Table 1:

Study Population: Child Characteristics

Child Characteristics	N	%
Gender
male	108	52%
female	100	48%
Age at Enrollment
Birth to <1 year	27	13%
1 to <5 years	55	26%
5 to <11 years	61	29%
11 to <18 years	40	19%
18+ years	25	12%
Clinical Characteristics
Number of body systems-median(range)	208	4(3-6)
Neurodevelopmental disabilities	131	63%
Cerebral Palsy	98	47%
Epilepsy, seizures, or convulsions	88	42%
Developmental delay	14	7%
Other neurologic condition	10	5%
Technology dependence	162	78%
Tracheostomy	32	15%
Respiratory support devicea	19	9%
Feeding tube	143	69%
Other technologyb	49	24%
Caregiver assistance with ADLs	194	93%
Gross Motor Function Classificationc
Level I-III	20	10%
Level IV	36	17%
Level V	93	45%
Not scored	59	28%

ADLs-activities of daily living, FPL-Federal Poverty Level, PIPP/HEAP-Percentage of Income/Home Energy Assistance Plan

^aRespiratory support device: ventilator, CPAP or BiPAP

^bOther technology: central line, urinary catheter, intrathecal baclofen pump, vagal nerve stimulator, or other

^cGross Motor Function Classification: Palisano et al. (1997) Dev Med Child Neurol 39:214-23