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Letters
February 9, 2004
As part of our series, we asked visitors to our Web site to submit their stories of navigating the mental health system in Minnesota. Below is a sample of those letters. New submissions are added daily.
— My wife and I have a 13-year-old adopted daughter who has Fetal Alcohol Effect, and has been diagnosed with many disorders resulting from the FAE. Among her diagnoses are Conduct Disorder, Bipolar Disorder, and Reactive Attachment Disorder. She has some autistic symptoms, and some delusional thinking. She is often extremely paranoid, has incredibly intense mood swings, and has a long history of intimidating and violent behavior toward family members.
The most difficult challenge we have faced is the tendency of mental heath "professionals" to assume that when a child has mental illness it must somehow be the fault of the parents. So many times, we've been told that if we would just try this or that parenting technique, things would be fine. We've been accused of having done something to traumatize our daughter. We've been called uncooperative when we've tried to get therapists to focus on our daugher's illness rather than on us. We've even been pressured to undergo psychological testing to determine how we have contributed to the problem.
Fetal Alcohol Effect causes permanent organic brain damage. Our daugher will suffer the effects of her illness throughout her entire life. Her chances of having a normal, independent life are not good, but we as parents have done everything in our power to get her the help she needs. We were misled by the adoption agency (in another state), which led us to believe that our daugher's birth mother had only used drugs for a very short time during her pregnancy. Recently, we've been able to obtain information that proves that they knew that the birth mother drank heavily every day during until the 7th month of her pregnancy. Our daugher didn't ask for this to happen to her, and neither did we. It's cruel to accuse adoptive parents of being "bad" parents when they're doing their best to cope with an almost impossible situation. We've done the best we could, and we have another child who is happy, healthy, and well-adjusted despite his having to cope with a seriously disturbed sister.
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Our daugher didn't ask for this to happen to her, and neither did we. It's cruel to accuse adoptive parents of being "bad" parents when they're doing their best to cope with an almost impossible situation.
- R.M., Plymouth, Minn. | |
We have received a great deal of help from Hennepin County Children's Mental Health. Our daughter's caseworker has worked hard to connect us with the resources we need. Unfortunately, those resources are very limited. There are very few treatment facilities, and it's very hard to get kids into them. Paying for the treatment is another big problem. Insurance won't pay for many types of treatment, and county resources are limited, hard to access, and require payment of parental fees that can be very burdensome for middle income families.
When our daugher's illness first became more than we could handle at home and at school, it took weeks before we could see a therapist covered by our insurance. Even then, our daugher could only seen the therapist once a month. As her symptoms became more severe, this was clearly not enough. Our insurance company refused to pay for anything more intensive, so we contacted Hennepin County. Through the county, we were able to get more intensive therapy and other help. Unfortunately, our daugher's problems continued to worsen, and after some extremely violent incidents and two hospitalizations, she went to a group home.
The treatment program at the group home was not really appropriate for her, however. It was geared toward kids who had behavior problems, but not underlying mental illness. When we tried to get the group home staff to understand our daugher's needs, we were labelled as uncooperative parents. She was finally, after a year and a half, "kicked out" of the group home. At that point, we had great difficulty in finding an appropriate placement. The only option offered was a theraputic foster home, which we agreed to even though we didn't believe it was right for our daughter, because the only alternative was to bring her home, which would have put us and our son in danger. The first home was a disaster, but the second foster home seemed to be working quite well.
In order to access county services such as foster care, a court action called a CHIPS (CHIld in need of Protection or Services) petition is required. The child's care is then under court supervision. After our daugher had been in the second foster home for 5 weeks, we went to court for what we thought was a routine hearing. Against the advice of everyone involved in our daugher's care, the judge sent her home immediately. When I tried to voice our concerns about our family's safety, the judge told me that the county can't keep kids in placement just because parents are afraid to bring them home.
Even though we were sure it was a matter of time until she became violent, we had no choice but to bring her home. So we did, hoping for the best, and determined to do all we could to make it work. All too soon, the initial "honeymoon" was over, and our daugher's behavior began to escalate. We nearly pushed ourselves to the point of breakdown trying to deal with her paranoia, mood swings, intimidating behavior, and violent rages. Several time she lost control and attacked our son, and I was hurt in trying to intervene. Finally, she injured our son and I was forced to call the police. Before the police could arrive, she attacked my son and me with a fireplace poker.
The police were very helpful and supportive, and took her to juvenile detention. After 48 hours, she was released. We refused to bring her home, fearing for our family's safety, so she was sent to a shelter. A few days later, we checked her into the Adolescent Psych unit at Fairview Riverside, where she's been for 3 weeks. We are now searching for an appropriate residental treatment facility.
It is unfortunate that parents are forced to fend for themselves and their children until things reach an extreme of violence and danger. Our son could have been killed, but nobody seemed able to do anything until after the incident happened. It's very frightening living with a the potential of violence in one's home.
Treatment options are very limited. We don't know what will happen if the residential treatment facility can't help our daughter. We may eventually be forced to reliquish our parental rights in order to get our daugher the help she needs. The mental health system is reactive, rather than proactive. One can only get help after things have become unbearable and dangerous, and then only if one is extremely persistent. I often wonder, what would have happened to our family if we lived in a rural area, or didn't have good insurance? What happens to poor families, or poorly-educated families who have children with mental illness? What happens to kids with Fetal Alcohol who continue to live with the parents whose sustance abuse continues? We have been unusually fortunate in having had the resources to advocate for our daugher and to become informed about her illness. R.M., Plymouth, Minn.
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We inquired why the case had not been handled. We were told because it was put on low priority. I was livid.
- L.T., Brooten, Minn. | |
Just over a year ago, my family and I had to access the mental health system again, related to things that had happened to my children when they were young. Ten years ago I and my children had become victims of the system, after already becoming victims of my husband.
It began when my sister-in-law called and tearfully told me how all of her brothers, save one, had molested her. All I could say was "I am sorry, so, so sorry." I knew it was true. It was like a great shroud had been lifted. Everything started making sense. I had confronted my husband before, and he made me feel crazy for thinking such things. Now I knew I wasn't the crazy one. Just weeks before he told me he recently had sex with his twin brother. I thought it was some perverse way he was trying to turn me on, now I realized it was true. He was testing my reaction, testing me to see if I was going to be a willing participant.
When both boys were very young, they were diagnosed with ADD. They suffered with bouts of vomiting and diarhhea after having been alone with their father. A doctor thought it might be a milk intolerance. It was a perfect alibi for my ex. If they had been with him and were sick, he would say "I forgot to give them their milk pill." I fell for it, for awhile. After the revelation from his sister, I quit giving them the pills, and lots of milk and ice cream, and they never had trouble. To this day, I don't know what he was doing to them to make them sick.
Through family services, we ended up at the Fergus Falls Mental Health facility, where I was asked if perhaps I was just a prude. We both underwent some testing, with nothing remarkable discovered, except that my husband was paranoid. Family services sent the kids to the Twin Cities for testing, weeks after the fact, to determine if the kids had been molested. I could have told them they wouldn't find any evidence, too much time had passed, but I was trying to cooperate completely with the system. Because of the physicals they did on them I felt as if I had let them be molested again.
I continued with counseling, and continued to have my kids in counseling. My kids were still having visitation with their father, because my hands were tied. I had no legal way of keeping it from happening.
Family services dropped the ball. My oldest would not cooperate with them (not unusual in these cases) and they said they could not understand what my youngest son had to say when he said things happened to him in the "music room." I told them to have him take them to the music room, so they could understand. I thought they were professionals, and I shouldn't be having to tell them how to do their job.
At one counseling session, my youngest said something that warranted the counselor to advise that my children only have supervised visitation with my husband -- the first right thing to happen. During my divorce, and because of all that had happened, thankfully the court appointed a guardian ad litem for my kids. She determined and it is documented in the courts that he is a sexual deviant, and it is in the best interest of the kids to not to have visitation with him. In the meantime, to build his case, he had visited a counselor, from the same center I was taking my children, who determined he was not a threat, that what he admitted to having done was just "sexual experimentation."
The judge didn't see it that way. He said based on what the guardian ad litem had determined, and that he had admitted to incestuous acts, there was nothing keeping him from such acts with his own children.
Last year my son started suffering some of the fallout from what happened to him when he was younger. When I tried to get him the same counselor as when he was younger, I was told I would have to go through family services. I was devastated, especially when learning the same person who was on the case 10 years earlier was in charge of assigning the cases. Still, I went through the proper channels and after several days, had not heard from family services. I contacted them again and was put off. I then contacted the women and childrens advocate in town, to see if she could help. She didn't get any further. It wasn't until the police were contacted that anything began to happen.
The advocate accompanied me to family services, and she inquired why the case had not been handled. We were told because it was put on low priority. I was livid. She passified me by telling me that the person who had assigned the case was leaving for a different job. It was small comfort. Finally, we got to see a counselor.
Immediately family services started contacting me to close out the case. I wouldn't agree at first. I couldn't believe there callousness, but finally did, realizing how very little help they had ever been anyway. -- L.T., Brooten, Minn.
My first experience with the mental health system was in October 2000. I was hospitalized after a suicide attemt and my whole world fell apart. As I live in rural southwestern Minnesota, a psychiatrist appointment for me meant an 80-mile drive to Sioux Falls, S.D. At first, I was seen a psychiatrist and also a counselor for psychotherapy. I was frustrated by the fact that insurance limits the number of mental health visits they will pay for, even though my doctor requested return visits for monitoring medication changes etc. I felt punished being mentally ill and that my depression was not viewed as a real illness.
They do not limit office visits for diabetes, heart disease, arthritis, etc. I was lucky enough to find good doctors, however, when my psychiatrist moved out of state I was then forced to seek a new psychiatrist. For a while, I saw psychiatry residents. That was OK but I felt my continuity of care suffered. Just as I would feel comfortable with a resident and felt we were making head-way, they would leave and I would get a new resident. I felt it was detrimental to my recovery. So in 3 years,I saw 3 residents and 2 psychiatrists.
Luckily, my last resident recommended a psychiatrist and I called to make an appointment. But, as with many, I had an eight-week wait and before that appointment I presented to the emergency room for suicidal thoughts and was hospitalized. Fortunately, I was then able to see the new psychiatrist sooner. He did medication adjustments, I had ECT therapy and really feel like I am on the road to recovery. I still feel frustration at having to deal with insurance not treating my illness like others and I worry about my future.
What if my doctor leaves? It is so hard to find a psychiatrist that you feel comfortable with and that is so important for recovery. I do plan on writing my legislators regarding parity for mental health issues and insurance reimbursement. Thank you MPR for bringing this issue into the light. Debra Ollerich, Lakefield, Minn.
Adequate care in Minnesota?? Absolutely not! Part of my personal saga concerns my son, now 19 years old. I'll skip the most "hellish" years, when "M" was in middle school and high school, and suffice it to say that he has a long dark history of depression. In the few years that he has been out of school, his moods and life have become more stable. I attribute this to a number of factors including maturity, absense of school "pressures," and "M"'s own development of coping mechanisms and support.
After being free of meds for depression for about 3 years, he came to me last summer and asked me to hook him up with a "shrink". He was having a hard time coping with life and just didn't want to live like this anymore. Proud that he recognized this in himself, I called Behavioral Health Services, BHSI, which is the only mental health faciltiy fully covered by my Blue Cross Blue Shield plan. I explained that "M" had a history of depression and that he wanted to meet with a doctor that could prescribe antidepressants. First, I was told that because of BHSI policy, "M" would first be required to meet with a psychologist for an evalutation. Although, I objected, I finally agreed, because BHSI would not bend their policy. So, I made the first available appointment, one month from when I called.
"M" met the phycologist,and of course, was referred to the doctor. I setup the first available appointment. This time five weeks later. On the day of the appointment, I left my job early, with plenty of time to spare, and while driving across town, got caught in a severe thunderstorm which caused a traffic delay. I finally picked up "M" at home and proceeded to the BHSI office. As luck would have it (or not), we got stuck at every red traffic light on the route. We arrived 10 minutes late for a 1 p.m. appointment. When we checked in, the receptionist said that we were late and would need to reschedule. (Another 4-5 weeks out) I was so angry that I began shaking and crying. I did challenge them with questions like "What if my son is suicidal?" It didn't matter; there was nothing they could do. Because I knew I couldn't remain rational, I took my son and drove home. My son decided that he'd just deal with it as best as he could, and luckily he has. This is only the most recent incident involving my son's mental health care. I am appalled and yes, horrified that people (especially children) cannot get the health care they deserve; especially with the amount of money that we pay out in health premiums for this coverage. -K.D., Coon Rapids, Minn.
Minnesota definitely lacks mental health care for children. What is also surprising is the medication available for treatment of mental health issues. Many of them have been tested only on adults and yet continue to be prescribed for children. The side effects of these meds are almost worse than the mental health condition itself.
This is our experience: For the past 4 years our son has been gaining weight at a phenominal rate. The average weight gain for a child is 10 pounds per year. Our son has been gaining 4 times that amount - averaging 40 pounds per year. About a year ago he began experiencing anxiety and panic attacks. Still concerned about his weight and the possibility that his anxiety and panic attacks were related, we insisted his pediatrician refer us to a endocrinologist specialist. We spent one day with the specialist who ran the basic blood tests, did a bone scan, bone aging test, and that was it. The specialists response essentially was - we're lazy and need to get more active. This didn't set well with us since we have a membership at a gym (YMCA) which we utilize at least 3 times a week usually 4 to 5 times a week, more in the summer. In the report he sent to our son's pediatrician indicated our son has Insulin Resistance Syndrome. Information we were told only when we insisted on seeing the report from the specialist. That aside....
Over the course of the past several months, our son's condition with the anxiety and panic attacks continued to worsen. Over the summer, there were days where his attacks were so severe that I wasn't unable to go to work. When school began this past fall, his attacks prevented him from staying in school. He was missing on average 3 and half days each week. The school we had him enrolled at knew very little about special needs. Everything they promised they could do for him to keep him in school were idle promises. Our son was falling behind in his school work. Because the school was uable to deliver, we had to change schools.
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After 3 additional emergency room visits, which we had asked each time to have him admitted, we were informed that the mental health ward at our local hospital does not take pediatric patients.
- J.P., St. Cloud | |
We called his pediatrician to see what could be done. He prescribed Atavan to help take the edge off the panic attacks so he could stay in school at least part time and until we could get in to see a councilor for further evaluation and testing.
After a week, all of the counciling/mental health agencies (including the behavior access crisis center) we were refered to had not called us back. Several messages and several days later found us in the emergency room with our son having a major panic attack. He had completely frozen and was not able to function. He had hyperventilated to the point where oxygen had to be administered. We were again referred to an agency who like all the others did not return our calls. Even with the emergency room referal - we still did not get an appintment let alone them returning our calls.
After 3 additional emergency room visits, which we had asked each time to have him admitted, we were informed that the mental health ward at our local hospital does not take pediatric patients. There were only 3 hospitals in the state that do accept or have facilities for pediatrics in their mental health wards: Fargo, or 2 others in the twin cities. We were also informed that there is a waiting list to get in to each of these hospitals. The wait could be as long as 3 to 4 months.
Our son has Insulin Resistant Syndrome. It's a vicious circle. The syndrome causes him to gain weight uncontrollably. But there is no treatment available for children. The only treatment is to loose weight. With the excess weight gain and the syndrome, his adrenal glands are malfunctioning causing him to experience pseudo-puberty. The adrenal glands and pseudo puberty are to blame for his anxiety and panic attacks. The medicine they are using to treat the anxiety and panic attacks causes excess weight gain. After a very strict diet and excercise program all through the spring and summer, by October our son had lost 11 pounds - a tremendous milestone for the syndrome. He was down to 186 pounds. Last week, he weighed in at 212 pounds. All the weight he has gained since he started on the meds to treat the anxiety and panic attacks.
Two weeks ago, the pediatric psychologist who presecribes and monitors our son's medication, changed his prescription to Prozac, he said to help with the wieght gain caused by his previous medication. Within a couple of days our son turned violent, threatening himself and others including taking a knife to us. He became hyper - literally bouncing off the walls. This is so out of charactor for our son. We were told by the doctor that these are not common side effects of the Prozac drug. We would need additional counciling. After several days of trying to get answers from the clinic about the Prozac drug - I finally took matters into my own hands and called the pharmacutical company myself. I learned a great deal. One is: Prozac has not been sufficiently tested on children. Two: It can cause serious depression leading to suicide, aggitation, iritability, and extreme aggression in adults. For adolescence (adolescent was described as a child over the age of 12 in their ! literature) the results are similar. Very little was known about the drugs interaction/effect on children under the age of 12 and urges caution and weekly monitoring if ever prescribed to a child.
So now here we sit with a choice of medicines that offer trade-offs that are less than desireable and may not be safe for children, clinics who deny this information about the drugs, and no other place to go as too few communities have adequate mental health care for children and those that do have a waiting list a mile long.
We are managing one day at a time. We are not always able to trust doctors to be honest nor open to questioning, especially when we don't understand what is happening. But as a family we have learned to cope and rely on each other for our support - and our own resourcefulness to get answers. -- J.P., St. Cloud, Minn.
My son suffered from a severe anxiety disorder and bipolar disease. He also had a genetic heart problem and serious asthma and spent much of his childhood in and out of hospitals. When he was in his 20s, both his depression and his anxiety became unmanageable and he began to self medicate with alcohol. He went into treatment, but this did not address the whole problem. After a serious suicide attempt, he was given 12 ect (shock therapy treatments). This happened in the mid '80s, almost 20 years ago.
He went to school, got a job and worked with a doctor in Green Bay to deal with his anxiety disorder. He was given medication to control it as well as therapy and did pretty well for a number of years. He still had bouts of depression, but could manage them.
In 1997 he had a severe bout of depression and lost his job and his insurance. He moved back to Minnesota and entered the nightmare of mental health services here. He got a job with benefits, but was basically given medication when he talked about his depression and anxiety. The medical people sent him into treatment again, and while his chemical dependency was a factor, it was not the only one. In fact, a counselor at Fairview Riverside stated emphatically that he would never conquer his chemical dependency or deal with his depression until his anxiety disorder was addressed. Needless to say, it never was.
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On Sunday morning, the police came to my door to tell me that my son was dead...
- M.M., St. Paul | |
He was given increasing numbers and varieties of medications, many of which have been cited as contributing to suicide. He had several more attempts, one resulting in a five-day coma, after taking a veterinary medication. At one point, he was so disoriented that I took him to an emergency room and the doctor who admitted him said he didn't know how he could function inside that "chemical stew". He was also given more shock treatments and sent home on the bus. Completely disoriented, lost. It took me two hours to find him. I have documented all the medications. He became very anxious, paranoid and frightened.
In August 2001, he was transferred from United Hospital psychiatric ward to Unity Hospital in Fridley, for CD Treatment, again. His records make no mention of his other problems. In fact, his medical records did not go with him to Unity nor did anyone request them. When I read the records, he was described as a 65-year-old 6-foot-1 inch African American man. He was 5'8" 42-year-old white man. His counselor at Unity threatened him, made disparaging remarks and when I talked with him, he threatened me.
My son left the hospital, walking and taking buses until he got back to St. Paul. He was incoherent with fear and anxiety and overmedicated. This was on Wednesday. He left my house, along with his woman companion, who also suffered from depression, and went to his apartment. The hospital never knew he was gone for two days, until I called them.
I tried to reach him and his friend but they didn't answer the phone or the door. On Sunday morning, the police came to my door to tell me that my son was dead, along with his friend. Two people dying together, using their amazing collection of prescription medicines, all prescribed by licensed medical professionals. They might as well have prescribed a gun.
This is a very brief description of several horrible years. My son was not able to advocate for himself. I did much of it. The system is so fragmented, and no one communicates with anyone else. There is never a whole picture of the person and the problems. Charts are filled with errors, or just plain blank. Medications are prescribed willy-nilly, without thought or research into the various interactions.
My son was very bright, witty, worked for the Minnesota Senate, and was well loved by many. I was shocked at the number of people at his funeral and the comments. He had a disease, which was made worse by the present fragmented and incompetent mental health care system. - M.M., St. Paul, Minn.
My heart breaks when I read the stories submitted by others regarding the fractured mental health system in Minnesota. I would echo their sentiments, and yes, their experiences, to some degree. But I wonder why we have a success story with our 15-year-old son. After testing for learning disabilities and receiving appropriate diagnoses, why did we get the special ed support from the public school system? Why, after a visit to the emergency room and my insistance over the course of eight hours there, did the system find a bed in an adolescent psychiatric hospital--even though I had been told that there were no beds available for several weeks?
Why, after a week in that hospital, did my son then "earn" a place in a five-week day treatment program for adolescents? Why do we have an excellent adolescent psychiatrist and an excellent adolescent psychologist? Why do we have a successful regimen of medications? Why does my son receive excellent special education in the public schools? Why are we able to get a doctor's appointment when we need it?
When I try to answer these questions, I come to a few conclusions -- accurate or not. I wonder if my son benefits from his mother's relentless pursuit of the best care available? Or her ferocious fight for his survival. Or perhaps we are merely the beneficiaries of excellent medical insurance coverage. Is it possible that the mentally ill of Minnesota are invisibly ranked according to the competence of their primary caregivers and the coverage provided by their insurance companies? This smacks of better care for the rich and smart. Though the thought makes me uncomfortable, I'm not so uncomfortable that I would want to give up any of the benefits (privileges?) my son enjoys. Instead I believe that the poor and not-as-smart deserve the same excellent care that my son receives.
How to mend this rip? I don't have any answer other than a nationalized health care system that provides adequate and excellent coverage for all. -- S.H., Duluth, Minn.
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