Lisa Hoffman and Charles Atkins, MD

For some weeks, Lisa has been following a news story about a local man—Joe Stango—who in the course of a couple weeks obtained over 12,000 letters in support of a federal grant program that would help people in nursing homes, who wanted to return to their own home and families, be able to do so.

"It hits close to home," Lisa starts as we prepare for our interview.

"I know," I say, "it wasn’t that long ago you were in a rehab facility being faced with very difficult decisions, including whether or not you’d return home at all."

"It was very scary, and there was almost a kind of blackmail involved, because in order to have Medicaid pay for a nursing home stay [Medicare only covers more-acute rehab stays; of the 23,000 individuals in CT currently living in nursing homes about 2/3 of the funding is through Medicaid] I would have had to impoverish myself—I think you can only have $1600. So that would have been the end for me. I would have been in a nursing home, having given up any financial possibility for a return to my own home. It’s a terrible decision, especially when you’re not well."

At which point there’s a knock at the door and we meet Joe Stango—a vice president and financial advisor with Merrill Lynch—who has obtained from personal and professional experience a level of expertise about nursing home care, and the out-of-whack system that is heavily stacked against people—typically older people—being able to stay in their homes and with their families.

He quickly confirms some of the details around qualifying for Medicaid, "If you’re a married couple the remaining spouse gets to keep one car, the residence and half of the investible dollars up to $96,000. As a single person you’re absolutely right," he tells Lisa, "you have to spend down to $1600--there are some exclusions. They allow you to take some of your assets and do things like buy a funeral contract. But in all honesty it isn’t enough."

Immediately we see one of the first inequities in the system, a theme repeated throughout our visit. "The reality," I comment, "is that there are a lot of single older people—mostly women--so the option to maintain the home is lost if you don’t have a spouse."

Lisa adds, "There are so few single men here in this retirement community, that whenever one moves in they’re bombarded with all the single women coming to visit; I call it the casserole brigade."

We then get a bit of background information from Joe and see how the intersection of his personal and professional lives has made him uniquely suited for the battle he’s taken on.

"My wife and I were brought up in Waterbury," he begins. "When it became evident that both of our mothers were aging and becoming more disabled each year, we made the decision to take care of them. The problems were two fold. Number one I wanted to have a house that was large enough to accommodate our mothers’ needs as well as our children’s needs [he has three]. It was important that we stay together as a family, but also people needed their privacy. So regretfully, we made the decision to leave Waterbury. Ironically, in 2001 when 911 happened, my mother’s health began to deteriorate. My firm made the decision to close the office I was in, and I had the difficult decision of either moving on geographically or coming home. Given my children’s ages--they were teens--and given our mothers’ ages I made the decision to come back and go to work in Southbury. Sadly, around this time, my mother deteriorated beyond the point we could help her at home. So I Was forced to put her into a nursing home."

"Tell us more about that," I ask, knowing that millions of American families are faced with this complex decision.

"I’ve been practicing in the area of financial service for twenty years," he says. "I’ve counseled many people and families on Medicare, Medicaid and estate planning. I sat on one side of the desk, but had never really attached to the emotional experience. That first changed when it happened with my mother-in-law. We had a major scare with her when she was in her early 60’s. She has multiple sclerosis and was struggling with the disease. She was determined she wasn’t going to be beaten by it. At that time we were living with her while our home was being built in Southbury. One morning about 2:00 am, I was wakened to a tapping sound…three taps in succession, over and over. I sat up in bed and listened to it for about 10 minutes. Then my wife woke up and said, ‘I think something is wrong’. I realized it was my mother-in-law she was on the floor; her legs had finally given out. It was the last time she was able to stand. She’d broken her arm and required immediate surgery. When she awoke her other arm had lost function, from lying on it. That was our first experience with the threat of nursing homes and Medicaid. But to put a 61 year old woman into a nursing home--it was heart breaking. We just couldn’t do it. She was there for about 4 months and we got her out just in time for Christmas…Then it happened with my mother, so we were planning a little farther ahead. I think the mentality of many older people is that you go into denial, ‘this will never happen to me’. That was certainly true for my mother. Whenever we’d broach this with her she’d say, ‘no no, I’ll be fine.’"

"Did she live alone?" Lisa asks.

"No, I’d taken her into my home by that time. I remember the last time she stood on her own. My daughter was in a play and my mother was very anxious to see her in it. We were driving around in a Town and Country," and he describes a process very familiar to Lisa and me about how getting in and out of vehicles can be a challenge as physical mobility declines.

"This one time," he says, "she stood up and instead of pivoting she immediately began to sink. I couldn’t get her back into the chair so I had to gently lay her on the ground and get help. That was the last time she was on her feet. That’s when they told me she’d be in a nursing home for the rest of her life. Unfortunately, she’d stopped receiving Medicare rehab services because they said she could no longer achieve goals."

"That’s terrible," Lisa comments, and then shares the struggle she had to go through when Medicare wanted to discharge her rehab therapists, shortly after she’d returned home from four months in the rehab facility. "I couldn’t have gotten down my walkway to get into a car," she says. "That’s the terrible thing with Medicare, in order to maintain services you have to show improvement. But how do they now how far you’ll be able to go? If they’d stopped when they’d wanted, I would never have been able to make it out of my condo and get into a car, even if it were just to go for doctor visits. I had to fight and get the Center for Medicare Advocacy involved so that I could continue with therapy that eventually made it possible for me to leave my home."

As Lisa talks and we gear up for the next installment of this interview, I’m reminded of the staggering complexity of Medicaid, Medicare and the various federal and state agencies that impact on the rules around nursing homes and healthcare. What Joe Stango is attempting to do in helping the state of CT secure a federal demonstration grant—Money Follows the Person--to bring people out of nursing homes and return them to their own homes and families is a big deal. In next week’s column we’ll walk you through his journey to date; it’s impressive and important, because what he’s pursuing in trying to bring his mother home is forwarding a cause that affects most of us directly. It’s about human and civil rights, dignity and giving people choices over how and where they choose to live their lives, even in the face of disability and illness.

...and part two

Today, Lisa and I resume our interview with Joe Stango, a Southbury resident who is a leading the battle for the state of CT to obtain federal grant funding to help nursing home residents, who wish to return home, do so.

"After three years," Joe says, "I got increasingly frustrated seeing my mother in the nursing home. It got to the point where it felt like she’s in God’s waiting room."

"That’s what almost made me go back to New York," Lisa replies. "One day a neighbor asked me ‘how are you?’ and I said ‘I’m not feeling very well’. Instead of saying ‘can I help you?’ or ‘I’m so sorry,’ she replied ‘Yes, this is God’s waiting room.’ It’s a terrible expression."

"It is," Joe agrees, "but it’s also terrible to see your mother lying in bed 24 hours a day. She had a standard wheel chair that she couldn’t maneuver by herself. I’d have to go and push her. I finally had to lobby for them to give her an electric wheelchair."

"The other thing in a nursing home," Lisa adds, "when you have Medicaid you can’t get a private room. I can’t stand having anyone else in the room."

"In my mother’s case," Joe says, "she kind of resolved herself to being in a nursing home."

"It’s a fact," I add, "that the rate of clinical depression in nursing homes is incredibly high, much of that is situational. Many people just don’t want to be there."

"For me," Joe says, "The issue isn’t the quality of care. It’s about freedom of choice. They care about you medically, but there’s also the spiritual and the psychological side of things. You just can’t be nourished there. My Mother-in-Law [Joe’s mother-in-law continues to live with him and his family] sits at the evening table with us, she’s part of the conversation, she hears about her children’s and grandchildren’s daily events. The progression of her Multiple Sclerosis is very slow. I often attribute that to the psychological and spiritual uplift that she gets from her grandchildren. She’s truly a part of their lives. She’s been to their graduation; they see her on a daily basis. They help her tremendously. But when I then look at my mother in the nursing home, I see how much she’s missed."

Joe then adds, "I look at it as a three-sided issue: human rights, civil rights and faith. From a human and civil right’s point of view putting someone in a nursing home is taking away their freedom and civil liberties. At the point we believe someone can no longer care for themselves we put them away. Strangely, when we talk about Reverend Martin Luther King, Jr. in the 1960’s and equality between the races, we got to a point in this country where we decided it was the right thing to do. There’s no difference here. Third, is the faith issue. The family is the centerpiece of our society. This particular issue wounds and often breaks families apart. The legislation I proposed in January simply sought to heal families. Since January I’ve received almost 15,000 letters and emails from people all over the state. The big concern is will this be a budget buster? The fact is it’s a budget saver. The Department of Social Services (DSS) numbers show that for every dollar we spend on in-home care we spend two dollars for a person in a nursing home."

"So what exactly is Money Follows the Person?" Lisa asks.

"Money follows the Person came about because I got frustrated with my mother’s situation. All I asked for was a portability program that would offer people choice as to where they received their Medicaid services--in the home or in a nursing facility. But it would be up to the person and their families to decide. Lo and behold in March, it was just after the first article hit the newspaper with my mother and me on the front page, I learned that the president had signed into law in February, under the Deficit-Reduction act of 2006, a program called Money Follows the Person. In that executive order the president created a pool of money--1.75 billion dollars--to fund demonstration programs at the state level. The federal government knows that sending people home and giving them choice is less expensive than nursing home care. The carrot is this; instead of the federal government reimbursing 50% of the Medicaid payments to the state they would reimburse 75% for five years. In essence it’s encouraging states to stick their toe in the water and try this out."

"Why are they doing this?" Lisa asks.

"That’s easy," Joe says, "The Centers for Medicaid and Medicare Services (CMS) in 2003 published a report on the effectiveness of Money Follows the Person. They found that in the seven states that had already put the program in place, it was cost effective. The legislation I had proposed ended up being changed to accommodate this new federal program. Here’s the great part. I don’t know if you believe in miracles, but I had several minor ones. We got a unanimous vote on both sides of the aisle. We were like number 15 or 16 on the docket. I had the biggest smile on my face when they all voted for it. But here’s the miracle. After the vote, I took my wife by the hand and said let’s go to the Governor’s office. Let’s see if we can see her.’ Her assistant asked me what I wanted and she directed me toward an aide. But who comes walking out the door but Governor Rell. She said, ‘I know you don’t I?’ In fact, in 1977 she’d been a guest on a TV show I hosted. Because of that she gave me 10 minutes of her time. I told her the whole story—I can talk very fast. At the conclusion she said, ‘I like that idea’, and she put me in touch with her second aide."

Joe’s Hartford saga, as he explains his situation to one elected or appointed official after another, is a testament to the adage that one man—or woman—can make a difference. But perseverance is everything.

"I was told that as long as we applied for the money," he says, "we were guaranteed to get it. But then I discovered that this was not the case. That we’re in competition with thirty states and only ten will get the grant money. So what next? I thought. How do we insure that the state of Connecticut gets the money? So I blurted out that I was going to get 10,000 letters of support. In two weeks we got 12000 letters—they’re still coming in. The story has been on TV, and there’ve been quite a few articles. It’s caught the attention of people in Hartford, which culminated with the commissioner of The Department of Social Services (DSS) becoming involved. We had a long discussion and she asked that I bring the letters to the hearing that was held in October. Here’s the miracle of those 12,000 letters. People from all around Connecticut were downloading that letter and circulating it. I was receiving envelopes with 200 and 300 letters."

"When will you hear if the grant has been funded for Connecticut?" I ask.

"Before January 1^st. That’s when CMS makes the decision…the commissioner is quoted as being cautiously optimistic."

Even though much of the discussion has centered on funding, Joe again stresses the larger picture and why Money Follows the Person, is the right thing to do.

"I could easily have gone after the financial side of this," he says, "but I chose to focus on the prism—human rights, civil rights and family--because I want us to see what we’re doing to families, and how meaningful it is for someone to be at home—to have that choice."

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