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

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.

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.