Reflections on Sandy Hook and Pending Legislation in Illinois

Did you know that some parents are forced to give up custody of their children to the State of Illinois in order to secure for them the mental health care services that they need? Recently, State Representative, Sara Feigenholtz, introduced legislation in Illinois that will prohibit the Department of Children and Family Services from seeking legal custody of a child (under voluntary placement) if the child has a serious mental illness, serious emotional disturbance, or developmental disability.  HB 4739 is a long-awaited (proposed) law for families who no longer have legal rights to their children.  One such family from Plainfield was recently profiled in the article below...

December 28, 2013- Today, the Connecticut State Police released its final report on the massacre that took place a year ago at Sandy Hook Elementary.  After reading the report, I thought, "Never again." And then I thought, "This is totally going to happen again. Illinois is ripe for such a tragedy."

One year ago, in Newtown, Connecticut, a young man afflicted with a history of mental health problems opened fire on the school where his mother worked, killing 28 people that day, including himself and his mother.  And the media was quick to point out that his mother was at fault for failing to secure proper treatment for her son and for keeping guns in the same home as her mentally ill child.  There is much to discuss about the safety of guns in the same homes as children, but this is a different conversation altogether.  The shooter at Sandy Hook Elementary was a 20 year-old adult; however, he was increasingly affected by mental illness.  This begins yet another conversation about mental illness and accessibility to firearms. 

However, as recently as December (2013), the prosecutor issued a report noting that the young man "had significant mental health issues that affected his ability to live a normal life and to interact with others. What contribution this made to the shootings, if any, is unknown as those mental health professionals who saw him did not see anything that would have predicted his future behavior." If even the mental health professionals who treated this young man did not notice anything that could have predicted the tragedy at Sandy Hook, is his own mother (not a mental health professional) still to blame?

In the last year, the media has reported a multi-faceted picture of the mother and son's relationship in this particular case.  In many instances, the press holds the shooter's mother ultimately responsible for the unthinkable tragedy, as do many of the anguished parents of the 20 young victims whose lives ended so dreadfully prematurely that day.  Many have said there was more the mother could have done to prevent the events of December 14, 2012.  Should she have insisted her son be medicated?  Should she have enrolled him in a special vocational program?  Should she have taken him to regular therapy?  Should she have sought more aggressive treatment for him?  Should she have admitted her son to an institution? 

According to various reports, the mother of this troubled young man did take some deliberate steps to deal with her son's mental illness.  She quit her job to care for him.  She canceled travel plans if she felt he was unwell.  She planned to sell her house and move him to a special school in Washington. She resolved to never marry again because of the difficulties she experienced with her son.  In many ways, she tried, even if some will say it was not enough.

I am curious to know more about the financial situation of this single mom raising a son with mental illness.  As the mother of three sons with special needs, I can tell you that the costs of regular medication and on-going treatment are astronomical.  A single therapy session can cost $150 or more and may be needed several times a week.  Medication can cost hundreds and hundreds of dollars a month. Did the mother of the shooter have these resources available to her?  If not, then what were her other options?

I ask these questions not to absolve anyone from responsibility for the horrific events at Sandy Hook Elementary, but only to suggest that it may happen again.  Someone, somewhere will do this again if necessary resources are not made accessible or affordable for families challenged by mental illness. And, Illinois may be next. 

While federal funding and community support for mental illness are a national crisis, the crisis is epic in Illinois.  According to the National Alliance on Mental Illness (NAMI), during the past year, more than 994,000 adults, or 7.7% of the population in our state, suffered a severe mental illness. Yet, Illinois ranks 35th nationally in per-income spending for the treatment of mental illness, even though Illinois ranks 13th in the country in per capita income. The average expenditure in Illinois per mentally ill client is $1679 a year, which is 61% less than the average expenditure in the top 20% of states. Within the last ten years, the Illinois Division of Mental Health reported that only 3568 people in Illinois were being served by Assertive Community Treatment (ACT) teams, even though an estimated 18,628 people should have been served by ACT programs in Illinois.

If these statistics are not suggestive enough of the desperate and disparate gap between mental health needs and resources in Illinois, then the statistics from the correctional and welfare system in our state might be a better indicator of what can happen when the population is not served properly.  Again, according to NAMI, of the 14,055 people who experience homelessness in Illinois, 32% of them are severely mentally ill.  Equally as alarming is that 16% of inmates in the Illinois Department of Corrections suffer from a mental illness.  In other words, twice as many persons incarcerated in Illinois are afflicted with a mental illness than in the general population in our state.  In Cook County alone, Cook County Jail's Cermak Mental Health Services provides treatment for 1100 inmates at Cook County Jail on a daily basis, even though Cook County Jail's total daily population is only 11,000 inmates.  Furthermore, and perhaps most telling, because the number of inpatient state hospital beds in Illinois is less than 1500, Cook County Jail is, itself, the largest provider of inpatient psychiatric care in our state. 

These are the statistics that terrify the parents of children who suffer from mental illness in Illinois. There are not enough resources to treat either our youth or adult populations, and, without treatment, incarceration, homelessness, and substance abuse are frightening realities for those who grow up faced with mental illness and other special needs challenges in Illinois. Additionally, for those fortunate enough to receive inpatient treatment for mental illness and special needs in Illinois, many are victims of abuse as a result of residential placement in such facilities.  Just this month (December 2013), the Department of Child and Family Services (DCFS) announced it is investigating several reports of abuse and neglect at the Hope Institute in Springfield.

So, without safe and sufficient public resources to treat mentally ill children and young adults in Illinois, what does a parent do when private resources are also not an option? 

This is the dilemma faced by Sarah, a Plainfield, Illinois mother of four children, all of whom have a mental health or special needs diagnosis ranging from bipolar disorder, to schizoaffective disorder, to eating disorder.  Her oldest child is 17, and her youngest is 3.  She is a nurse, and her husband has had to take medical leave from his job with a major airline.  To the outsider, Sarah's situation may seem quiet and unremarkable- the mother fixing dinner while her kids play happily in the yard of her home in the suburbs.  Speak with her for two hours, though, and you will quickly realize that her family is falling into that mental health gap I mentioned-- the family who urgently needs services but cannot get them in Illinois, despite Sarah's constant, best efforts.

When Sarah's oldest son, Brian, was born, the neonatal intensive care nurse noticed that he behaved "like a baby exposed to drugs".  He was inconsolable, jittery, and did not want to be held.  He experienced stomach discomfort at 6 months old, emotional meltdowns at 2 years old, and was treated with medication by an ADHD specialist when he was 3 years old.  At the age of 4, a psychiatrist diagnosed Brian with OCD instead, and at the age of 5 another psychiatrist diagnosed him as bipolar and manic. During these formative years, Brian was medicated on and off, never finding a pharmaceutical that could stabilize him appropriately.

Once he started school, Brian's battles with mental illness became more public.  He started to draw and describe creatures with "red eyes" at school, placed his hands around the throat of another child on the playground, bit his teacher, and had frequent, psychotic episodes that endangered himself and others.  School suggested a transfer, Sarah agreed.  Brian went to a private school instead. 

Meanwhile, Sarah left no stone unturned trying to find help for her oldest son.  When he was 11 years old, Sarah applied for an Individual Care Grant through the Illinois Department of Human Services (DHS), which would give Brian in-home help or residential care, if needed.  Things then became dangerous at home: Brian threatened to kill his family; his parents had to restrain him and lock up all of the knives in the house.  Again, Sarah appealed to the Individual Care Grant administrators for residential placement, which was now necessary.  They would not affirm.  Sarah contemplated an appeal, but could not afford an attorney.  By that time, Brian had been prescribed 23 different medications.

When Brian was 14, a neighborhood girl came into the family's backyard and began to play on their trampoline.  Brian pulled down her pants and tried to restrain her.  An adult neighbor reported the incident to Sarah, who called the police.  Two weeks later, Brian assaulted his younger sister in the family's home.  She was able to escape and alert her parents who took Brian to the police.  The district attorney decided not to press charges, but Brian was sent to a medical hospital that same night.

At that point, DCFS became involved and placed Brian on hold from returning home.  DCFS also tried to negotiate an Individual Care Grant for a residential placement for Brian. Again, the Individual Care Grant was denied by DHS. The investigation term for placement by DCFS had expired, and Brian now had nowhere to go except home.  Sarah knew that this was unsafe for her family and that Brian needed serious, on-going, in-patient treatment.  However, without state support from DHS through an Individual Care Grant, she would have to absorb the costs of residential care.  According to the DHS website, the average annual cost for institutional care is $87,144.  Sarah's family had no funding for that. 

Sarah was without options.  Except for one.

Sarah had to forfeit custody of her son to the state. 

As a ward of the state, Brian would qualify for the intensive mental health treatment he so desperately needed. And so Sarah made the impossible decision that no parent should ever have to make.  She signed over custody of her child to the state of Illinois and gave up all legal rights to her son, in order to get him the help that he needed and in order to protect her other children.

Wait. What? 

As a mother, a writer, a lawyer, and a special needs advocate, this saddens me beyond all words.  But this is, unfortunately, the way it works in Illinois.  It is called "no fault custody" by DCFS.  If a parent cannot secure adequate or appropriate care for her child's physical disability, mental illness, or special need, she can be charged with abuse and neglect.  In order to avoid this in Sarah's case, DCFS classified it as a no fault custody case and assumed responsibility for Brian's care. DCFS recommended placement at an institution in Springfield, two hours away from the family's home in Plainfield. 

I do not understand how Illinois, and the nation at large, are so ill-prepared to assist those families affected by mental health issues, and special needs in general, that custody comes into question.  How is it possible that, because you are not financially well-situated, you could essentially be forced to forfeit custody of your child or face abuse and neglect charges because you do not have the resources to provide him with what he needs?  This is unconscionable, and it needs to change.

And for Sarah, her situation was a double-edged sword.  If she did not give up custody of Brian in order to secure residential treatment for him, she could also have been charged with abuse and neglect for exposing her daughter to a harmful home environment.  So, Sarah made the awful decision, and Brian is no longer hers. 

Now, Sarah has no legal rights concerning her son.  When he told her that he went for 6 months without glasses and was experiencing intense back pain due to scoliosis, all she could do was report it to his caseworker.  And, while Sarah is permitted to attend his Individualized Education Program (IEP) meetings and his DCFS staffings, she has no authority to make any decisions on behalf of her son.  Sarah points out the contradictory nature of her situation: "I gave up custody of my son to help him, and now I cannot help him."

But Brian does have rights.  He has a right to see his family.  Yet Sarah has no written agreement granting her visitation rights with her own son.  However, thanks to his caseworker, whom Sarah describes as "receptive" and "diligent", about two times a year, DCFS drives Brian home to Plainfield to spend a few hours with his family while his younger sister is away. Sarah says there is a closer residential option that would allow her to see her son more, since travel with the family to see him in Springfield, even once a month, is more than they can afford.  However, because of designated provider limitations, DCFS cannot offer this placement to Brian.

During the time when Brian was threatening to kill his family, Sarah's sister asked her why she kept him at home.  Sarah's response was, "Because I love him."  I have very little doubt that this is the same response the Newtown shooter's mother would have given if asked the same question.  Yet that decision perhaps led to tragedy.  Sarah made a different decision in order to protect others, yet, in doing so, she lost her son.  Will other parents be brave enough to make such a heartbreaking choice? Why should they have to?  And what will happen in Illinois if they don't? 

There is a lot that is wrong with the systems at play in our state and a lot that is right with how things work in Illinois.  This is definitely something that is wrong.  Considering that the number of no fault custody cases similar to Sarah's has doubled recently, the time has come to rethink the help we offer to our most vulnerable families, those in the greatest need of state resources. We are failing an important population in Illinois.  We cannot continue to deny them critical assistance and then blame them when something goes wrong.  If tragedy comes our way in Illinois, we will only have ourselves to blame.

 *****

To find out how you can do more, please contact:

jwood@woodfamilylaw.com

To read the entire text of HB4739, please  click on the link below:

http://ilga.gov/legislation/fulltext.asp?DocName=09800HB4739&GA=98&SessionId=85&DocTypeId=HB&LegID=7...