Once there was a place called Laconia State School and Training Center. The very name was deceiving - there was no schooling; there was no training. People just existed in that sterile environment. In reality, it was a warehouse for human beings - and such an insult to humanity.

The LSSTC was founded in 1901 as the NH School for the Feebleminded. My youngest child Janet was born on August 30, 1961. She was 2 ½ months old when she displayed signs of having serious problems. Once when I was bathing her, Janet suddenly began trembling, making odd little sounds and her eyes were darting very rapidly.

I drove Janet to the hospital immediately. After a brief examination, I was told that I had to take to Children’s Hospital in Boston. So I did. There she remained for two weeks.

The day before she was to be discharged, I was called down to the doctor’s office and given her diagnosis. I was told that Janet had severe damage to the right side of her brain, and because of that, she had epilepsy. Her trembling resulted from brain seizures. Her right eye was 1/3 smaller in circumference and had no optic nerve, so she had no vision in that eye.

I was told that she would be nothing but a vegetable. The doctor recommended that we institutionalize her and forget about her.

In a state of shock, I couldn’t believe that a doctor could be so insensitive. I cried all the way home.

We brought Janet home, determined to do all we could to make her life as comfortable and meaningful as possible. The whole family - her father, sister, brother and I - worked with her everyday trying to teach her how to walk, how to drink from a glass and how to feed herself. Janet did learn how to walk a little, but she never mastered the art of drinking from a cup or feeding herself.

She was a hyper-active child. She didn’t sleep much - just catnapped. I knew nothing about mental retardation or disabilities. There were no services, no support system, no programs available in the community for individuals with developmental disabilities. There was no one for me to talk with. The continuous care Janet needed eventually took its toll on me both mentally and physically, and I was hospitalized.

Janet was placed at LSSTC at that time. She was 5 years, 2 months and 19 days old.

Conditions at the institution were deplorable. In 1962, there were 900 residents at Laconia. By 1974, there were 1,000 with a waiting list of 400. Staffing was inadequate, with a ratio of 15-20 residents for every staff person trying to provide care. Turn-over was high.

I joined the Board of Directors of NH ARC in Concord. Other parents of residents at LSSTC also served on the Board. I met the parents of a young man who resided in the same building as Janet. Every time I saw the mom, she would say, "Mrs. Smith, we have to do something about this place."

I avoided her like the plague, knowing fully well what would happen if I got involved. And it did.

Our many concerns regarding the care of our children - lack of care was more like it - were brought up to the full Board. On August 14, 1974 members of the Board met with the Acting Superintendent of LSSTC, followed by a tour of the buildings on campus. A fact list was compiled listing the deficiencies with hopes that this would bring about some necessary changes. The rest is history.

Letters to the editor written by some parents began to appear in newspapers all over the state. I was at the State House so often that people thought I was a legislator long before I got elected. We spoke to civic and church groups and conducted tours of the institution in an attempt to educate the public about what life in an institution as like.

I wrote a letter to the Justice Department asking for an investigation of Laconia. Another parent and a grandparent signed the letter with me. The Justice Department agreed to conduct an investigation.

NH Legal Assistance, after much prodding, agreed to file a class action lawsuit on behalf of the residents at LSSTC. Janet was one of the six named plaintiffs.

The Mental Health Law Project of Washington, D.C. contacted me and asked if I could arrange a tour of the institution for them. They were interested in pursuing the possibility that abusive amounts of psychotropic drugs were being administered to the residents. Amazingly, staff at the institution opened the meds books to the attorneys, proving their suspicions correct. This was exactly the proof for which they had been looking - for a long time.

The Mental Health Law Project did join the lawsuit, but not for long. The parent organization gave them a $3,000 retainer fee. Then NH Commissioner of Mental Health and Developmental Disabilities - Gary Miller - who had been an expert witness for them on several occasions, convinced them to drop out of the lawsuit. We never got our retainer back.

The lawsuit was filed on April 12, 1978 and the trial opened two years later in Federal Court in Concord. We brought Janet home before the trial started because we feared for her safety. She had many unexplained bruises and cigarette burns on her hand, and she had regressed and was no longer walking.

The trial lasted 10 long weeks. I testified, as did other parents and staff. I sat in that courtroom every day of the trial. There were many days when John Distaso, a reporter from the Manchester Union Leader, and I were the only people in the courtroom besides the attorneys, the witnesses, the judge and his staff.

Not everyone agreed with the lawsuit. Some parents were concerned that if their son or daughter was released from Laconia and sent back to their home community, future federal and state funds could dry up. Group homes would have to close, forcing them to take their family member back home. Many were elderly, sickly and unable to care for themselves, let alone take on more responsibility. Returning from a vacation, I found out that a group of parents had circulated a petition demanding improvements at Laconia at the same time stating their opposition to its closure.

Judge Shane Devine handed down his decision on August 17, 1981, a year and a half after the trial ended. He did not order the closing of the institution, but he did order the State to educate every resident of LSSTC in the least restrictive setting possible. He also embraced a plan to develop alternatives to institutional care which became the cornerstone on which the current service system was built. Twelve Area Agencies were formed and the exodus from the institution began.

Janet’s health has always been delicate. She did return to Laconia for a short while. The medication for her seizures had been changed and she had become very lethargic. We were very concerned, and when visiting her one Sunday, we decided to take her directly to Children’s Hospital in Boston. She was treated there for dehydration and released. We brought her home - never to return to Laconia again. She was formally discharged one year later.

The Salem ARC got a grant from HUD to build an 8 bedroom home that would house individuals who would be returning from LSSTC to their community of origin. Janet moved into Teloca, the name given to the house. The name Teloca came from Tender, Loving Care.

I’m not going to tell you that everything was perfect from that time on. It wasn’t. Once again, Janet got her bruises.

A decision was made to open another home on Brady Avenue in Salem and Janet and three other individuals moved in. And once again, Janet got bruised up by another client. The house was eventually downsized from four to two individuals. Janet and her house-mate were both medically fragile and nurses came in daily to oversee their medications. Janet and her house-mate attended a day program and both were taking part in community activities.

Janet’s health remained a concern and she was hospitalized both in Boston and locally many times. She had major surgery of the esophagus, which failed. She had a history of anemia and received many transfusions. In February, Janet had her blood tested. I got a call from the nurse shortly after midnight telling me to take Janet to the hospital to receive two units of blood because her count was down.

Janet was at the hospital early that morning to receive the two units of blood. I was getting her ready for the trip back home when she had a large bowel movement. It was very black. The doctor had it tested and I was told she was actively bleeding and needed to be admitted. She received another unit of blood.

The next morning I took her down for a colonoscopy. After a conversation with the doctor, he elected to do an endoscopy first. Half an hour later, he came to me with devastating news. Janet had esophageal cancer. The tumor covered 2/3 of her esophagus and was very aggressive. He said she had two months to live.

Janet passed away four weeks later on March 20, 2004. I’m still in shock - in denial. God knew that she was tired and her work was done, so He called her home. She was my life. I loved her so much and I miss her terribly.