Anthony Trocchia waits to meet a friend in Manhattan earlier this month. Photo | Matt Drange
* Updated Nov. 28
By Matt Drange
Raul Velilla picks up the dining room chair and carries it with both hands through the bedroom door, taking care to align the wooden legs of the chair with the desk. A personal assistant for Anthony Trocchia, Velilla asks him if he needs anything else. Before turning to leave, he leans over Trocchia’s electric wheelchair and kisses him on the cheek.
“Thank you,” Trocchia says as Velilla turns to go.
“Don’t thank me,” Velilla says in firm but gentle voice. “I’ll see you tomorrow.”
Trocchia was diagnosed with spinal muscular atrophy type 3 as a child, a disease that worsens with age and severely limits voluntary muscle movement. By the time he was 11 he could no longer walk.
Now 42, Trocchia still lives in the Williamsburg neighborhood of Brooklyn, not far from where he grew up. With limited use of his arms and legs, he relies on round the clock care from a quartet of personal assistants, with the bulk of the hours picked up by Velilla. But finding quality assistants isn’t always easy.
Trocchia can remember dozens of assistants who didn’t work out, but he was often unable to do anything about it. After years of being unhappy with his traditional home health care agency, Trocchia joined Concepts of Independence in 1993. The difference, he said, is huge.
“You don’t choose your caregivers; the agency dictates everything,” he said. “In a traditional home care agency, the client is not in the driver’s seat, and is nowhere near the driver’s seat.”
Founded in 1980, Concepts is a nonprofit care provider which provides personal assistance to Medicaid patients who are eligible for nursing home care. It was the first example of what’s become known as the Consumer Directed Personal Assistance Program (CDPAP).
Unlike a traditional licensed home care agency, Concepts allows members to recruit, train, hire and fire their own personal assistants. While Trocchia would be considered a “patient” or a “client” in a traditional agency, he prefers the term “consumer,” which he said underscores the fact he is in control of his care.
After nearly 20 years in the program, Trocchia said he doesn’t know what he would do without it.
“At some point, you’re going to reach a point in your life when you say ‘I’m taking control of this monster, and there’s no one who can tell me what to do,’” he said.
But Trocchia – and others like him – may have to find an alternative. And soon.
Redesigning the system
Last month the state’s Medicaid Redesign Team – formed by Gov. Andrew Cuomo to cut down on Medicaid spending and create guidelines for the shift from a fee-for-service model to a managed care system – finalized its new care coordination model. Starting next year, anyone who needs more than 120 days of home care services must be enrolled in a managed care program.
The group has yet to release specific guidelines for agencies, however, which has given Myrna Lumbsden reason for concern. The program director at Concepts, Lumbsden said the coming months would be a challenge.
“Right now we are just gathering information, going to meetings and conferences,” Lumbsden said. “We are trying to learn from the mistakes that are going on, so that we are ready for the transition into managed care.”
Under managed care, providers receive a flat reimbursement per patient per month, regardless of how many hours of care they may need. Opponents say the change will put people who need round the clock care at risk, since agencies have an incentive to enroll clients who need less care.
Instead, what you end up with is providers that “cherry-pick” clients, said Valerie Bogart, director of the legal resources program at Selfhelp Community Services, Inc. Bogart’s team currently represents a client who’s been “given the runaround” on managed care options, she said, something made even more difficult when each agency forms its own guidelines.
With more than 42,000 New Yorkers receiving home care as of last month, Bogart said the competition for a greater market share will be fierce.
“The whole idea of managed care is really a disincentive to provide hours,” she said, adding that in order for the model to work an agency must have a mix of patient needs. Bogart said she would support an alternative in which those with the highest care needs – like Trocchia – are removed from the equation.
“My concern with people like [Trocchia] is that their care will be diluted because of the company’s bottom line,” Bogart said. “You can be as aware as you can be, but if you can’t get the care you need you’re sunk.”
Traditional agencies need to begin enrolling clients starting April 1, though consumer-directed programs like Concepts have until July 1 to implement new policies. Lumbsden said administrative staff at Concepts will use the extra time to learn from the mistakes made by other agencies.
Although the shift underscores the state’s effort to reduce Medicaid costs, managed care isn’t what the founders of the program had in mind when they formed it some 30 years ago.
Beginnings of Independence
Sandra Schnur was an advocate for wheelchair accessible buses and vans in New York City, and was instrumental in starting Concepts of Independence. Schnur contracted polio as a teenager, and spent her adult life as a quadriplegic. She served as president of Concepts of Independence for 13 years, and died in 1994.
Her idea, said Schnur’s husband, Marvin Wasserman, was to allow people to be in control of their care.
“A number of people in the community were upset, because they realized that if a vendor managed their care they would not be the boss of their own homes, and they would be beholden to the agency,” said Wasserman, the executive director of the Brooklyn Center for Independence of the Disabled. “They rejected that.”
At first, Schnur’s proposal was met with resistance, Wasserman said. After getting enough people behind it, Schnur met with the deputy mayor, and the program took off. The model has since been emulated by agencies in more than two dozen states, and is recognized as a pioneer in the industry.
Wasserman said the issue of managed care is a “tricky one,” and that he worries consumers will lose either hours or freedom – or both. The key, he said, is to balance autonomy with agency control. Some managed care agencies, for example, have strict guidelines on when patients can leave their home, and attendants aren’t allowed to accompany them outside the city.
“It’s absolutely ridiculous,” Wasserman said. “If you require assistance and you’re limited in terms of where you can and can’t go, that’s not independent living.”
Independence is a pivotal aspect of all consumer directed care programs, Wasserman said, adding that without programs like Independence Care System – a managed care provider that subcontracts with Concepts and others – many people would be relegated to nursing homes. In general, assisted living facilities involve higher fixed costs, and end up costing the government more than home care.
There is also the added savings of using one person to handle all aspects of a client’s needs. In a traditional home care agency there are aides and attendants, as well as a registered nurse and a social worker all handling the case. These are more skilled positions, which require higher pay and, in turn, more Medicaid dollars.
But the program isn’t for everyone, said Concepts CEO Anthony Caputo.
Since no formal training is required to become a personal assistant, consumers assume full liability when they hire someone. If clients are unable to manage the care themselves, they can appoint a surrogate, usually a family member or close friend who makes decisions on their behalf.
“Everything we do, either on paper or in procedure, makes the consumer the employer,” Caputo said, adding that the company has staved off lawsuits in the past by maintaining that its only role is to process payroll and issue tax statements. The rest, Caputo said, is up to the consumer.
With nearly 1,300 consumers in New York City alone, Concepts has contracts in a dozen counties, with satellite offices in Nassau, Westchester and Albany. Statewide, the company employs between 2600-2800 hundred assistants, Caputo said, many of whom work more than 40 hours a week.
In recent months, Caputo said he’s advised both assistants and consumers to consider switching to Independence Care System for their health care services. The two agencies – referred to in the industry as fiscal intermediaries – have worked together “seamlessly” in the past, Caputo said, adding he would like to see that relationship grow with future contracts.
With no nurses or social workers on the payroll, Caputo said Concepts is able to keep administrative costs to a minimum, another advantage it has over traditional home care agencies. Caputo estimated that three percent of Medicaid reimbursements covered overhead costs, and the rest went to paying personal assistants’ salaries and benefits. But the benefits go beyond a successful business model, Caputo said.
“When a consumer finds the right assistant, they become like family,” he said, adding that some consumers have been with Concepts for more than 25 years.
For now, Caputo is focused on figuring out ways in which Concepts can diversify its services to compete in the world of managed care. He said the goal is to contract with a handful of managed care providers and carve out a niche in the market. This includes the potential for physical therapy and perhaps even joint efforts with traditional licensed home care agencies.
“Consumer direction is great, but if tomorrow there’s an incident and you need additional care, you can stay with us,” Caputo said. “We want to be linked in with these other types of models.”
Fighting for the future
A lack of options isn’t new for Trocchia. Since most private insurance won’t cover long term home health care, Trocchia’s only option is Medicaid funded-programs. Trocchia lives on a fixed income of $906 a month in Social Security.
Since he receives more than the limit for Medicaid, he must pay Concepts of Independence $119 a month in surplus income. This leaves him with $787 a month to pay the bills, buy food, pay the rent and “maybe” have some left over for entertainment purposes.
Because his choices for how he receives care are limited, Trocchia makes the most of the opportunity to choose who he lets into his home. In a traditional home care agency, there is a constant psychological “tug of war” between the patient and the attendant, he said, over how to best provide him assistance.
Often, he said an attendant will come in and think he/she knows what’s best. But with Concepts of Independence, Trocchia is in complete control.
“I don’t need you to take care of me,” he said. “I need you to work with me.”
Trocchia still remembers placing an advertisement in the Village Voice in October 2003 and getting a response from Velilla, his current assistant. During the initial interview there was an “immediate connection,” Trocchia said, adding that finding compatible personalities is key.
Trocchia formerly served as president of the New York City advocacy organization Disabled in Action. He is openly gay, something he said helps to make him a good activist and speaker for people who, in many cases, do not have anyone to advocate on their behalf.
“They’re both outsider status,” Trocchia said of being disabled and gay. “Could you be any more different?”
Though he is no longer active with Disabled in Action, Trocchia said the recent push for managed care is moving too quickly. He worries that clients at traditional home care agencies will begin to begin to settle for less, and that the effects will be particularly devastating for people who might not have an alternative.
With financial assistance from his parents, Trocchia is able to go to Manhattan to see a private physician. But without insurance each consultation costs him $350 out of pocket – money that many simply don’t have.
“It’s not thought out. You’re railroading this plan through,” Trocchia said of the redesign team’s care coordination model. “You’re asking people who have nothing to deal with even less.”
Despite his frustration, Trocchia has already done his part by going to public hearings held by the redesign team. For now, he will continue to work on his second master’s degree – this one from Queens College in Library and Information Studies. Trocchia holds an A.A. in Human Services, a B.A. in Political Science and an M.S.Ed. in Counselor Education.
If he is forced to leave Concepts of Independence next July, Trocchia said he will likely join Independence Care System, which has offices in Brooklyn and specializes in providing care to the physically disabled. He also plans to take a pillow and a blanket to the governor’s office, where he said he will camp out with the help of Velilla.
“If I’m not able to live independently at my house, then I’ll live at your doorstep.”
Click here to listen to Trocchia discuss the differences between traditional home care and consumer-directed care.
* This story was corrected to reflect the fact that Trocchia earned his bachelor’s degree in Political Science, and is currently working on his second master’s degree.