the operations and the experiences” for older and disabled adults with Medicaid who need help at home.

Battle, meanwhile, still lives in the nursing home. Felton has done her part, she said, and is now waiting for the nursing home social worker to complete the process. She’s hoping nothing else goes wrong.

Sarah True was a public health reporter for the Baltimore Banner. She previously worked as a freelance journalist covering healthcare and health policy, and has been both a medical social worker and a health policy analyst in a past life. She holds dual Master’s degrees in public health and social work.

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