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Issue 1


Is your Medicaid agency cutting you off? CMA wants to know





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OASIS and The Bath Aide

By Adrienne Rubin Barhydt

Adrienne Rubin Barhydt is a freelance writer.


When I decided to have surgery to place a suprapubic catheter in my bladder I knew that I would need assistance every morning with many basic functions that the jargon calls ADLs or Activities of Daily Living.

I began to research what resources would be available to me as a Medicare recipient. I have a degree in economics and a master's degree in library science; I've worked as a reference librarian, a computer programmer and systems analyst. With more than 20 years' experience as an information professional, I have the knowledge and background to research things like Medicare regulations. So I did.

I found that under Medicare, I would be able to receive up to a total of 28 hours per week of "skilled nursing, physical and occupational therapy." Due to the fact that I needed a nurse to change my catheter once each month, I learned from the regulations, I was entitled under Medicare to also receive up to 28 hours per week of assistance from a "home health aide," as long as the catheter change was needed.

To end aide shortage, improve pay and status, says Sue Rhodes.

I have multiple sclerosis. What I can do, I do very slowly. I find even the simplest things exhausting. I need assistance with the things that I cannot do, including catheter care, dressing, range of motion exercises, transferring from my bed to my wheelchair and back to bed, preparing food. I need assistance to and from the toilet.

Although the regulations explained what I was entitled to, it was unclear to me how to arrange for these services.

First I phoned the local agency that assists Medicare recipients. Unfortunately, all they were able to do was to read me the same Medicare regulations that I had already found on my own.

After consulting with several of my doctors, I learned that the person to contact was the hospital's discharge planner. When I phoned the hospital and spoke to someone who said that was her role, she assured me that I would be able to get the services I needed, and that they would be able to make all the arrangements during my very brief visit to the hospital for the surgery.

While I was in the hospital, my husband and I met with two women who made the arrangements for my in-home services following my discharge. The agency they set me up with provided a nurse who handled the initial care of the surgical wound, a physical therapist and an occupational therapist. They told me that the agency would only be able to provide me with a home health aide (whom they referred to as a "bath aide") three mornings a week.

When I left the hospital, my husband and I believed that I would receive the services I needed three mornings a week and that we would have to provide for me in some other away for the rest of the week. I did not understand why I could receive the agency's services only three mornings a week when the Medicare regulations clearly allowed 28 hours of total services per week.

When I got home from the hospital and spoke further to the agency, it became less and less clear that they could even really provide the "aide" services I needed.

My husband was able to change his work schedule, though, and he handled my morning routine while we continued to discuss the situation with the agency. Yet in the end -- and it took a large number of phone calls to get to this -- in the end, the agency told us that the only assistance they would be able to provide was someone to give me a bath three times a week -- in the afternoons. This was of no use to me at all.

They stated quite clearly that they were not obligated to provided any more care.

I continued to do research, but could not honestly determine whether their Medicare certification did require them to provide more hours or not.

With the knowledge that I could have all of my Medicare services "transferred," I began calling other agencies. What I began to suspect was that there was no Medicare-certified agency in my geographic area that provided both the skilled nursing I would need once a month under the regulations, and the home health aide I would need daily.

A social worker from the agency I was using came to assist me with finding someone who would be able to provide all the services I needed. He called several of the same agencies that I had called on my own. He used my speakerphone, and I heard all of the discussions. Talking professional to professional, he was able to get information that none of the agencies would give me.

What we learned was that all of the large agencies that in the past had provided both skilled nursing services and home health aides had dropped the home health aide portion of their businesses because of the reporting requirements of the OASIS (Outcome Assessment Information System) and the lack of availability of people willing to work as aides. Although they never said so, I learned later that Medicare reimbursement rates figured largely in the agencies' decisions to drop the home health aide portion of their businesses.

The social worker was told that the smaller agencies that had picked up the business that the larger agencies dropped had all deliberately had themselves "decertified from Medicare." In short, the services that I needed -- and still need, and am entitled to under Medicare regulations -- is simply not available in the Portland, Oregon metropolitan area.

In one last attempt to find what I need, I phoned Medicare's Regional Home Health Intermediary for Oregon. I asked them if they could tell me of any agencies in the area providing skilled nursing and home health aides. They told me that they did not have such information, and I should consult the Yellow Pages of the phone book! Because the Regional Home Health Intermediary pays for home health care provided under Medicare, I find it hard to believe that they did not have the information.

Resigned now to the fact that I would not be able to use Medicare for any of the services I needed, I began calling agencies as a private-pay customer. The next lesson I learned was that almost all agencies have a three- or four-hour minimum for their aide services. I finally found an agency with a two-hour minimum, which is all that I need.

Our weekly cost, using this particular agency, was more than we could afford on a long-term basis; still, we decided to use the agency for one month.

During that time I learned still more. In five weeks I had four different aides, and had to train each one in how to perform my routine needs. In five weeks, I had two occasions on which the aide simply did not show up. Speaking to others since that time, I have learned that this is not an unusual occurrence. I began using a different agency, a nonprofit one; it charges considerably less but still more than is affordable.

It is clear now that the only way the services I need will be affordable over the long term will be for me to hire individuals to work for me directly, rather than hiring through an agency.

I began to research Medicare's reimbursement rates for agency-supplied home health aides. As a result of the Balanced Budget Act of 1997, all Medicare "home health" funding was cut, not just the part pertaining to home health aides.

I learned that the amount paid to an agency was " per visit" -- and that visit could be any length of time. It would make little sense to an agency to allow a worker to work for eight hours, when the agency would get the same reimbursement rate if the "visit" were only one hour. The rate paid is adjusted by some bizarre formula that takes into account location and other factors , but the numbers that popped up in examples seemed to put the rate at $36 to $48 per visit -- clearly not enough for an agency to break even, let alone make a profit on anything more than about an hour, given that they were also charging administrative overhead compounded by the workload of OASIS reporting.

But with $48 I could hire my current attendant on my own and have her for four hours a day.

I can see why the agencies have dropped the home health aide service, and why, in those cases where it is still provided, it is limited to a one-hour visit at the agency's convenience.

Still, I question the legality of this limit.

Medicare is paying to support a bureaucracy of intrusive paperwork and unneeded supervisors, rather than services to Medicare beneficiaries. The agency's reimbursement is not enough to pay for their bureaucratic overhead. Yet that figure is far more than it would cost a beneficiary to hire the aide directly.

Under the current system, Medicare beneficiaries have no control over who provides their services. They get fewer hours than they need. Most of us end up doing all the training of aides ourselves. Many of us simply don't receive the services we need and are entitled to under law -- we either pay for the services ourselves or do without.

One could argue that Medicare should pay agencies an amount large enough for them to afford to provide this service, as they did in the past. Based on my experience and what I have learned from others, though, I now believe this would be a step backwards. Instead of paying to support a useless bureaucracy, it would cost far less to provide the funding directly to beneficiaries for hiring their own attendant services. Independent living centers could be funded to enable them to enhance the work they are already doing in providing both aide referrals and training to clients in hiring and managing their own services.

You might suppose that Medicare certification is a guarantee of the quality of the services received, but from what I've been able to learn, that's simply not the case. Training requirements are minimal, workloads are far too high and turnover is rampant.

No matter the level of skill of the aide I've been sent from any agency, I have had to train each one in the specifics of what I need.

Nothing that I need done is difficult. What is essential is dependability and willingness to follow instructions and learn new routines. I can pay an agency outrageous rates and perhaps get this service; perhaps not. Or I can interview and screen someone myself, pay someone I choose a living wage and do at least as well, if not better, at getting what I need.

The disability rights movement often focuses on Medicaid, but the Medicare aspect of this situation reflects the tip of an iceberg. People on Medicare, people with multiple sclerosis and other disabling conditions who have worked and paid into Social Security, need assistance now -- assistance that can be difficult to find and unaffordable.

And much as they wish to deny it, the baby boomer generation is getting older. Soon many of them will need assistance, too.We need to find a way to make the services we need affordable, and pay the attendant a living wage as well.

I am still using the nonprofit agency two mornings a week. My attendant is excellent. But she tipped me off that the agency is very likely to go out of business in the next few months.

I had another attendant -- one I hired myself -- who came one morning a week and weekends, so my husband could have a break once in awhile. But she moved to Alaska yesterday.

Empowering Service Delivery

Adrienne Barhydt writes, "Instead of paying to support a useless bureaucracy, it would cost far less to provide the funding directly to beneficiaries for hiring their own attendant services. Independent living centers could be funded to enable them to enhance the work they are already doing in providing both aide referrals and training to clients in hiring and managing their own attendant services." That's been proposed before.

In his article, "Empowering Service Delivery" in the September/October, 1998 Ragged Edge, ADAPT's Bob Kafka says, "People with disabilities should take over the pieces of the health care delivery system that for years have controlled our lives. Independent living centers should become delivers of personal attendant services.

If a person with a disability calls up an independent living center today and wants to get out of an institution, what can the majority of them offer? Classes? Information and referral? Peer counseling?

"To begin the process of becoming independent, that person first needs to be able to get out of the institution. Getting someone out of an institutiončor keep someone outčis truly what the independent living movement is about."

Is your Medicare agency cutting you off?

Each year, the Center for Medical Advocacy assists thousands of individuals in appeals of Medicare denials, particularly for home health care.

Staffed by attorneys and paralegals, the Center's advice, written materials and legal services are free to Connecticut residents and are available for a fee to others.

When Ragged Edge was going to press, the Center was looking for Medicare home health beneficiaries "with large supply needs (i.e.,wound care patients) that are being told their home health benefits will be reduced or terminated because they are too costly to serve."

Contact the Center in Connecticut at (860) 456-7790, or in Washington, D.C. at (202) 216-0028, or online at www.medicareadvocacy.org

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