Protecting Medically Fragile Infants 2004 Conference for Social Services Attorneys

IDEA Individuals with Disabilities Education Act Part C

Children who may benefit from IDEA services Established risk: birth defects, visual impairment, hearing impairment, chronic illness Probable risk: prematurity, birth asphyxia, seizures, brain hemorrhage, failure to thrive Social risk: adolescent parent, substance abuse, mental illness, family violence, mental retardation, parent disability

“ Early intervention is the process of anticipating, identifying, and responding to child and family concerns in order to minimize their potential adverse effects and maximize the healthy development of babies and toddlers.” Zero to Three Policy Paper pg 3

Early intervention focuses on Physical development Cognitive development Social development Emotional development

N.C. Children’s Developmental Services Agency (CDSA) formerly Developmental Evaluation Center (DEC) Services available across N.C. Free developmental evaluations to establish eligibility for IDEA services Home-based Service Coordination Links eligible children with home- or center- based intervention programs Provides additional services such as nutrition; physical, occupational, and speech therapy; audiology; etc

“Human development is shaped by ongoing interplay among sources of vulnerability and sources of resilience.” “From Neurons to Neighborhoods: The Science of Early Childhood Development” pg. 4

Developmental Threats BiologicEnvironmental Prematurity Birth defects Visual impairment Hearing impairment Neurologic conditions Chronic illness Family violence Substance abuse Mental illness Mental retardation Poverty Culture and language Adolescent parents

Babies born with medical or developmental problems are simultaneously at greater risk of ongoing developmental problems and at risk of child abuse and neglect by caretakers.

For all children neglect has a more powerful and pervasive effect on brain development than abuse.

Children in Foster Care 80 % are exposed prenatally to maternal substance abuse 40% are born at low birth weight or prematurely 80% have at least one chronic health problem (25% have three or more problems) More than half have developmental delay 10 to 25% have growth retardation

DSS and EI/Health Care: Sharing Paradigms Demands on EI and health care system: optimize outcome; raise expectations to maximum Child protection paradigm: follow law to ensure minimum care standards met, respecting family privacy Medically fragile infants: goals often shared in that optimizing outcome IS minimum standard of care

Who do we worry about? Infants with medical problems that may affect long-term outcome Infants from socially challenged families Infants needing close medical/ developmental follow-up

Key Points for this Population Many medical complications have long- term implications Many negative outcomes at least partially preventable Prevention requires PROMPT intervention INTERACTION between medical and social issues is crucial

Prematurity: Our Paradigm for Medical Fragility Areas of development affected: –Health, vision, hearing, motor function, intellectual function, behavior/attention Sig. Survival down to 23/24 weeks, 500 g. The smaller the baby, the more problems and care needs

Medical Issues and Terminology Respiratory Problems –RDS: Respiratory Distress Syndrome –CDL: Chronic Lung Disease –BPD: Bronchopulmonary Dysplasia Treatment Needed: Sometimes – home oxygen therapy, apnea monitor Usually – close medical f/u to assess lung function, medication, immunize against deadly viruses (RSV)

Medical Issues (continued): Respiratory What could happen without care? –Chronic inadequate oxygen leading to poor growth, low energy, possible brain effects –Viral infections: can be fatal for these infants

Medical Issues (continued): Neurological –IVH- Intraventricular hemorrhage –PVL-Periventricular leukomalacia –HIE- Hypoxic-Ischemic encephalopathy –CP- Cerebral palsy OR Static encephalopathy

Medical Issues (continued): Neurological What could happen without care? –Worsening brain damage, CP or mental retardation –If baby has seizures that are untreated, can worsen developmental outcome Worst case scenario: severe brain damage/death

Medical Issues (continued): Visual ROP: Retinopathy of Prematurity –Treatment: Close f/u essential because progress sometimes hard to predict, laser treatment, surgery sometimes needed –What could happen without care: PREVENTABLE BLINDNESS OR VISUAL IMPAIRMENT

Medical Issues (continued): Nutrition –Premies often need special formulas, supplementation Without: poor growth, Failure to Thrive, worse brain development, weakened immune system Hearing –Premies at higher risk for hearing loss, otitis media. Need careful follow-up, treatment Without: high risk of hearing loss, chronic infection, permanent effect on language development possible

Full Term Babies at High Risk HIE- hypoxic-ischemic encephalopathy –Causes vary; oxygen deprivation at some point –Often have multiple, complex medical needs and wide range of developmental outcome –Need multidisciplinary f/u to deal with neurological, nutrition, therapy, family needs

Other Risk Issues Requiring Complex Follow-up Cardiac malformations Gastrointestinal malformations Craniofacial anomalies (i.e.. cleft lip/palate) Genetic disorders (Trisomies, etc.) Seizure disorders Failure to Thrive

Implications for Child Protection ALL have consequences for child that can be limited and or ameliorated with good medical follow-up, collaboration of parent and medical/developmental follow-up team. Do children have a right to this care?

Other Effects on Development Parent-child relationship –Premies and other special needs babies are harder to “read” and initially less responsive, fussier, more disorganized Parental drug use + prematurity seems to have multiplicative neg. effect of development Infants have had abnormal early environment in Neonatal ICU; evidence that compensatory interventions help development

Early Intervention Helps EI is parent’s choice; some parents may choose not to enroll Importance of parent support- even healthy families can be overwhelmed by these conditions. May find themselves in need of community support. When is such support mandatory?

WHAT IS NEGLECT? FAILURE TO ADDRESS CRUCIAL MEDICAL ISSUES WHICH CAN LEAD TO DEMONSTRABLE, PERMANENT HARM Lack of ongoing care for brain, nutrition, respiratory, vision and hearing issues Choice not to enroll in EI less clear

Strategies for DSS Good, close communication with medical team Educate CDSA and EI staff on what child protection can and can’t do. Most don’t report lightly Educate yourself on what are crucial medical issues Develop trust, working relationship

Child Development Specialists Can Help DSS and DSS Attorneys by: Determining if an infant or toddler has a developmental, behavioral, or emotional disability or delay Providing services to both the child and parents designed to improve overall functioning Helping train foster parents in child development Acting as expert witness in court Offering expertise that can help DSS in areas such as petition writing, placement, visitation, and permanency planning