Archive for the 'Stories' Category

Two recent Come Care With Me Days in Pennsylvania garnered media attention in the state.

Representative Mark Longietti

Representative Mark Longietti of Mercer County shadowed direct-care worker Debbie Smith in a group home setting which houses four individuals with mental retardation and additional health complications. In talking about the importance of direct-care workers, Longietti said, “We need them to be here to work and take care of you, and they need to have health care so that they can do this job.” 

The ARC of Mercer County which employs the workers is facing the tough decision that many small businesses face when it comes to health care.  Right now they are trying to decide whether to raise the employee’s co-pays or eliminate family coverage in order to cover the rising costs.  They anticipate that the move will drastically decrease their ability to recruit and retain workers.

The event with Longietti was covered by local television station WKBN:

Senator Jay Costa

In another part of the state, Senator Jay Costa shadowed direct-care worker Mozella Langston in a consumer’s home in Pittsburgh.

The consumer, Mrs. Vidmar, suffers from diabetes, a hip fracture and coronary artery disease.  Langston, like many other home care workers, does not have health insurance.  Though her employer, ResCare offers a health plan, Langston’s low wages prevent her from enrolling.

Mozella Langston, Mrs. Vidmar, Senator Costa, and Nikki Falavolito

ResCare, Inc. Branch Manager, Nikki Falavolito says this is typical of many of their aides to be in this situation. In fact, only two employees out of 60 have enrolled in the employer sponsored insurance. ResCare Home Care offers personalized services for seniors and individuals with disabilities like Mrs. Vidmar. ResCare provides professional nursing, personal care and support, homemaking, respite, and many other services in the home, hospital, and long term care facilities.

Senator Costa helped Mozella with a number of chores including making a sandwich for Mrs. Vidmar.   The day was covered by the Valley Mirror.

• Read the article (pdf)
• Visit Sentor Costa’s Website

The PA HCHCW campaign continues to work with policy makers on solutions to this growing problem.

Allison Lee
National Campaign Manager
HCHCW
alee@phinational.org

Rep. Matt Smith and Mrs. Dombrowski

On Monday, state Representative Matt Smith (D-Allegheny) participated in the third Come Care With Me day as part of a program sponsored by the PA  Health Care for Health Care Workers Campaign.  Rep. Smith shadowed direct care worker Faith Buckel as she provided routine in-home care for consumer Ann Dombrowski.  Dombrowski, age 90, suffers from pulmonary disease COPD and Dementia.

Three times a week, Buckel assists Mrs. Dombrowski with such day-to-day tasks as bathing, housekeeping and meal preparation. Dombroski’s family, who noted the strong relationship between Mrs. Dombroski and her caregiver, said that they can’t imagine what they would do without Buckel’s help.  Unfortunately, within the year, they might be facing the  unimaginable.

Rep. Smith with Faith Buckel

Buckel, like a significant percentage of Pennsylvania’s direct care workers, is not offered health coverage as a home health aide, a part-time position she has held with Renaissance Home Care for nearly five years.  Renaissance provides benefits for full-time employees, but cannot afford to cover those working part-time.  Although Faith is covered by her husband’s benefits, that coverage will expire when he retires next year. 

Several studies have shown that a low wage and lack of health insurance forces turnover within the direct care industry and makes recruitment extremely difficult.  As a result, Pennsylvania is facing a shortage of direct care workers for its rapidly growing populations of seniors and people with disabilities.

“Direct care workers provide tremendous service to our Commonwealth’s most vulnerable citizens,” Rep. Smith said.  “It is incumbent on policy makers to eliminate the high turnover in this field and to work toward attracting and retaining workers in the vital area.”

Renaissance Home Care Community Liaison Kim Imler, who was present for the event, applauded Representative Smith’s interest in this issue.
“It was a wonderful opportunity to have Representative Smith roll up his sleeves and experience firsthand the difficult and incredibly important work that our direct care workers face each day,” she said.

Tracy Lawless
PA Campaign Coordinator
tlawless@phinational.org

Cindy Ramer

Last week, Newsweek highlighted the story of Cindy Ramer, a direct-care worker from Iowa, in an article about the high number of American workers who lack health insurance.

Cindy, a long-time certified nursing asssistant (and an active member of the Iowa Caregivers Association and the HCHCW campaign), is currently uninsured after her employer canceled the company’s health insurance plan several years ago.

Instead of seeing a doctor, Cindy now goes to free screenings and health fairs in order to find care.  Cindy, like a lot of uninsured American workers, is willing to pay for health coverage but is unable to find a plan that is affordable and comprehensive.

“I don’t think it’s fair that I’m caring for people and helping them with their health care, and I don’t have adequate, affordable health care of my own,” said Ramer. “I’m not asking for a handout. I’m just asking for something I can afford, and won’t have all these restrictions that they’ll cover this and won’t cover that.”

The article highlighted a recent study by the Robert Wood Johnson Foundation that found that 1 out of 5 American workers are uninsured.  Among direct-care workers that number rises to almost 1 in 3.  Efforts are underway to create a premium assistance program for direct-care workers in order to make employer sponsored health coverage more affordable.

Allison Lee
National Campaign Manager
HCHCW
alee@phinational.org

I work as a direct care worker for the Passavant Retirement Community Assisted Living Facility and have health insurance through my employer.    Even though I have health insurance, it does not cover most of the prescriptions I need to stay healthy.  For example, I had to change my doctor and four of my prescriptions because the insurance I get through my employer will only allow me to get certain prescriptions. The new prescriptions I got didn’t work nearly as well as the old ones, and I had to still pay $50 dollars out of pocket for each prescription.  That is an extra $200 dollars a month.

I also can barely afford to go to the doctor when I need to.  My co-pays get higher and higher every year, costing $20 to go to the doctor and $75 to go to the emergency room.  I have five children and the co-pay applies to each of them.  The $13 dollars an hour I make as a direct care worker just doesn’t provide me with enough money to pay for me and my children’s medical expenses. I am now spending money on my health that I should be spending on gas and electric bills and things that my children need for school and daily life.

Something needs to change.  If I get sick and can’t get the care I need, not only do I suffer, but so do the people I care for most like my children and consumers I care for at work.

Lori De Hanaut
Direct-Care Worker
Ellwood City, PA

I am a divorced mother of three girls and a grandmother of two.  I turn 52 in January.  Some of you may find that too young to be a grandmother, but I am lucky I can actually  run with my grandchildren.  I have a few gray hair in my head.  I haven’t decided if I will dye my hair when I have more then 10 or leave it alone.  I love how mixed gray looks on other people so I can’t wait to see myself like this one day.  I am the face of direct-care workers.

In 2003,  I lost my job with HUD.  I always had been gainfully employed so healthcare was never a question.  Cobra was offered to me but the cost once unemployed was out of the question.   Around the time I lost my job,  I started helping my youngest daughter and her friends when they needed care for their children, and before long I was running a day care center from my home. I loved working at home because I could now help my own mother, who is physically disabled.    

Then taking care of my mother became my full time job. I am paid to give complete care for my mother through the Delaware County Services for the Aging. 

I love caring for and helping people.  I honestly think I am great at it.  But I have recently begun to think maybe, for my own welfare, I should go out and seek other employment because I need health care.  I can’t go to the doctor when I need to, and I am worried if I get sick or hurt that no one will be there to take care of my mother and my children. 

Health insurance would cost me $450 dollars a month.  I am not making enough money to afford anything even close to that. I am torn between getting a job outside of my house to get health insurance and staying home to take care of my mother, who needs me. I do not want to put my mother into a nursing home. She wants to stay at home where she is comfortable; where she has lived for so many years.

 I never thought I would have to choose between my own health and the health of my loved ones.

Melva Williams
Home Care Aide
Media, PA

I am a home care aide in New York City and earn $8.80 per hour. I have health insurance through my job. Having health insurance makes me feel good. I am physically able to take care of my clients. If I didn’t, I would not be able to go to the doctor and would have to go to work even when I am sick.

Even though I have insurance, I have trouble using it as many doctors don’t accept it. Sometimes I feel like when I take out my health insurance card, many doctors shut the door on me. My children are on Medicaid (Child Health Plus) and I have never had a doctor tell me they don’t take that insurance. I don’t qualify for Medicaid, but I think I would be better off if I did. I hear about a lot of workers complaining about the coverage who also think we’d be better off with Medicaid.

Paula Vereen
Home Care Aide
New York City

I work for Passavant Retirement Assisted Living Facility and get health insurance through my employer. Even though I have health insurance, it doesn’t cover my medical needs.

 My doctor would like me to have blood work done because of the medications I take.  I refuse to this because my insurance doesn’t cover those tests and my out of pocket expenses would be too high. I make $15 dollars an hour, and pay $50 dollars a week for my health insurance.  In the past, when I have gotten tests done, I have had to pay a lot out of my own pocket.  It cost me $125 dollars, and if I did that every 3 months, it would be costing me $500 dollars a year. It took me 3 months to pay off that $125, and by the time I paid it off, it was time for another test that I could not afford.

We need more direct care workers that are willing to speak out about their issues with health insurance so that our legislators and the media are more aware of these problems.

Pat Downing
Direct Care Worker
Prospect, PA

In October, the Philadelphia Inquirer covered the story of Karen Goroncy, a direct care worker who goes without health care coverage as she cares for those who need her help.  In a follow up story last week, the Inquirer reported that a generous reader has offered to cover Karen’s costs of health insurance so that she can get the surgery she needs.

“I realize how lucky I am to have the generous support of someone who was moved by my story in the paper.  However, it only makes me think about all of the other of thousands of direct care workers who go without coverage everyday as they take care of clients who need their help.  Generosity is wonderful and I am grateful, but it is not a health care system any of us can depend on.  We need health care reform in Pennsylvania so all direct care workers can have health care.”

Karen represents thousands of direct care workers who cannot afford private insurance and whose employers do not offer insurance do to the high cost of coverage. The PA HCHCW campaign is working hard to make health insurance an option through policy and advocacy. To join the Pennsylvania campaign, email Tracy Lawless, the PA State Campaign Coordinator, at tlawless@phinational.org.

Allison Lee
National Campaign Manager
HCHCW
alee@phinational.org

A testimonial by Eunice Spooner, a home care consumer in Sidney, Maine:

My name is Eunice Spooner, I’m a member of First Congregational Church in Waterville, and I live in Sidney. I was a school teacher until a car crash left me a quadriplegic and confined to a wheelchair over 20 years ago. Since then, I have had many blessings in my life – wonderful family, friends, and caregivers, the chance to be a deacon at church, a volunteer at the Atwood Elementary School, and a member of the SAD #47 School Board. Still, the fact is that I cannot get through my day without a lot of assistance throughout the day, from getting up, doing light housework, driving to appointments, going me to bed and even using the bathroom.

Through the Home Based Care program administered by Alpha-One, I am eligible for 30 hours of daytime home care a week, and 7 hours of nighttime care. I am responsible for finding, hiring, and training the workers to take care of me. After a co-payment I do qualify for some assistance but cannot offer health insurance or other benefits, which makes it quite a challenge to find and keep qualified, professional caregivers. After several months of searching, I was lucky to find some highly dedicated women who take wonderful care of me.

Still, it breaks my heart to see the challenges they face to stay in this field – working long hours at second jobs and forgoing needed medical care because they can’t get insurance. I appreciate their sacrifice, but I know that at any moment they could experience a setback that would require them to look for work with better pay and benefits. This is a constant worry to me, because I know how difficult it would be to replace them.

To be able to offer my home care workers health insurance would make such a huge difference. The challenge to find and retain good applicants, who provide the best care and make it possible to live at home as opposed to a more expensive nursing home, would be greatly lessened for me and many others.

Mostly, though, it would give me peace of mind to know that the people who go above and beyond to take care of me every day, can also care for themselves now and care will be there when they need it. The school teacher in me knows that is only fair.

I am my husband’s caregiver.   He suffered from a debilitating stroke 10 years ago when he was 61 years old.  My full time job is to take care of my husband, and because of the failing economy, the state’s ability to pay my wages is now in jeopardy.  What I get from the state pays for my bills, and leaves little extra for anything else.

I have Ladies First. Ladies First is a state program that covers mammograms at a discounted price, on an annual basis. I qualify for that because of my income, and because I don’t have any other health insurance.

I cannot afford health insurance on private market.  It cost me $700 a month at first for a COBRA plan, but my husband’s medical bills were costing me $1000 a month.  That was seven years ago.  I tried a health discount program, from $40 to $60 a month, but doctors didn’t even acknowledge it. I also tried People’s Life health Insurance for $8 a month, but it didn’t cover dental or medical coverage.

In regards to Catamount (which is a privately run, state sponsored subsidized health insurance program for low income individuals), believe I do qualify for that program; however I’m not sure I can afford it at this time.   I also have two pre-existing conditions and those conditions are the only reason I seek health care.  Due to those pre-existing conditions, if I got Catamount, I think I would have to pay for it for several months before I could use which doesn’t seem fair or a good use of money.

I have been lucky that I haven’t gotten very sick and have been able to continue to take care of my husband. I am very very careful that I do not get sick, and have taken extra consideration into everything I do. For example, I recently fell off the roof while doing some work on it, hurt my legs, and took care of myself the best I could while taking care of  my husband’s needs.

In my previous life, my husband was an engineer and I was a design draftsman.  We both had incredible health insurance our entire life.  Once my husband has his stroke all that changed. I think that everyone should have a small tax that goes towards paying for everyone’s health insurance.  Everyone needs to take care of everyone else, because you never know what can happen, how you life can change, and when it will be you who’s reaching out for help.

Linda Holden, Direct Care Worker
Vermont

I have worked in long-term care for 15 years as a nurse aide, RN Supervisor and currently as a Nursing Training and Education Coordinator.  In my current position, obtaining and retaining nurse aids as employees is my biggest challenge.

Part of this challenge involves asking nurse aides to do the mentally and physically challenging tasks for the same wages as the Wal-Mart greeter and with no health care benefits.  From personal experience, working as an aide, the tasks of bathing, feeding, and caring for the elderly is physically taxing and the emotional sacrifices we make are high.  Most direct care workers do this work because we love to care for the elderly regardless of the difficulty of the work.

The growing elderly population and the shrinking staff will continue to affect long-term care until facilities receive more funds.  I am concerned about the low reimbursement rates for Medicaid residents in long term care facilities.  Increasing Medicaid reimbursement for residents in long term care facilities will allow these facilities to provide the much needed health insurance for the direct care workers that they employ. Providing health insurance will in turn retain more employees.  I believe this is something that needs to happen now in order to avoid major economic problems in the near future.

Latrisha Cowan
Reynoldsville, PA

I have been a RN supervisor at a long term care facility for which I have worked for 17 years.  I am currently taking classes for RN to MSN with the hopes of finally reaching my goal of becoming a nurse practitioner.  I have watched many changes over the last 17 years in the healthcare field; some good and unfortunately some bad.

The worst is the inability to obtain and retain nurse aids.  The constant turnover of staff is a snow ball effect from many issues. One issue, however, truly stands out to me:  Direct care workers lack of health insurance. Direct Care Workers endure much more than the average lay person could ever imagine in an eight hour day.  Direct care workers are born compassionate people who are angels in disguise.  It is that compassion that makes us stay in the health care field.  Most of these workers could go to Sheetz or Wal-mart and make the same amount of money and have health insurance coverage.  But they don’t, they choose to stay because they care.  We as a society, we as a state, and we as a community need to take action to retain these angels in disguise.

The ever growing elderly population needs direct care workers.  The issues need to be dealt with soon before there are no more direct care workers.  I believe that providing direct care workers with affordable and accessible health insurance is a start to solving the direct care worker crisis.

Amy Fenstermaker, RN Supervisor
New Bethlehem, PA

I lost my health insurance when I decided to enter my current position as a home-health aide. I have been working in the home-health field for about two years now, yet I do not have any health coverage for myself. Unfortunately in this line of work, my wages are low and it is not possible to afford private coverage. I knew I was taking a chance but there are so many elders and disabled out there who need assistance.

Unfortunately, the time has come where I might possibly need to find a job that offers health benefits. I love my job and do it for the consumers I take care of, regardless of the low wages and lack of benefits. However, I am in desperate need of having my wisdom teeth removed but I simply cannot afford to pay for this procedure on my own. I am not the only one who is faced with this dilemma. Many of us who work in the home-health field are facing the difficult decision of whether or not to keep working without health coverage or find a better position that would offer health benefits. Giving direct care workers health insurance definitely would not only benefit the workers, but would also benefit the elderly population in our state that needs in-home care.

Melissa Prosper
Branchdale, PA

An October 6, 2008 story from The Philadelphia Inquirer examines the challenges faced by a Pennsylvania home health aide who lacks health coverage. Read a snippet below and then follow the link to the full article:

A caregiver is denied medical care

The cruel irony of her life is that she cheerfully gives others what she needs – and cannot afford.

By Michael Vitez
Inquirer Staff Writer

WASHINGTON, Pa. – Karen Goroncy, a home health aide, comes to Larry Smith’s small apartment three times a day.

She bathes and dresses him in the morning, prepares his breakfast and helps him into his wheelchair. Smith, 28, who has cerebral palsy, does data entry for a nearby doctor’s office from 9 to 1.

Goroncy returns to make Smith lunch, and again at night to put him to bed.

“Without Shorty,” says Smith, using one of his nicknames for her, “I’d be stuck in bed. I couldn’t work.”

Goroncy, who earns $10.30 an hour, has a hernia from lifting clients like Smith for 25 years. She is 51.

She describes the pain as “a knife sticking in your stomach.” Her doctor wants it repaired immediately. But she does nothing about it.

She says she can’t afford to.

She has no health insurance.

Read the rest of this story at The Philadelphia Inquirer

Related Resources

• Invisible Care Gap: Caregivers Without Coverage - Report shows high rates of injury, inadequate health coverage may result in caregiver shortage.
• The Cost of Frontline Turnover in Long-Term Care (pdf) – Studies show that turnover rates fall when workers receive health insurance benefits. In fact, the provision of health insurance may be more important than wages in reducing turnover.

A testimonial by Helen Hanson, a home care worker in Maine.

I am Helen Hanson, a direct-care worker with Home Care for Maine. I have been working at my home care job for five years. I help keep elderly folk living in their homes. I help them with grocery shopping, taking them to medical appointments, to the bank, getting errands done. I help them keep their homes clean and tidy. I also help them with personal care like bathing and dressing.

They look forward to my visits every week. I look forward to seeing them too. I enjoy their company and I enjoy this job.

As a direct-care worker, I do not make tons of money. There’s no paid sick time, paid vacations, or paid holidays. Most important, there’s no health insurance.

When I took this job, I had health care coverage through my husband. Circumstances changed, and we now buy our own catastrophic coverage. It doesn’t pay much and is very expensive — $300 per month, with a $10,000 annual deductible per family member. The way I see it, we won’t lose our home if one of us should become very sick. We won’t have to file bankruptcy to pay our medical bills.

I’ve lived with the threat of cancer all my life.

I am now 43, just a bit older than my mom was when she died of breast cancer. Since November 2007, I have had three abdominal ultrasounds and my annual mammogram – all screenings to detect cancer. The cost of these screenings plus the doctors’ consultations and visits is over $3,000. All of this is out-of-pocket cost to me.

I am very healthy and grateful that I’m so far cancer free. If one of my doctors should tell me that I have cancer, I will have to leave this job in search of one with health insurance. That would mean that the three consumers I have would be out of a worker until another worker could be found – if one would be found at all.

If I was in the position I’m in now back when I took this job, I would not have been able to take it. What keeps me at it is the fact that I’m helping someone in need. There’s something to be said for that. I enjoy what I do a lot. It is more than cleaning for someone; it is the satisfaction of knowing I’m making a difference for them.

But Maine’s direct-care workers need health insurance. Our disabled and elderly folk rely on the quality care that direct-care workers provide. As the number of folks needing assistance increases, where are the workers coming from? Right now, people needing assistance are on waiting lists.

Why is there a shortage of workers? Why is there such a turnover in workers? Low pay and no health care insurance are part of the answer.

If better wages and health insurance were in the picture, maybe direct-care workers would or could afford to stay at their jobs. Maybe younger people looking into the health care field would think about direct care as an opportunity.

It is hard on low wages to pay for the things you need, such as oil to heat your home, food to feed your family, and routine check-ups and yearly medical exams to help keep you healthy.

I know there’s a lot of work ahead in order to obtain health insurance for direct-care workers. I come before you today in an effort to educate you on this very important issue.

Thank you for listening to my story.

Helen has shared her story many times, including testifying in front of Maine’s Insurance and Financial Services Committee in support of LD 1687 this past winter.  She is also an active member of the workgroup convened this summer by the Maine Superintendent of Insurance to address health care coverage for direct-care workers.

Helen is also president of Local 771 of the Maine State Employees Association’s direct-care worker union, representing 1,700 fellow direct-care workers.

The blog she maintainsfor the union has a strong focus on healthcare for health care workers.

Mai Duong, 53, came to the United States from Vietnam 18 years ago. Soon after she arrived, she started working in a gift shop. Then her mother suffered a stroke that left her housebound and Mai left her job to become her mother’s caretaker, in accordance with Vietnamese tradition.

After leaving her job, Mai was eligible for some cash benefits and health coverage through Pennsylvania’s welfare system. For over ten years, mother and daughter lived quietly on subsistence in a one-floor apartment on Old York Road. Mai helps her mother with daily activities like bathing, prepares her meals, and takes her to her many doctors’ appointments. She also collaborates with her mother’s doctors on things like coordinating her mother’s pacemaker with the telephone so her doctors can monitor her health via the Internet.

But Mai had health problems of her own. In July 2007, she began a three- to five-year course of shots intended to cure the allergies that were often leaving her hoarse, short of breath, and congested.

Shortly after she started her shots, Mai enrolled her mother in a long-term care program that contracted with an agency to provide in-home support. Instead of sending an aide to their home, the agency decided to reimburse Mai for the care she was already providing so well, paying her $576 every two weeks.

Ironically, becoming formally recognized as her mother’s health care aide was bad for Mai’s own health. When she reported this new income to the Department of Welfare, her medical benefits were abruptly discontinued.

Unable to afford to continue her allergy shots, Mai is again suffering from chronic rhinitis. She is appealing the decision, saying that her only wish is for good health – because her mother’s well being is contingent on her own.

A testimonial by Brenda N., a hospice nurse aide in Pennsylvania:

I have health insurance; I wouldn’t work for anyplace that didn’t offer it. But my out-of pocket costs are very, very high and rising. I contribute $65 every two weeks, plus $20 co-pays, a percentage of prescriptions, and a yearly deductible of $400. All of these costs are about to go up, but my pay isn’t going up.

My hourly rate is $12 per hour, but after my health insurance expenses, I’m at the poverty level. After I pay my bills, I have only five to ten dollars left per month. I have to work a second job to make ends meet.

A testimonial by Cheryl D., a home care consumer in Pennsylvania:

At the age of 14, a cardiac arrest left my son Renzo with a severe anoxic brain injury. For the last seven years, he has been completely dependent on the help of direct-care workers. I pay at the higher end of the wage scale ($10.50 – $15 per hour), but I can’t afford health benefits for his workers.

Over the years, Renzo has seen more than 40 workers come and go. His short-term memory is challenged. It’s not until he has had somebody for two to three months that he can remember their name. And it takes workers at least a month to understand his patterns of speech.

For every aide that comes in, I am the trainer. I have to teach them how to help him eat through a straw, how to manage his toileting needs, and how to help him therapeutically regain limited skills. He has never really learned to use the augmentative communication device because he has not had a consistent person to work with him long enough.

His staff is wonderful but I know that at any moment I may have to drop everything to train another person or do it myself. I believe that with health care, retention would increase and the quality of workers would improve.

Our fear always is what happens when my husband and I die. I need really good staff who can carry on. If they have quality jobs with good pay and benefits, the likelihood of them staying in his life, not just as workers, but as human beings who are intimately involved with his well being, is much stronger.

A testimonial by Lori M., a home care agency executive director from Pennsylvania:

The first time I tried offering health insurance to retain some of our workers, it didn’t work.

We went through a cafeteria style policy. The price depended on age, medical condition and what they chose to have as coverage. I don’t know what coverage they took. I paid $1.15 of the premiums cost for every hour worked per month, plus the $120 sign-up fee.

Most of our employees were already covered through a spouse or the state Medicaid program. Only eight expressed an interest. Of those, two were not eligible because of ‘pre-existing conditions.’ They were both being treated for depression. Some decided not to take the insurance, or dropped it after a few months, because it was too expensive. Two of them left to work at SNFs that offered affordable insurance.

At that time, we had 30 or 35 employees. Now we have 65. Sixty-three of them are home care aides. I switched plans, and now I offer insurance to all my full-time workers. They pay $50 a month and I pay the rest. They also pay $500 of the co-pay, and I pay the other $500.

Most of my employees are not eligible because they’re part-time, and most of the full-time workers don’t take the insurance because of the high deductibles and co-pays. I wouldn’t be able to provide insurance if all my employees took it.

It’s important for me to provide coverage because we have some great employees I hope to keep. I’m constantly having to hire new workers, and I’m often short staffed because the turnover rate is so high. If my workers could get on a subsidized insurance plan with no co-pays or deductibles, I believe I’d have much happier workers and a much higher retention rate. I’m frustrated because I can’t afford an insurance plan that is sufficient to cover their basic needs.

A testimonial by Joan D., a home care agency owner in Maine:

I know that providing health insurance would help me retain workers. One of my full-time aides who needed coverage prompted my search for insurance by letting me know she would have to seek employment elsewhere if I was unable to offer it in the near future.

The instability of hours is the biggest challenge for direct care workers: if I don’t have work for them, I can’t afford to pay their health insurance. What we really need in this industry is to make health benefits portable, so they can move with them as they move from agency to agency.

A testimonial from Tina, a home care worker in Maine:

My name is Tina, and I provide home based care for Eunice from 10 at night until 7 in the morning. Then, from 8 in the morning to 1 in the afternoon I go to my other job at a developmental disability agency in town.

I’m married, with two grown daughters – one in the Army, and one in Connecticut. I had a lot of experience caring for developmentally disabled people in agency settings, and I have taken care of family members at home, but this is the first time I’ve done professional home care. I just saw Eunice’s ad in the paper, answered it, and we really hit it off.

Eunice is unique – just wonderful, and a good employer. She’s independent, and does a lot for herself, but there are certain things she just can’t do, and I enjoy helping her. I’m glad to help her stay in her own home, and not have to go to a nursing home.

I’ve been interested in caring for others from a very young age. In school, when somebody was getting picked on, I would stick up for her. I guess I’ve always been a bit of a mother hen!

Recently, though, I’ve had to worry about myself, too. There’s a history of diabetes in women in my family, and lately I’ve been having all the signs – unquenchable thirst, frequent bathroom breaks, dizziness, and sleeplessness. My mother gave me a monitor for my sugar levels and I’ve tested as high as 420 – you can go into a coma at 500. Eunice called the diabetes clinic for me, and they told me to go to the ER. But I can’t afford to do that.

I took my second job because I thought I could get health insurance, but you need to work 26 hours a week to be eligible and they will only give me 25. For $400 a month I got added onto my husband’s plan, but the deductible is $2,500, so I still can’t afford to get the care and medications I need to take care of this. I’m between a rock and a hard place here.

I heard there may be a full time opening at the other agency that would have health insurance. I’m tired now. I can only imagine how I’m going to feel working two full time jobs. I’d like to make it work – I don’t want to give up working for Eunice, because she relies on me, and I have a conscience. But I also don’t want to end up in a coma, or dead. If I don’t take care of myself, I’m no good to anybody.

A testimonial from Iya’Negra L., a certified nursing assistant in Maine:

I am a certified nurse aide who has worked in several different nursing homes. In 2004, I had health insurance coverage for six months, which covered my three girls and me. It cost $174 per pay period, but this became too expensive for me. After rent and all of the other basic household expenses I wasn’t making ends meet. So I dropped the health insurance.

A week later I was kicked in the abdomen by an Alzheimer’s resident. I started having complications from the kick. I had constant bleeding and intense pain, and I was getting sick at work. A doctor told me I had fast-growing fibroid tumors. He said I needed surgery immediately and that it would cost $15,000, but I had no way to pay.

My employer said there was nothing they could do because I dropped my health insurance. I applied for Medicaid but was told that I didn’t qualify because I was a working person. I was ineligible for any type of medical assistance, so I didn’t have the surgery at that time. This led to a series of difficult health problems, which kept me away from work for many weeks and put a huge strain on my family.

A testimonial from Karen B., a home care agency manager in Michigan:

I am a manager for a home-care agency with between 150 and 200 employees. I feel caught between a rock and a hard spot because I have so many employees and so little profit margin. There is no way I can afford to offer health benefits. It’s a horrible place to be in. If anybody in my family were to get sick, we have insurance, but my workers don’t.

Ninety percent of our clients are private pay. The problem is that the average person isn’t able to pay the amount that I would have to charge to provide health benefits or higher wages. There is a policy out now that costs $56 dollars per month per employee– it’s a group of hospitals that have gotten together to provide health insurance to small businesses. I can’t even afford that.

Recently I found out about an insurance broker who was offering to work with uninsured people to get them health benefits at minimal cost. I talked him about my employees, and then I encouraged my employees to call him. But he wouldn’t return their calls. Later he told me my people were ‘high-risk’ and he wouldn’t cover them.

If there was a mandate tomorrow that I had to provide health insurance, I would have to close my doors. I don’t know what the answer is, but I think it is imperative that we work together to do something.

A testimonial from Eric T., a home care consumer in Michigan:

I’ve had over 300 direct-care workers in the last seven years. None of them have had health insurance from their work. They may have had it through their spouse, but this was very few of them.

I’ve had a couple workers for five to seven years, but mostly they stay around 18 months. Sometimes I only see a worker one time and then they (the agency) send a different person the next day. I get fill-in staff a lot.

I think workers would stay longer in the job if they had health insurance. It would mean less stress for them, it would make them believe in their job more and help them get something out of it. My workers do a lot of lifting and other physical work. The heavy work they put in now will catch up with their bodies in the future. They need to have a healthy life and be able to take care of their families.

They’re taking care of people who get care through Medicaid but they can’t get insurance themselves. The state’s Medicaid dollars are used to take care of people who need long-term care, so the same funds should be used to cover the workers providing the care.

The following testimony was given by certified nursing assistant Cindy R. at a press conference held at the Iowa state capitol. She added the postscript ten months later, after her husband passed away.

Good morning all! I’m a direct-care worker and a member of the Iowa Caregiver’s Advisory Council. I have come here this morning to educate and be educated, so that we can all work together to improve the health care system for the direct-care workers and those that they assist or care for.

One of the issues we are working to change is health benefits for direct-care workers. That’s why I’m here to tell you my story.

About seven years ago my husband found out he was diabetic. He works for a small construction company that offered no insurance benefits at that time and our incomes did not amount to enough that we could afford to buy coverage on our own, so we continued to be without.

Then about four years ago my husband had a heart attack and ended up having to have a stent put in an artery to his heart. The subsequent hospital bills amounted to $33,000. We struggled to find a way to pay this debt, but what made it even more difficult was the fact that my husband now needed to take more medications also, which all told amounted to about $300 a month.

We ended up filing bankruptcy. After this happened, I decided that I needed to take out some major medical coverage through my employer to cover me and my husband. I would have to pay over $400 per month for a plan that would not even cover him for the first year because of his pre-existing conditions. We could not afford this, so I joined the plan for just myself.

About one year later our employer tells us that they can no longer afford to carry this coverage for us, but would offer a supplemental plan that at least would cover some doctor visits and the like. I myself did not have any claims this past year, but many of my co-workers did and had a difficult time getting their bills paid. Our employer cancelled this plan at the end of the year and we have been given the choice to join a new supplemental plan, which they hope will have better coverage. We shall see, but it still does not cover our major medical needs if we have to have a serious stay in the hospital.

My whole point is, it’s unfair that my fellow direct-care workers and I should have to go through this to have good affordable health coverage for ourselves and our families, just because we like the job we do: giving good care to others who need it. We must find an answer to this problem in order to keep the good staff we have caring for those who need it, and also to make our profession more desirable for others who would like to come into doing direct care. This is a big issue because the need for good and caring staff is going to continue to increase as the “baby boomer” generation starts requiring care themselves.

Thank you for listening to my story. I hope you will join us in trying to solve this problem.

Postscript:

When my husband died I was left with over $13,000 worth of bills. I don’t know how I’ll pay those bills. I’m trying to work with the hospital here and I’m not sure how I’ll do it. I may qualify for financial assistance but I’ll still have to pay a portion of the debt.

It’s hard enough dealing with this and going from two incomes that weren’t great to one income. I’ve got a long road ahead of me, and I’m trying to hang onto my home. My youngest son still lives here and is helping me, but it’s a struggle.

My main goal since getting involved with Iowa CareGivers has been to help other direct-care staff. It’s not right that health care workers don’t have better coverage than that.