Opinion: Breaking the mental illness chain

January 4, 2013


My son Tim has a serious mental illness. Whenever a tragedy highlights the need for better mental health services, I wonder if policy leaders will finally enact some of the measures that would most make a difference for Tim. And for children who today are experiencing what he did years ago.

I’m usually disappointed.

Tim has had a bad outcome. He is homeless. It could be worse; he is still alive. Many are not.

Bad outcomes are the result of a chain of neglect of mental illness that lengthens over decades. We are not, however, helpless in the face of this chain. We have so many policy tools available to break it. We just need to get started.

Here are three places we could begin:

  1. Requiring behavioral health screening for all children. This would break the chain at its beginning, when the earliest symptoms of illness first start to appear.

  2. Changing special education rules to make them more responsive to mental illness. This would break the chain at its middle, when symptoms of the disease can change the trajectory of a child’s life.

  3. Redirecting funding from prisons to community mental health services. This would break the chain at its end.

Periodic behavioral health screening should be as common a part of well-child exams as immunizations. It should be a mandatory covered service in Medicaid and SCHIP (State Children’s Health Insurance Program). Every private insurer should be required to cover it, too.

Serious mental illnesses are childhood diseases. Half begin before the age of 14. If we screened every child at least once every five years, early detection could lead to effective treatment. Screening would not cost much — it would take 5 to 10 minutes and cost $10 to $25 per screen.

What it could save in dollars alone are direct medical costs that today rival those of cancer. It could also save lives, because serious mental illnesses take more than 25 years from life expectancy — 10 more than all cancers combined.

Also, not every child who is suspended or withdrawn from school has a mental illness; but every child with a mental illness has probably been suspended or withdrawn from school at least once.

Removing a child from school who is already isolated from peers should only be used as a last resort.

I would mandate that a meeting with a mediation planning and placement team be scheduled within 10 days whenever a school or a parent wants a special education student removed for behavioral reasons for at least five consecutive days. The state must be a third party to this mediation. The purpose would be to develop a new individualized education program, known as an IEP, with additional services with the input of a child’s regular health and mental health providers. If there are none, then health and behavioral health evaluations should be done, with the state picking up the cost.

If any two parties agree to the additional services, then these should automatically become part of the IEP, with the state picking up the additional cost. If the parents are not one of the parties in agreement, they can still have the right to go to due process.

And if the child isn’t already receiving special education services, then perhaps the same event should trigger an eligibility determination — because he probably needs them.

Finally, I would increase funding for community mental health services, while decreasing our reliance on incarceration to warehouse people with mental illnesses. Jails are now the largest mental health providers in the nation.

Recently, Tim sat for four months in one, waiting for a treatment bed to open. Does anyone believe that not having that bed available saved a dime?

This is a problem everywhere. States have cut $4.6 billion from mental health budgets in the past four years. Connecticut is considering further cuts even now.

If policymakers do their accounting honestly, they must acknowledge that we have gained nothing from these cuts in the short term, nor will we gain in the long term. Mental illnesses didn’t just disappear, and the cost has been too dear.

We are not helpless in the face of tragedy. But we are accountable.

— Paul Gionfriddo lives in Florida and writes the blog Our Health Policy Matters. He wrote this for the Hartford Courant.


Paul R Getto 5 years, 4 months ago

We are not helpless in the face of tragedy. But we are accountable.

Bsst point in the essay. We need to get a grip on this problem and it won't go away.

Leslie Swearingen 5 years, 4 months ago

He has a good job, and probably a very nice home, so why isn't his son living with him? Why hasn't he made arrangements for his son to see someone. I am sure that he could afford the treatment. He seems unwilling to give his own son the kind of treatment that he wants others to have. A father should be ashamed of treating his son this way. Please invite him back into your home and make an appointment with someone.

hipgrrrrl 5 years, 4 months ago

I find frankie8's comment quite naive. My sister is mentally ill and refuses to live with any of her family. She refuses to get treatment. She refuses to accept help. It is not illegal to be mentally ill but it is illegal to hold someone against their will. The only way we can get her help is for someone in the system to determine that she is a danger to herself or others. She has been hospitalized several times over the years and has even been under court order to take her prescribed meds. When she has been released and the court order has run out, she reverts back to her unmedicated state. I understand why since the side effects of the meds available for "treatment" are so awful. However, the end result is that she has every legal protection to live her life as her schizophrenic mind dictates and we have no legal right to protect her from herself. It's a sad and heartbreaking situation. We all love her and want the best life for her but can do nothing to help her because she chooses not to accept our help.

Leslie Swearingen 5 years, 4 months ago

hipgrrrl, I offer my apologies for what I now see as a uninformed comment. I really did not realize that someone would refuse to live with family, but would opt to be on the street. It must be heartbreaking and very frustrating for you to know that your sister could have a good life, but will not make the changes. I can't get into her mind to know her thought processes. I am thinking that she believes she is doing the right thing. If the side effects are that bad, I can understand why the resistance to taking them. Since there are so many with this condition I am now wondering why there is not more research into the causes, and the creation of drugs that help but do not have bad side effects.

I want to thank you for taking the time to reply to my comment. It has caused me to rethink a few things.

Ron Holzwarth 5 years, 4 months ago

Here's a list of the possible side effects of one of the most modern psychiatric medications, Invega (paliperidone), so you'll have a benchmark.

Adverse events associated with the use of Invega may include, but are not limited to, the following:

1) Parkinsonism: A degenerative disorder of the central nervous system characterized by tremor and impaired muscular coordination.

2) Akathisia: Restless leg syndrome is a disorder in which there is an urge or need to move the legs to stop unpleasant sensations.

3) Dyskinesia: Is a movement disorder which consists of adverse effects including diminished voluntary movements and the presence of involuntary movements

4) Tachycardia: Is a heart rate that exceeds the normal range. A heart rate over 100 beats per minute is generally accepted as tachycardia.

5) Headache

6) Somnolence: Is a state of near-sleep, a strong desire for sleep, or sleeping for unusually long periods.

7) Anxiety

8) Hyperkinesia: An abnormal amount of uncontrolled muscular action; spasm.

9) Extrapyramidal disorder: Any of numerous neurologic disorders characterized by disturbances of muscular movement, distinguished as either hyperkinetic (conditions such as chorea, dystonia, hemiballismus, myoclonus, stereotypy, tic, and tremor) or hypokinetic (conditions such as akinetic mutism, psychomotor retardation, and the stiff-man syndrome).

10) Dystonia: A neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.

In addition, Invega was shown to induce orthostatic hypotension and syncope in some patients because of its alpha-blocking activity. Thus, it should be used with caution in patients with known cardiovascular disease, cerebrovascular disease, or conditions that predispose the patient to hypotension.

And, this is a new drug that just came out, FDA approval was in 2006. The older ones were much, much worse. But, not everyone that takes the drug has those problems, but they can occur at any time.

hipgrrrrl 5 years, 4 months ago

Sadly, the system is terribly broken. When my sister had a diabetic ulcer on her foot and was delusionally talking to me about cutting the foot off to rid herself of the ulcer (see schizophrenic mind reference above), we called her then-social worker and they would do nothing because they had not been privy to our phone conversation and didn't actually hear her make those statements. The statements she made to me were not considered a threat to herself because they had not actually heard them with their ears. We called the police and requested they do a "well-person check", which they did. However, my crafty sister showed them the wrong foot and they went away, telling me they didn't know why I was worried. Later, when she was finally admitted to the hospital because she was starving herself due to delusions of inherent evil in food, they found a terrible festering wound. Thankfully, she did not attempt to remove her own foot, but the story should provide some clue as to the roadblocks encountered by families who would like nothing better than to protect their mentally ill members from themselves. It ain't easy. At that time, she remained in the psych ward for almost a year - which is a clear indication of how out of it she was because believe me, they try to move them out of there as soon as possible. She remained on her meds for about a month and for the last year has been off them, refusing to "allow us to poison her" and has been steadily going downhill. She has recently cut off all contact with all of us - probably because part of her recognizes how insane she currently is and she is fearful that we will have her committed - which is something that we clearly can't actually do. Being in a mental hospital is a terrible and terrifying experience and I don't blame her for not wanting to be there. Unfortunately, her fear has cut her off from the people that love and care for her the most.

Her story is not unusual. There are hundreds of thousands families out there who have had the same decades long struggle we have had in trying to help my sister - and there are stories that are worse than hers. She is, however, very protected by the law and her "rights" trump her well-being.

kuguardgrl13 5 years, 4 months ago

The writer also doesn't say how old his son is. If his son turned 23 before 2010 when Obamacare went into effect with 26 being the cutoff for children (and also if the son was not a student which seems likely in this case), then he would not be on his parents' insurance. Treatment would be horribly expensive unless he got on Medicaid. My brother was a college student with anxiety before Obamacare. Thankfully he lives in Massachusetts where they already have had a system like Obamacare. Obamacare makes it much easier for parents to help their young adult children if necessary. As long as the child doesn't have a job that has its own benefits, they can be on their parents' insurance until 26. I'm not sure how it impacts young adults who were previously ineligible, but I'm sure the insurance companies don't make it easy.

I'm not sure I agree with the writer about scanning every child. Perhaps what we need to do is better train teachers to look for early warning signs and have a system in place to inform and assist parents should a child be diagnosed. Many parents have a hard time believing that their child is anything other than normal. When I was a young child in the mid-90s, they wanted to test all of us for ADD/ADHD. They tried to diagnose my brother, but my mother refused to believe them. I think the same might have happened to me. You won't be able to diagnose every child that needs one, and the chances of over-diagnosing are high. They tried to say that every kid in the 90s had ADD/ADHD. Some of us do, but not all. Don't try to label every kid with a mental illness.

verity 5 years, 4 months ago

I'm sure Mr Gionfriddo didn't mean his plan as an end all response to mental illness but as a place to start the conversation. And obviously it's a conversation we need to have and to move forward on.

Just a few thoughts.

  1. All drugs have side effects. Psychotropic drugs can be particularly bad and often a mentally ill person will stop taking their medication for any number of reasons. It is my opinion that medications of all kinds are over prescribed, and, if possible, other methods should be used. (I said "if possible.")

  2. Traumatic experiences can bring out latent tendencies or genetic predisposition toward a number of disorders, PTSD certainly being one of the most obvious.

  3. Why does mental illness seem to be more of a problem now than it used to be? I know it often wasn't diagnosed medically, but I also know from experience in my family that it was somewhat contained within a close-knit community and public pressure kept some of the worst behaviors in check. However, the unfortunate side effects were that the learned behaviors and resentments have been passed down long after the original people died.

It is not going to be easy to address this problem because it's even less straight forward than physical illness, but we owe it to ourselves and our children to do it.

hedshrinker 5 years, 4 months ago

Treatment interventions should begin with low'tech stategies/lifestyle change, except in crisis situations which require immediate efficacy which pharmaceuticals bring. We are as a culture too quick to rely on meds alone b/c behavioral interventions take time, consistency and broad support across all the systems the client exists in (home/school/work, etc) . People get frustrated with behavioral strategies b/c they don't get fast results and often abandon them for drugs...ask people how those weight-loss/more exercize resolutions are going in February... Yes, most practitioners know that people may live a long time with an unexpressed inherited tendency for biologically based psychiatric illness, but that gets triggered by crisis exposure, severe stress and developmental crises for which the person does not have the skills to solve.

hedshrinker 5 years, 4 months ago

I commend Mr Gionfriddo for this comment; unfortunately I've worked with many heartbroken parents, esp of adult children who are at risk constantly, but b/c they have achieved majority can make their own injudicious decisions. I agree with mental health screening being part of regular pediatric assessments, but the typical yearly physical esp with youner kids depends heavily on parental report...and many parents are not good observers or reporters of their children's mental health status. Mental health problems and treatment are still highly stigmatized and many of the public are ignorant, defensive and resistant, doing their kids and the schools in which they act out a great disservice. I will spare you my rant about healthcare funding and parity for mental health services, but you probably get my drift. Thanks to kuguardgirl for recognizing the contribution the Affordable Care Act has already made in extending healthcare to millions even before it's fully implemented. Don't put screening off on classroom teachers; yes they have good input, but they are completely overwhelmed already...we need much better funded professional mental health staff in schools than we currently have. The withdrawl of funding for community mental health is a monstrous nightmare that we are only beginning to understand the consequences of. The writer is totally correct that jails and prisons are now "treatment" facilities for people whose illness puts them in the path of the law. Thank you frankie 8 for your public declaration of limited knowledge about parents' role in caring for their ill offspring...so few people on this board ever acknowledge they wrote in haste and without all the facts...kudos to you for that.

Carol Bowen 5 years, 4 months ago

Having a mentally disabled adult living with his/her parents is not easy. Our daughter lives with us and does quite well within a family structure. She is not covered by our insurance. She lives on Social Security Insurance and some sort of state insurance. She has two children. Her assistance barely covers their needs. We are elderly. What will happen when we are gone? We are doing our part. Mental health services are woefully inadequate.

verity 5 years, 4 months ago

I've no doubt you are correct, but we still need to figure out how to deal with these traits in the society we have today.

Maybe, since mental illness has such a negative connotation and is often physically-genetically based, we should start by using a name that better fits the situation---but not some silly euphemism.

Carol Bowen 5 years, 4 months ago

Could it be that everyone else is lethargic with only average IQ? At one time, energetic kids were considered precocious. I don't mean to minimalize the disorder, but we do spend a lot of effort focusing on conformity. That's not good for a child's self esteem.

verity 5 years, 4 months ago

hear_me, you certainly got that right. One has to have a pretty strong sense of self to get past the pressure to conform.

One might take that a step further and say that some "mental illness" probably comes from the pressure to conform and be somebody that you're not. I'd be willing to guess that a lot of it does.

verity 5 years, 4 months ago

I know a mother who, many years ago, asked the doctor about medication for her rather hyper, dyslexic son. The doctor said he would give her medication so she could deal with it but wouldn't give the child any. I don't think she took the offer, but it highlights the fact that the behaviors of one person affects the whole family and their behaviors, often coming from or causing dysfunction in other family members. The whole family unit is generally going to need some kind of therapy and needs to be aware of what they might be doing to make situations worse.

Resentment and stubbornness can mean that no one gets needed help and the problems continue throughout generations.

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