The battle for care

Guardian of Temple woman says people with disabilities would be  better off with managed care organizations providing services

  • Toni Ftergiotis of Temple volunteers at the Temple Store once a week, cleaning off shelves and vacuuming.
  • Toni Ftergiotis of Temple volunteers at the Temple Store once a week, cleaning off shelves and vacuuming.
  • Toni Ftergiotis of Temple volunteers at the Temple Store once a week, cleaning off shelves and vacuuming.
  • Toni Ftergiotis of Temple volunteers at the Temple Store once a week, cleaning off shelves and vacuuming.
  • Toni Ftergiotis of Temple volunteers at the Temple Store once a week, cleaning off shelves and vacuuming.
  • Toni Ftergiotis, 57, of Temple, left, votes for the first time on Tuesday with the assistance of one of the town's polling clerks.
  • Toni Ftergiotis, 57, of Temple, states her name for Deputy Town Clerk Jeane Whitcomb, after casting her ballot with Moderator Steve Cullinan, center, in Temple Town Hall on Tuesday. Ftergiotis, who has special needs, became inspired to vote for the first time after discussing the political ads that dominated the airwaves with her home care provider.

Toni Ftergiotis of Temple carefully takes the cookies and crackers off the shelf at the Temple Store. She takes a sponge and meticulously cleans the shelf before taking a paper towel and wiping it dry. Then, the products go back on the shelf. She then turns to assisting the store owner with clearing one of the metal racks so he can fix a bent spoke.

“I like cleaning,” said Ftergiotis, definitively. “I like vacuuming.” To demonstrate, she mimes vacuuming the carpet, humming and doing a little dance, like she does when the store owners put music on for her. Every week, Ftergiotis, who has a developmental disability, goes to the store to help clean the shelves and vacuum the floors. It’s one of several regular activities she engages in throughout the week that helps connect her to the community. The rest of the week, she lives with a family in Temple. Aside from volunteering at the store, she also participates in cooking classes, goes bowling once a week, and crochets scarves, which she donates to those in need .

It’s a situation that’s been ideal for Ftergiotis, explained her sister and guardian Johnna Grzywacz of Weare, who has seen great improvements in her sister’s quality of life and cognitive function since she switched care providers two years ago from Monadnock Developmental Services in Peterborough — which Grzywacz had multiple issues with — to the Polus Center of Worcester, Mass.

When it comes to services for people with disabilities in New Hampshire, the options are few. Currently all developmental services offered through the state Department of Health and Human Services are provided by contractual agreement between Bureau of Developmental Services and 10 non-profit area agencies throughout the state. Direct care providers rely on agency management for the support they need to do their jobs.

Having had mixed experiences with area agencies that serve people with disabilities, Grzywacz is watching one upcoming court case carefully. In June 2011, Senate Bill 147, requiring the Department of Health and Human Services to enter into a $2.3 billion contract for managed care of the Medicaid program with Boston Medical Center Health Net, Centene and Meridian Health Plan — managed care organizations — was passed into law. Step one, which includes contracting acute care, is already in place. Step two, which includes enrolling long-term services, such as nursing home care and care of people with intellectual or developmental disorders, is poised to be complete before the end of the year. It’s a move Grzywacz favors, because she feels it will create a cost efficiency, but more importantly, a sense of continuity when it comes to the quality of care delivered to clients. What all this will mean for the area agency system in New Hampshire is unclear; area agencies have said their role under the new law in undefined.

In a managed care system, states make prospective payments to managed care plans to provide or arrange for all services for enrollees, which is considered more cost-efficient than contracting through area agencies. Managed Care organizations are paid a fixed amount regardless of the number of services they provide.

Not everyone agrees with the interpretation of the new law when it comes to care of those with developmental disabilities, however. Nine out of the 10 area agencies that provide the services for New Hampshire, including Monadnock Developmental Services, or MDS, have filed a complaint through their attorneys, Devine Millimet & Branch of Manchester and Concord, at the Hillsborough Superior Court, asking for a declarative clarification of the new law.

Under the new law, mandatory Medicaid services will be handled under the managed care organizations. The complaint argues that long-term care for people with developmental disabilities and acquired brain disorders is not considered mandatory, in the way that long-term care of the elderly is . The developmentally disabled were also not included in the original discussion of the bill, the complaint notes.

Detractors of the move to managed care have argued that managed care organizations don’t have the experience dealing with people with developmental disabilities, and that funneling state funds to the Managed Care Organizations may leave area agencies, such as MDS, that provide such services without access to those funds .

In an interview with the Ledger-Transcript in late August, Alan Greene, executive director of Monadnock Developmental Services, said it is not in the best interests of the people that MDS serves to be included in the change. “I believe the state will be courting disaster,” he said in August. “Only four states use managed care for the developmentally disabled. None of them are using private companies.” Also, he added in that interview, managed-care providers are for-profit businesses. “They’re either going to eliminate services for some people or dilute the quality,” he said. “We don’t know what the result will be. We’re courting danger.”

Thomas Quarles, a lawyer with Devine Millimet & Branch who is representing MDS, along with the other area agencies in the lawsuit, said that managed care organizations taking over the care of people with developmental disabilities and acquired brain injuries could have far reaching effects. “In the worse case scenario, we are at the mercy of the managed care organizations — both the clients and the area agencies, the current system of care. The area agencies go out of business, and the clients have to rely on these managed care organizations, which have no experience in providing care for these folks,” he said. “So it’s pretty dire situation.”

The area agencies which currently care for the developmentally disabled population don’t have a clear idea of how or if they will fit into this new system of care, said Quarles, which is one of their major concerns. Especially as a large majority of the population depends on some level of Medicaid, so almost the entire population will be affected by the change in law, he said.

“There may be a few people that can afford to private pay all of their care, but the vast majority depend on Medicaid,” said Quarles. “There are 12,000 people in this system who rely on this system of area agencies to provide these services.”

The Department of Health and Human Services has filed a motion to dismiss the complaint, because the conduct the complaint seeks to stop hasn’t occurred yet and it also seeks an advisory opinion regarding the interpretation of legislation, which New Hampshire law doesn’t allow, according to the motion to dismiss.

“The Plaintiffs...are under a cloud every day, wondering whether the services they have come to rely on from the Plaintiff Area Agencies will be altered or eliminated by the managed care organizations, and, just as fundamentally, whether the state will take the position that the area agencies can no longer provide or coordinate such services for these populations...,” wrote Devine Millimet & Branch in a objection to the motion to dismiss.

A hearing to decide whether the court will continue to consider the complaint will take place Thursday, beginning at 9 a.m. at the Hillsborough County Superior Court North.

Grzywacz said she is in support of the managed care organizations taking over the system, because she hopes it will help streamline some of the processes. She said while her sister was under MDS’ care, over the course of about 15 years, she did not feel the home care providers Toni lived with were being adequately supported under the system of area agencies, with limited communication between the home caregivers and the agency. One of Ftergiotis’s home-care situations ended when the provider’s stipend was cut unexpectedly.

Another issue, said Grzywacz, was that she was frustrated with the lack of communication between herself as Toni’s advocate and the management of MDS. She even went so far as to file a petition with the court to lift communication restrictions at Monadnock Developmental Services in 2011, which was settled out of court by a mediator. While communications did get better after that, Grzywacz said, eventually MDS ended the care relationship, and Ftergiotis was moved to a different system, as well as into a new home situation. The Polus Center is Massachusetts-based, but has a New Hampshire office, said Grzywacz. They set Toni up with a new home provider in Temple, and the improvement was immediate, said Grzywacz.

Laura Bunk of Temple, who has been in the human services business for over 23 years, agreed to take Ftergiotis in. Bunk had formerly worked in the system under MDS, on and off between the late 1990s and about 2003, she said in a phone interview Wednesday. As a home-care provider under MDS, she echoed some of Grzywacz frustrations in dealing with the system and gaining a clear line of communication. It’s a different system with Polus, she said.

“If I was just dealing with MDS, I don’t think I would have been able to keep Toni with me,” said Bunk. Multiple calls seeking comment from MDS’ Greene were not returned.

With Polus, she works closely with her case manager to solve issues, she said, and doesn’t have to waste energy in what she referred to as a tug-of-war over the client’s care.

Since coming to live with her, Ftergiotis has been able to reduce her medications, and has become a part of Bunk’s family, she said.

“It’s been like watching a butterfly come out of the cocoon,” said Bunk of Ftergiotis’ progress since coming to live with her. “She’s got so many outstanding qualities.”

“When home providers are not supported by area agencies, it leads to displacement, health deterioration and diminished quality of life. These are all factors that affected Toni,” said Grzywacz. “Since she has been with Polus, she has experienced her highest level of ability and is flourishing in her community. Polus offers structure to her program and great support for her home provider and direct support as well.”

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