Back Home (Betsy)

November 13, 1992 

            I am Betsy (OíHern) Fenti.  I am 32 years old.  My husband, Frank is 25.  Here is our story of our life together. 

            I have a neuromuscular disease called Spinal Muscular Atrophy (a form of Muscular Dystrophy).  It effects the nerves in the spinal cord that control the voluntary muscles in the entire body. I have had it since birth.  I have never walked but in my early years I was able to use my hands enough to feed myself, write, etc.  However, over time I lost total use of my hands.  All my life, I lived with my mom & dad.  I was sick a lot when I was young so I was unable to attend public school.  So I received home tutoring.  I did very well in my studies and in 1978 I was able to graduate with the rest of my class.  Because I still couldnít tolerate long periods of sitting in my wheelchair, I was not able to attend college.  In 1982, I finally gained my freedom.  I got an electric wheelchair.  With it, for the first time I was able to do some things on my own.  I gained confidence in myself that I didnít know existed.  I took a couple of courses at a local school of nursing to fill my time.  

            Then in 1983, I found what my life was missing.  A friend of mine, Jane Jamison who was a teacher, introduced me to computers.  I took several courses from her on how to use the computer.  I loved it.  Using a homemade wooden mouthstick to type, I was able to do things I hadnít been able to do in years.  I was able to write letters, draw and play games without any help from anybody.  She was even kind enough to let me borrow her own personal computer over weekends & vacations.  At the time, I was receiving a small SSD check off my fatherís Social Security.  I started saving for my own computer.    But I knew it would take years to save enough money to buy my own.  Then that Christmas, Jane called to tell me that a mysterious person had donated a complete Apple //e computer system to me.  Then with the help of OVR & the Hornell Rotary Club, I was able to get some pieces of equipment that I needed to operate the computer more easily. 

            Then Jane introduced me to one her students who was the school hot shot with computers.  She thought we could help each other.  His name was Frank Fenti.  He was only 16.  We hated each other.  I thought he was a know-it-all kid.  He was shy and was intimidated by my disability.  But Jane kept pushing us together.  Slowly over time, we became friends.  In 1987, we finally admitted to each other that we were in love.

             In the months that followed, we went through a lot together.  My mother had a difficult time letting go of her routine of taking care of me.  We had been very close for so many years that she had a hard time adjusting to the fact I didnít need her as much.  Frankís family didnít accept me at all.  They had never been around a person with a disability before.  They were worried that their son would never have a so called ďnormalĒ relationship with me.  But we managed to get through it all, and on July 1, 1989 at St. Ignatius Church we were married in front of our family and friends and God.  It was the most beautiful day of our lives. 

            Before we had gotten married, we had tried to set up an appointment with the Corning Social Security Office.  They said they didnít want to talk with us until we were married.  So on July 17, 1989 we went to talk to them.  We were told at that time I would go off of SSD and switch over to SSI.  They said it would change starting in August.  They also said that I would no longer be eligible for Medicare but I would keep my Medicaid. 

            In August, I received a SSI check but I also received a SSD check as well.  My SSD check was a normal amount but the SSI was considerably lower than what they had told us it would be.  We called Social Security and reported the problem.  We were told then to hold on to the check and not spend it because it was an over payment.  We held on to the money and in September I still received both checks.  This time we went to the Corning Social Security Office and reported it in person.  At that time, we pulled out our checkbook and offer to write them a check for approximately $650, the amount of the two SSD checks.  They refused to take our check.  I was upset because Frank was only working 25 hours a week at his job as a nighttime computer operator at a local bank.  Without my check it was getting harder and harder to pay the bills.  I explained this to the Social Security adviser and he told us if we needed the money, spend it.   The problems continued after that and we eventually had to start spending it.  Finally that fall, my SSD check stopped but my SSI check was still a lot lower than what we were told.  In the meantime, I was getting bills from Medicare even though I had reported that I no longer had Medicare. 

            Times were really tough for us then.  The financial strain was getting to both Frank and me.  We were living in a HUD housing project so the rent was controlled.  But not only the other tenants didnít accept us because of my disability, but the people in the Hornell Housing Authority didnít like us either.  We were different and nobody could accept that.  There were times that we didnít have enough money for food so we charged it to our credit card.  We knew that we were probably eligible for food stamps, but we are both very proud people.  We wanted to make it on our own.  Then in November we called Social Security again.  They told us that we owed them approximately $1200.  By that time, we had gone through all of our savings.  We knew that we had been overpaid some money, but we had tried on numerous occasions to straighten the whole thing out.  I donít even remember how many times we called either the Corning Social Security office or the federal office.  Every time we talked to someone, they told us something different.  Nobody would send us anything in writing.  When we called the Social Security 800 number, they told us that I should be receiving SSD and that they had Frank listed as an adult disabled child.  They kept telling me that I was responsible for any overpayment, but when we pointed out that they had been under paying me on my SSI check, they said it didnít matter.  Thatís when we contacted Mike DeVinney from the Corning AIM Independent Living Center to advocate on our behalf. 

            The whole situation put an incredible strain on our marriage.  We had bills that were piling up and there were things that we needed that we couldnít afford.  One of the things we needed was new tires for our van.  Before we had gotten married, I had taken out a loan to buy a 1985 van.  It was in excellent condition.  We were very proud of it because it was the newest vehicle that either of us had owned.  We knew that we needed tires but because of my income being so unstable, we just couldnít afford them.  On January 20, 1990, we decided to spend the weekend with friends in Horseheads.  We left Hornell around 12:15 P.M.  It was just starting to snow.  The roads were fine until we got to Howard.  Then after we got through Bath, it got very slippery.  We started fishtailing and just when I thought Frank had the van under control, it slid sideways and the front end hit the guardrail on a bridge.  We spun around and hit the front end on the other side of the bridge.  I was really scared and shaken up, but neither of us were hurt.  We got the van out of the snow and drove down the road about a quarter of a mile.  We pulled over to check for damage.  Frank got out and was trying to open the hood when he saw a trooper pull in behind us.  Frank was going around the side of the van to talk to him when a car came spinning down the road.  It had been going too fast.  It had lost control on the ice and was then struck by a tractor trailer.  Frank leaped out of the way because the car struck the back end of our van and knocked it over an embankment with me inside.  All I knew was that my chair was flying over backwards and the my other wheelchair was at my head.  I could hear Frank screaming my name over and over.  I didn't know what had happened.  My head, hand, back and knee hurt very badly.  I was scared.  I had ended up in the back of the van.  My chair that had been fastened into wheel-locks had tipped over.  The bolts in the floor had been ripped out.  There was broken glass everywhere from two fish tanks that we were transporting.  My head had landed less than a foot away from them.  The trooper came down and said that an ambulance was on its way.  They came and put me on a stretcher and put a cervical collar on me and took me to back to St. James Hospital in Hornell.  When we got there, I started to realize how lucky I was.  I had lost my van and both my manual wheelchair and my electric wheelchair but if Frank had not moved to talk to the trooper, our own van would have run over him and killed him.  I know I could never have lived without him.  Physically I wasnít hurt very badly, but emotionally I was devastated.  Now we had no van, no wheelchairs and no money to replace any of them.  I suffered for months without my wheelchairs.  I had lost all of my freedom.  We felt that the accident was a direct result from the mistakes made by the Social Security Office in Corning.       

            After many, many months we started building our life back together.  Social Security finally granted us waiver.  We replaced my wheelchairs and van.  Then in February, Frankís job went full time at last.  We thought that we were finally going to be all right.  Then Social Security said I had been over paid again because Frank was full time.  They began deducting from my SSI check.  We figured out that for every dollar that Frank makes, my check goes down $.50 and our rent goes up $.30.  So we only see about $.20 out of every dollar that Frank earns.  We started realizing that eventually I was going to lose my SSI check, subsequently losing my Medicaid.  If I lost my Medicaid, I would no longer be able to have my Personal Care Aide that stays with me while Frank is at work.  It is unsafe for me to stay alone for long periods of time because if I am not repositioned often, I could develop bedsores and lose my circulation.  We started talking to Social Services about our situation.  Everyone kept telling us not to worry about it until we had to.  We werenít satisfied with that.  We wanted to prepare for our future together.   We kept asking and again we were told many different stories. 

            Finally on November 9, 1992, we went to a seminar at Watson Homestead in Painted Post on SSD & SSI and the PASS Program.  After talking to attorneys James R. Sheldon, Jr. and Edwin J. Lopez-Soto, we know now that we will never get ahead in life.  If I had been the one who was working, I would be able to earn up to $23,000 a year and still keep my benefits.  But because itís my husband who is the one thatís working, we are being punished for trying to better ourselves.  We also found out that if anything should happen to Frank, I am no longer eligible for SSD.  So I will always be living at poverty level.  

            Frank and I have talked with each other at great length about our situation.  We donít want a free ticket in this world.  We enjoy the sense of pride that we feel when we get something we have worked for.  All we want in life is to own our own home and have things we want without having to fight for it every step of the way.  I want Frank to get ahead in his job.  He is very good at what he does.  I donít want to feel that I am holding him back from a future that he so justly deserves.  Itís not fair to either of us.  

            We have been told that there are only a few ways to better our financial life.  1. We should never have gotten married and get a divorce.  Right now our country is striving towards a higher standard of family values.  My husband and I are being crucified for having such values.  We didnít want to live in sin.  We wanted our marriage to be blessed by God.  2. Frank should quit his job and we go on Welfare.  There are already too many people that are living unnecessarily off of public assistance programs.  3. We should have children so my income would be raised.  I thought two people should have a baby because they wanted one.  A baby should never be brought into the world for financial gain. 

             Right now we are at a lose.  There has to be a better way for our country to treat the 40 million people with disabilities.  Arenít they dealing with enough hardships without having to live below the poverty line?  Something must be done.

                         Sincerely, 

                        Betsy & Frank Fenti