For Older Adults With Disabilities, Finding Good Long-Term Care Can Be ‘Hit and Miss’

What hearing-, vision- and intellectually challenged adults and their caregivers need to know

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Kim Painter,

AARP

En español

Published February 03, 2023

When Jim French and his sister were seeking an assisted living community for their mother, who has been deaf since early childhood, they considered one facility exclusively for deaf people. The problem: It was in Ohio, far from their mother’s family and friends in the Washington, D.C., area. Instead, they chose a place close to their mother’s former home, in Maryland.

The facility was eager to accommodate her, French says. Staffers installed lights that flash when someone rings her doorbell. They started monthly sign language classes for other residents. They promised to provide sign language interpreters for important meetings and medical appointments, but French says that hasn’t always happened.

Still, he says, his mother, 79, who was showing signs of cognitive decline and poor nutrition before her move, has thrived: She eats lunch with friends, dates another resident and likes the staff. “She feels heard,” he says. “She feels respected.”

Not everyone fares so well when seeking long-term care for older loved ones with disabilities.

Though federal and state laws, including the Americans with Disabilities Act, say agencies and facilities cannot discriminate against people with disabilities — including hearing, vision, communication and mobility problems, as well as intellectual and developmental disabilities — finding a good fit can be “hit and miss,” says Priscilla Rogers, special adviser on aging and vision loss for the American Foundation for the Blind.

Factors ranging from poor staff training to underfunding to a lack of awareness on the part of care recipients, their families and care professionals can leave people poorly served, she and other advocates say.

What you need to know

“People don’t know what they don’t know,” Rogers says. For example, she says, many people with visual impairments do not know that they could remain independent longer with help from a vision rehabilitation specialist. Such specialists can teach people how to cook, manage medications and maintain their surroundings safely. Services are free for many older adults, she says. For information, she suggests contacting the American Printing House for the Blind (connectcenter@aph.org or 1.800.232.5463).

Likewise, many people considering continuing care, assisted living, nursing and memory care facilities don’t know what features to seek out, experts say. That list varies, depending on a person’s needs.

A caregiver for someone with visual impairments should look for a facility with well-marked curbs and stair edges, low-gloss flooring, elevators with braille and large-print signs and a dining staff trained to tell people what’s on their plates, according to the American Printing House for the Blind’s VisionAware website.

People with aphasia — a loss of speech, understanding or other communication skills, often due to a stroke — do best in long-term care settings that offer plenty of opportunities for social interaction and meaningful activities, according to the American Speech-Language-Hearing Association. Ideally, the group says, a therapist will help residents with aphasia develop communication plans, which might include training staffers to use picture cards, simplified language or other aids.

Deaf people need closed captioned TVs, fire alarm lights and other alert systems, according to the National Association of the Deaf and Deaf Seniors of America. The groups say interpreters should be available to respond to illnesses and other emergencies, as well as for medical appointments, field trips and other activities.

Though some, like French’s family, may consider a community exclusively for deaf people — one of dozens across the U.S. — most people will find accommodations and disability-minded design in places that serve the broader population, according to A Place for Mom, a search agency that refers clients to more than 14,000 communities nationwide. A typical facility will have wide hallways and doors, grab bars, ramps and walk-in showers, which make life easier and safer for people with mobility challenges. Most offer close-captioned TVs and amplified telephones. Some hire staff fluent in sign language or design all rooms for easy use by people with poor vision.

It’s important to know that the law does not require every facility to accommodate every possible need, says Caleb Lihn, a lawyer in Phoenix, who sits on the board of the National Academy of Elder Law Attorneys: “A particular place may say … ‘We’re not equipped. We don’t have the staff with the training.’ ” They stay within the letter of the law, he says, by saying they are “not discriminating based on your disability” but “just don't have the infrastructure.”

Patient advocates and search agencies can help people sort through the options, he says.

Elder care attorneys can advise you, he says, if you feel that discrimination has occurred or that promised accommodations haven’t materialized.

French, a licensed clinical social worker, says his family will keep pressing his mother’s facility to offer more consistent interpretation services. His advice to others: “Sometimes, it just requires a little bit of pushing.”

When it doesn’t work out

A visual rehabilitation specialist helped Mary Worstell’s mother live independently in a continuing care community for several years after macular degeneration left her visually impaired. But the community itself wasn’t supportive enough for her mother, who also had progressive hearing loss, says Worstell, a retired public health adviser who lives in Washington.

The library had a magnified reading machine but never had a chair in front of it. After a fall, Worstell says, her mother spent time in the community’s skilled nursing center and went a whole week without a shower because she checked the wrong box on a form she couldn’t see.

During the early days of COVID-19, Worstell’s mother could no longer have an aide or family member come in to help her. “She called me and she said … ‘I can’t do this anymore. They're not taking care of me,’ ” Worstell recalls. Her mother, who had food allergies, said staffers gave her brown paper bags of food she couldn’t identify.

A ‘Catastrophic Tidal Wave’ of Special Needs

Finding good long-term care for anyone can be a challenge. Finding the right care for someone aging with intellectual or developmental disabilities — such as Down syndrome, autism or cerebral palsy — can be especially daunting, advocates say. The country is unprepared for “a catastrophic tidal wave” as people with such disabilities age without adequate supports, says John Nash, executive director of the Arc of North Carolina, part of a national group serving people with intellectual and developmental disabilities.

The wave results from the general aging of the population, increased life spans for people with disabilities and a sea change driven by court decisions on how intellectually and developmentally disabled people live and get services. Most live with family members, in their own homes or in small group settings, Nash notes. Large institutions providing 24/7 care are largely a thing of the past. That’s mostly a good thing, Nash says, but leaves a yawning gap when people develop more intense needs with age.

Some ideas are gaining traction. Service agencies have opened specialized small group homes for intellectually disabled clients with dementia. Such homes, when well-staffed, -designed and -funded, can keep vulnerable people in safe, supportive care and out of nursing homes ill-prepared to serve them, says Matthew Janicki, copresident of the National Task Group on Intellectual Disabilities and Dementia Practices.

Janicki, a researcher at the University of Maine and University of Illinois at Chicago, follows three such homes in Wichita, Kansas. “The people living there know the staff, they know each other, they’re treated well. This is their home,” he says.

Dementia care is of especially urgent interest to caregivers for people with Down syndrome, who have an elevated risk of early Alzheimer’s. One tip from the National Down Syndrome Society: Research residential options for your loved one before a crisis hits.

Daughter Works to Change Care for Deaf Adults

At that point, Worstell says, “I just went in and scooped her out.” Her mother lived with her, then with her brother in New Jersey. She died in March 2021 at age 98. Hospice staffers, who helped her mother in her final weeks, “went out of their way to engage one on one with her,” she says, and were a bright spot in her mother’s long-term care journey.

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Kim Painter is a contributing writer who specializes in health and psychology. She frequently writes for AARP's Staying Sharp and previously worked as a health reporter and columnist at USA Today.

For Older Adults With Disabilities, Finding Good Long-Term Care Can Be ‘Hit and Miss’

What hearing-, vision- and intellectually challenged adults and their caregivers need to know

What you need to know

When it doesn’t work out

A ‘Catastrophic Tidal Wave’ of Special Needs

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