Link to Community Mental Hell (Part 1):
Link to Community Mental Hell (Part 2):
The unconscionable actions of a Community Mental Health agency?:
Just before Joey’s 11th birthday his mother was reacquainted with someone she had met almost seven years ago at a place she had been working at the time. Little did she know that this person had thought of her for many years and although he was traveling extensively he had been sending her messages for years from wherever in the world he may be. Even though he knew she probably would never access that E-mail account again, he could not help but try as she had touched him deeply when they first met. (As he would put it later, on many nights during flights or driving from one destination to another he would see her vision in his mind’s eye and remember how impressive of a person she was. That night when he arrived at his destination he would then send a message from wherever he was like throwing out a message in a bottle.) When she stumbled upon her old E-mail account she found messages that he had been sending to her for all those years. She found messages that had been sent every few months for years. The last had only been sent a couple weeks prior to her accessing this account so she decided to write. He was in California although still living in MI and they began to chat on the internet, talk on the phone, and send one another E-mail messages. Soon they would have a chance to meet again in person after 7 years and they developed a very strong relationship that would later lead to marriage. Over the next several months her lost friend would have the opportunity to accept the Plant Managers position at the business she was consulting with. Together they began researching Joey’s disabilities and trying together to help Joey.
Over the next two years they both began talking to Joey’s case manager at his monthly visit, going to psychiatrist visits together, visiting the school together, and beginning to become a family. Joey did not accept his mother having a new person in her life and she questioned if she was doing the right thing. She was afraid that her new love may not be willing to do what it would take to stick it out with her and Joey as life was so difficult, she was afraid that her new love would not want to be stuck in a small town as he was used to traveling to differing locations throughout the world each week for the last ten years, she felt it was unfair that Joey could not accept her having a new person in her life, and she was afraid she could not focus on a relationship as Joey consumed almost all of her time. One night she even told him that he needed to find someone else and he responded that he would go if that is what she wished however he had waited 7 years and would wait her out if needed as he knew she was the one for him. Only time began to alleviate these fears and they both knew that no matter what came their way they would face it together as a family.
As time went on they knew their time was limited to help Joey as additional incidents with Joey had caused injuries to other children, extensive property damage, and both of them had sustained injuries during some of Joey’s outbursts. Respite was now impossible as no one could watch Joey. The frequency of the school having his mother pick him up from school or asking her not to send him were increasing and finally Joey’s mother was forced to give up work entirely and stay home with Joey. She did this for a summer and Joey’s demand for her attention just increased. Her fiancé now managing the company they both worked at was able to retain some of her consulting services that she could perform at home. He knew he was losing his most talented resource but also knew Joey needed her and that there was no other choice. During that summer Joey’s mother tried with every bit of her energy to form an attachment with Joey that she hoped would help Joey. Her fiancé would hurry home each day for lunch and right after work hoping nothing bad happened to either of them. In the two years they had been dating they had only really had one night out alone. As things continued to get worse because Joey had figured out he was now physically capable of pushing his way through his mother to get his way things became very dangerous. At one point her fiancé pulled the case manager aside and told him to make no mistake about it, things were life threatening on a daily basis. Due to the Reactive Disorder, Joey had threatened to kill her and her fiancé on many occasions, hidden scissors under his mattress, taken a knife to his mother, hit both of them, and would throw dangerous objects when upset. When the case manager would come into the home he would witness the holes in the wall, see other property damage, be informed of Joey running her off the road during transport, Joey eloping, told of issues at school, and of all the other behavior issues they were dealing with. The case manager from Community Mental Health would at each visit say there was nothing they could do to assist.
When Joey was 13, his mother and fiancé were married. When they were married, they had a quick service and included Joey in the service, then took Joey bowling as they could not get anyone to watch Joey for a couple of days so that they could have a two day honeymoon on Mackinaw Island that they have saved for. His new stepfather was sure that the Community Mental Health Agency was not handling Joey’s case properly and that they were not providing the services that they should be. He kept prodding Joey’s mother to take a harder stance with that agency and letting her know that even though he did not know exactly what they should be doing, that he had dealt with organizations for many years and he could tell they were not being honest about what may be available. Joey’s mother could not believe they would intentionally withhold services and was still so appreciative of the little help they were receiving that she was not willing to press them. She accepted that this was all Joey could get for help and when they kept telling her there was no money to help these children that they were stating actual facts. Joey’s mother was convinced that if Joey were to get any help that she was the only one that could do it so she enrolled in on-line college courses to get her psychology degree and would stay up until the early hours of the morning to try accomplish this as she could not get any time during the day to do this.
At this point Joey’s stepfather knew he had to give up his career as well to stay home with Joey and his mother to keep everyone safe. Joey’s disabilities (especially the Reactive Attachment Disorder) made the control battles unbearable at times for all of them. They were both now home with Joey at all times. Many days the control battles were so intense that neither his mother nor stepfather would be able to eat or shower. Joey’s stepfather had started a business several years before that they were both able to run from their home and at least make the monthly bills. When either of them had to leave the home for grocery’s, run to the bank or post office, or try to get to a doctor’s appointment they literally ran to the parking lot, hurried to complete the task, and got back home as quickly as possible as they feared what may happen with only one of them home with Joey. Again, all of this was reported to their Community Mental Health agency each and every month. They discussed all of these issues with their case manager, psychiatrist, and others. Transporting Joey to school was getting worse and the school had even tried providing Joey with his own bus with an aid and in a harness and even then they were forced to pull the bus over and call the police. On one occasion he was taken from the school to Community Mental Health and they indicated a 24 hour intervention was warranted. They arranged for a family to take Joey for the night. About three hours later the parents were called by the respite provider indicating they were afraid to have Joey in their home. The parents were forced to pick up Joey late that Friday night and transport him home during an ice storm. Joey was having a violent episode and his stepfather had to ride in the back seat and restrain Joey while his mother drove them through the storm back to their home. The Community Mental Health agency had made no backup plans and did not even check in until the parents called them the following Monday. For the next year the parents were forced to try to home school Joey and were secluded with Joey in their apartment with no help at all.
In the same month that Joey turned 14 things at home were going from bad to worse. They had been forced to call their local police department on numerous occasions for assistance. To make a living Joey’s stepfather had to leave the home for one day and his mother was forced to call the police for an intervention on three separate occasions in one night. Finally with no other options Joey’s mother let her husband “off the leash” as she put it to try to see what other assistance the Community Mental Health agency could provide. Joey’s stepfather setup a meeting with the Director of the Community Mental Health agency and requested the best possible plan they could provide for Joey. He also pointed out that the agency had not provided anyone for respite in over two years and that each periodic review for the last two years had noted that they were looking for suitable respite staff. This meeting was contentious and Joey’s stepfather pointed out how the failures of the agency were affecting their family. The Director of the Community Mental Health indicated he would send out his best respite tech., something that they had never even been informed existed in the agency. He also offered to transport Joey to his upcoming psychiatrist visit by one of their on-staff drivers, which again the parents had never been told was available within the agency. The respite tech. showed up the next day and the parents knew he would not be able to handle Joey. They drove around the block for about 45 minutes then came in to check on them. Joey had hosed him down outside, flooded the kitchen, and had the respite tech. on the ropes. The parents sent him back to the Community Health agency that day and agreed to try it once more the next day as the Community Mental Health agency had not provided the respite tech. with any information regarding Joey. The next day the parents once again drove around the block for about 30 minutes and came back into the home to find that Joey had entered their bedroom on numerous occasions which they had managed to keep off limits as all the knives and other dangerous objects were hidden there. More importantly by having their room off limits Joey’s mother had a safe haven when her husband was out running errands. Joey was also having a tantrum and knew he was going to be in trouble. Joey began throwing objects and ripping the shelving units out of his closet. The parents called the police for an intervention.
Three separate police departments showed up and the respite tech. told them there was no way the parents could do this alone with Joey. When the Chief of Police requested to talk with someone in charge at the Community Mental Health agency he was connected to the Director of Clinical Psychology. The Director tried to have the Chief of Police to have Joey petitioned through the criminal justice system which he documented in his report. The Chief of Police explained that this was a mental health issue and that he would not press charges on a child with the mind of a five year old. During the conversations Joey’s mother asked her husband if they could take Joey to a private facility about an hour away until they could figure this out as the police department had been in the home three times this week and said they could not keep doing this. (This was the only facility in MI the parents were aware of that may be able to help.) The only option they were given by the Community Mental Health agency was to transport Joey across the state and have him evaluated with no guarantee that they would admit Joey for a three day evaluation and stabilization. This would have entailed driving Joey five hours to be evaluated and if not admitted transporting him back. This was not an acceptable solution as transporting Joey anywhere was dangerous and it was already late in the afternoon. (Night time was the worst with Joey and the parents on many nights were battling Joey until the early hours of the morning even in their home.) The parents elected to get Joey to a safe place so they could deal with the Community Mental Health agency the next day and find out what could be done for Joey.
The following day Joey’s stepfather once again met with Community Mental Health and the Director who offered to up their 800 useless hours of respite to 1,600 useless hours a year as they had no one that could provide the respite service for Joey. He provided a written response to them indicating their only two choices were to give up their parental rights or have Joey obtain assistance in the criminal justice system. (It is important to know that during all these years, with all the behaviors that Joey exhibited, with the fact Joey could not function within the bounds of school or society in general, and all the things that Joey's mother had informed them of, the Community Mental Health organization never once suggested that Joey obtain testing for his mental conditions, never once suggested his mother seek out other professional opinions, and never once even informed her of the services that may be available if Joey had differing diagnosis. Joey's parents now must assume that the Community Mental Health agency and school were well aware of what they would have to provide if this was ever done and were avoiding getting Joey properly evaluated to keep from doing so. Joey's mother on several occasions had told her case worker she would cut off her own legs if she could just get help for Joey.)
That night they sat on their patio and decided no matter what the outcome they would risk everything to get Joey the help that he needed. They then contacted an attorney and began a long process of trying to get Joey help. Over the next several weeks the parents kept Joey in the private facility while their attorney battled the Community Mental Health agency. The costs were over $750 a day in this facility that they were not prepared to sustain for more than a couple of weeks although they knew they had to keep Joey safe. The private facility had extremely well trained staff and indicated there was no way they should have been attempting this alone and there was no way that Joey should not have been getting assistance for years. Joey was safe and for the first time people were around Joey that really understood and acknowledged the extent of Joey’s disabilities. As the legal battle raged with the Community Mental Health agency a person form the Community Mental Health Department in Lansing was called in and recommended a third party assessment of Joey. As their Community Mental Health Department had no choice but to accept the assessment was scheduled. Joey was residing in the private facility under their respite program as if the parents had allowed him to be treated they would become responsible and let their Community Mental Health agency off the hook. The assessment showed that Joey was likely suffering from Mental Retardation, Reactive Attachment Disorder, Fetal Alcohol Syndrome, and other behavioral issues. Their Community Mental Health agency now tried to skirt their responsibility by having a doctor who had never met Joey and was not provided with current information, write an opinion in contradiction to this. By the recommendation of the state office Joey was finally transferred to Hawthorn which is the only remaining mental institution for children in MI. Although Hawthorn did not take developmentally delayed children the state was able to gain admittance for Joey to be properly assessed and to have his medications evaluated. This process took over three months and the parents were now responsible for over $70,000.00 for his time there.
While at Hawthorn Joey was tested and his medications changed. The testing showed that his IQ was in the low forty’s instead of 71 that the school had given him. He tested fully on the Autism Spectrum instead of at the higher range of Asperger’s as the Community Mental Health agency had always indicated. Joey was also diagnosed with Fetal Alcohol Syndrome, Reactive Attachment Disorder, and behavioral issues associated to these disorders. As the parents would now find out Joey was eligible for Community Living Support Staff, occupational therapy, increased visits by a therapist, home aids, additional help at school, and much more. They also learned that the State of MI provides assistance to the local Community Mental Health agencies for severely disabled children. They have also learned that Community Mental Health agencies are allowed to roll over some unused funds provided by Medicaid into their general funds and they wonder if this is how a Community Mental Health in a rural county could build a new building and seem to have the dollars to do much of what they wish, rather than providing the services to those that are in true need. They realize these children require a huge financial commitment although they also know it is within their rights and that these children and their families did not ask for the disorders they must suffer with each day. The Community Mental Health agency was still fighting the whole process as they were now responsible to provide these services and they allowed Joey to remain in the state hospital for the next few months although he could have been released after 30 days.
The parents have now incurred over $60,000 in legal fees and over $70,000 for the private facility that they had no choice but to use to keep Joey safe while they fought for him. They have lost over another $250,000 in lost income. They have both lost their careers and their lives will never be the same. At this time Joey is finally receiving services in line with his disabilities and which were within his right all along. Although the parents are pursuing legal actions against the Community Mental Health agency to recover some of the stay in the private facility, they can never get back the lost years that Joey could have been helped. They only have the hope of recovering a small portion of the cost of this fight and in MI cannot recover attorney fees.
After all of this, when asked, they would not change what they did. Although the Community Mental Health agency still fights every request, is not providing staffing appropriate for his disorders and physical size, admits they have not assisted a youth to this extent in over a decade, admits they do not have the experience with children with these disabilities, and the parents feel the Community Mental Health agency continues to fail in many ways as far as they are concerned, Joey’s true disabilities are being recognized by many and Joey is receiving far more assistance than he was before. The parents are also thankful that Joey is not in the criminal justice system as it appears to them that this was always the intent of the Community Mental Health agency so that the criminal justice system would be responsible for the financial burden. (Many have stated that if Joey had been entered into the criminal justice system that it would be a travesty and that he would have never gotten out of the system.) The parents believe there is no way anyone could review Joey’s history, view his daily behaviors, talk with Joey, and not know his disabilities were far more severe than was recognized by their Community Mental Health agency or the school district. Joey’s parents are now looking into starting an advocacy group to assist parents so they will not have to suffer what they had to in order to get their child the help they may desperately need.
Although Joey’s parents have no idea what the future will bring, if they will ever be able to get back on sound financial footing, what theirs and Joey’s future will hold, they know in their hearts that they did the right thing and that they are together.