Abstracts

Rationale: Epilepsy Life Links (ELL) offers educational, employment, social and case management supports to the thousands of patients seen yearly by the Northeast Regional Epilepsy Group of epileptologists, neuropsychologists, and epilepsy nurses. ELL case management staff grew to a full compliment of four during the course of 2008, and school-aged children appeared to have the most complicated and ongoing needs. This identified cluster of patients will require additional supports and an expansion of service delivery. Methods: ELL case managers, supporting 258 clients, examined the needs and progress of the school-aged children whose parents sought ELL advocacy. 67(26%) young people with epilepsy, between the ages of 5 and 18 years, were tracked to determine presenting problems, uncovered problems, and outcomes. Results: Of the children, 36(54%) were male and 31(46%) were female. Five (7%) were out-of-house referrals and 62(93%) were in-house referrals. Presenting problems included 33(49%) with academic difficulties and related behaviors; 25(37%) hampered by problematic school plans; 12(18 %) facing social issues including stigma; 9(13%) with epilepsy education needs; and 6(9%) with social service system needs/other health issues. The single negative barrier uncovered was parental inability in 16(24%) of the cases to follow through and take advantage of the services they determined to be necessary. Positive outcomes for clients included a 30(45%) resolution of academic difficulties and behaviors including improved school planning; 11(16%) epilepsy education needs met; 10(15%) social issues including stigma addressed and resolved; 10(15%) social service needs/other health issues resolved. Conclusions: Academic, social, educational and social service needs of children with epilepsy blend. As one concern is presented, others are uncovered, and most correlate with the complications of the child’s epilepsy. ELL staff were able to resolve academic and social issues when there was an opportunity to mediate with school districts and other service providers and educate their staff about the myriad of difficulties a lack of seizure control, medication side effects, stigma and real or imposed isolation can create for children with epilepsy. ELL was unable to resolve precarious situations for these children and produce positive outcomes when parents or guardians were indifferent to the potential of case management assistance. Eliciting the full support of parents or caretakers is paramount to success and requires greater effort to initially engage them in an appreciation of the positive outcomes that can be generated.