OUR DAUGHTER, Rachael, was born on Aug. 13, 1979, with multiple birth defects. Among her deformities were heart and lung deficiencies, first night of her existence until the end of her 10 1/2 weeks of life, our lives were twisted into a nightmare.
She was transferred from our local hospital to Philadelphia Childen's Hospital only hours after her birth. Doctors there performed emergency surgery, removing 40 percent of her right lung and detaching the liver that was joined to the disfigured pulmonary tissue.
Next they suspected that her heart was deformed and requested our permission to perform a heart catherization, which we granted. It revealed numerous heart defects. Her prognosis was hopeless.
Along with the anguish we felt about our child's condition came money worries. May husband and I couldn't afford medical insurance at the time, and we watched in horror as the hospital and doctor bills mounted, ultimately reaching $100,000.
We visited Rachael every night until we realized that our two sons, Jason and Joshua, were being affected by our absence. We then decided to visit evry other night instead. With the hospital and hours drive away, our gasoline bills tripled. We also had to pay $3.50 every time we parked in the hospital garage. Our boys needed new clothes for the beginning of the school year, and we still had to face the normal expenses of everyday life.
The hospital social worker assigned to our case told us that we were eligible for assistance with our gas and parking bills through a Social Security program called Supplemental Security Income (SSI). More important, if Rachael's disability qualified us for SSI we also would get a Medicaid card, thus a ray of hope for us.
I had always been a flag-waving patriot. My husband, Jim, is a Vietnam veteran. We do not like or want handouts. But the sudden need to cover $100,000 in medical bills for a dying daughter does not fall in the handout category, and under the circumstances I certainly expected to be treated at least with respect when applying for aid. I was in for a rude awakening.
The day I arrived at our local Social Security office I was given a number by the receptionist. After a 1 1/2-hour wait, I was directed toward a desk in the back of a huge room. I sat across from a man in his mid-thirties. I opened my heart, telling him of my family's ordeal.
Without blinking an eye, he began interrogating me with a long list of questions. After giving a detailed account of Rachael's defects and revealing my husband's salary, I was informed that he would "go ask the computer" if we were eligible.
Upon returning, he explained that Jim's income was too high to file a claim. I argued that my husband's $13,000-a-year salary couldn't conceivably deal with the hospital costs. I started to cry. He made me feel ashamed.
The hospital social worker had warned us that, for reasons she couldn't fathom, we might be refused the first time and that we had to insist a claim be filed. My interviewer stated that he would fill out the necessary forms, if I insisted, but that Rachael would still not be eligible for aid.
He asked -- seriously -- if Rachael had ever been convicted of any felonies or if she had been out of the country in the past six months. I told him the questions were ridiculous, that she was a dying newborn. But he said he had to ask the questions.
The last question was, "Where does she live?" When I answered "Children's Hospital," he said that that changed everything: Since she had never come home to live, she wasn't considered our dependent. I couldn't believe my ears.
My interviewer then ran back to ask the computer to reconsider Rachael's eligibility. After 10 minutes, he returned and instructed me to drive, immediately, to the Public Welfare office to apply for a medical card.
I drove to the welfare office, walked inside the building and explained to the receptionists that I was sent by the Social Security office to apply for a medical card through SSI.
I do not intend to cast any aspersion against Spanish-speaking persons, since I myself am of Spanish ancestry, but the receptionist was not all suited for his job. She spoke with a thick accent that I couldn't understand, and she was ignorant of anything pertaining to SSI. She said she would have one of the welfare workers speak with me.
Because I had been away from home longer than I had anticipated, I asked her if I could possibly use the phone that was two inches from my reach. I wanted to ask my neighbor to watch for Jason, who would be returning home from school. She informed me that I would have to find a phone elsewhere. I asked her if I had enough time before my interview. She assured me that I did.
I ran across the street and scurried from store to store in search of a telephone, finally finding one in a laundromat. Since there wasn't a phone book available, I called a friend and her look up my neighbor's number for me. The neighbor promised she would care for Jason.
When I walked back into the welfare office, the receptionist told me that I had missed my appointment and that I would have to return another day. A total of 15 minutes had elapsed. Exasperated, I began to sob. Then, standing in the middle of the room, I tossed into the air the hospital bills that we had accumulating during the past weeks.
The receptionist dialed a number and asked somebody to come down because I was so distraught. After a moment she told to have a seat.
I waited another 45 minutes unitl a stout, blond woman shuffled into the room. She gestured for me to enter an unoccupied office.
I introduced myself and, once again, told about my dying child and the overwhelming medical bills. She asked if I had any pictures of the baby. I showed her a photograph of Rachael. She said, "Oh, she's so beautiful. Are you going to put her up for adoption? My friend has a handicapped child, and what a pain!"
By this time I expected almost anything to happen. If I wasn't numb with disbelief I might have strangled her.
First she said that she couldn't help me until the Social Security office ruled, after examining Rachael's medical records, that she was "sick enough" to have a medical card. Then she told me she wouldn't be able to help me that day anyway, because she "didn't have a pencil or application form."
I was also warned that there was a 90-day time limit on the medical card associated with the Supplemental Security Income. If it took more than 90 days to determine if Rachael's was "sick enough," we would no longer be eligible for the blue medical card. To make matters worse -- if that were possible -- the Social Security office told me Rachael's records would indeed take at least 90 days to be evaluated.
The following weeks were spent on the telephone, day after day, calling Social Security and Public Welfare. Social Security said they couldn't proceed until they received a request from the welfare office. The welfare office said they couldn't send a letter until Rachael's medical records were approved. Astonishing.
Finally, I asked my sister-in-law to come with me to the Social Security office. I wanted proof that I wasn't imagining these things. This time a very attractive young woman spoke with me. She had an incredibly nasty attitude. "My God," I thought, "they're out to get me!"
She said that the Social Security office couldn't go any further on our claim until Public Welfare sent an okay. I could have screamed. I asked her if I would have to go to my congressman to get help. She said, "Go ahead, Mrs. Dulin, but it won't do you any good!" I was infuriated. Finally, she agreed to call Public Welfare to try and straighten things out.
After searching through a pile of books filled with page after page of rules and regulations, she assured us that everything was put right. In the meantinme, Rachael's stomach and bowels ruptured through her navel and had to be surgically placed back inside her body.
I was told by an acquaintance who works for the Public Welfare office that my trouble was that I wanted to have my cake and eat it. She said that I should have opted for a green medical card, which would have provided for partial payment of the bills, instead of the blue medical card to which I was entitled. One reason I refused the green card was that the policy was to put a lien on a person's house if they couldn't pay the money back.
On Oct. 15, Rachael died of heart failure. The next day I called the Social Security office to report her death, and I was told that all paperwork on our claim would be discontinued. I exclaimed that we still had the bills to pay. They told me that they couldn't help.
So I called Public Welfare, and after a lengthy discussion the person on the other end of the line snapped, "We're not paying any burial costs!"
I slammed the phone down. My daughter was going to be buried the following morning, and I couldn't fathom the inhumanity that had been shown to me by fellow human beings.
After the funeral, faced with $100,000 in bills atop unbearable grief, I visited our congressman's office. His staff took up my case. His secretary argued with the Social Security and Public Welfare personnel acquainted with out case, and the phrase, "I wish to speak with your supervisor," became quite frequent. The congressman's staff person said she was shocked at the rudeness of these people. I knew what she meant.
Luckily, in the meantime -- with the help of Children's Hospital -- we were given a grant for aid because Rachael's illness was classified as a catastrophic illness. Under the grant, partial payment was made to the hospital. We are still paying the hospital and the X-ray department, and we will be for some time. We never received a medical card or any form of Supplemental Security Income.
Under tremendous pressure, my husband broke down at our kitchen table one night while composing a letter of complaint to our governor. The letter was never sent. Our ordeal with the bureaucracy left an unforgettable mark on us. We felt the letter couldn't possibly make any difference.
I'm not implying that every person who works for these agencies is incompetent. I'm sure there are many who take their jobs seriously and work hard to help claimants. Unfortunately, I never had the opportunity to meet any of them.