Subcommittee on Criminal Justice, Drug Policy and Human Resources
Committee on Government Reform

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Chairman: Congressman John L. Mica

Submitted by: Linda Mulhauser

September 17, 1999

Chairman Mica and Members of the Government Reform Committee:

Thank you for your invitation to appear at today’s hearing to tell of our family’s experience with the Vaccine Injury Compensation Program. Our son Stephen, now 17 years old, was seriously and permanently injured by a DPT vaccination at three and a half months of age.

Born healthy and full term by natural childbirth, Stephen received the highest Apgar score ratings of 9 and 10. At seven weeks of age, Stephen received his first DPT vaccine. We were reassured by his pediatrician that the swelling at the injection site, among other changes we noted, was only a "mild" reaction and of no concern. Following the pediatrician’s advice that "the benefits outweighed the risks", Stephen was given and reacted severely to his second DPT shot with over nine hours of high pitched screaming and high fever.

During the next couple of days, Stephen’s eyes began wandering independently of each other and then spasm. He could no longer roll over or reach out to play with his crib gym because his hands were fisted and held at his shoulders.

Over our concerns, Stephen was then given his third dose of DPT vaccine in half doses at 5-1/2 and 6-1/2 months of age. His pediatrician said that he must have this vaccine in order to attend school.

We later discovered during our compensation hearing, that from the day of the second shot in 1982, Stephen showed failure to thrive as his charted growth plummeted. Stephen’s brain had all but stopped growing during the time period he was receiving his DPT vaccines. He remains affected with fine motor and gross motor difficulties, posturing, language based learning disabilities, visual perception issues, behavioral problems, and profound bilateral hearing loss. He requires special schooling, assistance with simple daily living skills, constant adult supervision, and numerous therapies.

Having your child injured by a vaccine that’s supposed to protect him is devastating. Our experience of going through the compensation system only added insult to that injury.

After 5 years of preparation for a civil suit, through depositions, ready for trial -- our attorneys informed us that they’d become obligated to advise us to put a ‘stay’ on our case and apply for government compensation prior to a 1990 deadline date. It was supposed to be a simple and expedient process, taking about 18 months, with decisions to be made by special masters without a trial. We were advised that we could go back to the law suit if a desired outcome was not reached.

Nine months later we had our hearing (in a NY federal court room), requiring preparation and giving of testimony, including cross examinations. Expert witnesses were called for both sides. Two months later, the special master determined that Stephen was in fact injured by the DPT vaccine, as described within the guidelines of the Vaccine Injury Table. Although we consider this first step of the process to have been timely and professionally managed, it seemed only to lack a jury to be a traditional court trial.

The next step of the process was to determine an amount of money to be compensated. We already had a life care plan in place because we were ready to go to trial before entering the compensation program. Instead of working with us to determine Stephen’s appropriate life care needs, the Department of Justice’s attorney sought for years to trivialize the extent of Stephen’s vaccine injuries and to argue for irresponsibly insufficient funds to support a reasonable quality of life.

After four years of such negotiations, we needed to request another hearing to come to settlement, requiring further testimony from ourselves and Stephen’s life care planner. It was determined on the spot by the chief special master that the life care plan the DOJ’s attorney and life care planner submitted was indeed unrealistic and ordered specific actions to be completed within two months. This hearing, in and of itself, was handled professionally. However, two months turned into four before an agreement was signed. Further delays ensued to correct a significant math error relative to the initial payment. The agreement was then filed at the end of a 90 day filing period.

The stipulation then required that we become legal guardians of our own child, causing further delay before any checks would be issued by the annuity company.

From the time we applied to the Vaccine Injury Compensation System to the time we were finally able to access the funds, six and a half years had gone by. Our savings disappeared as we paid for therapies not covered by our insurance, hearing aids and special schooling, among other extraordinary expenses. Under the guidelines of the program, families are not reimbursed for any past expenses.

We were very fortunate in that the law firm who represented us continued to fight on Stephen’s behalf far beyond any financial gain. In fact, the single payment of $30,000.00 allocated for attorneys’ fees in pre-’88 cases only covered the expenses incurred in preparation of our two hearings. The law firm itself received nothing for its efforts of representing Stephen over a ten year period.

Our attorney has described the hearing process as a "full out liability case." Once our case was won, he then had an item by item fight to obtain even the smallest of needs on Stephen’s life care plan. Concessions were made only on small items. Much time was spent by the DOJ attorney forcing the discussion of petty matters, such as whether Stephen would benefit from the use of a $10 special needs door knob (one was allowed throughout his lifetime), rather than getting down to serious matters dealing with the quality of Stephen’s future. Deadlines were often extended.

In our view, the recommendations of the DOJ attorney and government life care planner assigned to our case were unrealistic and irresponsible... for example, to determine the value of residential care they specified a residential center only in its planning stages or a charitable group home with no day services and a wait list of over 1,500 persons. We were given a "take it or leave it" final offer which still did not adequately address Stephen’s needs. This prompted our request for the second hearing which took place ten months later.

We entered into negotiations for Stephen’s life care with the belief that, unable to support himself, his needs would be met and his future would be sufficiently secure so that he could live as independent and normal a lifestyle as possible. We were mistaken. Our experience was a totally exhausting and extremely adversarial process of nickel & dime arguments. On the government’s behalf, every effort was made by the DOJ attorney to hold onto as much of the fund as possible. This included an attempt to establish a "reversionary trust", requiring any monies not spent during the course of each year to be returned to the government. Such practices place at risk the future care and security of every vaccine injured child.

The DOJ attorney continued to act as if he was still fighting a case, attempting to minimize the award which he had previously fought to avoid. This conflict of interest deadlocked negotiations and added years to resolving our settlement. After a decision is given that a child should be compensated, DOJ attorneys should step aside and allow others, with input from life care planners and families, to determine the projected needs of the individual throughout the balance of their lifetime.

As compensation is not retroactive to the date of the decision, each additional year of ‘bargaining’ is one less year to be compensated. This places further undue hardship on already emotionally and financially strained families. Our perception is that the program relies on this tactic to force families and their attorneys to accept less than adequate settlements which would provide optimal treatments for their vaccine injured child. Once a determination has been made that an adverse reaction was incurred, both sides should be working together in the best interest of the child.

The all out effort, time, and expense required to successfully negotiate the Vaccine Injury Compensation Program prompted our major law firm to never accept another vaccine injury case.

We are further concerned that life care plans used to determine settlement amounts are forwarded to annuity or trust companies, with the stipulation labels remaining. In our experience, copies of the life care plan have also been requested by courts and banks. A child’s needs will inevitably vary. Type or frequency of therapies can and do change. New treatments become available. Labels remaining on life care plans used to determine payment schedules, leave open a real risk that at any time someone might withhold funds if monies aren’t spent specifically as tagged. We are extremely uncomfortable that an individual as far removed as a bank clerk can potentially have a say over Stephen’s care because a treatment is not listed on his life care plan. Every family who has gone through this system faces the same threat to their child’s welfare. Might I suggest that such labels be removed in the future before sending out the plan, and that a letter be issued to clarify the ability of legal guardians to utilize funds in the most appropriate manner for the injured individual in their care.

As parents, we did everything in our power to provide the love, nurturing, and care to ensure a bright future for our firstborn child...a life full of dreams and promise. Part of that care was to protect him from harm and life-threatening diseases. We believed we were protecting our son when we took him for his baby shots. Instead his life and ours have been changed forever.

Each day is a challenge, and we try to meet that challenge to make things a little better. My hope is that, by our presence here, today’s challenge will make things better for the many families of vaccine injured children who are in, or who are attempting to enter into, the Vaccine Injury Compensation System, and for those who have been rejected by the system following changes to the Vaccine Injury Table.

Thank you for the opportunity to share our experience and express my concerns.