Living Out Loud: : Lip Service

Holes in the social safety net

She had 17 letters and a hyphen in her last name and apparently no hands with which to pick up the phone.

Not once did the caseworker assigned to my case at the Hamilton County Department of Jobs and Family Services (JFS) return my calls in the year that I was her client, so I had to re-file the paperwork necessary to sustain my life on Social Security Disability, the State of Ohio's Medicaid card.

This began my journey through an amazing tangle of red tape stretching from Cincinnati all the way to Columbus and back.

The Medicaid program requires no small amount of strife from its clients, who have suffered or are suffering, especially if they collect disability benefits. Once in the system, trying to obtain a monthly Medicaid card can be close to impossible. The procedure of qualifying for Medicaid must be repeated every month. It often goes something like this:

THURSDAY — I qualified for the monthly Medicaid card yesterday, the middle of the month. I call my caseworker at Jobs and Family Services and her supervisor as well, leaving a message informing them that my paperwork is being faxed to them by Central Community Health Board (CCHB), another socialmedical service agency. I will be out of medication tomorrow. I need to be "in the computer" to get my medicine.

Later in the day I call my caseworker at CCHB to confirm that my paperwork has, indeed, been faxed. She answers in the affirmative, with assurance that I should be "in the computer" in 24 hours.

FRIDAY I again call my caseworker at JFS. She is pleasant but seemingly unconcerned about my Medicaid card. She offers no assistance or reassurance when she relays to me that she doesn't have my paperwork, which supposedly has been faxed to her. In the afternoon I walk to the bus stop and catch the bus to JFS, hoping that a real, live, intheflesh person can solve my predicament.

I have one day of medication left.

A worker from the consumer complaint department meets with me and together we call my caseworker at CCHB. She says she will have my paperwork refaxed to JFS. We wait, and, like a watched pot, nothing happens.

I leave to catch the bus home with a promise from the complaint department worker that, when the fax arrives, she will take it to my caseworker there at JFS, who is the person who verifies my qualifications for Medicaid before passing it on to her supervisor. She promises to call when this task is done, but now it is too late in the day to get anything done.

The weekend brings with it a holiday as well, so I am facing another three days, at least, without my medication.

Discontent and agitated now, with no medication, trying to cope with the stress that exacerbates my condition, I call and leave a message for a supervisor at JFS on Friday evening. I also call the Medicaid hotline and I am told that a pharmaceutical provider named First Health can assist in obtaining medication on the weekend.

"How can I prevent this from happening again?" I ask the man at the hotline, explaining the situation to him.

"I don't know," he says. "Half of the caseworkers have a mind of their own. The other half don't do their jobs at all."

SATURDAY — I call First Health for medication but they are closed on weekends.

MONDAY — It's a holiday. It has now been three days since I ran out of medication. JFS offices remain open. I call and leave a message for my caseworker and for the supervisor I had called on Friday, whose voice mailbox is now full.

Feeling helpless unless I am doing something to alleviate the situation, I call the Elderly Abuse department of CCHB. I am on Medicare, which qualifies me as "old," I think, and being unable to obtain prescribed medications because my paperwork is tied up in red tape somewhere in the system surely qualifies as some kind of abuse.

The man answering the phone connects me to my caseworker's supervisor, because my caseworker has left on vacation. Her tone makes me feel apologetic for calling, and she seems nonchalant about my situation.

In what seems an afterthought she says, "Let me check her mailbox," and sure enough, there is my paperwork, qualifying me for Medicaid.

The worker from the complaint department didn't deliver the paperwork to my caseworker when it was faxed to her a second time, but rather placed it in her mailbox, which my caseworker neglected to check before she left on vacation. The supervisor proceeds to put me "in the computer" while we are on the phone together and says I will be able to obtain my medication tomorrow.

TUESDAY — I call my pharmacy but I still am not in the computer. Once again I walk to the bus stop and catch a bus to the JFS offices. I wait for some time, then meet with my caseworker's supervisor and a supervisor from the complaint department. They determine that because yesterday was a holiday, the state computers were unavailable. I could not be entered "into the computer."

WEDNESDAY — I am finally in the computer and am able to obtain my medication, seven days later than I should have. I've gone almost a week without medication. I am frazzled and feeling ill.

It is nearing the end of the month and I have only a narrow window of time to obtain medication, have blood work drawn or Xrays taken before the whole process begins again on the first day of the month.

Welcome to the world of living on disability, and, as regular as the lunar cycle, the problematic "spend-down." It's a term familiar to certain persons in society: pharmacists, doctors, social workers and poor, sick people. It's the monthly process whereby the state of Ohio takes money away from those who receive federal money from Social Security Disability.

Brother, can you spare a dime?
Anyone can join the ranks of the disabled. It might only take a moment for one's seemingly normal life to dramatically change for the worse, in matters of both health and finance.

Before becoming ill, I worked for 30 years in the health care profession, 25 of them as a registered nurse. For most of us, loss of health means loss of work, which means loss of income. The Cincinnati Post, in a report by Lee Bowman of Scripps Howard News Service on Feb. 2, 2005, cites medical bills and serious illness as the reason for "about half of all household bankruptcies." The article quotes an associate professor at Harvard Medical School, Dr. David Himmelstein: "Our study is frightening. Unless you're Bill Gates, you're just one serious illness away from bankruptcy. Too often, private health insurance is an umbrella that just melts in the rain."

Researchers also found that "families were bankrupted by medical expenses well below the catastrophic thresholds of high deductible plans," the Post reports. It's a culture shock to go from living on a professional's salary to a disability recipient's budget. For those who have worked, income received from Social Security Disability is a lifeline, albeit a fraction of what the incomes used to be.

Which brings us to the problem of the spend-down.

The state of Ohio (and other states as well) penalizes workers who have held respectably wellpaying jobs by taking away any money over the amount set by state poverty guidelines for households each month. Current guidelines published online report that amount for an individual in a oneperson household to be $504 a month and $846 a month for a couple. Anything over that amount must be paid out before a medical (Medicaid) card will be issued.

Spend-downs range from $1 for a single household to $1,500 or more per month for a couple, depending on how much each person earned when they worked. Only then are recipients able to get their medicine, go to the lab, get Xrays and any of myriad treatments that might have been prescribed by their doctors.

A Social Security Disability income of $800 carries with it a spend-down amount of about $300, leaving a recipient with about $500 for a month, out of which must come rent, utilities, phone and transportation. That leaves the recipient with just about zero money as soon as the disability check arrives.

Recipients of Social Security Disability must spend down their monthly benefit payment to the poverty line set by the state (an amount lower than the federal poverty line) before receiving medications and treatment. It's quite possible to collect disability benefits and be denied medical care. The disability program is managed under the state welfare system, even though money received in the form of disability payments has actually been earned by the payee. If the spend-down is not met for the month, or if red tape has it lost in the system, it's just too bad for the recipient. No medications, no treatment for that month.

Spend-downs may be met by purchasing the spend-down's amount in medication, an outof pocket expense, as are the services of seeingeye or companion dogs. Medical equipment also qualifies as an expense that counts toward the spend-down amount, as do nutritional supplements and some overthecountermedications, submitted with a doctor's prescription.

The spend-down amount may also be incurred (rather than spending outofpocket) by some health-related services such as adult day care and counseling services, but more and more social, physical and mental health agencies are unwilling to participate in the spend-down process. To participate entails a large amount of paperwork, handled by many noncommunicating workers.

A caseworker confided anonymously that the amount of work required to meet spend-downs isn't worth what Medicaid pays them to perform the service. The process is difficult for everyone involved, from caseworkers to pharmacists to those whom most agencies seem to forget — the clients themselves.

The trouble with workers
Recipients of spend-downs become clients of the Hamilton County Department of Jobs and Family Services, located on the fringes of downtown on Central Parkway. According to their job description, caseworkers at JFS should possess good writing and verbal skills. Below the supervisory capacity, however, many caseworkers lack the professionalism and communication skills that one acquires during the experience of a higher education. Workers now must have earned an associate's degree, but those workers with at least two years of service with this or another social service agency have been grandfathered in. They have problems dealing with problems, which is precisely what their jobs are about.

Try calling a caseworker on any given day to ask a question or perhaps get a referral. If you're very lucky, she might return your call in a couple days, but most likely you won't hear from her. (I say "her," because I have never had nor heard of a client who had difficulty contacting a male caseworker.)

Talk to any of the numerous clients who stand between the man with the silver hot dog cart on the street and the revolving front doors of the Jobs and Family Services building any weekday and they'll tell you about all the un-returned calls.

In caseworkers' defense, their workload is heavy and turnover of workers is high, but that provides little comfort to those who cannot get their medication and cannot find the person who last saw their spend-down paperwork.

How It works — or doesn't
Clients on spend-downs must monthly turn in to JFS receipts for services and medications purchased on an outofpocket basis to meet the spend-down amount.

If one is incurring expenses through an agency in the community — a mental health agency, for instance— the caseworker at that agency turns the completed spend-down information in to the financial department, where someone faxes the information to JFS. From there it should be given to the client's caseworker at JFS, then on to a supervisor who "releases" the Medicaid card.

Overnight the spend-down is entered into the state computer, and clients are then able to get their medications from pharmacies. This process is supposed to take 24 hours. It often takes nine days, occasionally 11 or 13 days. It then takes several days for a paper Medicaid card to be delivered by mail to the client.

If medical care is needed before the card arrives, medical offices have a phone number to call to find out if a client is covered under this program, although clients often are unaware of this, forgoing treatment, waiting for a card that might not arrive until the last day of the month, at which time it will expire.

Clients waiting for JFS caseworkers to put them "in the computer" encounter a bevy of excuses as to why they can't obtain their medicine in a timely manner: The spend-down paperwork didn't come through the fax, even though a receipt exists showing that it did; the fax machine was unplugged or broken; the fax machine number changed without notice; the caseworker was sick; the caseworker was on vacation; the caseworker couldn't find the client's chart; the counselor at the health center forgot to sign the paperwork and won't return for a week; after several years without it, the agency needs a prescription for items purchased outof-pocket.

Add to this the frequent reassigning of caseworkers to different clients at JFS, and the monthly spend-down process becomes a mishmash of noncommunication.

It's difficult, if not impossible, to plan for and schedule needed medical appointments. I have had to cancel appointments because I am not "in the computer," although plenty of time has elapsed since meeting the spend-down.

Spend-down etiquette
Suffering loss on three basic fronts — health, work and finance — disability clients face these problems that are an affront to their dignity and selfesteem. The situation is made even worse by the nonchalant, negative attitude of many caseworkers, at both Jobs and Family Services and the medical provider, if any, who incurs the expenses to meet the spend-down.

It's difficult to stay cool and collected when you're being denied the medication that keeps you cool and collected. It's difficult to remember, when you're treated condescendingly, that you have earned these benefits — they are not, and should not be, categorized as welfare.

The number one nono in dealing with spend-downs is to act as if meeting the monthly requirements is of prime importance, even though, by Ohio mandate, it becomes just that. There is no way around it meet the spend-down or no medication, no treatment for the month.

Caseworkers at certain agencies become indignant and resentful, thinking that the only reason a client uses their services is to meet the spend-down. This surprised me, as I was unaware that caseworkers could read clients' minds.

The second thing to remember when dealing with the spend-down is that your body is compartmentalized by your health care providers. When I was treating patients as a registered nurse, I could be held accountable if I didn't look at and deal with the patient as a whole being. Specialties were fine, but not separate from the whole. Body and mind work, or do not work, together. This viewpoint has not been carried over to health care providers today.

Mental health providers used to at least be able to come up with medication in case a spend-down was not met (a fact no longer true), ignoring the fact that medication for physical ailments is just as important as mental health medication.

Caseworkers, even doctors do not like to be confronted with the question, "What about my medicine?" Apparently there are two answers to that question: "We're not going to go there" and "Just take half of your medication. Stretch it out." One can only wonder how many people are either going without or are taking only half of their medication, including mental health medication, insulin for diabetics, blood pressure medication for hypertensives or Dilantin for epileptics.

Medically disenfranchised
And the beat goes on, month after month.

Not an insignificant number of disability recipients hesitate, don't followthrough or are unable to cope with the bureaucratic red tape involved in the spend-down process. With state budget cuts, pharmacies report an increase in the number of people on spend-downs. Coupled with the decrease in numbers of agencies willing to participate in the spend-down process, it creates a sad picture, especially for the American worker.

One month I met the spend-down 11 days before the end of the month. I was finally put "in the computer" on the last day of the month, New Years Eve. My doctor was unavailable because of the holiday, so I had to do without the medications needing refills. The holiday weekend ensued and, when the doctor returned the following Monday, the Medicaid card had expired. I needed those refills and so the next month had to purchase my spend-down's amount of $313 in order to obtain my Medicaid card to pay for the rest of my medication, which comes to nearly $1,000 a month.

One month later the agency providing me with spend-down services discovered that the person I am seeing holds a master's degree. Her services must be billed to Medicare, not to Medicaid, effectively cutting off most of my ability to meet my spend-down without spending nearly half of my disability check.

It is possible to collect social security compensation in America and be denied the medications and treatment needed to promote health, independence and a semblance of a normal life, in the community and in society in general.

Medication for medical problems keeps people alive. Medication allows psychiatric patients to live free, rather than in institutions. Think about it the next time you are standing in a crowd of people. You might wonder if everyone took his or her medication today.

Perhaps some have not.

Are you ready?

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