Allegations of Medical Neglect: Checking the Facts Bruce J. McIntosh, M.D. Co-Interim Statewide Medical Director Child Protection Team System Bruce J. McIntosh, M.D. Workshop Moderator . Received M.D. degree from the University of Florida College of Medicine (1970) . Completed residencies in Pediatrics at the Yale-New Haven Medical Center and the Navy Regional Medical Center, Portsmouth, Virginia . Began working in the field of child abuse while at Portsmouth (1976) . Certified by the American Board of Pediatrics in the sub-specialty of Child Abuse Pediatrics . Presently serving as Co-Interim Statewide Child Protection Team Medical Director Investigating Allegations Objectives of Workshop . Define and describe the Medical Complex Child and the challenges such children present for their families . Provide basic medical information on specific medical conditions commonly resulting in reports of medical neglect . Introduce the use of disease-specific checklists to assist in gathering information about families’ understanding of their child’s medical condition and in identifying potential barriers to successful management of the child in the home . Assist you in enabling these children to remain safely in their homes while eliminating recidivism, i.e., repeated reports on the same child Evaluating Allegations of Medical Neglect Schedule Topic Speaker ___ Time Allocation Introduction McIntosh 5 minutes The Medically Complex Child Elliott 35 minutes Diabetes Shapiro 15 minutes Failure to Thrive Shapiro 15 minutes Break 15 minutes Asthma Dully 15 minutes Eczema Dully 15 minutes Dental Problems McIntosh 15 minutes Obesity Pena 15 minutes Summation McIntosh 5 minutes Medical Neglect Definition . The failure to provide or the failure to allow needed care as recommended by a health care practitioner for a physical injury, illness, medical condition, or impairment, or . The failure to seek timely and appropriate medical care for a serious health problem that a reasonable person would have recognized as requiring professional medical attention. Definition from the American Academy of Pediatrics and SB 1666 pages 24 & 25. Medical Neglect Exceptions Medical neglect does not occur: If the parent or legal guardian of the child has made reasonable attempts to obtain necessary health care services or the immediate health condition giving rise to the allegation of neglect is a known and expected complication of the child’s diagnosis or treatment, and The recommended care offers limited net benefit to the child and the morbidity of other side effects of the treatment may be considered to be greater than the anticipated benefit; or The parent or legal guardian received conflicting medical recommendations for treatment from multiple practitioners and did not follow all recommendations. Definition from the American Academy of Pediatrics and SB 1666 pages 24 & 25. Investigating Allegations DCF CPI-CPT Partnership . Investigating allegations of medical neglect requires a close partnership between DCF and the CPT . Disease-specific checklists have been developed to enable you, the CPI, to gather essential information in the home regarding the family’s understanding of their child’s problem, possession and use of home treatments and access to care . Use of these checklists will help the CPT to help you to identify barriers to home successful management and to develop strategies for addressing them . The goal is to keep these children safely in their own homes whenever possible, while eliminating repeated calls on the same children for the same problems Anne M. Elliott, M.D. The Medically Complex Child . Attended medical school at the Southern Illinois School of Medicine . Completed residency in Pediatrics at the Medical College of Virginia . Completed fellowship in Pediatric Hematology- Oncology at Children’s Mercy Hospital in Kansas City, Missouri . Has just completed a fellowship in Pediatric Hospice and Palliative Care at the University of Florida - Jacksonville Medically Complex Children: What can a Checklist Tell You? Anne Elliott, M.D. Hospice & Palliative Medicine Physician Community PedsCare Associate Medical Director What is Medical Complexity? “Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. “ -- Maternal & Child Health Bureau Division of Services for Children with Special Health Care Needs Medical Complexity What That May Look Like… Medical Complexity and Neglect “Complex and chronic medical conditions are a risk factor for both the occurrence and the reporting of medical neglect. Chronic diseases impose a higher demand for care on families and increase their contact with the medical system. Similarly, disease processes with high severity raise the probability of bad outcome from even small departures of prescribed care. Thus, chronic, complex, and unstable medical conditions create many more opportunities for medical neglect to occur, for harms to be actualized, for the outcomes of neglect to be severe, and for these harms to be recognized by medical providers” - Pediatric Annals 2014 Medical Complexity and Neglect Translation When a child: • has a General Pediatrician and 6 or more Subspecialists • has multiple medical diagnoses • takes 5 or more medications • has multiple pieces of home medical equipment which may include life-sustaining technology • requires home nursing care • requires specialized transport It is easy for things to go very wrong leading to serious adverse outcomes. Medical Complexity What Does It Take to Help? Medical Complexity Variety of Barriers Knowledge Psychosocial Financial Access to services/equipment Home nursing, therapy, daycare, education Provider availability Medical, nutritional, mobility equipment Transport - AAP 2007 Medical Complexity Helping Families Medically complex children are cared for by a complex and often confusing medical system Primary care physicians are key Medical home Medical Complexity Knowledge Barriers Lack of understanding of: What diagnoses the child has What providers help with each condition Why medications or equipment are prescribed Reason for ongoing follow-up Important concerning signs/symptoms Possible poor outcomes if not addressed Alternative caregivers also need to understand this information! Medical Complexity Start with the Basics Step one: understanding what and who Facilitates prompt contact to physician for concerns and follow-up regarding ongoing needs Medical Complexity Psychosocial Barriers Lack of order in family’s life may impair ability to respond appropriately to medical needs Siblings’ needs Parents caring for parents Work & school schedules Mental illness can impact parent’s ability to care for the child Can be chronic or acute Substance Abuse Medical Complexity Simple Questions Open Doors… Identifying who may lead to insight into the home life of the family Sometimes the answers and following conversation may surprise you… Medical Complexity Additional Help and Support Medical Complexity Care Management Reduces unmet healthcare needs Improves quality of life Increases family’s understanding of child’s condition Reduces caregiving burden Improves outpatient physician visits Decreases hospital admissions by 26-59% Decreases ED visits by 18-55% - JG Berry 2015 Medical Complexity Care Management Primary Care Physician Insurance care coordinator Eg. CMS Medicaid Waiver Programs Eg. Partners-in-Care: Together For Kids Medical Complexity Financial Barriers Costs: Medications Doctors/Therapists Hospital Stays Insurance Equipment Supplies Transportation Car modifications? Loss of income Missed-work Reduced Hours/Quit Medical Complexity Financial Assistance Do they have insurance? Do they qualify for secondary coverage? Additional supports? SSI? Medicaid Waiver programs? Transitioning preparation – APD application Address any correctable No’s! Medical Complexity Early Intervention Neural circuits are the most “flexible” in the first 3 years of life The brain is strengthened by positive early experiences These combined mean that early intervention may help promote the best long-term outcomes for children both physically and mentally Early Steps program Provides in-home therapy services to qualified children Medical Complexity Programs School attendance Individualized Education Plan is needed for the majority of medically complex children attending school Therapies provided in-school Socialization for child Hospice & palliative care support programs PIC:TFK Local hospital-based programs Medical Complexity Access to Services Medically complex children are 4 times more likely to have 3 or more unmet needs as compared to other children Parents may be unaware of available services Insurance or financial barriers to services may exist Medical Complexity Variety of Services Needed Equipment, therapy, home-nursing, etc… Inability to appropriately identify providers or needed services may be an indicator of a knowledge gap or even medical neglect Medical Complexity Therapy and Equipment Prescribed in order to promote optimal care and quality of life Certain deficits may lead to life-threatening conditions Others may lead to poorly managed pain or other symptoms Medical Complexity Transportation Barriers Multiple studies site lack of transportation as a leading reason for