Not Home Alone
http://www.philadelphiaweekly.com/news-and-opinion/NOT-HOME-ALONE.htmlA helping hand for helping hands.
By Daniel Denvir
Jun. 9, 2009
Every Tuesday morning Brenda McFadden leaves her West Philadelphia Home and makes the 45-minute drive to Berwyn, Pa., to take care of Joe Pepe, a 72-year-old with muscular dystrophy.
Pepe is wheelchair-bound, his speech punctuated by the movement of a mechanical ventilator that's hooked into his tracheotomy. For the past seven years, Pepe has depended on 59-year-old McFadden, a consumer-directed attendant, for care. McFadden helps feed Pepe, who does not have use of his arms; she changes the oxygen tank that supplies Pepe's ventilator and suctions excess mucus out of his tracheotomy.
For years Pepe has fought tenaciously to hold on to his independence and stay out of nursing homes. He worked as an accountant and treasurer for a Philadelphia-area company, as a health insurance agent and then in the late '80s got involved with the disability rights movement, worried that he would be institutionalized.
"There is a stubborn strain somewhere in my genes," he says.
Like Pepe, the majority of the 500,000-plus disabled people in need of long-term care want to live at home, with relative independence. To do so, they need people like McFadden to help them get through the day. But the working conditions are intense, and given the sacrifices, poorly
remunerated.
McFadden stays at Pepe's apartment until Saturday mornings, when she drives back to her West Philly home for a few days rest. During her last two-week pay period, she worked 239 hours. Within the context of the industry, she is paid (by Medicaid reimbursements through a state program that allows people to receive care at home) more generously than her counterparts: She earns $11.11 per hour-$1.61 above the average. She has no health insurance, paid days off or overtime.
These conditions for homecare workers make it hard for people like McFadden to stay at their jobs. High worker turnover makes it difficult for the disabled to stay in their homes. That means people like Pepe could end up institutionalized after all.
In Pennsylvania, disability activists, elderly rights advocates and Unions are working to transform the state's model of community-based care.
Advocates say that the creation of the the Consumer Workforce Council, a state body of elected homecare consumers and state appointees, will start to set things right. The proposed body- similar to entities established in California, Oregon, Washington and Massachusetts-would create a registry of homecare workers and negotiate collective bargaining agreements should workers choose to organize a union. Unionized workers could boost wages and benefits through higher Medicaid reimbursements.
The current system poses health risks to workers and consumers alike. A few years ago, McFadden got a staph infection. She had to pay $255 out of pocket for her medication. She's also diabetic, and pays $130 per vial for insulin. She says her doctor gives her extra medication when he has it on hand, but he often doesn't. She says she's been "blessed" to get sick on her days off.
McFadden says better wages and benefits and the worker registry will make things more livable for both her and Pepe. "He wants to take care of me and I want to take care of him. He doesn't want me to burn out," she says. After countless hours together, the two are best friends.
Federal and state Medicaid law requires that disabled people receive a state-granted waiver to get reimbursed for homecare, making the system highly biased toward placing people in institutions. This is the system's default setting, especially for the elderly disabled. People who choose to stay in their homes often have trouble finding caregivers and are forced to turn to agencies, which send out workers on contract.
Such agencies are voicing their opposition to the Consumer Workforce Council because they stand to lose business to consumer-directed attendants.
Disability activists and homecare workers say that agencies are often unnecessary middlemen, making a profit from Medicaid dollars and impeding the close relationships that can develop between caregivers and their clients.
If McFadden worked for an agency, she would have to work wherever it decided to assign her. Similarly, if Pepe had to get his workers through an agency, he would be assigned someone of its choosing, and be deprived of the responsibility to hire, supervise and fire homecare workers.
"With the agency model, you might end up with the agency running your life," Pepe says. "With an agency, [sometimes] you have nobody to fill a shift ... That happens all the time."
For Pepe, McFadden affords him the only way to live a real life: being at home, where he uses a mouth- and breath-controlled device to check Email and trade stocks. He says that for all of today's problems, in the 1980s things were much worse, and independent living would have been impossible.
"Institutions were the only government- supported program for someone on life support," he says.
McFadden, too, takes a dim view of institutions. She paid regular visits during Pepe's recent hospitalizations, taking care of him even though she couldn't be paid. She was afraid to leave him alone, saying Pepe would have to wait until a nurse passed his room to be attended to, sitting in
unnecessary discomfort and pain. McFadden worked at a nursing home before meeting Pepe, so the overworked staff and impersonal treatment common at large institutions did not surprise her.
"I hated it because they were mean to people. I prayed to God and asked for someone who needed me." That's when she found Pepe.
Homecare workers get injured on the job more often than construction workers and miners. According to Secretary of Labor and Industry Sandi Vito, 75 percent leave work within a year.
An attendant failed to show up the very morning of Pepe and McFadden's interview with PW . McFadden depends on other attendants to help with certain tasks, like getting Pepe out of bed in the morning. When McFadden finally reached the no-show attendant, the woman told her that her son had been arrested.
"If there were a registry, we could have found someone [else to come in]," Pepe said.
McFadden agreed. "We're always skating on thin ice. I never know who's gonna quit, who's not going to show up. That interrupts not only Joe's life, but my life."
Although McFadden is not a supervisor, she's the only person who's been around long enough to show new attendants the ropes. McFadden estimates that she and Pepe have trained 15 attendants in the past seven years.
Pennsylvania ranks as the country's third oldest state. In 2008, 15 percent of the population was 65 or older. Areas hit hard by the collapse of steel and manufacturing have particularly elderly populations, as young people move away to look for jobs. But many grandparents cannot afford to escape to Florida, and most prefer to stay in their homes.
According to Vito, the state's still booming elderly population will require 30,000 new homecare workers by 2016. By 2025, the number of disabled elderly in the state is projected to increase by between 27 and 41 percent.
According to the Department of Public Welfare, putting someone in a nursing home costs an average cost of $67,000 per year, which is almost three times more expensive than caring for someone in their own home. Yet according to the AARP, just 11 cents of every Medicaid dollar in Pennsylvania spent on long-term care goes to home and community care, one of the lowest rates in the nation. Most of the rest is spent on nursing homes, places that are disliked by many disabled people.
Disability activist German Parodi, a 25-year-old from Puerto Rico, was left paralyzed at age 17 after being shot during a carjacking. He says he'd never go to a home. "In a nursing home, they're in charge of everything: when to eat, sleep, to have sex-if they even allow it. People don't have to make the same choices as me, but I want everyone to have the same options as I do."
Although the public policy center of gravity has in past decades shifted toward community-based care, changes in state and federal policy are still needed to make sure the disabled-and especially the elderly disabled-are able to stay in their homes.
Josephine Jordan, 33, has been a homecare attendant for her West Philly neighbor Marsha Thrower, 43, for four years. Thrower suffers from multiple sclerosis and uses a wheelchair to get around. The two have known each other since Jordan was a child.
In 2007, Jordan was hospitalized for five days with kidney stones. She came back to work the next day, telling Thrower that she felt fine and that it was "boring at home." But Thrower says she "knew it was a lie" and that Jordan simply could not afford to miss another day of work. Thrower says a Consumer Workforce Council would ensure that "attendants would have the time to take off for emergencies or illness and not worry about losing pay. And they need insurance."
When asked, Jordan-who makes $9.85 per hour-admitted that she couldn't afford to stay home. "If I didn't come back to work, I wouldn't be paid," she said.
On a May afternoon, Jordan was at the office of Liberty Resources, one of the country's largest centers for independent living, which facilitate Medicaid payments to consumer-directed homecare workers. Liberty and other disability rights groups have joined the Service Employees International Union (SEIU), the American Federation of State, County and Municipal Employees (AFSCME) and the AARP in pushing for the Consumer Workforce Council.
Jordan was sitting next to another one of her clients-German Parodi, Liberty's national policy and advocacy coordinator. Parodi and Jordan say the relationship they have developed would be impossible through an agency or institutional care-the two even got their tongues pierced together. "He's not just my boss-we're friends too," says Jordan.
And they protest together.
Both caregiver and client are active in ADAPT, a national disability rights group. In April, 91 ADAPT members were arrested outside the White House at protests demanding passage of the Community Choice Act, which would eliminate Medicaid's bias against homecare.
The proposal currently on the table to create the Council would make it an "employer of record," allowing it to function as the homecare workers' boss for the purpose of collective bargaining. The disabled who depend on the attendants would still be in charge of hiring, firing, scheduling and supervising.
Jordan first got involved in the May protest when Thrower invited her to a disability rights march in Washington. "Marsha said, 'We go out and we protest.' I said, 'Okay, but I'm not going to jail.' The first time I went to Washington, I saw all the wheelchairs. It was great."
The collaboration between Jordan and client Thrower is key to the success of the movement, Pepe says. "People like myself will not have the means to live in a community the way they want until the day comes when we ... have a reliable, dependable, efficient workforce. Without that, this isn't gonna work. And that includes political clout. Until consumers and attendants join together and pressure the government as a block, we will have a very hit-or-miss program."
It's no surprise that our society fails to recognize work in the home-just look at the ambiguous situations of stay-at-home moms, nannies and housekeepers. Homecare unions in other states, as historians Eileen Boris and Jennifer Klein note, "became the mechanism to end the fiction" that a homecare attendant is not a worker.
And data from states that have Council-like bodies in place indicate that such programs work, suggesting that increasing wages and benefits boosts retention rates and that the establishment of a statewide registry makes it easier for consumers to find care.
The proposal to create the Council, which has the full backing of the Rendell administration, is to be enacted by what is called an Intergovernmental Agreement, or IGA. The Steering Committee on Long-Term Care Workforce Issues and the Secretaries of Aging, Public Welfare and Labor and Industry have been sending draft agreements back and forth since last year. A new version is expected to reach the executive branch soon, at which point two counties must sign the IGA to activate the law.
Council supporters want to establish the Council through IGA because it would bypass the Republican-controlled Senate, which has been hostile to the proposal. Republicans are demanding that the Council be introduced as legislation, which would essentially kill it, freezing in place the homecare status quo.
Republicans are backed by the Pennsylvania Homecare Association (PHA), which has actively lobbied against the Council. The PHA, representing hundreds of private agencies, says that a Council would create another layer of unnecessary and harmful government bureaucracy. They claim there are a number of ways to improve wages, benefits and working conditions under the current system.
The PHA rhetoric echoes that of groups who oppose increasing government regulation of the national healthcare industry, campaigners against the specter of socialized medicine. But Medicaid funds are public to begin with, so it's unclear why private industry has a right to them.
Another major PHA claim-that there's no shortage of workers-is contradicted by both state officials and a 2006 study by the Pennsylvania Medicaid Policy Center at the University of Pittsburgh.
Why, then, all the hand-wringing when the Council would not directly affect private agencies? The PHA seems afraid of two things: that higher wages for consumer-directed homecare workers will set a bad precedent-a tempting rabble-rousing example for their employees; and that consumers will flock to attendants listed in the new registry. (Nursing homes, which seemingly have a lot to lose under the proposal, have not taken a public position on the Council.)
Homecare agency owner Joe Bakey, who has testified twice against the proposed Council, acknowledges that this is a major concern, saying, "They won't stop at consumer-directed employees." Bakey worries his workers may switch to consumer-directed attendants if they no longer needed the agency, taking their clients with them.
Disability rights activists agree this is a possibility. Joe Pepe says that once a registry makes it easier for people to choose consumer-directed homecare, they will. "It will become clear that they can get better services from independent attendants," he says.
The PHA, taking up a defensive posture, is now saying they advocate better conditions for workers, but their opposition to the Council is clearly driven by a desire to keep the homecare business in agency hands. PHA Executive Director Vicki Hoak conceded as much in her November 2008 testimony before the House Republican Policy Committee in Lebanon, Pa. "Our opposition to this proposal was what brought us all together, but that has changed now. We are now working together to strengthen our efforts to [sic] realistic and fiscally responsible ways to elevate the profession of direct care workers."
But without the campaign for a Council, would wages even be on their radar?
For Pepe and McFadden, what is clear is that the status quo is broken, and that empowering workers is the best way to ensure that disabled people get access to quality care.
"People who come out to live on their own, they should be able to live life to the fullest, like we were promised in our Constitution, right?" Pepe muses. "The people have got to take a stand."
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and on a related subject... I was just notified that my ssi monthly check will be cut by $20 . It is the second cut this year. the first cut of the year was over $30. the monthly check is way below the poverty line. I always wonder what crips who don't have tribal support network of friends and lovers like I do survive!
In Freedom,
Frank Moore
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Hi Frank,
This message may just be verifying your misery; I was just informed by the accountant at RCEB that staring next month, the SSI rate for someone living in their own household will be reduced to $850 per month. A second reduction this year. Where is the federal rescue fund, President Obama?
Henry Long
RCEB
Case Manager
Older Adult Services Unit
Oakland Office
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that is what I will get per month, Henry. Such cuts are really tax upon the poor! And then THEY "give " us a one time $250 "stimulus " check!
In Freedom,
Frank Moore
