LEWISTON — When Jim Pombriant needed extra help buying food, he went to his case manager at St. Mary’s Regional Medical Center.
He worked, so he didn’t need the help often, but proper nutrition is a big deal to people living with HIV or AIDS, especially someone who is 69 years old. He got a $50 gift card to the grocery store in less than a day.
That was before this summer.
Now, Pombriant must call the Maine Center for Disease Control & Prevention and request an application for assistance. He fills it out, sends it back. Answers CDC workers’ questions about why he can’t go to a food pantry instead. And waits.
His last request took a month.
“They had no right to fix what wasn’t broken,” Pombriant said.
Starting July 1, the state changed the way it handled funding for HIV/AIDS case management and how poor Mainers with HIV or AIDS get financial assistance. Gone are grants to a half-dozen agencies and programs for case management; now a single agency in Portland gets funding. Gone are food cards and other assistance given out by local case managers; now people go through the CDC for help.
The problem: Some clients say they’ve experienced significant delays in getting assistance, they feel intimidated and shamed by CDC workers who want to know why they can’t get help elsewhere instead, and they’re losing the connection they had to people who knew what they needed and could get it.
“They’re just angry, they’re confused. Today alone … I had five (complaints),” Lori Jacques, case manager for the St. Mary’s HIV/AIDS case management program, said. “They’re going through the process for the second month in a row and it’s not improving for them, so they’re still complaining. It’s the same ones who were complaining last month. This isn’t going to get any better until Maine CDC improves their process.”
But CDC Director Sheila Pinette said the state made the changes after recommendations from the U.S. Department of Health and Human Services, which supplies the funding, and wanted to make sure its money was used as a last resort and assistance wasn’t being duplicated.
“We were asked to do this by the federal government, so we kind of have to follow their guidelines,” Pinette said.
She said CDC workers would never shame or intimidate people who need help. She believes workers are reviewing applications as quickly as possible.
“The program has never been set up to be like emergency assistance funding, so we really have never offered availability the same day a request is made,” Pinette said. “So I think that’s kind of a false expectation.”
Maine gets $520,000 a year in federal funding to help low-income people who have HIV or AIDS. In the past, all that money went to a half-dozen community groups and agencies to handle case management — connecting people with medical care, making sure they get their medication, helping with housing and providing other assistance.
In 2011, the CDC asked the U.S. Department of Health and Human Services to do a site visit. One hadn’t been done in years, a CDC spokesman said, and the CDC wanted to make sure money was being spent as intended.
The federal department made 17 recommendations after that site visit. According to the site visit report released by the CDC last week after a Freedom of Access Act request, none of those recommendations told the state specifically to cut case management organizations. They also did not encourage the CDC to take over the distribution of financial assistance.
However, the recommendations did say the CDC should set priorities to determine which services to fund, agencies should collaborate to ensure services aren’t duplicated, the CDC should more closely monitor the fiscal state of organizations doing case management, and the CDC should review the current process and purpose of case management based on the needs of clients.
The federal department also recommended the CDC hold a new competitive grant process for case management services every three to five years in order to tailor services to new and emerging needs. The six case management organizations had been chosen 20 years prior and never changed.
“They told us it was a recommendation,” Pinette said of the report. “And if you don’t follow their recommendations, you can be pretty sure the next year, it’s going to be a requirement.”
The CDC spent the next two years assessing needs. Ultimately, the CDC decided it would divvy up its $520,000 differently. One big change: It would pay just one group to do case management rather than six. The Frannie Peabody Center in Portland competed for and won that contract. It received $134,000.
That left $386,000.
The CDC used $36,000 to supplement its AIDS Drug Assistance Program. It set aside the remaining $350,000 to provide financial assistance for people who have HIV or AIDS and have needs that couldn’t be met elsewhere. That included help with food, housing and utilities.
In the past, people would have gotten that help through their case manager. Now they would have to go through the CDC.
St. Mary’s was one of the six groups providing case management before the change. It had received $67,000 a year from the state — half its HIV/AIDS case management budget — to help about 100 clients.
The loss meant it could no longer offer grocery cards, help with electric bills or provide other assistance. It started sending everyone to the CDC for help.
But that help, Jacques and others said, hasn’t come quickly or easily from the CDC.
“They’re doing a very poor job of it, quite frankly,” Jacques said. “I think it was a great idea initially to try to be helpful to folks across the region, but it was poorly designed and poorly executed. And clients are essentially suffering because of that.”
Clients have complained they’ve applied for assistance and haven’t heard back, only to later learn they didn’t fill out the date or forgot to check a box, so their application was deemed incomplete. Even with a complete application, some have said they’ve waited weeks for assistance.
Others said they called the CDC to ask for help with food and felt intimidated and ashamed because workers there wanted to know why they needed help from the state and couldn’t go to a food pantry instead.
“I have a lady down off Birch Street,” Jacques said. “She’s oxygen dependent, essentially homebound, and she was complaining last week. She calls me and she says, ‘Lori, how on Earth am I supposed to get to a food pantry? They’re giving me a hard time because they want me to make sure that I go to a food pantry first. You know I can’t get to a food pantry.'”
Pombriant said his own answer to the CDC was simple: He can go to a food pantry. But the food pantry can’t meet his needs.
“The nutritional demands made upon my body by the disease cannot be met with 40-year-old dented food cans and stale bread,” said Pombriant, who is a member of the St. Mary’s HIV/AIDS advisory board.
Pinette initially said she doubted CDC workers were telling clients to go to a food pantry before getting help from the state.
“I don’t believe that the staff is telling them that because I actually have asked about that,” she said. “But I do know they have to make sure that people in the program have exhausted all possible resources in an effort to keep with the ‘payer of last resort’ mandate by the federal government.”
However, a July 14 email from a CDC program coordinator to HIV/AIDS case managers across the state showed that clients were expected to go to food pantries before seeking help. If clients said they couldn’t, they were required to explain why they could get to a grocery store but not a food pantry.
After being asked about the letter, Pinette spoke with a program manager. She later acknowledged that food pantries are “suggested as an alternative resource.”
“We expect the client to use SNAP (Supplemental Nutritional Assistance Program) benefits, if they are available, and other food resources, like the food banks, prior to re-engaging with the program,” Pinette said in a follow-up email. “We have never denied a food card for lack of accessing food pantries. If people say that they can’t get to the food pantry, we do follow up to find out what the barriers are to accessing it, so that we can have a better understanding of the challenges facing our clients.”
Other HIV/AIDS organizations have not received the same number of complaints as Jacques in Lewiston, but some organization leaders do have concerns about the state’s changes.
Mark Rolfe, medical director for MaineGeneral Health’s Horizon Program in Augusta, said his program has a very good working relationship with the state and federal government. But he’s a little worried about a new $750 per person cap the state has placed on financial assistance through the CDC.
“We used to be able to be more flexible with the money. If a patient needed dentures and they cost $1,500 and we knew, boy, that person really needs them from their nutrition standpoint and we know they have a low viral load so they’re at higher risk of infections, that sort of thing, we had the flexibility to do that,” Rolfe said. “Now … it’s a flat thing, once you hit $750 bucks. You can blow through that very quick.”
Kenney Miller, executive director of the Down East AIDS Network in Ellsworth, is concerned the changes are unfairly impacting people in northern Maine. His program lost $40,000, about 35 percent of its budget. Although the Frannie Peabody Center will offer sub-grants to HIV and AIDS organizations for case management, Miller said those grants will be focused in southern and central Maine.
“Cutting northern Maine out of the picture as far as case management goes is not sustainable,” Miller said.
In an effort to continue serving clients, the Down East AIDS Network and Eastern Maine AIDS Network in Bangor recently merged.
Pinette acknowledged that change is difficult. But she said the state had to make changes in order to comply with federal rules.
That includes the $750 annual cap on assistance.
“Our hands are kind of tied,” she said.
And while people may not get the food cards and other help they were used to from their local organizations, Pinette said, they can get it through the CDC.
“I wouldn’t think it would take weeks,” she said. “I think the hope is to within one to two weeks, as long as we have the correct address and correct information.”
Although Lewiston-area clients have complained about CDC workers ignoring applications that are missing the date or other information, Pinette doubted that was truly a problem.
“I don’t know, I think that’s a little hard to believe,” she said. “Certainly I can look at that, but we review our applications every week in terms of what there is for a need out there. And then we try to follow up on all the incomplete applications.”
She said the program is doing what it should: provide assistance, but as a last resort.
“I’ve spoken to the program manager and she feels confident that we are trying to do the most professional job that we can to help assist people, to get their food vouchers and assist them with the program in the best way and the most efficient way we can,” Pinette said.
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