The Conroe @Piehigh county The Cost of Misdiagnosis 2023-08-23, Tiss a Viewpoint paper and as such the information in this document originate from the office ofthe Lehigh County Controller and does not represent an aut performed under the Generally cepted Govern- ‘ment Auditing Standards (6AGAS),THE COST OF MISDIAGNOSIS: arose NOTE This report was assembled and analyzed bythe Convoll’s Office, focusing on cost incurred bythe «county based onthe potential misdiagnosis ef cid abuse, While the Control’ fie has reviewed ‘various spending associated with hidren and Youth Services (CYS) costs, we cannot acces spec «asesormedicalrecords.Consequerty, we cannot assert the cost ol miiagnossina particular case Instead this por draws on national averages and publicly available information to estimate those Wile itis imposible to nail down the specific oss incurred bythe county at histine, the fac that thereae costs tothe county trough foster care, tigation expenses, and many other cossis beyond reasoned dispute ‘This udtintaly began asan investigation int the cost associated with the potential midges ‘of Munchausen Syndrome by Pry. However, it quickly became apparent that the inuiy needed to include other areas, such a5 shaken baby syndrome, various forms of hed trauma and othe rte iseases frequently misclassified as child abuse. Moreover, the reader must understand that our t- vestigation didnot reveal afew anomalios attributable to human eco, InsteR¢ our analysis showed statistical anomalies suggesting pater that equres further investigation, “Tothatend the Controle fies eersingthis matter tothe Auditor Genera’ Ofc of Pennsy a, which possesses the authority to review case record to investigate this mate, Concomitantly with that referral, ny fie wil uit. nq Inca hospitals to participate and have an inde pendent rd party review media records. Pleasenot:Nothingin this dacumentil preclude the Controller's Office fom conditngfurtherat- its tothe Lehigh County Department of Human Services in compliance with the Genealy Accepted Government Aulting Standards (GAGAS), also known as he Yellow GookstancardsTable of Contents Executive Summary Background The cata Clarifying Call with Parents Medial Rights Group 2361 Day of Government Control Caresvers Recourting Their Stree Evidence of Systemic tissues in Abuse Diagnoses The Basis of Munchausen Syndrome by roxy Prevalence of CA Northeast Region ve Southeast Region ‘The Northeast Region Stands Out ‘TheCoststothe County The Financial Impact of Wisdagnose Economie Costs Litigation Coats Bullding cases ‘The Caseworker sRoles The Detective Role Judges and Masts Role ‘The oleot aHosptals Child Protective Unit(CPL) The Doctors Power Findings (Observation 1: Controversy of MCA Diagnoses Part The Nature of Munchausen Syndrome by Proxy (MSBP) Port B: The Complety ofthe MSBP Diagnosis Part: Anomaliesin the Northeast Region of Pennsylvania Parte: Controversies Invling CPU doctors PartF Dependence on CPUPhysician Expertise Recommendation 1: stablsh a Neutral Review of Diagnoses Recommendation 2: Request Hospitals Conducta investigation Recommendotion 3: Hire an External Exper fr Case Review Recommendation 4: Rectiying the Consequences of Midiagnosed MCA » » » » 2 2 2‘THE COST OF mispIAGNosts mace Recommendation 5: Taning Casewotkers and Managers at Children and Youth De partment Cbsenation2: Potential Overlasifation of Chia Abuse Part Reporting Procedure and Mandatory Reporters Part B:Signsand Consequences Part: Investigation Process, Outcomes, and Status Defritions PartD: More Than 790 People Were Potential Msabelad as hid Abusers in Lehigh county Oueto State Laws (na) Recommendation I: Child Abuse Protection Policy Reforms are Urgently Needed in Pennsylvania Recommendation2:GovernorofPennsyvana:ACallt Address the Indication Status (observation 3 Flowed “indicated” Determination Process Cost Families ane County Recommendation : Executive Review o indicate! Cates &Dacson of Non-Pursult: Recommendation: Mandaing Stronger Cae Assessments Ahead of Indcation Obseration 4 Concerns Over Reerals Recommendation 3: Implement an Alowance system or Familes Recommendation: Outside Evaluation (Observation 6 "tthe stat faut” Recommendation: Comprehensive Thir-Party Review of Child Protective Processes (Observation 7: Compliance Concernsin Lehigh Count Ofieaf Childen and Youth Services (0c¥s} Contactor Operations Recommendation: Budget Pritzation er Legal Compliance in ehigh County OC¥S Glossary of Terms tations Attachments ‘tachment 1 -CaseBrief One ‘Attachment 2- Case Brief Two ‘Attachment 3- Case Brief Three ‘tachment Case Brief Four Attachment 5 -Case Brief Five [Attachment 6 -Case Brief Six ‘tachment 7 - Laws of Confidentiality Attachment 8- Qualifications of Juvenile Court Hearing Officer ‘Attachment Letter Determining indication of Child Abuse ‘tachment 10- Likelihood that Two Parents Have MSBP s 26 38 x a * 2» Ress es a Office oF The contrler‘THE cOsTOF misoinGHosis 2073-0823 ‘Attachment 1 Limited Sclence on MSBP ‘Attachment 12 Statistical Review of MSBP ‘tachment 13 Student's Review of MSBP ‘tachment 14 -A Family Narrative Attachment 15 -Declarationsin Regards to Indications Attachment 16- Process Flow Chart Office OF he Cntrter 5‘THE COST OF misoincnosts 2023-0823 Executive Summary ‘An analysis uncovered alarming statistics thatthe Northesstregion of Pennsyvaniadagnoses 40% of the state's Munchausen syndrome by proxy cases (MSBP) usedto signify medical child abusel¥Ch), or furyear degree, and can pay les than $40,000 year. Someone who sacnd-pusses & doctors opinion, and a specialist working regularly with her department at tha, could der heres reer (Ciford 202) Lacking medical experts, caseworkers lean heal onthe doctors guidance, regardless ofits acuracy, Proessonalsin chil welfare ely heaily on doctor diagnoses of abuse. Lacking medical expertise, they depend onthe doctors advice, even ifthe doctor ha misdiagnosed the circumstances. When ‘misdiagnosis occurs, child welfare staf present inaccurate information to judges, unintentionally misrepresenting the situation. Trusting the doctors word, a caseworker may Build cases agin nocent parents, never realizing the doctor ere, Child welfare workers musts understand that they are theft ine of defense, They should closely ‘examin any isolated child abuse incident o determine it was acidental or part ofa pattem, even \itmeans questioning a doctors dagnoss. While developing relationships with doctors is natura these bonds become problematic when staf becomes too trusting of diagnosis. Chid walle pe onnel must think really, remaining open torre medial canton ater than concluding o- lated events that indicate repeated abuse When child welfare sees a solitary event ora family demonstrating affection, tis information must ‘make tinto cases. They should also seek unbiased second medical evalatonsinstead of lying ‘solely on one doctor se of dactors fom the same network ‘The county must provide the tals and suppor for unbiased advocacy focused soley on children’s best interests. 8 fostering a supportive ervzonment, the County wl equip is chi welfare stato ensureal families under scrutiny receive fr, balanced assssment ‘THE DETECTIVES ROLE Detectives may take the ead in investigating chi abuse allegations. They interview al partisin- volved to understand what occurred, Detectives actively collect evidence to determine how the chi sustained an injury. These investigations include gathering medical records, meeting with teaches, neighbors, family members, and visting the home envionment. They reconstuet imeines leading ‘upto the incident. Detectives analyze all facts to establish what took pce and who bears respons: bitty. Office of he contaler 2sTHE COST OF MisoIAGHOSIS. a8 ‘once detectives compile evidence, they decide whether abuse wanspred or an accident beter ek plains theinuries. I detectives confirm maltreatment, they identify the perpetrator Detectives and caseworkers act as fetfinders to reconstruct realty. Their imartial investigation techniques should uncover the ft of he matter. ‘Toavoid accidentally accepting a misdiagnosis, detectives should proactively investigate medicalcon- lusions especially incases where doctors have conflicting diagnoses. Inthiscse they should eport hot conto the court Teaming up with caseworker, thy should interview the cis ater actors to understand ther complete medical history and any cnditios tha cou explain injuries. Detectives mustthorcughl follow uponalllesdsbefore removing child omtheirfamiy- They must ‘emain impartial seekers of truth who use their sls to uncover facts. Teircaeful legwork provides the objective nvdence needed to separate truth rm speculation JUDGES AND MASTER’S ROLE Ina child abuse case, the courts often use masters alo kaon as Juvenile Court Hearing Offices. Masters play a vital olen child abuse and neglect cases. Courts appoint masters to conduct het ings review evidence, menitorcase compliance, and commend tthe presiding judge mates the ‘custody, services forthe family, permanency planning and the termination of pareatal rights Mas ters are valved for their experts in child welfare and ability to gather details on the case's complex ‘ércumstances.Teirfinings and suggested orders help guide judges in making wel nformed fl ecisions. One area where challenges arises the ellance of judges and masters on medical pole sionals. Judges and masters donot havealoftheinsightsorsils that adoctor does. Thy mustrehy con these profesional. Judges and masters heavily depend on information rom doctors, particularly when diagnosing child abuse or medical neglect cases. They trust doctors wile truth and provide accurate zeessments based on their expert, ‘The courtsmustmove cautiously when medical evidences presented or contested among specalit. ‘The cours should be skeptical of any doctor claiming definite findings of abuze without slid pat Doctors should only iagnose medical conditions. It not ther job ta decide who abuse the chil Detectives, ot doctors, should determine who abused the cid tis crucial to ensure mechanisms are in place to verily and coroborate medical acessments to strengthen the system and adress these issues. Judges can sek second opinions or cans wth ‘other medical experts to validate cagnoses, especially when the potential cansequences involve the removal of child rom their caregivers, By implementing such measure, the system can mitigate Office oF The controler 6‘THE COST OF MisoIAGNosIS 20230823 the iss associated with misplaced trust and promote a more reliable and accountable approach to decision making Itisvitaltoachnowledgetheeitenc ofthese vulnerabilities withthe system and strive to address them through improved safeguards and mechanisms for verification. By doing so, we can work to- wards amore robust nd reliable child abuse system that ete serves the interests ofboth chieren and ther parents ‘THE ROLE OF A HOSPITAL'S CHILD PROTECTIVE UNIT (CPU) A hospital’ child Protective Unt or other prefered nomenclature, coordinates esponses to child abuse allegations inthe community. The units typically housed within the hospital and includes Partnerships with local lw enforcement, cil wellare, and prosecution, The appendix contains the ‘memorandum of understanding explaining the stuctore of this agreement. While CPUs provide valuable resources they have faced ome cities + Perceived confets of interest: Some fel this compromises neualy and objectityin inves {tons since the CPU is part of the hospital There are concerns aboutinsétutonal bias. + Seltreportingssues:Doctrsinthe hospital unrwer ace and mt epi eh wale authorities, However sincetheCPUispartofthehosptl thasechidabuse reports get etre bscktothe cPuyhospitlforinvestigation.Thissituationcreatesasereportingloopthat ome equ is problematic (ffce of The Controller n‘THE COST OF misoIAGnosts rar3-0823 a Report to ; Chilling — Eo | ro ool Za | County | xtcnmeme Children ‘Boteunderssates and ‘sone Youth Pipe dS ReporingLoop + Inconsistentuse The CPU snot used fr every chil abuse investigation in Lehigh County. The Crtra for when the CPU does or doesnot get uted is uncleartathe contri + Lackol transparency Limite publicinformation i avallable concerning the CPU's processes, ‘operations, governance, and results. \Whilea CPU provides vital services, dressing these potential confit, seltrportngisses incon sistent use, and wanspavency concerns could improve public trust and mitigate risksin the counys child abuse response system. Limited transparency fuels speculation about CPU operations. AS an lntegratpartof high County chilé welfare infrastructure, forming perceived deficenclesulththe (PU could bolster community confidence ‘THE DOCTORS POWER In racic, doctors hold remendowsinfuence over child abuse case. Their medical opinions tnd tobe accepted without challenge, even possibly flawed. Thesystem assumes doctors arte at 2 urate findings when they can make harmful mistakes, asin any profession. The system must equip Office OF The Controller 2‘THE COsTOF MISDIAGNOSIS 2023-0923 professionals that lyon dctorsto critically analyzemedialevidencelnsteadof automaticaly tt. Ing potently mistaken doctor More vetight of abuse diagnoses is needed, Findings OBSERVATION 1: CONTROVERSY OF MCA DIAGNOSES, art A: The Nature of Munchausen Syndrome by Proxy (MSBP) use represents a severe and rare form of cid abuse Despite its sever, MSBP i exceedingly ae ‘Tereis controversy over the dagnossbecause a ciagnsisina cidautomatiallyleadstoa dagno- ‘sin the caregiver pial themather without requiring the arivertoundergo any evaluation. Pediatrician re often the doctor that diagnoses MSBP t's crucial ta highlight the aiference nag nosing physical and psychological conitions. Fr instance, a broken arm isa drt, physical ag ross confemed tough maging echniques. Doctrs ae nt saying wo Boke the arn, jst that it broke and look ke it was on purpose. MSBP is an indivetpsychologlal diagnos confirmed ‘through a proces of elimination and behavioral cbseration. The problems that the doctor is d= agnosing who isharmingthe chi. la this case the doctor officially indicates that caregiver isos ot abusing the ci Here are Some Key Things a Doctor Does to Diagnose MSBP (Stil 2007} + Distinguish between exaggerated, imagined, induced, o abriated symptoms, noting unde- tectableor inconsistent signs + Evaluate ifthe disease symptomsalign with known medical patterns and eompare agains com monillaeses + Place factious disease inthe list of potential diagnoses, expecially symptoms donot fit known patterns + Collect comprehensive information from all medical professionals involve to form a holistic Understandngof the chil’ heath + Seekobserations and insights rom nurses, suppor sta and other medical personnel eg: Ing the cid and family + Assess ifthere isa pater were common llnesses resi standard treatments or iftreatments escalate without mprovernent Office OF he Controller 2»‘THE COs OF misoIAGNosIS 2073-0923 + Consult with multiiseiplinary teams, suchas paychologiss and social workers to gin more Insight + In situations of imminent harm, employ covert videotape surveillance to observe the chia interactions and very symptom consistency, ensuring adequate safeguards rein pace ‘The diagnosis equltespleing together pater of behavior and evidence overtime No single i= Ing confirms MSBP itis a determination made only ater doctors le out al genvine disorder, ‘When pelicans diagnose Munchausen syndeomeby proxy, they accuse the caregiver cf, on without even performing psychological evaluation of the caregher. Furthermore, the addtional opinions should not be from another pediatrician. It shouldbe a specialist in the purported disease theparentsclaimthechildhas. psychological assessment ofthe caregiver shouldbe required before lobetinga parent as abusive (Anderson 2016, Allof hese misdlagnoses cost taxpayers mone. Part : Anomalies in the Northeast Region of Pennsylvania, ‘The Northeast region of Pennsylvania, encompassing 14 counties, hasan unusally high number of “substantiated reports” of MSBP, 35 defined bythe child protective service. Despite representing ony 119 eto populaon under 8, ths eon account for som ofthe total eases of MSBP ‘mong the 14 counties inthe Northeast region, MSBP cass have been relatively inte, with only {our counties reporting cases between 2017 and 202, However, itis noteworthy that Northampton County and Lehigh County accounted for a significant majority, specially eight out ofthe ten r= potted cases inthe Wortheast eon. These cases represent approximately 2% of all SBP cases "reported in Pennsylvania over five years, despite the counties of Northampton and Lehigh having a ‘combined population thats ss than half of Philadelphia, which only had seven epored eases during this same pavod The consistency of the outlier status over two consecutive years, and the absence af reports in Northampton County sincidng with Lehigh County st two consecutive cases of MSBP, suggests ‘thot these ining are unikely to be random occurences, The statistical significance of the outer {further supports the notion that these av abnermalconltions rother than natu! vraton within the standard deviation, Furthermore, Scot Bley Ph. the Chair and Professor af Psychology at Texas Lutheran University, statistically reviewed the medical child abuse dat proved by DHS and conc: anination into what cing the high numba of dogmas inthe Noro eon gener. Office OFThe Controller 2‘THE COST OF MISDIAGNOSIS. ran0e3 pears not only merited but urgent. Part E: Controversies Involving CPU doctors (CPU physician testimony has been controversial Pennsylvania, Fords, and New York, There are ‘multiple instances where judges have challenged the testimony of «CPU physician, Some judges have even questioned the vaiity oftheir exper testimony while recognising them asexpertsin thar fil These cases include the dagnosis of MCA MSBP, and other diagnoses of hid abuse. In one example case a child under eighteen was alleged to suferfrom abuse. The judges comment appear below: judge: Hon Edina 6 Richardson "he courts saddened by what has happened here ea result of an incucletl substrates ccvsation of Shaken Baby Syndrome. (The docs allure to deny and adequately ule out ‘hevavious potential causes of bilateral subdural hematomasinthiehile and her mizdagnosie ofthe child as sufeing fom suberachnoid bleeding, causa hero jum to many conclusions, including the conclusion that the c's injuries wer cused by vielen shaking, There afar teomany abused chien nour scity, This cour’ ol it try to ensure othe ete pos sible that citron are protected rom abusive ana nepectfl parents is agi that mecca rrissiagnosis and an inappropriate rush to judgment has ested in these loving, caving ded ated parents beng separate im esc hil, Thankfully, inthis age, vistationhasbeen bea Inanother case of child abuse: Judge: Hon, Jeanette Ruiz Based on the totaly of the evidence presented the Court ind Patiionarha filed to prove by 2 preponderance ofthe evidence the subject child sufered om nanaccdentl head rau (werT. The evidence showed the cil was dagnosed and treated for presumptive meningts uring hist hospitalization. Thee ofthe four meal experts who tested as tote chiles iagnsis and treatment agreed, te varying depres, thatthe child ha ether viral or bacterial meningitis dving his est hospitalization. Only the CPU physic, Ptioner's expert during {heir case in chil, opine the child sed rom NAT during this fst hospitalization, art jependence on CPU Physician Expertise Lohigh county C¥S department heal eis on # CPU's expertise when investigting child abuse allegations. Judges oten bas thei decision tissue an order for removing child rom tai care {vers on the information provided by caseworkers and the insights and evaluations fom physicians ‘with the CP. (Office OF The controler a”‘THE COSTOF MISDIAGNOSIS rersez Recommendation 2: Establish a Neutral Review of Diagnoses ‘The controls office strongly recommends that Lehigh County Children and Youth Services an Lehigh county judges require at leas a second medial opinion in cases where chid removals 2 possible outcome. Asecond opinion may not be necesary if there isimmedite danger tothe cid hich should coincide with lear evidence ofa patter of abuse, Such evidence can include bts nottimited to cigarette burns, beatings, starvation, olation, ever burns, a story of unexplained bruises, violence inthe home, multiple 31 cl, sling lures, of mle prio reports of concer from schools or religious organizations. The exact criteria shoud be suggested by experts inthis fol. -The second opinion shouldbe obtained from amedical profesional rom a diferet hospital network or CPU than where the fist agnosis was made. - The second opinion shoul be trom 8 medical professional with experiance or expertise inthe appropriate specialty applicable othe Furthermore, when evaluating cases suspected of MSBP o MCA the control's ofc suggests that (YS utilizes 2 multidscpinry team to asess the cid and caregiver This eam should comprise professionals rom diverse areas of expertise outside ofa sngl hospital network, providing com: prehensive perspective on each case. This approach wil help ensure the accuracy of lagnases and safeguard the wellbeing ofthe children and fries volved, This approach should continue even aterthe completion of an investigation Recommendation 2: Request Hospitals Conduct an Investigation The Lehigh County Board of Commissioners shoud instruct the Lehigh County Solicitor to prepare 8nd send correspondence t the heads of local hospitals. The correspondence should convey the folowing Dvete theunexpectedly high aumberof MSBP cazes inthe Northeast, the Lehigh County Board would ike certainty that this fact and its associated providers is providing the County of Lehigh and it residents with child abuse services re rom misdagnoss Therloe, the Board request: + An investigation into all MSBP diagnoses and all asocated aliases made within the pat five yearsby medical professionals ailsted with yourhospta + An investigation int ll instances where» child was removed or an atempt was made tore "move a cil rom ther caregivers over the pave years, without pririneeation of patterns of abuse a outlined above ‘A neural thi party, with no pastor present association with the hospital or the County of Lehigh, should conductallavestigatins. Sat enies must mutually agree on tis thi party Office of he contaler 2‘THE COsTOF misoiAGNosis men The report shal be public, and the results uploaded tothe Leigh County Government website compliance with the privacy requirements ofthe CSL, Recommendation 3: Hire an External Expert for Case The high County Board of Commissioners should ire an extemal expert fm with hil abuse iagnsisandthe best practices of acilrenand youth agency. This expert shouldrevew al MCAana other cases where a parent was indicated” inthe ls five yeas wherethere was n clear evidence ot pater of abuse, ‘The extemal expert woud also review how these cases were managed internally and the counts overall process and procedures, ommendation 4: Retifying the Consequences of Misdiagnosed MCA ‘Te county should urge all relevant providers to emovelchange the cagnsis of MCA or any ofits liasesfrom apaton’smedea records, expecalyincazesthathavebeen withdrawn orbasedonthe ‘outcome of Recommendation #3, This tp is crucial since such a diagnos can significantly impact patient’ ie and may reduce the patient's ikelnoodof aking further legal tps. nan article tld “Sometimes an apology can deter lawsuit the Caloris Bs Joumal examined heimpactthat an apology can haveonthe Ukelnood and cost of lawsuits found that, “The Medial CenterinLesingto, Ky, the pioneer in ful disclosure reported that ina 23-year prod the facity went tia only three times and negotiated mare than 170 setlements, the ‘mean ost being $35,000 compared t 8,00 pre-tal, 248.0003 al and $412,000 mlprac ing forced t, change 8 Glagnosisof MCA itmay beless likely that an aggrieved parent flee alaweuor atleast demands fen damage, Anincorret agnosis ofthis naturefolowsa patient into sdthood and canleadt significant const- ‘quences. One suchinstanceis demonstrate ina case represented by Ms. thelauyer forthe parent bing accused oftiousdsorderby proxy” another term for MCR or MSBP. office Of The Contraler a‘THE COSTOF mispIAGnosis aro ca vy | faity. x wanted 20 346 2 think there wes a Feluceant todo the -- the initial fssue mas that ehey mere Tike, okay, since the eran Fictitious aiagrorts, 20 these Hoes dons have ‘seuss, S0 we're not going to do the 3EP ‘certified by the Fact Phat now has this ingots, 50 T think that's caused some conflict with the school. Not sone. 1 believe 6 we're not going £0 60 the SO plan because 58'S Figures: coure Document ‘The above excerpt rom a cout transcript shows Ms. C explaining tothe judge how an eroneous agnosis prevented acl om geting the edeatona suppor they needed. The school dened the ld a 54 plan and an naviduatzed education program (EP because ofthe cious" agnosis alleging the paren was fabriating the chs symptoms, ‘A804 plan provides accommodations fr disabilities tha mit major ife activites, such a letning, Including entra tine on tests. An EP is egal document that provides specialized instruction and serves for special education students tallred tothe childs neds ‘The ramifictions of an incorrect diagnosis extend beyond education, particularly asthe child grows into aduthood + Eroding ust in healthcare prouders—disputed diagnose can creat skepticism towards doc ‘ors, making indiduashesitant to see cre, + Creating barriers to medical care—Some providers might refuse treatment due tothe Ubi sks associated witha dspute cidhod diagnosis + Limiting heat insurance optons—Insurers may deny coverage fr patents with disputed agnoses ike HCA Office of he controler a"