Illustrations by Pete Ryan
Three months before her seventeenth birthday, Norma Robertson was driving a car full of high school girls returning from a softball tournament. The car was gliding down a lazy country road in Virginia. A girl in the backseat made reference to her shoes and Norma took her eyes off of the road for a few seconds to glance back at them. The car skidded out of control, flattening a mailbox and slamming into a tree. That was the day young Norma became a quadriplegic.
By the time she was eighteen years old, in 1984, Norma was living in a Philadelphia nursing home, a long way from where she grew up in rural Virginia. Nursing home life was, for the most part, tedious and depressing. “I didn’t want to be there,” she remembers. “So I mainly just stayed in my room.”
For Norma, the monotony of the nursing home was sometimes eased by the occasional family visit or her sessions with the tutor who helped her complete her high school education. As the years went by, Norma became convinced that she would always have to live in an institution. The doctors, nurses, therapists, and social workers all agreed this was the only option for a full-time wheelchair user like her who didn’t have the personal funds to pay someone to assist her at home or enough family and friends who would help her for free.
Then one day a woman appeared at the nursing home. The woman worked for a local nonprofit organization called Liberty Resources. When she asked if Norma wanted Liberty’s assistance moving out of the nursing home and into her own apartment, Norma jumped at the chance.
It took about six months for Liberty staff to help Norma locate affordable, accessible housing and work out all the other details to successfully move out. Finally, after seven years in the nursing home, Norma moved into her own apartment in 1991.“What a fabulous day,” she said to herself that day. “I finally have freedom!”
She received assistance from a crew of people she hired whose wages were paid by the state using Medicaid funds. Norma never looked back. Today her name is Norma Robertson-Dabrowski. “I met him”—her husband, Michael—“at the prison.” Prison is the word she uses for the nursing home where she used to live.
The couple are homeowners in Philadelphia. Michael Dabrowski works for housekeeping at the nursing home where Norma was a resident and Norma works fulltime for Liberty Resources. Liberty is what’s known as a Center for Independent Living. The National Council on Independent Living (NCIL) defines independent living centers as “community-based, cross-disability, nonprofit organizations that are designed and operated by people with disabilities . . . according to a strict philosophy of consumer control, wherein people with all types of disabilities directly govern and staff the organization.”
There are more than 400 independent living centers in the United States, according to NCIL. Norma’s job is to help others escape nursing homes the way Liberty helped her. She’s in the trenches of the growing movement with other activists who are fighting to help disabled people and seniors leave nursing homes and institutions and prevent others from entering them in the first place.
Every year I take part in a spring ritual with a group of disabled people that usually involves getting arrested outside the White House. I go to Washington, D.C., to join my fellow members of the direct action disability rights group ADAPT, for several days of protests. We fight to rid public policy of what we call the institutional bias, which requires disabled people to live in institutional settings in order to receive publicly funded assistance with activities of daily living. We protest because ADAPT believes every disabled person should be able to live in community setting with public support.
ADAPT has made great progress over the years. In the spring of 2002, we blocked the intersection closest to the White House and shut down traffic. When White House aide Mark McClellan was dispatched to deal with us, he listened intently as ADAPTers told horror stories about being trapped in nursing homes.
McClellan went on to become administrator of the Centers for Medicare and Medicaid Services, the federal agency that runs Medicare and Medicaid. Four years after our protest, the Bush Administration proposed a new program which gave states extra money to move elderly and disabled people out of nursing homes. Congress allocated $2 billion over five years to fund the program, which was called Money Follows the Person (MFP), a phrase coined by ADAPT organizer Bob Kafka. Today, Liberty and other independent living centers that do the arduous work of freeing people from nursing homes often use MFP funds.
My activism is motivated mostly by fear. I’ve never lived in a nursing home. I live happily with my wife and dogs in a condo in the shadow of the skyscrapers in downtown Chicago. My wife and I both use wheelchairs and we receive assistance from a crew we hire using a program similar to the program Norma used when she left the nursing home. But I can’t help but feel like I’m always surrounded by banana peels. The program could be eliminated or curtailed at any time, especially with so many cold conservatives in charge. Without that program, I could well land in a nursing home.
It’s not supposed to be that way. In 1999, the U.S. Supreme Court ruled in the case of Olmstead v. L.C. and E.W. that when state governments arbitrarily force disabled people to enter institutions to receive services, it violates the Americans with Disabilities Act. Without the work of activists fighting the institutional bias, this issue would never have been on the judicial radar screen. But state governments still routinely ignore or pay grudging lip service to that mandate.
On May 2, the U.S. Department of Justice sent a letter to the Republican governor of South Dakota, Dennis Daugaard, accusing the state of violating Olmstead by not offering enough community living options for disabled and elderly people who need assistance. The letter said, “Many of these individuals, and their families, have sought long-term care services from the State only to find that a nursing facility is the only available option.”
One of these people, according to the letter, was a seventy-seven-year-old man who lost his vision due to diabetes. After a toe amputation, he needed someone to regularly examine his feet for signs of skin breakdowns. But because he couldn’t access publicly funded in-home assistance for even that small task, he had to check into a nursing home.
The biggest obstacle to freeing people from nursing homes and keeping them from entering, Norma says, is that so many people don’t even know that community living options exist. The letter said, “Many have never been informed by the State that they could be receiving care while living in their own homes.”
The letter tells the story of a man who told investigators he was involuntarily sent to a nursing home directly from a hospital after the hospital discharge planner called the management of the apartment building where he lived, without the man’s consent, and ended his lease.
Nursing facilities, the letter said, are “far more like a hospital than an individual’s home . . . and, in some cases, have locked doors or gates to prevent residents from leaving.”
In her many years of helping others get free, Norma has seen the inside of dozens of nursing homes. The worst one, she says, had cats roaming the halls to catch rodents.
“There are some that won’t allow the residents to have motorized wheelchairs,” she says.
“You gotta check in. You gotta check out. Some don’t even allow the residents to go outside and smoke until they give them a pass. Who ever heard of such a thing? You’re being treated like a child.”
What Norma hated most about being stuck in a nursing home was that the facilities garnish residents’ Social Security checks except for $45 a month. “And out of that you’re paying for extra things, like if you want to get a haircut.”
When nursing home residents are as flat broke as she was, it makes it nearly impossible to leave. Market rents are unaffordable so first there’s the daunting task of finding accessible, rent-subsidized housing. And then there are the costs associated with moving out, such as utility and security deposits and purchasing furniture. Fortunately, MFP funds can be used to cover those costs.
Norma says it can take up to two years to free a person from a nursing home with community supports in place. She says Liberty manages to free about forty people a year. “Somebody did it for me and I’ll continue to do it [for others],” she says.
“I get emotional when I talk about it because I didn’t expect that I would be in this position. You’re young and you’re walking around and you’re doing things.”
There is also growing awareness among people with disabilities. In the San Francisco Bay area, the group Senior and Disability Action seeks to combine the political power of disability and senior activists to create more community living options. It was part of a broad coalition of groups that won a recent victory when $1 million was included in the San Francisco city budget to launch a program called Support at Home.
This program will provide cash assistance to help “upper poor” disabled people and seniors pay workers to assist them in their homes and communities. The upper poor are defined as those whose income and assets are too high to qualify for the state Medicaid-funded home and community support program but who still can’t afford to pay for the assistance they need out of pocket. The group estimates that more than 14,000 San Francisco seniors need this type of assistance.
So maybe I can relax and not rely on fear to motivate my activism. Nobody wants to be in a nursing home if they have a choice and more and more of those who are on the edge of that precipice are demanding options. And we’re winning, slowly but very surely. Maybe that’s a tide so powerful that even the cold conservatives can’t stop it.
Maybe it’s OK to let myself be motivated not by fear, but by hope.
Mike Ervin is a writer and disability rights activist living in Chicago. He writes the blog Smart Ass Cripple at smartasscripple.blogspot.com.