May 30, 2016 7 min read

QUAKERTOWN – Travis Brown’s third-floor apartment in Bristol Township may not be fancy. But for him, it represents something very important.

Freedom.

A little over a year ago, Brown had vastly different accommodations.

Estranged from his family and unable to care for himself following surgery to install a medication pump to control symptoms of cerebral palsy, Brown found himself living in a nursing home. He was only 28 years old.

“It’s no place for a 28-year-old,” Brown said. “But it’s better than living on the street. You had to do what you had to do.”

Brown stood out at the nursing home because of his youth, but his situation was by no means unique.

While the majority of nursing home residents are over 75, the number of young adults living in such facilities is on the rise. In 2014, 15 percent of nursing home residents were between the ages of 31 and 64, up from 10 percent in 2000, according to data from the U.S. Centers for Medicare and Medicaid Services.

In Bucks County, roughly 7 percent of nursing home residents were in that age group as of February 2016, a number that has remained fairly steady over the years, according to data provided by the Pennsylvania Department of Health. But in Montgomery County, the percentage of younger residents has jumped from 5 percent in 2000 to 18 percent this year.

Younger residents end up in nursing care often because they have no other options. Many have low-paying jobs or no jobs. Family members can’t or won’t take them in, because of financial difficulties, estrangement or the fact their homes aren’t handicapped accessible.

“Primarily, the reasons we see (younger adults in nursing homes) is there’s been a lack of available options for them to receive services in the community,” said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, a Washington, D.C., consumer advocacy group. “What is available is very expensive, usually. What we’ve seen is that younger adults with disabilities have needed to enter a nursing home in order to receive the care and services they have not been able to get in other places, either due to cost prohibitions or because there’s just not the availability in less restrictive settings.”

Younger adults who wish to move out of a nursing home often find the odds stacked against them, Brown said, because affordable housing is scarce. And affordable housing that’s handicapped accessible is even harder to find.

“As soon as you say you’re disabled to these apartment managers, when you mention the word ‘voucher,’ they say, ‘click, can’t help you,'” Brown said.

While they get the care they need in a nursing home, young adults like Brown say it’s not the place for them.

“Nursing homes are really set up for older people,” said Brock Eichenhofer, community outreach and development manager for JEVS Human Services, a Philadelphia nonprofit that provides services to those with disabilities and others facing socioeconomic hardships.

“They don’t specialize in (housing) younger people. It’s a real culture shock, and depressing. They’re going into this situation where the median age is, like, 85, and you’re 28. They’re not set up to deal with that. They’ve never been in that situation before,” he added.

It took more than a year, but Brown finally found an apartment – thanks to help from Eichenhofer, who drove him from place to place until they found someone who would give him a lease.

JEVS offers a nursing home transition team that assists younger nursing home residents who want to live on their own. The agency works with residents at 51 nursing homes in Bucks and Montgomery counties. Last year, JEVS helped 27 people transition from nursing homes; so far this year, 20 have successfully graduated to independent living.

Eichenhofer has visited every one of the nursing homes involved in the JEVS program, often accompanied by his mismatched pair of therapy dogs, Emma, a labradoodle, and Bailey, a pit bull/Bichon Frise mix. He said the dogs help break the ice with the nursing home staff and the residents he’s there to help, as well as providing a comforting presence.

“They’re always a big hit,” Eichenhofer said of the dogs. “Even the staff; it just changes the whole mood in a nursing home.”

In addition to transitional services, JEVS social workers can help set up regular visits from health care aides and other services once people move out of a nursing home.

Funds come from Medicaid’s Money Follows the Person program, which awards grants to participating states to help Medicaid recipients access long-term care services in the setting they choose.

“Things are changing in the way long-term services and supports are being provided,” Smetanka said. “There are programs, both at the federal and state level, which are making Medicaid dollars more available to people who want to reside in other settings. It gives a person a choice.”

By 2013, more than 40,000 individuals had transitioned to independent living through the Money Follows the Person program, and another 10,000 people enrolled in the program that year, according to a Consumer Voice study. More than 85 percent remain in the community once they’ve made the transition, the study found.

She added that nursing homes are now required to ask people during the intake process if they want to transition out of the facility to live independently. Those who say yes are referred to transition coordinators, such as those with JEVS.

Holly Hopkins, 59, gets daily visits during the week from an aide, who helps with cleaning and other things she needs around her apartment.

Hopkins spent eight years living in ManorCare Huntingdon Valley, where she ended up following multiple spine surgeries and hip replacement surgery that left her heavily dependent on pain medication.

A former Levittown resident, Hopkins said she was used to an active lifestyle, and was an avid snow skier and water skier before her surgeries. She was determined to find a way out of the nursing home, and was working to find an apartment before she heard about JEVS.

“I stressed myself out so much I was breaking out in hives,” she said of her search for independent living.

In February, Hopkins moved to Mission Green. The affordable housing complex is a joint project of the Inglis Housing Corp. and the Medical Mission Sisters, which owns the property that straddles Abington and Philadelphia. She’s planning to go back to school in the fall.

“It’s wonderful,” she said of living on her own. “I didn’t like people taking care of everything for me. They used to yell at me to stop doing so much stuff, that that’s what the aides are for. But I can do my own laundry.”

Brown found his apartment at Edgely Estates in Bristol Township, after more than a year of searching. He went through intense physical therapy to be able to climb two flights of stairs, since the complex doesn’t have an elevator.

The transition from Quakertown Center wasn’t easy. In fact, it gave him nightmares. While an aide visits him regularly at his new place, there’s no 24-hour safety net like there is in a nursing home.

Still, Brown said, the move was worth it.

“You’re free to do whatever you want to do,” he said. “You’re not told when to take a shower, when to eat. (In a nursing home) you have to do whatever you’re told to do. … You can only go outside when they tell you you can go outside. You can only have so many washcloths to wash yourself off with, until they start complaining. You can only do so much.”

Eichenhofer, Emma and Bailey frequently visit Brown, who said he couldn’t have succeeded living on his own without the social worker’s help.

“How didn’t he help me?” Brown said in response to a question about what Eichenhofer did for him. “When you’re in a nursing home, you need a great support system, a great person, someone to keep you upbeat all the time. He was that person.”