August 29, 2004

Surviving the Five Fears

Dear Average American Citizen,

As a parent of a son with a neurobiological disease, specifically Paranoid Schizophrenia, I live with my own set of fears. Granted my fears pale in comparison to the level of fear that conjures the clinical state of paranoia. I try to imagine what it is like for my son, but the best I can liken it to from an experiential standpoint is living in a constant state of fight or flight. I usually prefer to add feign to the fight or flight theory because I find that many of us, if given the right set of circumstances will turn to feigning whatever is necessary to survive a life threatening situation as well.

Today I am referring to five earth shaking fears that all parents of the pervasively mentally ill live with every day. How we manage to suppress these all too real possible outcomes well enough to manage the daily makings of our lives is beyond me. But we do somehow. It is just another testament to the will of the human spirit if you ask me.

Staying in today helps. But there are always moments when our focus gets sidetracked. There are also events that can occur that have the power to ressurect each and every fear into a direct line toward the images of our worst nightmares, stringing together one imediate thought after another. Shaking and waking us up to our reality like lightening. Hearing about the tragedies of other parent's children is certainly one of them.

We live every day, at least on some level, no matter how focused we are, in fear of what will happen to our loved ones.


The hardest moments are when we allow ourselves to think about what life will be like for them when we are gone.

Today I am thinking of suicide. The possibilities of it. I can't help it. Another member of has lost her precious son to suicide. It's all right here in my lap and it won't go away. We've lost three to suicide in the last year.

I am a suicide survivor. So this fear for me is also founded in actual experience. I know it really does happen. I don't get to deny. I know what it feels like to be left here without the person I love. What it feels like to constantly ask the question 'What if?'. I know all the self doubt, the self blame, the impossible search for comfort and the memorized version of what I have had to tell myself to just get myself off the hook for one day. Some days it was hard to do for just one hour. Placing the blame on others ate up more days than I can bear to remember. I've survived the logical versus the emotional inner battle. A battle I have never completely won in 31 years. I have survived it. That is all. Logically, I know it is not my fault. Emotionally, the answer to 'What if?' will never come. Ultimately, you learn to live with the big fat question mark and the incredible yearning for just one more chance. Forgiveness is the only answer. Forgiveness for myself if I did contribute in some way, forgiveness for others who contributed, forgiveness for my loved one who didn't stop the train of thoughts that led to his demise.

Suicidal ideation is a built in situational response for the psychiatrically disabled. The desire stems from the realization and awareness of the limitations these types of disabilities and their remedies (or lack thereof) have placed on their future. The loss of dreams, plans, and whatever they consider to be normal can create such a loss of hope that there seems no where else to turn. The most critical period for any parent to be on the look out is when their son or daughter is gaining stabilization and insight into their disease.

I have no doubt the stigma of this illness contributes enormously to the desire to end ones life. None. Especially in the case of schizophrenia.

But there is another risk for suicide that we all live with. The voices. Their commands. The auditory hallucinations alone have been responsible for the loss of too many of our children. This scenario induces probably the worst sense of powerlessness any of us might ever come to know. This train of thought is not in their control when they are psychotic.

The idea that a disease can hi-jack our children's minds and force them to do things they would ordinarily never even consider is infuriating. Senseless. Devastating. It haunches it's hind legs and gnarls at us.

I could get preachy here about med compliance, hypervigilant watches, symptom management, suicide prevention tactics, and really pour it on thick. But I'm not going to.

Most of the time, we hear about the successes. Going back to work, going back to school, stabilization and recovery.

But I just can't help but wonder how many more have to die before we come up with medications with more tolerable side effects and more effective control of break through symptoms? Before we come up with better treatment and better services for some of the most vulnerable of God's children in the world?

So today, the perrennial presence of that axe waiting to be hurled into my back,
isn't so easy to suppress.

My son just stopped by to drop off some things. I gave him a big hug. I told him how much I loved him and how much I missed him. That I was looking forward to our day together tomorrow. I held on to that hug a little longer than usual. I breathed him in a little deeper when I kissed his cheek. I don't know what this damned disease has in store for me any more than any other parent does. I only know one thing. It could just as easily have been my son.

Posted by Doe at 10:06 PM | Comments (4) | TrackBack

August 04, 2004

On Why We Need a Blanket of Awareness on Mental Illness

Dear average American Citizen:

Every one's child is at risk:

"Statement of Carol Carothers of Augusta, Maine on Behalf of NAMI (The National Alliance for the Mentally Ill) Before the Governmental Affairs Committee, United States Senate on Juvenile Detention Centers: Are They Warehousing Children with Mental Illnesses?
July 7, 2004

Chairwoman Collins, Senator Lieberman, and members of the Governmental Affairs Committee, I am Carol Carothers, the Executive Director of NAMI Maine, the Maine state chapter of NAMI -- the National Alliance for the Mentally Ill.

I am also the proud recipient of a 2004 Robert Wood Johnson Community Health Leadership Award for my work to improve conditions for Maine�s inmates living with mental illness and co-occurring substance use disorders.

First, I would like to thank you for providing me with this opportunity to testify today about an issue that is of great concern to me and families across the state of Maine � the warehousing of children with mental illnesses in youth detention facilities.

I have reviewed the report released today titled The Incarceration of Mentally Ill Youth Waiting for Community Mental Health Services in the United States -- and can share with you first hand from my experience working in jails and prisons and contacts with youth living with mental illnesses and their families that the findings are accurate. The sad truth in Maine and nearly every other state in our country is that youth with mental illnesses are being held in juvenile detention for the sole purpose of awaiting mental health treatment and services. It is hard to imagine a worse place to house a child that requires healthcare treatment and services for their mental illness. Surely we would not dream of placing a child with another serious illness, like cancer for example, in a juvenile detention center to await a hospital bed or community based treatment. It is outrageous that we do this to children with mental illnesses, as young as 7 years old. This takes an enormous toll on the child and the family.

Rather than only share family stories on this crisis, I would ask you to read a copy of The Portland Press Herald�s three part series titled Castaway Children (August 2002). I have provided copies of this series for the committee and the record. This series tells the compelling stories of how the lack of adequate mental health services in Maine has dramatically impacted many children and families, often with tragic consequences. The media has reported on similar stories in many other states � and the report released today on incarcerating children with mental illnesses makes clear that the lack of adequate and appropriate mental health services for youth and families is a national crisis.

Children and Families Are Suffering Unthinkable Consequences from This Crisis
My first involvement with mental health and the criminal justice system came in response to the death of an 18 year-old youth with co-occurring mental health and substance use disorders. This young man had fallen though the cracks for years � no one had intervened or properly diagnosed or treated his mental illness or his substance use disorder. Ultimately, he hung himself in Maine�s most restrictive prison -- the super-max. The incredible tragedy is that he fits right within the confines of this report � he was in the super-max only because he was suicidal and no hospital bed could be found for him and not because of any offense that he had committed. What an unfortunate loss of a young life, particularly when today we have made great scientific strides in understanding how to properly diagnose and treat mental illnesses in youth and adults.

There have been plenty of other cases with unthinkable outcomes. Recently, Maine settled a lawsuit on behalf of a child committed to the youth center at the age of 13. At that time, he was suffering from depression and suicidal ideation. He was held in isolation for 152 of his first 240 days. Because of the severity of his illness and the lack of proper treatment, this child was committed to a youth center five times and each time this pattern of isolation continued. As one would expect, this child�s behavior deteriorated and his symptoms of depression, aggression, and eventually self-mutilation, increased. This led to more periods of isolation as punishment for his poor behavior � he was spiraling deeper and deeper into his illness. A juvenile justice center was hardly an appropriate environment for a child suffering from a serious mental illness.

I spoke to a mother last week, who began her quest for help for her son with mental illness when he was in junior high school. The school system responded to his bipolar illness by insisting that there was nothing wrong with him, refusing to provide special education services, and expelling him when he failed to follow school rules. His mother nearly lost her job because she was frequently absent from work to care for him, and her other children begged her to kick him out of the house. At age 12 when he first entered the juvenile justice system, the courts responded by incarcerating him because they also were not trained to recognize his mental illness nor did they understand the research showing that their approach would make him worse, not better. And the youth center where he was locked up contributed to his down-ward spiral by placing him with older juveniles who taught him advanced criminal behaviors. She said, if I could ask for anything I would ask them � what money did you save by denying my son mental health treatment and services? He could have had a good school experience and would have been thriving now. Instead, the family suffered, he suffered, and I bet it cost significantly more money to treat him in this inhumane manner.

One of the moms in our support group has a 13 year old son who was in a residential school program and doing well. However, she moved north, and her son was supposed to transfer to another program closer to her. The plans to link him to new services fell apart, and he ended up with nothing -- no psychiatrist, no case worker, no medications, and no therapist. As one would expect, he fell apart and landed in juvenile detention, where he still is, weeks later. And, what's different since he landed there � he NOW cuts himself and has learned negative behaviors that are likely to make his reintegration into the community more difficult � another compelling example of why it is such an inappropriate environment for kids with mental illnesses.

Many moms inform me that they have been told to either give up custody of their child with a mental illness to obtain services or the state will come and take their healthy children away and put them in foster care because of the behaviors of the ill child and the potential for harm caused by the symptoms of that illness. These are parents who love all of their children and have depleted their resources to try to get mental health services � what kind of a choice is that for a parent who loves their child and is desperate to secure services?

Juvenile Detention Centers Are the Worst Possible Environment for Children with Mental Illnesses
In criminal justice facilities the symptoms of mental illnesses are often misinterpreted by inadequately trained staff as disobedience, defiance or even threats. I have seen this first hand. Often well meaning, but untrained corrections� staff, respond to these behaviors with anger, discipline or even force. When staff are allowed to resort too quickly to threats and force in the face of non-compliant adolescent behavior, minor incidents escalate and the risk of harm increases for both the child and the officer. Many of the techniques used in correctional settings -- like prolonged isolation and restraint -- actually lead to increased, not decreased acting out and self-harm, particularly among youth with mental illnesses.

It is wrong to place children with mental illnesses that require treatment into juvenile detention centers where the symptoms of their illnesses significantly worsen and their long-term outcomes become much bleaker. These are environments almost guaranteed to exacerbate their mental illnesses. Children with mental illnesses belong in therapeutic treatment centers. Imagine the message that we are sending to these children when we house them in juvenile detention while they await treatment for their mental illness � it has a dramatic detrimental effect on these children.

Additionally, when a child is housed in a juvenile detention facility, parents experience a complete loss of involvement in their child�s life. The philosophy of many detention centers is to limit contact of youth confined to the facility with their families. Families lack the opportunity to stay closely connected to their child at a time when the child is vulnerable and most in need of their love and support.

Juvenile detention centers have limited resources and serve complex populations. When children are detained in juvenile centers in Maine, they are housed in a single unit where 10 year olds can be housed with 20 year olds. This makes educating the child and providing for their individual needs extremely difficult. It also creates vulnerability of these younger children to physical and sexual assaults and victimization. Staff frequently spend most of their time protecting vulnerable kids from predatory kids, especially when the unit houses far more youth than they are built to house.

Finally, if youth housed in the center have undiagnosed mental disorders, which many do, then the correctional setting is slow to respond, complicating matters and leading to a deterioration in mental status, increased violations of rules, and increased discipline. The unfortunate reality is that the more experiences that youth with mental illnesses have in juvenile detention centers, the more likely it is that they will descend deeper and deeper into the criminal justice system. The initial placement in juvenile detention becomes a self-fulfilling prophecy.

Maine, Like Most States, Lacks Adequate Home and Community Based Services
Maine, like many other states, lacks anything close to adequate home and community-based mental health services for youth with mental illnesses. This is the case despite the fact that home and community based services cost considerably less than institutional care and keeps children at home or close to home and loved ones. Research shows that serving kids in the community and close to home � whenever possible -- leads to more stable lives and better outcomes and often saves the state money over institutional care. It costs fifty to eighty thousand dollars a year to lock a child up in a detention facility and about $30,000 to provide intensive in-home services for a family for one year.

Families are forced to beg for crisis services or are placed on long waiting lists for services. Families report being told that they must wait as long as one year or more for services. This has led to the unnecessary warehousing of children in juvenile detention centers. The urgency of this crisis cannot be overstated. There is anecdotal and research-based evidence that too many of the youth housed in juvenile detention centers graduate to the adult correctional system. The United States is now the country with the largest number of incarcerated citizens in the world. Four new prisons open every month to house the growing number of individuals that are convicted of crimes.

We are spending money in all of the wrong places. We need to appropriate funds to build home and community based mental health treatment and services for children with mental disorders. This will both benefit society as a whole and lessen burdens on the juvenile justice system.

The failure to adopt new policies and to consider what works will mean that growing numbers of states will spend more on their correctional systems than they do on their treatment or education systems. We must not become a nation that spends more to incarcerate children than we spend on their education or in providing them with treatment for their serious illnesses.

Unfortunately, in Maine, like most other states across the country -- mental health and substance abuse services are being substantially reduced, rationed, and eliminated as states struggle to balance their budgets. What this will surely mean is that more children and adults with mental illnesses will be locked up in correctional facilities because they cannot access the treatment that they desperately need. The money cut from mental health and substance abuse services will not be saved, instead it will be shifted to the juvenile and corrections� budgets, a waste of taxpayer money and an inhumane way to treat children and adults with mental illnesses.

What Can Be Done to Help End This Crisis?
Congress can take several steps to address this public health crisis.

First, Congress should enact the Keeping Families Together Act (S. 1704/H.R. 3243) � which is designed to help end the tragedy of forcing families to give up custody of their child to the state to access mental health services. This bill would provide grants to eligible states to develop a more comprehensive array of home and community based services. It also calls for better coordination between child serving agencies � this is desperately needed. Families report that child-serving agencies � like education, child welfare, juvenile justice and mental health � rarely coordinate services, often work at odds and overall fail to work together to help children with mental illnesses and their families. This bill would help end the warehousing of children in juvenile detention centers while they wait for mental health services.

Second, Congress should also enact additional federal legislation to help improve access to essential community based services for youth with mental illnesses and their families. This should include increased funding for the full array of mental health services needed by these youth.

Third, NAMI supports the immediate enactment of The Mentally Ill Offender Treatment and Crime Reduction Act (S. 1194/H.R. 2387). This bill would authorize funding for grants to states and communities to be used in a variety of ways to address the high percentage of youth and adults with mental illnesses locked up in jails and prisons. These include jail diversion programs, community reentry programs, and enhanced treatment for youth and adults with serious mental illnesses who come into contact with criminal justice systems.

Fourth, Congress should enact The Senator Paul Wellstone Mental Health Equitable Treatment Act -- the mental health parity legislation (S. 486/H.R. 953). There are discriminatory caps on nearly all private health insurance plans for mental health benefits. Families are often left with no where to turn when they exhaust these benefits. Families are frequently caught in a "catch 22" situation. They fail to qualify for Medicaid under the strict income limits yet even when they have private insurance coverage, their plan provides for inadequate mental health benefits.

Finally, NAMI supports the Family Opportunity Act (S. 622/H.R. 1811) � which would allow families with children with serious disabilities to buy into the Medicaid program � on a sliding cost sharing basis to provide insurance coverage for essential services.

These important legislative initiatives will help to address the crisis described so vividly in the report released today.

In closing, I would like to thank Senator Collins and Representative Henry Waxman for their leadership in presenting this report on incarcerating children with mental illnesses in juvenile detention while they await treatment.

I would also like to share with the committee that in preparing my remarks for this hearing, I spoke with families, inmates, and advocates and asked them -- what is the most important thing that I should say? The answer that they all agreed on -- make sure they understand the urgency of this issue. This is truly one of the major crises facing America today.

Children represent a fraction of the population in our country, but are 100% of our future. Ending this inhumane crisis will require immediate action at every level of government � federal, state and local. Thank you again for this important opportunity to share my concerns. NAMI looks forward to working with you on this and related issues."

Send a blanket Sept. 1st

Posted by Doe at 10:52 PM | Comments (1) | TrackBack

Blanket Awareness for Mental Illness

Dear Average American Citizen:

I've been a little busy.

It started like this when one mom wrote:

"Aids made a quilt. MADD sent a shoe to represent victims. The homeless coalition sent a penny for each homeless person.

Any thoughts on something that we could collect or assemble? A quilt was the prefect idea. Everyone sent a square

I thought of sending horse patties for all the crap we get. No! Seriously,
I wish I knew how to make a rug. We could assemble it with a piece of twine or rope, representing each individual.

PS has anyone heard an update on the STAMP

Toss the idea around. I am busy with other things right now.

I will check the national sites for Mental Illness and see if anyone is or has done anything.

This was actually my sister's idea, to make something for visual representation. This would be good for National Schizophrenia Awareness next year."

Then another mom wrote:

"I have an idea as to what we could send.

Whenever I think of all the psychiatrically disabled people of America collectively, I always think of blankets. It's a thing with me. A comfort thing.

Whenever I feel down, abandoned, or powerless, I find my self gravitating toward the linen department and looking at blankets.

It has become a symbol of care for me. Even self care. I think of the homeless and I think of blankets. In the winter, I think of electric blankets and outdoor outlets on buildings. I think of the poverty and shut off notices and I think of blankets. I think of the horrific hallucinations, which to me are nightmares with one's eyes open and again I think of blankets.

There's just something about a mother's love and tucking her kids in at night beneath their blankets that really gets to me. Like that one rendering from Norman Rockwell's Four Freedom's, "Freedom from Fear". The one where the mom and dad are tucking their kids in bed during war time. It's a universal message.

Any way, if we all just purchased one blanket and mailed it to our senators or congressmen, we'd definitely get their attention.

They come in those convenient, zippered, see through plastic covers. We could easily slip a sign inside that said "It's time to cover mental illness equally and adequately".

We could even purchase baby blankets and put a picture of our kids when they were an infant under the plastic too.

I have this image of some senator, sitting in his capitol office, with hardly no room to move, with stacks of blankets all around.

I have this vision of massive mailings of blankets to Washington. "

It grew into this:

cover my son - cover my daughter - cover my sister - cover my brother -cover my mother - cover my father - cover my husband - cover my wife - cover my grandson - cover my granddaughter - cover my grandpa - cover my grandma - cover my uncle - cover my aunt - cover my neice - cover my nephew - cover my cousin - cover my stepson - cover my stepdaughter - cover my stepfather - cover my stepmother - cover my daughter 'n law - cover my son 'n law- cover my friend - cover my neighbor - cover me

Americans are urged to mail a blanket to their Senators on September 1st, 2004.


Why a blanket? It's a universal message, it is a symbol of comfort, security and care.

Where to mail them: To locate the Washington address of your State Senator visit

What to mail: A blanket of any size with a note that reads:

"It is time to cover mental illness equally and adequately".

Blankets can be purchased in convenient, zippered, see through plastic covers.

Some individuals may wish to include a picture of their loved-one
with mental illness.

You could even purchase baby blankets and put a picture of your child
when they were an infant or toddler inside.

Others may want to send a blanket and note to show their support.

Literally, anyone can participate.

The U.S. Post Office offers a variety of different sized boxes and packaging materials.

To Learn More About Mental Illness,

or if you experience a problem locating your Senator:

Let's get them covered!

Send a blanket September 1st !

Please mail a blanket and note to show your support and to bring awareness to Mental Illness in our country.

Hug My Kids neither endorses nor opposes any political party, or any cause other than supporting the sufferers of mental illness, individuals with disabilities and their families.

Please feel free to forward, cut, copy, and paste, make hard copies and distribute, post this at websites, and remember your loved ones with a mental illness.

Posted by Doe at 09:47 PM | Comments (10) | TrackBack