A Gap In The System

Why can’t you just deal with real life?

Melissa — Fri, 30 Nov 2007 19:13:56 +0000

Hi. I haven’t posted here in a long time, due to being sideswiped repeatedly by life. Now, it’s time for our son to prepare to come home and I’m back to tripping over bureaucratic red tape left and right. I have the feeling that this site will be much more active over the next few months.

As some people reading this know, my now 14 year-old son has been diagnosed with severe Post-Traumatic Stress Disorder (PTSD), due to previous physical and emotional abuse. All the years of fighting and half-baked diagnoses have led us here. After almost a year of recovery in a long-term program, he’s doing much better and will likely be able to finish his treatment on the outside.

Unfortunately, both he and my younger son, who has not been diagnosed with PTSD, but exhibits many of the symptoms, are coming up against a new wall that is making their recovery harder. I call it “real life syndrome”. You know exactly what I mean.

“Why can’t you get past this?”
“You have to stop living in the past and deal with now some time, you know.”
“Stop talking about all this stuff that happened to you before!”
“You have to deal with real life!”

What is this real life of which you speak? Even people who have survived trauma, who should know better, still expect them to buck up and move on. Despite the fact that listening to a litany of what was actually done to them makes people grit their teeth and want to break something, they’re still expected to shove the past away and get going with the future.

J is 14. A is 11. Neither one has had contact with their abuser in four years, but they lived with occasional, secret abuse for many years before that. Every day, his actions live on in them. They can’t get past it yet, because they still have to live with the reverberations of it every single day. When someone acts in a fashion that reminds them of their abuse, they lock up and fall into old patterns, either closing down into protective mode or falling apart emotionally. Despite years of therapy, he still has a hold on them.

How the hell are they supposed to get over that easily? Years of therapy and loving care will slowly wear it down and I expect that they will have normal lives. Sometimes they’ll be happy, sometimes they won’t, but they’ll always remember. Who has the right to say that their reactions are wrong, for the place that they are in now?

Last night, I was linked to a series of three essays by someone on LiveJournal.com that really resonated with this situation.

A User’s Guide to PTSD
by Rachel Manija Brown

Part I: What I Did In The War. (Introduction; background; what happens during trauma; what happened to me.)
Part II: What Does A Flashback Feel Like? (My history with PTSD, and what it felt like to me.)
Part III: I Don’t Have To Do This Any More. (On recovery; lingering effects; book, film, TV, and music recommendations.)

Read those. Think about them the next time you want to tell someone that they’re “living in the past”. Think about my sons who constantly have to deal with the memories and the fact that someone that they loved and trusted hurt them bad enough that they have PTSD. Maybe a little more empathy and understanding may result.

The End of the Line (or the Beginning of the Rest of Our Life)

Melissa — Tue, 05 Jun 2007 18:43:11 +0000

For the first part of this post, read “91 Long-Term Beds in the State, 91 Long-Term Beds in the State, Fill Them Up, Pass Kids Around, 91 Long-Term Beds in the State“. The start our journey can be found at “Through the Looking Glass“. I’m still working on filling in the gaps between the two posts.

–

In the wee hours of an early November morning in 2006, Children’s Hospital refused to take my child any more, after he was brought in by the police and ambulance, stating that he just seemed to want to go back to the hospital. I had the option of just taking him home or getting the police back to press charges. It was an insane hour of the morning and we were all exhausted. My husband and I took him home.

A few days later, we had to call 911 again, due to J. assaulting both my husband and me. When I told the police that my son would not be accepted at Children’s, it was determined that the only option left was King County Juvenile Detention, where he was held on two charges of Assault in the Fourth Degree, Domestic Violence. It had been determined that he was a danger to us and to the community at large, so he couldn’t leave before all his hearings were up. He was finally allowed to leave just before Thanksgiving, due to the extra work of his lawyer and the kindness of a judge.

The next week he was brought in and agreed to a deferred sentence. He is on one year’s probation, had his right to be firearms removed (a requirement of domestic violence situations), and was assessed a financial penalty. If he completes all requirements, there will be no conviction on his record.

My son is thirteen years old. If he fails at this deferred sentence, that conviction will be on his record until he’s at least 18.

Another few days later, we were back calling 911. Fortunately, that time, a police officer more familiar with the mental health system was present. He suggested that J. be taken to Harborview Medical Center, where they could at least probably get a 3 day Involuntary Treatment Act (ITA) order and give us a break. I wish I knew that officer’s name, so that I could thank him.

That is what finally started us on the path to being able to get J. the help that he needed. That 3 day order turned into a 14 day one, then a full 180 day order, the longest that you can get. J. knew that he was ill and agreed to each order, signing off on them so that it was not disputed in court.

As mentioned in my previous post , a six month order automatically moves a kid to the upper reaches of the waiting list for CLIP. My son was held in an institution for two months before a placement was found for him.

Now, after a two year struggle, my son is finally where he can actually get deep and dedicated help. He is in intensive therapy and treatment, with care for all of his medical and mental issues.

The trip here has been the most painful thing that I have ever experienced, ripping me, my husband, and our family into pieces repeatedly. I am documenting that journey, so that other parents know that they are not alone. so that those on the outside can see a taste of what it’s like, and so that those involved in the system can see how the system feels from a consumer/parent viewpoint.

There will be much more to come.

91 Long-Term Beds in the State, 91 Long-Term Beds in the State, Fill Them Up, Pass Kids Around, 91 Long-Term Beds in the State

Melissa — Tue, 05 Jun 2007 18:03:34 +0000

This is skipping to the end of our story, but I was reminded of this by a discussion that I had this weekend and it’s what I want to write about now.

–

Children’s Long-Term Inpatient Programs (CLIP) is the adminstration in charge of the Washington State programs for children who are too mentally-ill to function in society. They are often violent and suicidal and can be seriously involved in the juvenile justice system. Families are usually at the absolute end of their rope when their children are sent to one of these programs. For a child to be admitted to CLIP, they have to meet the Medicaid criteria for medical necessity.

CLIP was first mentioned to me in 2005, as something that we might want to look into if things continued as bad as they were. That person, a Children’s Crisis Outreach Response Services (CCORS) therapist, was the only person through out this whole mess to look towards the future with J. and it was determined that it was probably too early to look at that long term of a solution at that point. We were told that the waiting list was very long, so we would want to keep that in mind.

In theory, children are usually admitted to CLIP by two procedures (SOURCE):

Involuntary Commitment (ITA) 180-day Restrictive Orders for Inpatient Treatment

Under Washington State’s juvenile mental health services law (RCW 71.34), adolescents aged 13-17 may be committed for up to 180 days of involuntary inpatient psychiatric treatment. Under this 180-day restrictive court order, the adolescent becomes eligible for admission to a CLIP Program. The adolescent’s name is placed on the statewide waiting list as of the date of the 180-day Restrictive ITA order.The CLIP Administration’s Placement Team is legally authorized to assign committed adolescents to one of the four CLIP Programs. The assignment is based on preferences expressed by family members, and by professionals directly involved in the adolescent’s care. The location of the adolescent’s supports and the availability of beds within the CLIP Programs also influence the assignment. Once admitted to a CLIP Program, the adolescent may agree at any time to remain as a voluntary patient.

Voluntary Application and Certification

In accordance with the CLIP/RSN Agreements, the Regional Support Network (RSN) must review any voluntary CLIP application. Voluntary applicants or their guardian(s) must be residents of the state of Washington. In addition, voluntary applicants must have a severe psychiatric illness that warrants intensive services in an inpatient setting.The RSN refers children to the CLIP Administration only after consideration and approval of the application at the local level. Application requirements are comprehensive and include records that document the child’s inpatient and outpatient treatment, any out-of-home placements, school history and any other services the child may have received.The CLIP Administration compiles a written summary that is submitted to the CLIP Certification Team for review. Based on the materials provided, the CLIP Certification Team determines whether an individual applicant meets Medicaid medical necessity criteria. If the CLIP Certification Team approves the application, the child’s name is placed on the statewide waiting list until a bed becomes available at the most appropriate CLIP Program.

here

years

after

website

There are 91 CLIP beds in the state of Washington. Forty seven beds are at Child Study & Treatment Center (CSTC) which is the state-operated psychiatric hospital for children.

The remaining 44 beds are available in the three contracted Residential Treatment Facilities (RTFs).

You read that right. There are 91 long-term beds for mentally ill children in the entire state system. In King County alone, 78 children were involuntarily committed on 72 hour ITA orders last year (SOURCE, .PDF). I have not been able to find out how many of those children went on to 14 and then 180 day orders, but it does give some perspective.

Regional Support Networks (SOURCE)

There are 13 RSNs in Washington State. Each RSN has a contract with the Mental Health Division to administer all public mental health services within their region (WAC 388-865-0200).

One of the responsibilities of the RSNs is to refer children to the CLIP Administration only after a comprehensive assessment of their needs and a concerted effort to provide alternative community-based services.

The King County RSN is handled by three Interagency Staffing Teams (ISTs).

I was handed an application for an IST by someone at the Inpatient Psychiatric Unit (IPU) at Children’s Hospital in the autumn of 2006. It was September, I think, but it may have been early October. I would have to go back through my records to find out exactly. She would not fill it out for me, as the form seemed to ask, but did give me a few pointers and fax it in for me. She also gave me the contact information for the person I would need to talk to and said that they were looking at opening new cases in November.

I called this contact a bit later to make certain that she had my application. She had received it and told me that there would be more cases being opened some time in November.

In November, I called her and she told me it was looking like December.

I never heard from her, the IST, or Seattle Mental Health ever again.

Seriously. (To be continued.)

In (Lighter) Mental Health News . . .

Melissa — Sat, 28 Apr 2007 22:12:04 +0000

I know enough House fans that I really thought I should pass this one on!

HOUSE calls for NAMI

The hit television drama HOUSE is helping NAMI.

At a packed press conference on the Los Angeles stage where the show is produced, cast crew and producers launched a promotion this week to benefit the National Alliance on Mental Illness (NAMI) and its work in education, support, and advocacy for individuals and families affected by mental illness. View photos from the press conference.

Right now—for a limited time only—T-shirts from the show are being sold on-line for $19.95 at www.housecharitytees.com. They are emblazoned with the phrase “Everybody Lies,” one of the best-known “House-isms” often uttered by the brilliant, but cynical diagnostician Dr. Gregory House, played by Hugh Laurie, the star of the show.
(Read More.)

Plotting and Planning

Melissa — Mon, 12 Mar 2007 21:10:58 +0000

A good conversation with an acquaintance who was involved in the children’s mental health system for a long time has gotten me really pumped to write more and work as an advocate for mental health, in general, and children specifically.

I feel as if our story needs to be shared. People need to know what’s going on, what it is really, viscerally like to be in this place. Other parents need to be aware that there are options out there. All of the bureaucracy needs to quit being bureaucrazy, but that will likely never happen, so someone who has learned things the hard way needs to share those lessons with others.

T, the acquaintance, suggested that I look into peer counseling. I will be doing so. It feels odd to consider myself as someone to help other people like that, but I know what I would have given to have someone who had been there already helping me.

Another suggestion was legislative advocacy, something else that I will look into doing. While I can’t imagine trying to speak in front of a large group of people, I think that I’m willing to try it.

I will be writing more in this journal and sharing our history, as I pull it all together in my head, as well as sharing some of my other experiences, resources, and beliefs. I hope to post something every week day.

I know that I have very few readers currently, but if you would like to know anything, feel free to ask in comments.

La esperanza vive, otra vez!

Melissa — Sun, 04 Mar 2007 03:07:20 +0000

Esperanza is Spanish for hope and it’s what I finally have a bit of now. I’m almost afraid to even whisper that, as if speaking may ruin it all.

J is in a state-contracted long-term facility now. It’s a residential treatment center, where he is receiving training and experiences to get him ready to face the real world again.

We went to visit him today, as a family. He’s only been there for three days, but it seems like I can already see a bit of a difference. He’s not being warehoused and he’s being forced to THINK. He seems to be coming out of the unthinking fog in which the hospital had placed him.

I have hope and, oddly enough, that makes me even more scared. Hope is such a fragile thing, as ephemeral as a soap bubble, as light and soft as a butterfly wing.

Poking my head in

Melissa — Tue, 27 Feb 2007 05:56:15 +0000

I know, I know, I keep saying that I’m going to update this thing and then getting slammed with something else. I really am going to try to get more of Our Story up here and start posting regularly, but it will have to be later in the week.

On Wednesday, our Boy will be institutionalized for the remainder of his 180 day Involuntary Treatment Act (ITA) order. I have great hopes for the program, but the thought of having to do this is just killing me and I have a bunch of paperwork to do before then, as well.

Seriously, I’ll try to post more soon.

Yes, that about covers it

Melissa — Thu, 08 Feb 2007 07:02:04 +0000

The statistics about the prevalence of mental illness in children are correct. But it’s a hidden epidemic. Millions of families are alone in coping with the ordeal of children’s mental illness, unaware of how many others are struggling, too. We all know what it means to sit alone, at night, with a child who might at any moment take a swing at us or another of our children, or run out the back door, or grab a kitchen knife, or swallow a bottle of pills. We know what it’s like to send a child away, to surrender the care of our children to strangers, and to have medical decisions made by anonymous insurance executives. Too many families know what it’s like to lose a child, because they couldn’t find help in time. Children and adolescents with mental illness are among the most neglected and mistreated members of our society.

- Acquainted with the Night: A Parent’s Quest to Understand Depression and Bipolar Disorder in His Children by Paul Raeburn

I think that I’m going to have a lot to say about this book, while I read it, so I’ll probably do some commentary here.

Life has still been a bit overwhelming with me, so I haven’t been keeping up with this blog. We’ll see if I can change that.

It just keeps on coming

Melissa — Thu, 11 Jan 2007 20:57:39 +0000

As some of you know, and has been previously mentioned, I’ve been more than a bit snowed under and have not been able to work on this website.

My husband had thyroid surgery, my mother nearly had a heart attack and did have a blockage, and I had a hearing for J’s 180 day Involuntary Treatment Act order. That all happened in the same week. Needless to say, I’ve been a bit overwhelmed.

In the latest news update, J is not cooperating with the hospital and will likely go into long-term care through Washington State’s Children’s Long-term Inpatient Programs (CLIP) for the remainder of his ITA order. He is already on a waiting list, so it’s just a case of waiting for a bed. I will be writing more about this soon.

I hope to get back to Our Story soon, as the dust settles.

Working . . .

Melissa — Wed, 03 Jan 2007 22:38:49 +0000

I am working on the next post in the Our Story series. However, it won’t likely post until tomorrow.

Yesterday was spent at the hospital while my husband had thyroid surgery. He is recovering well.

Today, I was at the hall where involuntary commitment hearings are held. J, my beloved 13 year-old, agreed to an order committing him for up to 180 days, with a review in 30 days. ::sigh:: He’s already been in for almost a month, with one 72 hour order, one 14 day order, and one week of waiting for a hearing. It doesn’t seem to be helping very much at this point, but I’m still hoping.

Some days, all you can do is hope for the best.