New York Vital Signs

Ahead of the game

With many home care agencies bracing for managed care, some are already prepared

By Matt Drange

Carmelo Gonzalez likes being his own boss.

After a brief foray into acting and a stint in film school, the 43-year-old started an online distribution and marketing website almost five years ago. Gonzalez runs the business – ccenterprise.biz – from home with the help of his partner, Carlos Sanchez. The pair say business is doing well, and they have plans to expand.

“When you have your business, no one can fire you,” Gonzalez says with a smile.

But the company isn’t the only aspect of Gonzalez’s life that he’s taken control of. Above all else, he values his independence.

Born with cerebral palsy, Gonzalez has extremely limited use of his arms and legs, and lives with a severe speech impairment. For help with daily activities he relies on a team of personal attendants who work round the clock in his home. Gonzalez receives his home care through Independence Care System (ICS), a nonprofit Medicaid managed long term care program based in New York City.

The program subcontracts with third party agencies such as Concepts of Independence, which allows Gonzalez to recruit, train, hire and fire his own personal assistants. They are paid by Concepts, which is reimbursed directly through Medicaid.

Gonzalez receives his other health care services – including nutritional, dental, occupational speech therapy and primary doctor care – through ICS. The distinction is key, said Gonzalez, who joined the program in 1999 because he was unhappy with the limitations of a traditional home care agency.

“They leave me alone,” Gonzalez said of ICS. “I don’t want to be bothered.”

But ICS is notable for another reason: It’s one of the few long term home health care programs in New York that operates under a managed care system.

Each month ICS receives a capped level of funding from the state – roughly $5,000 per patient – to provide a range of services, a system that until now was optional for providers. In the past many providers operated on a fee for service model, under which a client is charged each time they are visited by a nurse or receive physical therapy services at an adult day facility, for example.

Starting next year, however, anyone needing more than 120 days of home care a year must enroll in a managed care program, a move the state says will save money. The drastic shift in approach also figures to greatly boost the number of clients for ICS, said its advocacy director Marilyn Saviola.

With close to 1,900 members, Saviola said she expects that number to double in the next three years. Under guidelines released earlier this month by the state’s Medicaid Redesign Team, home care providers have until 2014 to shift clients into a managed care plan. While other agencies offer a variety of services geared toward older clients, Saviola said ICS would continue to focus on people with disabilities.

“It’s something that we believe in very strongly,” she said. “We don’t want to lose who we are when we grow. That’s really important to us.”

Before, Saviola said ICS enrolled anywhere from 10 to 15 new clients a month. Now that number has more than doubled, and is still growing. With roughly 160 full-time staff – including care managers, social workers, nurses and support staff – ICS is in the process of hiring additional staff to coordinate the various services offered to clients, said Saviola.

“It’s always a balancing act,” she said. “You can’t hire more staff until you have more members, and you can’t add more members until you have more staff.”

The challenge for traditional home care providers over the next three years will be to minimize the effects of the shift to managed care on patients like Gonzalez, who want to remain independent. ICS receives a flat Medicaid reimbursement per client per month, regardless of whether they need four hours of care a day or 24-hour care like Gonzalez, who needs help to cook, clean, dress, bathe and to eat, among other things.

Some worry that the managed care model creates an incentive for agencies to select clients based on their needs, with an emphasis on people who only require a few hours of care per day, maximizing the profit from Medicaid reimbursements.

“On paper it makes sense, as long you have enough people to balance it out,” said Constance Laymon, founder and president of Consumer Directed Choices, an Albany-based program similar to Concepts of Independence. “Whether or not that pans out in reality is a whole other story.”

With more than 42,000 New Yorkers receiving home care, existing agencies are scrambling to maintain their share of clients before newly formed agencies break into the market under managed care. Laymon said ICS was a “perfect example” of how managed care and consumer-directed care can work together, adding that she hoped other traditional agencies would follow a path similar to ICS.

Traditional home care agencies will need to begin shifting clients to managed care on April 1, while consumer-directed programs that cater to people like Gonzalez have until July 1.

When he was a client of traditional home care agency, Gonzalez said he worried “constantly” about losing his personal assistants. Every couple of months a social worker with the agency would come and verify his needs.

“You have to be careful what you say, because they’ll cut your hours,” he said. The problem with a traditional agency, Gonzalez said, is that they will send “whomever they want” to your home.

“One time, they sent me a lady and I had to take care of her,” he said with a laugh. Another time Gonzalez was assigned a woman who only spoke Spanish. “They assumed because of my last name that I spoke Spanish. I don’t.”

Now, Gonzalez has a team of five personal assistants, many of whom are like Emily Burch and have been with him for years. ICS sends a social worker to his home every six months to ask him questions about whether his needs at home have changed. The assessment process is usually simple, said his assistant Sanchez.

Sanchez was 19 years old when he first started working as a personal assistant with Concepts of Independence. He needed money to support himself through school and didn’t plan on sticking with the job long. But after watching his grandmother suffer through an extended hospital stay, Sanchez said he realized how little care people often receive.

“It’s not personalized,” he said. “It’s just how the system works.”

Sanchez, now 27, earns just over $10 an hour to help Gonzalez, and typically works between 40 and 60 hours per week. He started working for Gonzalez six years ago, and the two have been almost inseparable since.

In addition to their business, Gonzalez formally adopted Sanchez in 2006 – a defining aspect of their relationship that wouldn’t be possible under a traditional home care agency. ICS permits clients to hire whomever they want, including family members. More importantly, Gonzalez said, is the ability to pick and choose personalities that compliment his own.

In a traditional home care situation, that isn’t always the case.

“I look at home care like marriage,” Gonzalez said. “You gotta deal with so much personality, of course you’re going to clash sometimes.”

The close relationship aside, Gonzalez said all he’s really looking for in his assistants is someone who shows up to work on time, does what he asks and helps keep his apartment clean.

Gonzalez has spent the last eight years living in St. Margaret’s House, an apartment complex on the Lower East Side that is home to more than 250 seniors and people with disabilities. Operated by the U.S. Department of Housing and Urban Development, the building subsidizes Gonzalez’s rent with help from nearby Trinity Wall Street Church.

Like many people who rely on home care services, Gonzalez said he would do just about anything to stay out of an assisted living facility, generally seen as the alternative to in home services. Gonzalez grew up in New York City, and said he’s contemplated moving elsewhere but that many states don’t offer the same 24-hour care he can get in New York.

The difference between living at home and in a nursing home is huge, Gonzalez said. With ICS, Gonzalez can be as involved in making decisions about his home care. It’s a sense of self-empowerment that Gonzalez – and others like him – value, and why he plans to stay with ICS for as long as he can.

“A lot of disabled people, they just live; they exist. But with ICS, you are in control,” he said. “I’d rather rot here than be put in a nursing home.”