Every little step: Despite strenuous working conditions and no benefits, Brenda McFadden stands behind her client Joe Pepe—as both a caretaker and friend.
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.
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1. Ineedavacation said... on Jun 9, 2009 at 08:21PM
“I am in the exact same situation because I choose to care for my sick mother 7 years ago. I have no insurance, x7 years, have not had a day off,x 7 years, no vacation time,x7 years, and just recently got a .50 raise thanks to the President. My mother has needed skilled care the entire time I have cared for her, provided by me, and I have probably saved the state a couple of million dollars, because of my efforts, yet no one can give me health insurance. in the 7 years I have cared for her, despite the fact she is seriously ill, she has been in the hospital less than 5 times (that number would have been way higher had she been in a nursing home) I understand why there is a hight turnover rate, they offer you nothing, no healthcare, no sick time, no vacation time, no paid holidays, no raises. I am one of the fortuneate ones, during this time, I have gotten three college degrees, so as my mothers life winds down, I have something to fall back on. A while back workers with the agency that pays me wanted to form a union, and the company told us not to do it. With the population getting older, keeping seniors independent and in their own environment is a win/win, but if you don't offer people anything, what is the quality of the people you will attract? The turnover in workers alone, will not maximize all this program is capable of being. It's a shame.”
2. Godswork said... on Jun 9, 2009 at 10:26PM
“People like Brenda are doing God's work. They deserve so much more. If this Consumer Workforce Council will get them some decent pay and benefits, I'm all for it.”
3. JMB Media said... on Jun 10, 2009 at 09:38AM
“Read the agreement and listen to the tesitomony of the Dept of Labor. I agree they are doing God's work but apparently pay rates wont change for a few years according to Sandy Vito Labor Secretary. The Labor Union SEIU gets their dues money first direct from the caregiver, resulting in less take home pay for a few years? How does this help? It only helps the SEIU because they supported a Democratic governer and its payback time for Rendell.”
4. LEtsbehelpful said... on Jun 10, 2009 at 09:56AM
“I think you're not really paying attention, JMB media these workers have nothing now and they know that only by working directly with home care recipients can they get the healthcare they need to stay on these jobs>? and in massachusets when this happened the workers got healthcare for the first time and 2 dollar and hour wage increases. even if it does take a few years we need to build this system up now so you or i have a real choice to stay at home with workers who get paid fairly you know? i think this is great and i am so glad it is about to happen in pennsylvania”
5. northshore said... on Jun 10, 2009 at 10:43AM
“JMB from what the article says caregivers would just get the right to form a union - I'm surprised they don't have that already. I thought every worker at least had the choice. I think it's great that the state is finally giving a voice in Harrisburg to the home care consumers who are affected by the system's shortcomings on a daily basis. Enough of all the health care companies spending thousands of campaign dollars keeping things the way they are!”
6. HOMECARE4ALL said... on Jun 10, 2009 at 06:42PM
“JMB Media - when workers (in this case home care attendants) bargain for a contract to improve wages and better working conditions - they democratically decided what is the dollar increase they want to win in a contract before they pay dues. No union nor worker is going to bargain a contract without a significant increase that will both ensure a wage increase and cover union dues.
If you don't pay tithes to your church every sunday, how are you going to sustain your church - and in this case a home care workers organization who will be able to collectively make improvements and changes and sustain our home care industry for Pennsylvania's seniors and people with disabilities.”
7. money said... on Jun 11, 2009 at 08:57AM
“No matter who is in charge of home care, it comes down to money and who pays for it. My employer has a lot of home care workers and it pays about $500/month for health insurance for a single worker under a basic HMO. That's $3.57/hr. on a 35 hour week. If the employee has kids top cover, that premium doubles. So there's your answer. Insuring and employee with children is $7/hr, before you even get to the salary.”
8. wecantaffordtonotdoit said... on Jun 11, 2009 at 09:04AM
“I don't know, these are all taxpayer dollars, right? And we pay $22 million A YEAR to take care of the costs associated with home care worker turnover, money. We need to stop the bleeding of home care workers out of this system, and building health care benefits and lviing wages into it is a requirement. We'll save billions in the long run. It's very exciting that the state is doing this.”
9. gimpboy said... on Jun 12, 2009 at 01:11PM
“The agency I work for provides attendant care services to the elderly and disabled. As I understand it, Consumers can choose which program they wish to be in, have the right to hire and fire attendants and can participate in their care plan. Also, as I understand it our wages are very competitive. I know that my agency is expanding across PA.”
10. Tasca said... on Jun 12, 2009 at 02:03PM
“Gimpboy that is cool but in my area the agencies send you people that might not be the right fit and you don't have ocntrol. The thing is that this Consumer Workforce Council will create another choice for people along with agencies. I don't understand how anybody in America can be against more choice and competition especially if it saves money and expands home care?”
11. Anonymous said... on Jun 13, 2009 at 11:19AM
“Hooray! Hope the efforts are successful, as well they should be. Thanks for sharing this article. Should this important policy differ state to state? What about federal intervention? Or is Obama unconcerned because grandma is well and lives with them.....”
12. Morgan said... on Jun 14, 2009 at 06:06PM
“With the Consumer Workforce Council, more qualified employees will want to be attendants because of higher pay and health-insurance. Consumers will have more control in hiring and firing their attendants. With these two factors, more of our people will get out of the nursing homes. The cost of care for them will go down while the happiness quotient will be higher for the disabled and their attendants.
I support the Consumer Workforce Council.”
13. Anonymous said... on Jun 29, 2009 at 08:31AM
“Having worked with the MH/MR Coalition, a group of state associations with dozens of the major community based agencies, there doesn't seem to be state support to increase direct staff wages. Governor Rendell actually vetoed a bill 2 years ago that would have tied increased funding to these programs by mandating a inflation increase tied to a Federal cost of living index. The state's history for funding these programs is dismal; 2% or less each year and quite a few years with a 0% increase. The problem is not with the Feds or the agencies. The problem is that the state will not increase it's required match money to draw more federal funding.”
14. Anonymous said... on Jul 9, 2009 at 04:56PM
“i think it will take pressure from community members, the attendants and the consumers who use them -- to make sure that the state IS required to build a reliable workforce when it rebalances and gets the funds to do so. it's up to us, the state just has to build us a way to make it happen!”