The Case for State Hospitals and Orphanages:
The Failure of Foster Care, Group Homes and the Public School System
The move to shut down state hospitals began in the seventies and by the year 2000 most mentally retarded residents were placed in privately run residential homes. In the state of Kansas, the failure of SRS (Social and Rehabilitative Services) to monitor foster children resulted in that function being removed from SRS responsibilities. Those who once pushed to have orphanages closed in favor of foster families are the same type who managed to have the state hospitals shut down, bleeding hearts who patted themselves on the back for changing laws while they rode off into the sunset, leaving the mess they created for people actually working in the field. People like me.
I had once considered teaching special education and began taking classes where I did observations in numerous special education classrooms in the Wichita area. It was different and a challenge I thought worth following up. When I was offered a program director position at Camp New Hope in Minnesota I jumped at it. For nearly three months I worked with mentally retarded adults from the state hospital at Cambridge and children from private homes. I learned all aspects of these individual’s lives since we had them twenty-four hours a day for five days. I made lessons plans for all levels of disabilities and participated in their daily care.
The experience was invaluable and surpassed any teaching internship in the public schools. On the way back home I stopped by Emporia State University to discuss my work at the camp as an internship. It was turned down and I was told that I would have to first obtain a degree in Education and then a Master’s in Psychology where I would watch rats run through a maze in order to teach special education. My hands-on experience was pretty much worthless. This would be a continuing phenomenon through my involvement with special needs populations and social work in general. Theory and ideals seem to dominate and not reality.
The next job was at a residential facility for children with behavior and emotional problems where I met my future foster child, Jo Smith (a pseudonym) age thirteen. The facility, the Communication Institute (CI) , consisted of blocks of brick buildings divided into apartments shared by two clients. Doors between the apartments could be opened in the event the single staff on duty in each apartment should need assistance. I worked in two apartments as relief. There I met Anne Wright, a delightful woman with a strong Scottish brogue and years of teaching experience. Jo had a roommate with Down’s syndrome named Jenny. Jo had been at the facility for two years before Anne and I were employed there and yet there had been sixteen different workers in that apartment, not including us, due to Jo’s aggressive behavior, which included biting her helpless roommate.
As a toddler Jo had spent six weeks in a nursing home run by an order of nuns, Sister Adorers of the Blood of Christ. When taking classes at Kansas Newman University I sometimes took Jo with me and one day one of the sisters remembered Jo. She told me that she had once taught at the St. Joseph’s orphanage in Eldorado, Kansas in the fifties. One of the issues bothering this sister was the completely negative viewpoints of orphanages. It reminded me of similar comments by staff at Cambridge State Training Center in Minnesota.
Some very positive aspects of state hospitals and orphanages were the longevity of employees, consistency of location and fellow residents. While there are always exceptions to the rule, foster care and group homes have done nothing to lessen abuse or high staff turnover, quite the opposite. At Cambridge there were many staff who had been employed there when residents in their thirties and forties were admitted as children. Such long term involvement will no longer be the case.
In the apartment next to Jo and Jenny at CI there was a nine year old girl, Helen (a pseudonym) who was being sexually abused by her grandfather when she went home for two weeks or when he would visit. When the grandparents would visit, grandma got her hotel room and grandpa and Helen shared their own. After these visits Helen would tirade for four days straight cussing worst than a trucker, painting the walls with feces or flour or whatever she could find. She would also attempt to rape her roommate, Molly. The intimidation and language Helen would use in terrorizing Molly were very sophisticated and disturbing, shedding light on what grandpa had been teaching her.
Staff spent the night at this facility without pay unless the clients got up. I was the relief staff in that apartment and had been without sleep for three nights due to staffing problems and the need to monitor Helen’s actions. I told the supervisor that I was not able to stay awake and feared for Molly’s safety. He simply told me that there was no relief staff and I had to just endure. I woke up in the middle of the fourth night to Molly screaming as Helen molested and threatened her. I again tried to obtain help from the supervisor only to hear excuses. The only time I have ever broke confidentially in my career was in this case when I told Molly’s mother what was happening to protect Molly. Only then was action taken and Helen removed from the apartment. The priority here was that Helen was from out of state and the facility was making a great deal of money having her there. SRS, of course, found no fault with the supervisor’s actions. I did suffer a round of retaliation from CI before quitting.
When I left CI I took Jo with me into private foster care. It was very difficult as Jo’s behavior escalated as is typical with foster and adoptive children. The first year was filled with Jo busting holes in the walls and windows in my van, attacking me in the car and showing herself in public. She was a head banger who liked to break glasses and noses. I spend many hours in the ER because there was no helmet made that Jo could not break and that included a professional football helmet. At that time there was no respite care except for six beds at the state hospital once a year. The rest of the time I relied on my mother and sister as no one else could handle her.
Jo had a good social worker for a short time until she went back to school for a Master’s degree and left SRS. The real nightmare started. It was then that I found out why so many other foster parents hated SRS. I would soon join them. I was worn out not just from Jo’s behavior, but from the complete lack of concern SRS had for compensating foster parents. I did what was called Level IV Foster Care due to the severity of Jo’s disability. For fifty dollars a day the state of Kansas got a real bargain. If I had not taken Jo into foster care the state was looking into a facility on the east coast that cost $500 a day. SRS paid their employees first and then “vendors” and often my check came two weeks late. I guess it never occurred to the state that if I lost my house they would have to find another place for Jo to live. I also was not paid when I had to spend seven days in the psych ward with Jo to have her medications reviewed, yet groups homes, which are paid some $8000 a month to care for clients are paid because, “they still have expenses no matter where the child resides”.
A revolving door began on caseworkers and there was even a time when Jo did not have one for six months, but I was unaware of it as SRS offered so little support I did not notice. SRS also conveniently seemed to forget my phone number or even who Jo was to them in the rare occasion that I called for help. SRS had nowhere else to place Jo and feared that I wanted to leave the foster care program. If they did not answer my calls, I was stuck. Several times program support workers would call me and chew me out for drinking while I was pregnant as Jo had fetal alcohol syndrome. I would let them finish then inform them that Jo was a foster child. SRS did recall my phone number when I applied for a job as a program support worker and interviewed for the job. They called five times trying to catch me at home, so I assumed that I had got the job. No, the social worker was hunting me down to criticize my interview.
As the state hospitals began to close, new programs were created such as Home Community Based Services (HCBS). Jo was nearing the age of eighteen and would no longer be eligible for foster care. SRS caseworkers at the time were not educated regarding HCBS and told me that I could not be paid to care for her under that program. They told me this because SRS thought I was Jo’s biological family, which was not true. Even if I had been, HCBS would have paid me to keep Jo at home with me. SRS was wrong. Since I had to work, and could not have Jo at home with no one to watch her, I placed her at an ICF MR facility where she could still attend high school until age twenty-one.
The ICF MR turned out to be a toilet and I moved her to a group home about seventy miles from my home. I don’t think I ever saw the same staff twice when I visited. Several times I would find all the residents shut up in their rooms so some jock could watch football undisturbed. On one occasion I went to pick Jo up and could not find anyone that looked like staff, so I just walked Jo outside to the car. Someone I thought was a client came out behind us, whining and rocking back and forth like Rain Man. No staff came out to get her because she WAS the staff. I moved Jo shortly after that incident to a facility closer to home in Wichita.
Starlight was a poor choice also. Jo’s weight escalated due to the high fat diet and lack of exercise at the home. They complained about her behavior numerous times, so I suggested that she go back on Lithium for about six months as for Jo that was a miracle drug. They did not bother to have her blood levels checked and Jo was admitted to the hospital for dialysis to remove the toxic drug levels in her blood stream. SRS found no evidence of neglect or abuse. One day her medical doctor called me to ask if I knew Jo was being treated for sexually transmitted disease (STD). Of course, I had not been informed by Starlight and I was furious. When SRS called me the caseworker tried to put the blame on me for not calling the police when the assault occurred. I informed her that I was never told of the assault by Starlight at all and could hardly file a police report. If the doctor had not been angry and called me I would not have known. Nothing was ever done to the offender. Once again SRS found the abuse allegation unsubstantiated. I had Jo moved out of there in an emergency placement to another facility.
Jo was in two additional group homes and is now in the last facility she will be in. She lives near me and I visit her residential and day services. In the facility prior to the present one, CCC, Jo lost weight and was healthy, but the house manager had the notion that he could blow me off completely as her guardian and spend her money whenever and however he chose. He looked like a felon and had the attitude of one. At the group home where he worked prior to becoming a house manager at CCC, he was fired for having sex on a washing machine with another employee. CCC chose not to discipline him in any manner regarding my complaints and did not cooperate with Jo’s outside case manger. The law states that a person can chose the services they wish to obtain and cannot be forced or coerced into accepting all services from the same agency. This was not the reality of the situation.
While there are many good people working in residential and day services, there are also many who cannot find jobs anywhere else and people with disabilities pay for it. The pay is bad and often there are no benefits or they are lacking. Well qualified people simply do not stay under such conditions. My advice to any parent or guardian is to hire separate case mangers and payees and not have all services from one agency. It is a conflict of interest and should never have been allowed. The regulations have since changed and having case manger services from the residential provider is considered a conflict of interest.
I worked in the public school system where I saw the results of the Individuals with Disabilities Education Act (IDEA) and No Child Left Behind, which indicates that behavior cannot keep a child from public school. As a foster parent I often had to deal with people that have the notion that children and adults with special needs should have the right to hit, kick, pinch, scream, swear, throw furniture, feces or whatever else they can lay their hands on, with no consequences. Many times we had to clear the classroom so one student could throw a fit. Such behavior is not a consequence of any disability, but of attitudes that dictate that such children have more rights than anyone else and cannot learn to behave otherwise. While public schools may have to endure aggressive and violent behavior, residential homes do not, and since there are no more state hospitals equipped to deal with aggression, such children may end up back at home with their parents as adults.
Criminal behavior is also ignored in students with special needs and it should not be. You get just what you expect out of DD/MR (developmentally disabled/mentally retarded) people: if you expect the worse or nothing that is what you will get. I know of one student we’ll call Wayne, who broke the bully policy five days a week, roamed the halls, stalked staff, mocked staff, insulted staff, intimidated regular education girls and often had an erection. There had been times when the school bus waited fifteen minutes for Wayne to decide if he wanted to get on or not or the driver took him around the block and brought him back because he changed his mind. This student hit a pregnant woman in the stomach and was allowed to buy a cookie anyway and was not sent home. Wayne should have been suspended. He insulted kitchen staff and was then allowed to order pizza delivery. Sometimes he would insult the kitchen staff, buy lunch from them and then throw it in the trash where they could see it. Wayne is mean and a bully. No matter what he does Wayne has a ‘get out of jail free card’ because of his disability. When I was going to school we called people like Wayne punks and they went to jail for their behavior, they were not allowed to terrorize the school. None of his behavior can be blamed on his disability. There was a more appropriate placement for Wayne, but administration would not put him there because he is MR.
We have become a society of excuses and hold no one accountable for their actions. I find this very sad as teaching special needs children socially responsible behavior and vocational skills is very possible and is done every day. How can you teach children correct behavior and attitudes when students like Wayne can perform nearly no school work and refuse to participate in vocational programs? He would tell you that he not a student and does not have to follow orders of other staff since he is staff. Well, Wayne was certainly treated that way, so little wonder he believed that he was above other students. He graduated with a high school diploma and is illiterate.
The public school system has spoiled parents and students alike in that the schools are expected to make up where parents fail or refuse to take responsibility for their children’s behavior. Schools and teachers are to blame for everything. If all children are not taught properly they will have a difficult future, but especially special needs children. The waiting lists for residential and day services are around five years long, which means that many adult children will be living at home, including those who are aggressive or violent. There are no longer state hospitals where such behaviors could be treated, where they HAD to be treated. While public schools have to tolerate inappropriate behaviors, society should not. A good example is a case in Wichita, Kansas where an autistic adult male slapped a six month old baby in the head because she was crying in a department store. He was not sorry and said that he had done it before, obviously with no consequences.
I am sure that I will offend and anger many people with this essay, but those people need to remember that Wayne and those like him will be wandering the streets because they have nowhere else to go and their parents cannot handle them. The consequences of closing orphanages has already been seen in the disaster of the foster care system, but the long term effects of the state hospital closings is yet to be determined. I cannot imagine that it will be positive after what I have witnessed in my thirty years working with special needs populations. There has to be an alternative for those with Intellectual Disabilities and violent/aggressive behaviors. Other students have the right to learn in a safe environment and should not have to work wondering if they will be hit or have something thrown at them or attempt to do school work with screaming or shouting all around them. Why should the rights of a few override the many and not just in the school system, but in society as well ?