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June 2009

 

The Growing Problem of Cognitive Disorders in Corrections

By Bruce Gage

The growing number of mentally ill in our correctional systems has been well-publicized and is generally well-accepted at this point.  It is perhaps lesser known that there are large numbers of persons with various neurological or neurodevelopmental conditions in the correctional system as well.  Often unrecognized are those with common conditions such as fetal alcohol spectrum disorders (FASD) and traumatic brain injury (TBI).  These groups share a similar profile in terms of the kinds of problems they have.  Moreover, they are preventable problems that are having substantial adverse impacts on both the sufferers and our community.

Those with other types of developmental disabilities, often genetic in origin (and thus less preventable), are also being noted with increased frequency in correctional settings, though these will not be the focus of this article. 

Fetal Alcohol Syndrome (FAS), the most severe form of FASD, is estimated to occur at a prevalence of 0.5 to 2.0 cases for every thousand births. However, some researchers have found much higher rates using so-called active prevalenceActive prevalence uses active cases in treatment as the foundational measure. measures.

Clarren, et al1 found a rate of over 3 per thousand births in one county in the state of Washington, and those having FASD may be five times more prevalent.2  Altogether, FASD may be 10 times as prevalent as Down Syndrome; meaning about 30,000 babies born each year suffer from a FASD.  TBI is also increasingly common.  Of note, the ages of highest risk for TBI are up to 4 years old and between ages 15 and -19.  Around 1.4 million Americans suffer a documented TBI annually; 50,000 die, 235,000 are hospitalized, and 1.1 million are released from the emergency room.3  Clearly, these are vast numbers.

In addition to craniofacial abnormalities (which recede to some extent after adolescence), maternal alcohol use can lead to malformation of the brain, learning disabilities, problems with attention, low IQ and various psychiatric disorders, among other issues.  But most germane for the correctional population are the related behavioral problems.  For instance, around 60% of those with FASD have trouble with the law and 40% spend at least some time in confinement (correctional, mental health or drug/alcohol treatment).  About 50% engage in repeated sexually inappropriate behavior.4

Similarly, traumatic brain injury (including closed head injury not necessarily associated with loss of consciousness) is associated with behavioral problems in addition to a wide array of other difficulties.  These disorders typically manifest as impaired executive function giving rise to poor planning, difficulty anticipating outcomes, and, perhaps most importantly, impairment in impulse control and poor social skills.  This leads to behaviors that are either themselves criminal or to behaviors such as drug and alcohol use that predispose to criminal acts and further impair executive functioning. 

Too often, these behavioral problems stemming from TBI or FASD are attributed to antisocial or other personality disorders or simply to moral turpitude.  Many of these people get into trouble with the law or in school from a young age.  They often come from poor or disadvantaged settings where treatment or other interventions may be minimal, and even the presence of cognitive impairment is frequently unappreciated.  Behavioral problems and the fact that academics are often difficult for the cognitively impaired can lead to other psychological problems related to poor self-esteem.  People with FASD or TBI, and cognitive disorders in general, may then turn to social roles where they can find acceptance but which are often centered on drug use and/or criminal attitudes. 

While those with severe conditions may not be prosecuted because they are too impaired to stand trial, many others do not exhibit obvious cognitive impairment on routine clinical examination, especially when the emphasis is on the detection of serious mental illness rather than cognitive impairments.  If those with FASD or TBI are found competent to stand trial, the question of their mental state at the time of the offense may arise.  Rarely will these types of disorders lead to an insanity defense as it generally requires a substantial break with reality (psychosis) not typical of these disorders.  The degree of mens rea, that is the guilty mind or mental state that is an element of most all crimes, might be more relevant but is rarely given proper consideration.  A discussion of the legal issues is beyond the scope of this paper, but it can be summarized by noting that problems with executive functioning are rarely considered by the law as long as the person demonstrates some ability to make choices or demonstrate restraint in some circumstances.  Mere difficulties with impulse control, even if repetitive, are generally not considered legally relevant. 

Because many people who suffer from these sorts of cognitive impairments often have early and frequent behavioral problems, they represent a relatively high risk of re-offense.  Rather than their disorders being mitigating, they may be treated as aggravating whether by virtue of the histories alone or, if the impairment does happen to be detected, because of the known associations with behavioral problems.  In general, this group of people does not tend to engender sympathy.  This is exacerbated by the general, though erroneous, belief that there is nothing can be done with such neurological conditions, a belief shared by many clinicians.  The tendency to therapeutic nihilism becomes a further reason to promote incarceration rather than treatment.  And with worsening budgetary pressures on the public mental health system it is likely that the numbers of people with these problems will continue to grow in correctional settings in parallel with those suffering from mental illness. 

In this regard, it is important to note that people with FASD or TBItend to show a limited response to punishment.  Given the rapid turnover and limited resources in jails, it is highly unlikely that repeated jailing for minor offenses will yield much change.  While the prisons have somewhat more to offer, they are not yet well prepared for working with this population, having their hands already full with a progressively more medically and mentally ill population.  Thus, it is unlikely that the current direction of our overall system is heading in a direction that is likely to reduce the frequency of the behavioral problems associated with these disorders.

Making matters worse, these are people with limited advocacy.  Coupled with the fact that their behavior is often viewed as blameworthy, it is hard to see where the change is going occur.  But many correctional administrators and clinicians are aware of this growing problem and some are undertaking an effort to better detect those with cognitive limitations.  This will be a challenge for jails that may not have the time or resources to do the kinds of testing necessary to detect those that are not already identified as cognitively impaired. 

Unlike people with serious mental illness or more severe cognitive limitations, who are more readily detected with a clinical interview, those with milder or less obvious cognitive limitations may appear to require no specialized services in the correctional setting.  Yet we may believe that they merit more attention for a variety of reasons including the potential for being victimized, their frequent infractions and high recidivism owing to the above-mentioned executive function limitations.  They also pose a challenge for correctional rehabilitation and offender programming.  Given the frequently associated learning disabilities, more diverse methods are needed than are typically available in correctional settings.  Medications hold promise for some and dramatic results, while not the norm, do occur.

TBI is somewhat more frequently diagnosed than FASD, but there are no good studies of the prevalence of these conditions in correctional settings.  One group did find that 87% in a jail population had a history of head injury and 29% had moderate to severe head injury5.  A study by Calantonio, et al6 showed that 23% of consecutive evaluations of adults in a forensic psychiatric clinic had diagnosable TBI.  They found, consistent with the above, that this population was more likely to be diagnosed as being personality-disordered, especially antisocial.  Similarly, Fast, et al7 found that 23.3% of consecutive cases sent for juvenile forensic mental health assessment clinic had FASD, so clearly the number is substantial.  Whatever the actual number of those with TBI or FASD entering the criminal justice system, it is probably comparable in scope to serious mental illness and yet largely silent. 

What is encouraging is that the combination of early detection of FASD and being raised in a stable environment can reduce the odds of a bad outcome by 2-4 times4.  Given that up to 80% of those with FASD do not grow up with their biological mothers4, the challenge and the charge is clear.  Similarly, aggressive rehabilitation and ongoing services, especially cognitive and behavioral strategies and medication, reduce the negative outcomes in TBI.  But most with mild to moderate TBI receive no specialized services despite the well-documented potential for long-term problems.  More must be done early in life to secure a better future for those suffering these disorders and for society.

As a clinician going into prisons, it is clear that the problem is substantial.  Virtually every day in the prison clinic there is a man or woman presenting for mental health care that has the stigmata of FASD or clear evidence of TBI, yet few carry the diagnosis.  Raising awareness in the community and in corrections is critical if we are to better address their needs—hopefully prior to incarceration.

Dr. Gage is currently Chief of Psychiatry for the Washington Department of Corrections.  Prior to this post he spent many years as a forensic psychiatrist including serving as the program director for the Forensic Psychiatry Fellowship at the University of Washington.  Dr. Gage's interest in neuropsychiatry, including traumatic brain injury and FASD, extends back to his days teaching neuroanatomy and working as a neuropsychiatrist at a VA hospital in the UCLA system.

REFERENCES

  1. Clarren, S.K.; Randels, S.P.; Sanderson, M.; and Fineman, R.M. Screening for fetal alcohol syndrome in primary schools: A feasibility study. Teratology 63(1):3-10, 2001.
  2. May, PA & Gossage, JP.  Estimating the prevalence of fetal alcohol syndrome:  a summary.  NIAAA website.  http://pubs.niaaa.nih.gov/publications/arh25-3/159-167.htm.  Accessed 4/24/09.
  3. Brainline.org. Accessed 4/24/09.
  4. Streissguth AP, Bookstein FL, Barr HM, Sampson PD, O'Malley K, Young JK, Journal Of Developmental And Behavioral Pediatrics: JDBP [J Dev Behav Pediatr], ISSN: 0196-206X, 2004 Aug; Vol. 25 (4), pp. 228-38
  5. Slaughter B, Fann JR, Ehde D. Traumatic brain injury in a county jail population: prevalence, neuropsychological functioning and psychiatric disorders. Brain Inj. 2003;17:731–741.
  6. Colantonio A, Stamenova V, Abramowitz C, Clarke D, Christensen B, Brain Injury: [BI] [Brain Inj], ISSN: 0269-9052, 2007 Dec; Vol. 21 (13-14), pp. 1353-60
  7. Fast DK, Conry J, Loock CA, Journal Of Developmental And Behavioral Pediatrics: JDBP [J Dev Behav Pediatr], ISSN: 0196-206X, 1999 Oct; Vol. 20 (5), pp. 370-2

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FASD parents daily dilemmas

by A McCormick

Its 6am, Im exhausted in bed, got to get up, before I see red.
3 FASD kids awake, making lots of din, I stagger out of bed, face a big ‘fazzy’ grin.
They run up and down, full of energy and fun, another chaotic day has just begun.
I gather my patience and count to 10, only 18 more hours of supervision.
My head is weary, my limbs ache bad, we do this 24/7, I must be mad!
Downstairs for breakfast, worst part of the day, 3 kids in ‘land zog’, brain can’t function away;
Lots of twitching n shouting, they’re out of control, need firm parenting, strict routines on the whole,
A chemist shop of medication is given to all, let’s hope it calms them, so my kids don’t fall,
The girls never stop talking, drivel in the main, demanding attention, for their gain.
Its routine, supervision, attention, being firm, forever I’m hopeful, their brain will learn
To remember things to help keep them ok, so I won’t need to nag them all each day.
It’s upstairs to wash, teeth and dress, don’t look in their bedrooms, they’re a horrible mess!
Their memory refuses to let them learn, wanting to be good, they so do yearn.
Requires total commitment to help these kids, harder for us, we have 3 sibs.
The treadmill goes round, day after day, bringing constant demands in every way.
They’re off to school, can I relax at best? No, daily appointments; health, school and the rest.
Then it’s washing wet beds, cooking special diets for them, repairing damage caused in their utter mayhem.
I’ve got a degree, once earned a lot, no chance of returning, this is my ‘spot’
Can’t work anymore, as I care full time, money is tight, almost breadline.
I use my skills to tell others “don’t drink, when babe in utero, read FASAWARE link.”
A blink goes by, still feel drained; kid’s home from school, medication has waned.
Teachers not happy, “they haven’t sat still, distracted others, they haven’t been ‘brill’”.
Playing is hard; don’t know how to share, fight with each other, don’t seem to care.
If you take them out, hold on real tight, within a second, they’re out of sight.
Items of others, for them are a ‘gift’, very able they are to quickly shoplift.
Immature, social skills, safety a low, money, maths, time, causes them such a blow.
Able in fantasy, but cant keep themselves safe, vulnerable for life, look like a waif;
Eat all day long, tummy unfilled, hyperactive, demanding, and very strong willed.
No coke, gluten, chocolate or additives to eat, big home cooked food, you cannot beat.
Over stimulation and excitement makes them high, massive frustration tantrums, I could cry.
Talk non-stop ‘rubbish’, obsessive at times, drives us nuts by this and their constant whines.
Square peg in a round hole, they so do feel, too many corners has their wheel,
They see the world differently from you and I, common sense ‘out the window’, ‘pie in the sky’!
If things don’t work, you need to change, don’t try harder, use your skill range.
Creative in art, love music and dance, if they could take turns, would have a good chance
To excel in these areas, would raise self-esteem, to compete with the rest, they’re so very keen.
Routine in the day, routine in the night, a lifelong commitment, I have given my plight.
They can’t get to sleep, cry, fidget n pick, singing at night, their energy makes me sick!
Sleeping is hard, they sleep so badly, will swap with you, for respite so gladly.
I adore my 3 kids, I love them so dearly, but going at this pace, without rest, makes me weary.
To advocate, supervise, fight for their rights, makes me ill and on tablets…probably for life.
My kids are so loving, faithful and true, rewarding to care for, I can assure you.
But I wish you could see how it is everyday, the hardest job ever, in everyway.
To the inexperienced, they look ‘just right’; misunderstand the demands of 3 and our plight,
Respite together, few others would cope, leaving us isolated, tired and ready to mope.
FASD doesn’t fit with the ‘systems’ of respite, leaving some needy, no help in sight.
Most FASD kids are cared for with dedication n love, by others, who didn’t create them from above,
Parenting kids with FASD is different from most, “techniques never work at all”, we boast.
Communication difficulties, misunderstood by many, raise Child Protection issues? But there aren’t any!!!!
Sadly some ‘professionals’, may have unfair concerns, greater understanding of FASD, they need to learn.
Understand our kids and get families supported; a greater awareness will stop fingers being pointed.
Please help us to cope with these wonderful kids, to re-energise our lives, or they’ll ‘blow our lids’,
We don’t have the luxury to relax and ‘turn off’, just to sleep, watch TV, or even cough!
FASD is for life; its hard all the way, help us to help kids, day after day.

Alison McCormick is the adoptive parent of three kids with FASD and is the coordinator of FASawareUK East.

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FASD Funding Cuts Will be Felt by All of Us

By Julie Gelo

“Budget cuts….fiscal deficits…..budget shortfalls…..conclusion of contracts…..economic downturn….lean times…..dropping revenues…..tax increases…..drastic budget cuts…..economic crisis.”

These are statements and phrases that we have all heard thrown around for the last months; before, during and after state and federal elections. Hope, fear, confusion, discouragement and frustration are all prevalent emotions – personally and professionally – as related to the housing markets, our job security, fuel prices, retirement plans, education, and supportive services for our children and families.

As the Executive Director for the National Organization on Fetal Alcohol Syndrome Washington state (NOFAS Washington), I have been watching and waiting with baited breath to see what the ramifications would be for our programs offered for individuals with FASD, their families, and community providers. For the past six years we have provided a support group for caregivers and community providers, an online email support group, a facilitated social skills group for teenagers with FASD, a friendship group for younger  school-aged children, quarterly family activities, and an annual five-day family summer camp. We have provided these programs with a combination of volunteers, in-kind donations, private contributions, and grants and contracts from various state and federal agencies. We are not a large agency with unlimited resources, but rather a group of dedicated and passionate parents and professionals. We depend on the grants and contracts in order to continue to provide services and programs to our clients and families.

Even though the 2009-2011 budget for Washington state was just recently released, numerous contracts from the previous budget have already been terminated. NOFAS Washington’s contract with Division of Alcohol and Substance Abuse (DASA) was terminated January 1, 2009. This contract provided us with the funding to offer the face-to-face support group, the online support group, the teen social skills group, the family activities, and the summer camp. It also provided funding for a one-day FASD conference this spring.

Our Board of Directors is determined to continue as many of our programs as possible in a modified model. We are working very hard to continue to offer the online and face-to-face support group with the help of in-kind donations for the facility and the teen social skills group with the dedication of our volunteer facilitators. Our family activities will continue in modified versions at venues that are free of charge such as parks or as families can contribute financially. We still held the one-day conference in Everett on May 22. But this year we were forced to charge a registration fee rather than providing it free of charge. The saddest and most distressing change, however, is that after six years there will not be a FASD family summer camp this year.

NOFAS Washington is not the only agency or program offering services to individuals with FASD and their families in this state, and other agencies are also experiencing cuts in funding and ability to provide FASD services and programs. The legislative funding to support the satellite diagnostic clinics in Everett, Yakima, Spokane and Pullman is in jeopardy for the next year; at this point, state funding for diagnostic clinics is secure only through June 30th. The Fetal Alcohol Syndrome Family Resource Institute (FAS FRI), a long-standing grassroots agency, also lost its state funding contract with DASA and was forced to close its doors after providing many years of support and advocacy. And this newsletter, Iceberg, has lost funding, though we are continuing to release quarterly online newsletters.

The budget cuts in Washington state will indirectly affect individuals with FASD and their families as well. Due to budget cuts and Medicaid cuts many pharmacies may no longer accept medical coupons for prescriptions. Since Medicaid is often the sole source of medical insurance for foster and adoptive children, these cuts could prove to be exceedingly destructive and detrimental to our families.

Restrictions in the development of adoption support packages are also going to be deep and widely felt. Policy changes have been proposed that all children in foster care, guardianships and on adoption support programs will lose all supportive programs and resources on their 18th birthday even if they are still in school or on an individualized education plan (IEP). As the majority of our young people with FASD benefit from continued educational programs into adulthood, these proposed policy changes could potentially lead to increased school disruptions, placement disruptions, and possibly more legal and mental health issues.

As distressing as these changes are for me as the director of a non-profit, they are absolutely overwhelming to me as a mother. My husband and I are the adoptive parents of eight children with FASD and we have benefited and have come to depend on the programs of these agencies. When it already feels like a struggle to provide the early intervention and stable homes that improve the outcomes for our children with FASD, diminishing outside resources will only increase this weight. We may bear this burden now, but it will be our children and communities that will eventually feel the full effect.

We’d like to hear from Iceberg readers: How are you or your agency dealing with funding cuts? Please submit your letter or article to Iceberg (link to email) and we may include it in a future newsletter.

 

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Submit an Article to Iceberg

Our goal at Iceberg is to publish current information impacting those with FASD, their families, caregivers and professionals. We strive to include a range of voices in our articles. If you have a compelling story to tell about FASD, please submit an article for our pages. Email it to iceberg_fas@yahoo.com with your article included as a Word attachment. We look forward to your contributions.

Thank you.

     
     
     
       
     

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