The letters arrived in the mailboxes of roughly 400 disabled New Yorkers a few days after May 15.
“The Fiscal Intermediary services that Concepts of Independence provides to you will end on 6/30/17,” the Human Resources Administration wrote. The recipients had been using Concepts, a Manhattan-based nonprofit, to administer payroll and benefits for the personal assistants they hired to take care of them. The HRA letter offered them a choice of 11 other possible intermediaries and said that if they didn’t pick one by May 26, the agency would assign them one.
HRA said the termination “will not change or affect your approved home care services.” But many of the people affected fear it will disrupt the fragile network of care they depend on for both medical assistance and basic daily tasks if they can’t keep the aides they have now.
“On July 1, this could affect my ability to get out of bed,” said Anastasia Somoza, 33, one of roughly 25 people protesting HRA’s move outside City Hall on June 8.
Somoza, a disability-rights advocate who spoke at last summer’s Democratic National Convention, is in a wheelchair with cerebral palsy, as is her twin sister, Alba. They’re asking the city to give them a six-month extension so they can research which of the 11 agencies would be best for them and their aides.
HRA already extended the deadline to pick a new intermediary to June 14, but the affected families have been unable to get a meeting with Commissioner Steven Banks, which they say they need to convey how important Concepts is to them. They also have until June 16 to get their assistants signed up with the new intermediary to ensure that they get paid after June 30.
Concepts’ contract was canceled because the organization “has committed some serious financial improprieties,” said HRA Deputy Commissioner David Neustadt, who was discreetly watching the rally from up the block. “Legally, we can’t do business with them anymore.”
The agency says Concepts failed to make a 2 percent cut in Medicaid spending mandated by Governor Andrew Cuomo, costing the city almost $2.9 million; didn’t reimburse the city $2.8 million from fiscal year 2011; and wrongly used more than $2.7 million in HRA-earmarked Medicaid funds for its managed long-term care business.
“It’s terrible that people are put in this position, but we didn’t put them there,” Neustadt said. “Concepts is the one that created this.”
Concepts CEO Anthony Caputo did not return a request for comment.
Neustadt added that the city had already extended the group’s contract as much as it could, and “the bottom line is that people will be able to be served by the same people.”
People at the rally, however, disputed that.
“In two or three weeks we cannot properly transition all our aides to a new agency,” said Maria Grullon, a single mother from the Bronx whose 21-year-old son is severely autistic. They also don’t know if their assistants will get the same health benefits from the replacement agency.
In a field where base wages are typically around $11 an hour, Concepts’ benefits, which are available even to part-time workers, are “the plum,” said Mary Somoza, the mother of Anastasia and Alba.
For Deborah Moses, a Manhattan therapist whose 26-year-old daughter has a genetic inability to metabolize protein and has five aides working different shifts, any disruption could be catastrophic.
She recently had two aides quit when they didn’t get paid while Concepts was trying an electronic timesheet-submission system, and she is “extremely concerned” that she might lose the remaining assistants if they can’t get good health benefits.
“I can’t just hire people,” she said. “I have to train people because the disease is extremely complicated.”
Her daughter’s food and tubes have to be monitored constantly, and if she vomits, the danger “can escalate rapidly.”
Concepts pioneered a system called the Consumer Directed Personal Assistance Program, in which disabled people and their families hire, train, and even fire their own health aides. The company acts as a fiscal intermediary to pay the aides and get them health insurance. This enables people to find assistants they’re comfortable with — someone who both understands their medical conditions and can help them with tasks as intimate as going to the bathroom.
“We like having that control,” Anastasia Somoza said.
“You can train your assistant to do anything you need,” said Athena Savides, 26, a Brooklyn College graduate who has cerebral palsy and has been receiving services through Concepts for four years.
Only one of the 11 fiscal intermediaries HRA selected has experience with consumer-directed care, said Anastasia Somoza; none are among the 37 members of the Consumer Directed Personal Assistance Association of New York State.
HRA said the selected agencies have 19 to 40 years of experience in long-term care, which has more extensive requirements than being just a fiscal intermediary. HRA also said 90 percent of the people affected have already signed up with a new agency, and that several of these agencies “offer comparable health coverage, and one may even exceed what Concepts offers.”
“We haven’t been given that information,” said Anastasia Somoza. “We haven’t been given enough time to find out.”
Health assistant Janae Brown doesn’t know what her benefits would be with a new agency and worries about the future of her job.
“I’ll be unemployed,” she said. “I have yet to receive a single call or email.”
Caputo wrote to clients and their families on May 19 to say that Concepts had not learned its contract would be terminated until May 11, after more than three and a half years of negotiations. The agency still serves more than 4,000 clients and 8,000 personal assistants in New York State through Medicaid managed long-term care plans, he added.
Concepts’ clients feel a mix of loyalty and irritation.
The Somozas have been with the agency for 21 years, Deborah Moses for 20 years, Maria Grullon since 2005.
“Joining Concepts was like coming home. We became part of a community that understood my daughter’s needs, as well as our needs as family members,” wrote Athena Savides’s mother, Carolyn Wember, in a letter to city officials earlier this month. “We know now that HRA, Concepts, and many other interested parties were aware of the contractual disputes between HRA and Concepts for many years — but disclosed absolutely nothing to consumers or their families until now, when it’s almost too late.”
HRA sent Caputo a letter in April 2016 informing him that Concepts should not get a new contract because it had failed to demonstrate “fiscal responsibility and business integrity.”
The state’s Medicaid Redesign plan begun in 2011 required most people receiving home care services to enroll in managed long-term care plans, in which the state pays a contractor a set per-person fee to deliver care, and the contractor has to limit the services provided in order not to lose money. Some disabled people, including the 400 covered by the Concepts contract, are exempt from that requirement.
Mary Somoza believes the contract’s cancellation is part of a long-term agenda of “pushing all our people into managed care.”
“I haven’t slept more than two or three hours for the last three weeks,” she said. “People who make these decisions have absolutely no clue what our lives are like.”