Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities
"Without Independence Care System, I’d be Dead."
To understand what Independence Care System (ICS) means to Wilfred Graulau, you have to know where he came from. “You have to know the pieces they picked up,” he says. Wilfred grew up in the South Bronx. When he was 12 years old, he fell in love with art. In any class, he could be found furiously pencil sketching. His teachers collected his drawings, which he assumed they were throwing out. Instead, they made a portfolio and sent it to Manhattan’s High School of Art and Design. Wilfred got in, and his talent blossomed. But one night in 1969, while he was walking down a South Bronx street, a bullet pierced his 17-year old neck and lodged in his spine. Wilfred left the hospital in a wheelchair, paraplegic.
Wilfred’s fierce spirit helped him face adversity and become not only an artist with a job at the Fashion Institute of Technology, but an activist who helped force New York City to install the first wheelchair ramps in city-owned buildings. He drove a Nissan Maxima, flew to Puerto Rico for vacations, and maintained a 32-inch waist. “Those were the best days of my life,” he says. “I had a job I was secure in, and I loved doing it.”
Then, calamity struck again. A wound, a decubitus ulcer, on his lower back would not heal. He went back and forth to doctors’ offices and emergency rooms, receiving questionable care. At home, it fell to Wilfred and his sister to cleanse, pack, and repack the wound several times a day, which requires specialized clinical management. Without that clinical oversight, Wilfred’s infection raged and his health deteriorated. In October 2000, he was hospitalized, barely conscious. Even when the infection was under control, hospital staff said he needed rehabilitation at a nursing home. He was admitted for a stay of two weeks. Two years later, Wilfred was still there. In the meantime, he had lost his job, car, and independence. “It was as if my life before the nursing home had never happened,” says Wilfred. “I wasn’t a person anymore, I was this 105-pound thing, hanging on the edge. I didn’t know if I was going to live or die, and it didn’t seem to matter. I thought I’d never get out.”
Hope arrived in the form of a young man named Yuri Martinez, ICS’s assistant director of community outreach. Martinez had come to talk to the nursing home’s admissions counselor about ICS. The counselor casually mentioned Wilfred. Martinez paid Wilfred a visit. “Yuri was saying, ‘Whenever you’re ready to leave this place, let us know,’” reports Wilfred. But Wilfred was full of distrust. Still, he kept Martinez’s business card. Over the next few months, Martinez called Wilfred four or five times, “just checking in.” Then at a discharge meeting, the home told him their plan: Wilfred was to get himself into a homeless shelter to qualify for emergency services. Wilfred was enraged. He had no intention of “volunteering myself to the streets.” Wilfred called Martinez. He was ready to join ICS.
Suddenly, Wilfred says, “ICS was in there. First the intake nurse came and evaluated me. Then came the next nurse,” Mona Leon, his nursing care manager. “Then came my social worker,” Bonnie Prest-Thal. In three weeks, ICS care managers put together a real discharge plan. ICS staff worked with nursing home staff to get doctor’s orders for all the services Wilfred would need on his first day home. They arranged for a personal care aide to help Wilfred shop, make meals, keep house, do laundry, and get to medical appointments. They determined that his wheelchair and hospital bed were satisfactory, but he needed minor items of durable equipment, such as a padded tub transfer bench and an array of medical supplies. ICS staff reviewed the list with its rehabilitation coordinator and passed it on to a contracted equipment provider. ICS contacted a participating pharmacy, ensuring that on the day of discharge he would either have enough medications with him to go home or they would be delivered. In the spirit of collaboration in which ICS staff and its members work, Wilfred agreed to schedule an appointment with his primary care doctor, and make the call to resume his Supplemental Security Income benefits. ICS guided nursing home staff in submitting the paperwork to transfer Wilfred’s Medicaid from institutional to community status.
Persistence was key to putting everything in place, and Prest-Thal had it. “I was totally determined,” she says. “Will was coming out of that home, come hell or high water.” She was confident that with the help of ICS, he could manage an independent life. “I know the services we provide. A lot of our members are a lot worse off than Wilfred and live at home. I have utter confidence in ICS that we can do what needs to be done.”
Today, with the help of a host of home and community services arranged by ICS, Wilfred is reclaiming his life. He moves about his Bronx community freely and works at computer programming. “Bonnie has no idea how she saved my life,” he says. “You can save my life physically, but that means nothing. It’s what’s in my head that’s important. She gave me a chance to think about the future, a sense that there is a future.” And finally, he is in a place where he can act on that future.