Transcript Protecting Medically Fragile Infants

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
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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 centerbased 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
Biologic
Environmental
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Prematurity
Birth defects
Visual impairment
Hearing impairment
Neurologic conditions
Chronic illness
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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 longterm 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
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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
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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