Justina Pelletier case out of Massachusetts is sadly fascinating. This Connecticut highschooler and her family on an odyssey,http://en.wikipedia.org/wiki/Odyssey an unplanned extended trip in which they never met their original destination and have had great difficulty navigating any satisfactory trajectory or destination for Justina Peltier and her parents.
This is not a professional paper, legal opinion or such. This is merely a look at what appears to have been made available to the public regarding this case, which has garnered national attention. This writer is a retired mental health professional social worker, with 25 years of practice, over half of which was spent working in direct service roles in acute care ( inpatient and daypatient clinicial mental health settings)
So, JustinaPelletier has a family, two parents, siblings, a school, neighborhood, faith community and recreational outlets, preferred medical providers a permanent home, and other chosen lifestyle quality of life things most in her social circumstance might. In Connecticut.
JustinaPelletier case involves many players, and multiple circumstances beyond the access of this writer. However, there are some core things that have come to light that it might be helpful for the public to consider in one document, in order to continue to express concerns together.
This writer strongly suspects there are other individuals in that state or nationwide who are caught in what appears to be a gap in service, primarily focused on client diagnostic, care and human rights. Those rights may be over more environments than the public realizes.
For this, or other related circumstances. JustinaPelletier circumstance has an element of bewilderment for her, her parents and relatives or other loved ones, professionals in any field related to a case like this and people who are consumers of services like those involved in a case like this, or even people outside same.
Some things to remember in this or any case, is that the whole is more than the sum of it's parts, so found information is just that, but often there is more than what is discovered or can be articulated.
The photo that accompanies this article is a quote from Rear Admiral Grace Hopper, http://www.history.navy.mil/bios/hopper_grace.htm a first career naval officer who also coined the term "bug" in the system.
Most people would say that the American system of Health and Human Services, which includes Administration to Children and Families and the Office of Civil Rights, all of which operate just over the state HHS and Child Protective Services are "broken" in some respect or another. The question is typically regarding an incident, but the observation is that it is as a whole, not in part, and therefore a more exacting system of response would generate fewer errors, more support and better, safer, more realistic outcomes for consumers, staff at HHS and the general public. http://socialworkhelper.files.wordpress.com/2012/07/proposal-for-cswe.pdf The preceding link shows options for improvements that are measurable ( you could try a plan and then see how it did or didn't work) and duplicable ( you could reset the exact same goals, and achieve them more than once, by applying the same process).
The problem with this #JustinaPelletier case is that it has flopped around like a fish as to what the PROBLEM is.
Even still, the other question some are asking is if there IS a problem.
And then the question is whose problem is it? Is the problem of 1.) a single person, 2.) a family, 3.) parents against child, 4.) family against system, 5.) systems induced trauma, 6.) medical or mental health malpractice,. 7.) court, constitution, policy or law problem 8.) religious practice violation 9.) civil or human rights violation(s) second to misuse of power...........? or 10.) some combination? or 11.) no problems, game over?
And final question is who is to solve the problem, assuming there is a problem.
The short version of the problem appears to be that #JustinaPelletier, under the care of a known, trusted, credentialled physician in her home state of Connecticut, was being treated for a complex, genetically based medical disorder that another sibling has been diagnosed with and treated for, by the same physician.
About a year ago, #JustinaPelletier was taken to an emergency room in Boston, with symptoms of the flu. By all accounts, the "young" receiving physician in the receiving hospital questioned the primary diagnosis of #JustinaPelletier.
SO her family went to the ER for one problem, and were triaged by the attending physician there as having a slew of personal and family problems, basically the girl faking a complex medical problem, diagnosed by a licensed specialist in another state? And her parents in chorus faking the medical problem.
Either this ER/MD or ER/MD in training ( noone has said if this is an aspect) made a report to Boston Child Protective Services and the "investigation" was on.
Now, mind you, the Primary Treating Physician (PTP) who diagnosed and had been treating #JustinaPeltier is NOT by all reports under any investigation or suspension of license, nor is any member of the team under same for mismanaging medical care, and poisoning her... which is what I think the inbound ER report allegedly says.
Flip the coin and see that it appears there isn't any investigative process against the ERMD either, so that person has not been challenged by the PTP in any identified court or medical licensing board investigative process. Despite all this alleged defensive and allegedly extreme banter from parents.... Hmm. The heart of the problem, as you will see below is the personal whim of the evaluator is what makes a diagnosis that this all rides on ... go.
No weight is given it appears to a.) guidance given by a trusted servant, b.) to number of years in practice, c.) declared expertise ( not genetically based cell disorders) (not psychiatry) (not systemic family issues alleged), specialized credentials, or d.) family beliefs gained over time? This writer suspects there is no law, boundary or guidance for same in Massachusetts State Constitution or law. So it isn't unconstitutional for the state law about medical or mental health.
As a matter of fact, Massachusetts doesn't appear to have a client bill of rights for mental health. JustinaPelletier's home state does, and here it is. http://www.clrp.org/legal-issues-we-handle/community-rights/ct-mental-he...
See this link for other possibly related questions about how advanced or delayed their mental health may be : http://www.bostonglobe.com/metro/2013/10/21/mass-one-five-states-without...
And then understand who has control over any decisions made by a state HHS, and how those might be solved. http://www.examiner.com/article/understand-which-federal-law-must-change...
That the girl, JustinaPeltier, was subjected to medical services unnecessary, and she has a severe, rare, profound psychiatric disorder ....which the DSM V ( Mental Health professionals diagnostic encyclopedia.... except she went into the ER before the publication date on this, which was May 2013, DSM-5 - Wikipedia, the free encyclopedia) just rolled out some new options on, for which the State of Massachusetts with and without court escort has sent her to an inpatient, what appears to be long term residential psychiatric facility, and a.) witheld contact with family, b.) stopped treatment for the originally diagnosed problem and c.) blocked her from her religious practice. There are probably more, so read on.
Over the course of this writer's awareness of this case, it has come to attention that this case is absent commentary that this writer can discover from Children's Rights, a group who manages legal issues of unrepresented or underrepresented issues of kids in state care. http://www.childrensrights.org/
From the American Academy of Pediatrics. http://www.aap.org/en-us/Pages/Default.aspx
From The CDC, The Center for Disease Control. http://www.cdc.gov/
From SAMHSA, The Substance Abuse Mental Health Services Administration http://www.samhsa.gov/.
That NAMI, http://www.namimass.org/ the family organization the National Alliance for the Mentally Ill for Massachusetts has not commented ( didn't expect them to) but that their network of sister groups doesn't know about this case, and this kind of stuff is usually totally their gig in terms if diagnosis, rights, policy and proper timely care with clear goals, and realistic planning and placement. NAMI Discharge planning rules for care facilities http://www.namimass.org/know-your-discharge-planning-rights-from-massach...
But a group this writer hasn't seen ever before has come forward and expressed an full opinion of best practices clinical concern. Coalition for Diagnostic Rights @DiagnosticRight which reflects infractions against the client's rights, #JustinaPeltier and her parents are separate entitites, BOTH have needs and concerns, but she goes first.
If one listens to #CDR audio assessment, and then reads the mission statement on their page, cites the problem of the increasing slaps issued to families and caregivers based upon unrealistic expectations of diagnostic processes. http://www.diagnosticrights.org/
Children are only children for awhile. The sick and infirm may only have awhile to stabilize and heal, whether from mental health, addictions or medical illness, irrespective of origin. Delayed by bizarre requests from public systems or in seemingly long directionless court processes, especially children or the infirm are persecuted by lack of fact based structure or point of view versus point of fact action of systems.
When will this "broken" system be named, and addressed, and at what point will the personality driven reactivity be diagnosed and eliminated from repeatsystems induced trauma performances, for the protection from this version of public health menace? And is that true in #JustinaPelletier's case?
The Coalition for Diagnostic Rights does a fine job of explaining the difference between two possible terms tossed about for #JustinaPelletier. Reading this and their data carefully, allows consideration #CDR: Somatic Symptom Disorder vs. Somatoform Disorder https://www.facebook.com/pages/The-Coalition-for-Diagnostic-Rights/54860...
This group of psychologists wants socially responsible practice in care. Wonder what they say about #JustinaPelletier? http://psysr.org/
This writer is absent status of wizard, to magically define the problem, but the questions are mounting, as are the dollars spent on this case... and who is served by the actions of the State of Massachusetts in the short term and long term , as it appears by the general public opinion that #JustinaPeltier is a representative of trends in individually chosen actions on the part of staff with direct affiliation with the State of Massachusetts services and private providers wholly unpaid by state or federal dollars or no?
Here is the State of Massachusetts document regarding the case that perhaps will pique interest further. http://c.o0bg.com/rw/Boston/2011-2020/2014/03/25/BostonGlobe.com/HealthS... which was RT on the page of an immunology specialist, Dr. Judy Stone. @DrJudyStone out of Maryland. Remarkably the original post was out of Philadelphia, PA. Stone prior timeline entry notes that the State of Massachusetts expert for the redness connected to the ostomy port on #JustinaPelletier was representative of allergic response to the mechanism of the port, versus infection.
As related public annoucements, NAMIMass is marching at the Massachusetts Capitol soon, and might want to come with : http://myemail.constantcontact.com/Keep-Mental-Health-a-Priority----Join...
Here are two publicly driven petitions have emerged. The first : http://grassfire.com/2014/02/justina/. Second : https://petitions.whitehouse.gov/petition/we-petition-doj-criminal-inves...
How does, or does this JustinaPelltier case fit with the trajectory questions of .@MiamiHerald about systems induced traumas and child deaths in Florida, related to action and inaction of Florida HHS/CPS.
Here's an applied quote, posted in unrelated circumstances from a Boston area : Lipi Roy, MD, MPH @lipiroy "First they ignore you. Then they laugh at you. Then they fight you. Then you win."-Mahatma Gandhi #quote