Documenting Dual Eligibility: Ann

Documenting Dual Eligibility

Ann’s Story

She has a developmental disability and no living relatives. Her caregivers are like surrogate family members. Ann is one of more than 12 million Americans enrolled in both Medicare and Medicaid.

PHOTOGRAPHS & STORY BY ISADORA KOSOFSKY

When Evelyn unpacked Ann’s suitcase full of thick wool sweaters, she assumed that the newest resident of the group home in Hawthorne, California, originated from a cold climate. She neatly placed each sweater in a dresser, without learning anything more. 

Fifteen years later, Evelyn knows Ann intimately. But she still does not know her history. Ann has a developmental disability that impacts her ability to easily express herself through words. Ann has no living relatives. House aides Evelyn, Mary, and Queen, and the administrator, Darlene, are like surrogate family members. 

“We are her family,” said Mary, who has been a care provider in this home for 18 years.

Ann, now 72, is a keen observer who sits in the living room and watches the comings and goings of the house. She is the first voice to greet any visitor. She makes eye contact with a new or known face, delivering an emphasized, “Hello, how are you?” 

It is a calm and peaceful home with six adult residents with developmental disabilities and two caregivers per shift. 

Five of the six women are mostly non-verbal. But each resident makes her presence known. 

Norberta, an older resident with a distinct fashion sense, asks one caregiver in Spanish if her mother purchased her necklace for her. Juliette, one of the youngest of the group, paces around Ann, who continues to take in the movement around her. Ann loves babies and young children and sits by the window yelling “baby” as children are dropped off at a nearby day care.

On warm afternoons, Mary, the house aide, takes Ann to the front of the house to watch cars, pedestrians, and clouds move by. “Look, Ann, a plane,” said Mary, as she runs her fingers through Ann’s hair, gathering each short, gray strand into a ponytail.

The home is funded through Medi-Cal, California’s Medicaid program. For the most part, Ann’s health care providers all see her at her home. Her medications are also delivered directly to her. 

At-home services allow for minimal stress and disruption. “It is definitely the ideal model to have service providers be able to come into the house, especially when mobility is an issue and transportation is an issue,” said Darlene, the home’s administrator. Ann only needs to go to appointments at medical centers three times per year. 

Most Americans are like Ann: They would prefer to receive long-term care in their home or community. For many Americans, Medicaid eligibility provides the only opportunity to afford these kinds of services when they need them.

“She is lucky to have access to both [Medicare and Medicaid]. It opens up some more avenues for her, especially if she wants to see a specialist.”

Darlene, Ann’s group home administrator

Transportation is a major hurdle for Ann in getting to appointments. For Ann, an ACCESS ride — door-to-door transportation for adults with disabilities — is three times longer than a trip in a conventional car.

However, there are also barriers associated with Medicaid. Residents of group homes who solely have Medi-Cal often contend with a dearth of service providers who are willing to see them. Providers are sometimes more willing to accept Medicare patients, given the higher payment rates associated with this insurance program.

“She is lucky to have access to both [Medicare and Medicaid],” said Darlene. “It opens up some more avenues for her, especially if she wants to see a specialist.” Darlene prefers that Ann go out mainly for education or leisure.

Transportation is a major hurdle for Ann in getting to appointments. For Ann, an ACCESS ride — door-to-door transportation for adults with disabilities — is three times longer than a trip in a conventional car.

Ann’s wellness isn’t only about her health care, but also about the activities that bring her joy and stoke her creativity. Every weekday morning, Ann attends AbleArtsWork, an art and music day program for adults with developmental disabilities located in a converted warehouse. 

In a studio with piano, drums, and a record-covered wall, Mollie, a music therapist, plays an acoustic guitar as she kneels in front of each participant and sings, “Hello, how are you today?” She adds their names in turn, followed with harmony singing. 

Ann reacts most enthusiastically to classical and jazz piano. During a remote class, Ann’s wandering gaze focuses sharply on her tablet when an instructor announces that he will play an excerpt of a Mozart concerto. 

Ann also participates in visual arts activities. “It is where I’ve seen her voice come out the most,” said Stephanie, Ann’s long-term visual arts instructor.

Ann’s strength is two-dimensional collage; she often cuts photographs of babies in various emotional states from magazines and pastes them in the center of the page. Her collage work expresses a layered language around innocence, hunger, femininity, and luminance. Her pieces contain recurring images of able-bodied women, food, children, and lightbulbs.

As if constructing a collage of her own, care supervisor Darlene over the years has woven together strands of information to understand Ann’s needs and preferences. Darlene helps make decisions on Ann’s behalf, along with a case manager at Regional Center, an agency contracted through the California Department of Disability. When it comes to serious medical decisions, a physician through Regional Center is involved in the conversation.

All people, but especially those with complex needs like dual-eligible individuals, need support to navigate their care. Studies from the Health and MIND Institute at the University of California Davis reveal that supported decision-making from trusted partners can provide a sense of self-determination and autonomy. The majority of dual-eligible enrollees who have an intellectual disability rely on designated representatives or family caregivers to manage their care.

Ann often says only a few words each day; her main form of communication is touch. Her affection for others comes forth in her enveloping, locked embraces in which she wraps her arms around a person’s head, often for a few minutes. Physical closeness is Ann’s main form of expression with those she cares about the most, and she primarily embraces other women. 

One afternoon, Norberta, her neighbor from across the hall, wheeled herself past Ann. Happy to see Norberta, Ann reached forward for a hug. Norberta shook her head and quickly rolled herself away. Ann was not discouraged. She continued to smile. She knew someone else would want her embrace.

“She is the love bug of the house.” said Darlene.

The home is a subtle space of women empowerment where women providers are in conversation with women residents about their needs. During the last three years of the pandemic, these forged bonds were even more vital, as residents were cut off entirely from their outside routines and communities.

The pandemic was particularly harsh for residents of intermediate and long-term care communities. Residents of the home who were easily stimulated preferred the isolation, while the lack of social connection stunted other residents, like Ann, who thrive on social interaction.

Ann has lived in Southern California congregate living for at least 20 years. Prior to moving into her current community, she lived at a large developmental center in Orange County that took an institutional approach to those with developmental disabilities. The facility is now closed. Individual group homes allow residents to feel like they are living in a house, like anyone else, with support.

When Ann moved from her previous residence, she almost never spoke. Most care providers did not know she could verbally communicate. “I had to convince people that she could speak,” said Darlene. Over the past 15 years, as Ann has grown to feel safer, she has flourished and resumed using her own voice.

Care providers now interact with Ann through short phrases and facial expressions. They encourage her to use her words and make her own choices, starting with deciding between a red or pink shirt in the morning.

“I’ve noticed that she’s really finding her voice,” said Darlene. “I think it’s still a process, and she’s still growing.”

This story originally appeared on the website of our partner, Arnold Ventures.