My dear friend Kirsten has a little girl called Pickles, and Pickles is very sick. Her diagnoses include schizoaffective disorder, generalized anxiety disorder, oppositional/defiant disorder, and attention deficit/hyperactivity disorder. She has spent the better part of the past two years in two residential treatment centers, one in Denver and one here in Albuquerque, plus six in pediatric psychiatric hospitals. There has been a frustrating cycle of days or weeks of improvement followed by a crash and increased psychosis.
Pickles is not safe outside of a secure facility. During her time at the RTC in Denver, Pickles disappeared at about midnight and was missing until the police found her about 4 hours later on a freeway overpass. She explained to Kirsten that E (one of her hallucinations) had said they needed to go for a walk because he had something to show her.
Pickles was, at that time, seven years old. She is now 8 and is psychotic most of the time, in spite of large doses of anti-psychotic medicines, mood stabilizers, and anti-anxiety drugs. In recent weeks, she has tried to stab herself with a fork, gouged her face with a ballpoint pen, and required emergency restraint multiple times. She is not able to go on outings with her group and she has not had an overnight pass with her mom, all because she is at risk of hurting herself or someone else.
She is also funny, charming, kind, and the very prettiest little girl in the world. When we visit her at her RTC, her favorite thing to do is put tiny ponytails in my husband’s hair and put makeup on him. She loves to sing and she loves presents: getting them, giving them, and making them. When her psychosis is quiet enough to allow her to be present, she has a sharp sense of humor and a stunning awareness of herself. She is, ever so slowly, learning to live with and manage her illness.
But she’s not safe yet, and in fact, she remains a danger to herself and others. Aetna Value Options has informed Kirsten that Pickles must be discharged Thursday, December 27, 2012, because she has reached her baseline and she will never get any better. The RTC has told Kirsten that she has no option except to take Pickles home and register her in the neighborhood school.
There are no aftercare provisions in place.
No respite care.
The education specialist at the RTC told Kirsten that Pickles won’t get a specialized classroom placement until she “fails” in a regular classroom setting.
Does it not occur to the people who make these rules that repeated requirements for “failure” are devastating to Pickles’s sense of herself as a growing girl who is working and striving towards something? That every calculated “failure” strips a little more of her spirit and her confidence?
Kirsten, who knows Pickles and understands her illness the way only a mother can (and more, since she holds a PhD in neurophilosophy), knows that this abrupt discharge is doomed. Her experience tells her that Pickles will be back in acute psychiatric care within weeks, if not days, either when she becomes unsafe at home, or when she has one of the seizure-like rages that happen often when Pickles is overwhelmed, probably while she’s at school, and likely resulting in a call to the police who will deliver her to the hospital, an episode that will be profoundly traumatic not only for Pickles but for all the students and staff who witness it.
After dreadful things happen (a child is hurt, or hurts others), one of the first questions that people ask is: how could her parents have let this happen? Why didn’t they get her some help? What we don’t see is what is happening here, namely, her mother is totally dedicated to getting Pickles all the help she needs, but she is being prevented from protecting her daughter. She is also being prevented from protecting the children at her neighborhood elementary school, her own safety, her neighbors’ safety, and the resources of local emergency responders who will be called on when Pickles hurts herself or someone else.
If Pickles bolts (which she has done often), what if she is hurt before her mom, school staff, or the police can find her? If she rages, what if she hurts someone before she can be restrained? At her RTC, she requires “C-teams” (which is a technique involving two staff members who help her calm down while standing ready to restrain her), restraint, and emergency sedation on a regular basis. None of those techniques is even remotely available in a regular public school classroom or her mom’s home. What if her hallucinations tell her to hurt someone? What if she becomes so overcome with frustration at the constant battle inside her own head that she tries to take her life?
What if she succeeds?
Everyone who knows Pickles agrees: she’s not ready for discharge. Her psychiatrist, her psychologist, her mom, and Pickles herself all know that this is a terrible idea. She cannot be kept safe in a home environment. People at the insurance company (who have never met Pickles) made this decision.
Pickles is in danger. Make no mistake: this is a life-or-death situation, and this is mental health care in the US today.
I am working furiously with Kirsten to prevent Pickles’s discharge until she is ready and all appropriate aftercare accommodations are in place. She needs a slow, gradual transition with lots of opportunities to feel successful as she meets small goals along the way. And, of course, she needs to be safe, and she needs the people around her to be safe. You can help by sharing Pickles’s story. No parent whose child had acute liver or heart disease would be expected to be the sole caregiver for that child’s medical needs. Why should it be different when a child’s illness exists in her brain?
UPDATE: And it’s all good!
The office of NM Governor Susana Martinez was very responsive to Kirsten’s calls for assistance. At this point, it looks like Medicaid will be picking up where the private insurance left off, and the Children, Youth, and Families Department will be requiring their own approval when the time comes for discharge and aftercare plans. No one is relaxing entirely yet since the RTC has just submitted a new claim to Medicaid and it hasn’t been approved yet, but as soon as all the Ts are crossed and Is dotted, Pickles will again be secure at RTC until any changes, including discharge, are appropriate and safe.
Thank you thank you thank you (and dozens more thank yous) to all who offered support and love. Thank you to those who shared contact information and worked to share this story as widely as possible. Thank you to Governor Martinez, her staff, the staff of Pickles’s RTC, and NM CYFD for putting the safety and well-being of a little girl above dollars. Please continue to share this story. Kirsten and I were just discussing yesterday how differently this could have worked out, had Kirsten not known how to work the system the way she did (and I do hope I was helpful in that part) and had online friends with broad experience with advocacy not offered their advice (We didn’t end up using all the contact info we got, but wow, do I have an impressive list to call upon if and when any of my local friends should need it!). There are other parents out there, parents who don’t have much education, or don’t have much money, or have cultural or language barriers, and so many other issues that prevent them from advocating for their children in the way Kirsten does for Pickles. Kirsten is not cowed by the authority of people who say no they way many people are, and that is not a failing, just a fact of temperament. This could have gone so differently, and Pickles could have been the lead story on the local news, and the first thing a thousand people would have said from in front of their televisions is, “How could her parents have let that happen? What kind of parents are they?”
The next time you hear a story like that, and you hear people judge the parents, please remember Pickles. There are bad parents out there, sure, but there is also illness that parents alone are not equipped to manage on their own, even the best among us. Remember what might have happened here; what very likely would have happened if Kirsten was not a fierce mother with fierce and loving support behind her. Mental health care in the US must change. Pickles and Carter and all the children and adults who need care deserve sensitivity, kindness, and treatment. It doesn’t have to be this hard.