REPORT OF THE STUDY COMMITTEE TO DEVELOP A
STATEWIDE COMPREHENSIVE
SERVICE DELIVERY SYSTEM
FOR PERSONS WITH EPILEPSY
South Carolina Department of Health and Human Services July 1, 2008 2
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Executive Summary
Persons with epilepsy (PWE) constitute a unique segment of our SouthCarolina population with multiple unmet needs. Their disabling medical conditionprevents many of them from fulfilling normal educational programs, enjoying thesocial and economic rewards of society, obtaining and/or maintaining gainfulemployment, and experiencing satisfactory mental health. In a unanimous Joint Resolution by the 2007 SC General Assembly, our state government acknowledged that 2% of the state’s population had ever had epilepsy, about 43,000 PWE in SC required continued treatment and more than half of the latterreport limitation of their activities. It was also noted that the rate of psychologicalimpairment for PWE was twice normal. The requirement for coordinated careand provision of diverse and needed services was recognized as necessary toenable all PWE to gain and maintain their highest possible quality of life and level of productivity.
The South Carolina Study Committee to Develop a StatewideComprehensive Service Delivery System (Epilepsy Study Committee) forpersons with epilepsy was convened in 2007 in accordance with the JointResolution (2007 Act 168). This Committee now provides its findings to theGeneral Assembly. The bases of our findings include: 1) review of scientificliterature, 2) review of state-based data on epilepsy, 3) statewide detailedsurveys of about 100 persons (or parents of) with epilepsy, 4) statewide survey of55 physicians, 5) survey of twenty state agencies/organizations which wereperceived to provide services relevant to PWE, and 6) experiences of designatedcommittee members and invited experts.
The Committee finds that most of the community and many serviceproviders see the major disabling issue for epilepsy as the epileptic seizure. Yet,the most debilitating facets of this condition may be stigma and comorbidities(i.e., co-occurring medical conditions). Stigma permeates the public perception ofepilepsy and results in social isolation, institutional segregation, and limitation.Also, in varying degrees, many PWE perceive themselves to be helpless, inferiorand different. Patient and public education and quality treatment are the likelycomponents for a resolution of stigma. Over 50% of PWE have comorbiditiesassociated with epilepsy. These may include impaired cognition, depression andother psychological challenges, adverse effects of treatment, and social isolationimposed by stigma. A high level of awareness by treating physicians and serviceproviders can appropriately direct PWE to services required to ameliorate someof these problems.
Most citizens in SC have typical and reasonable expectations foremployment, education, recreation, and enjoyment of routine lifestyles and relationships. These goals, which are assumed for most of us, are not readilyachieved by many PWE. Specifically, quality of life is notably diminished by the3occurrence of just one seizure per month. Current research indicates that nearly20,000 adult South Carolinians with epilepsy are having at least one or moreseizures every three months. With this frequency, PWE cannot legally operate avehicle, may be encouraged to seek alternative educational or training systems,may fail to obtain or maintain gainful employment, yet would be ineligible for social security disability benefits, and be unable to obtain health insurance or life insurance at reasonable costs, if at all. Even those PWE with fewer seizures or no seizures may continue to endure repercussions of stigma, impaired cognition and/or mental health, high medical care costs, under employment, and trouble accessing services.
The impact of epilepsy extends beyond the PWE. Every mother, father,spouse, sister, brother, and even grandparents of the PWE realize first thephysical and emotional effects of a seizure and then are often themselvessubject to many of the same restrictions on social integration and otherconsequences imposed by epilepsy. They are hypersensitive to the reactions ofothers when a seizure occurs. It is a living, ever-present fear that envelopeseveryone near that PWE. When seizures are poorly controlled, the effects areextended to include limitations or barriers for employment, transportation,healthcare access, and education. It is not unusual after the diagnosis of epilepsyfor there to be job changes which result in insurance coverage changes and evenloss of all insurance coverage. The consequences are felt by all in the family andthe community as well.
The Committee has studied the cost of epilepsy. It is difficult to include allcosts, but it found the estimated that the annual US direct cost and indirect costrange from $12.5 (1995 dollars) to $16 billion (1994 dollars) [1,2]. A restrictedanalysis of healthcare expenditures in SC shows annual Medicaid totalexpenditures for epilepsy as $29.5 million (in 2006). Considering this to representabout 25% of the overall total, then SC expenditures for medical treatment isestimated at $118 million. Indirect costs can be extrapolated using informationfrom published studies and would suggest the indirect costs in SC are $843million annually, based on direct costs consisting of 14% of total cost [2]. Sincecosts are highest in PWE with continued seizures, expert care and efficientmanagement of service delivery will affect savings for our state while improvingquality of life for PWE.
The Committee has considered the multitude of services that would be beneficial for the resolution of the barriers for PWE. Our state agencies and private sector have the capabilities to provide essentially all of the diverse services. The real need is to bring specific services to bear on the individual PWE and his/her community. In some cases that will be the development by the school nurse and parent of an Individual Health Plan in order for teachers to know what to do when a seizure occurs in the classroom and to best understand the capabilities and limitations for that child. Vocational rehabilitation may be necessary for an adult who has been unable to reach full employment because of4work restrictions put in place secondary to the epilepsy. Advocacy with the employer can also yield positive results. Prompt treatment of depression by a clinician knowledgeable about epilepsy and associated behavioral disorders can avert dysfunctional moods and behaviors that can repress quality of life as well as impair educational and employment success. Education of first responders and police about the various presentations and first aid management of epileptic seizures may prevent inappropriate decisions and even incarceration for a potentially life threatening condition. It is proposed that a well trained case manager can successfully find and procure appropriate services from a pool of diverse providers and facilitate efficient care, promote best outcomes and increase quality of life.
This Committee has concluded that an effective and efficient system ofservice delivery based on case management practices will offer many solutionsto the problems experienced by PWE. Initial contact for the presumptive patientand family is typically through a medical channel. If the diagnosis of epilepsy isestablished, the medical model remains a constant in the services system.Hence, it is appropriate to build a service delivery system with the epilepsy clinicas an integral interface for the PWE, the case manager, and communityresources. The case manager will be knowledgeable about the needs of PWEand about the availability of diverse community resources and how to mostefficiently utilize those services. A consortium of six SC Regional Epilepsy Clinics(RECs) will be established by offering the opportunity of participation to existingprivate and institutional neurological practices. A proposal for bid to participatewill include stringent personnel and operational requirements. The bids will becompetitive and clinics will not be funded by new state resources. AComprehensive Epilepsy Program (CEP) with extensive diagnostic, therapeuticand service capabilities will function as the organizational head of the consortiumof regional clinics. The CEP epilepsy clinic will also become one of the regionalepilepsy clinics.
The epilepsy case manager (ECM) should reside in the same region asthe PWE and thus have a direct link to the community and its resources. Thespecific strengths and weaknesses of the resources should be known, and ifneeded, modified through feedback. The ECM will be a part of the REC and havedirect links to all professionals and staff to ensure clear and directcommunications. The ECM will also function as a liaison and educator in thecommunity. The Committee findings indicate that some agencies/organizationsdo not see epilepsy as a likely recipient for their services. Thus it is likely thatwhen those services are requested or provided, they do not have any specificity.This circumstance would warrant intervention and enlightenment by the ECM.This should be a beneficial action for those agencies and enhance needsawareness, referrals, and appropriate delivery of services.
The REC consortium will promote the highest quality of medical servicesby fostering professional education, joint case conferences, rapid consultations5and uniformity of professional diagnostic and treatment protocols. Technologicaladvances (such as Telemedicine) will enhance these activities. PWE who enterthis system will become a part of a registry which will permit surveillance ofquality of care and services, medical and non medical outcomes, healthcareexpenditures, and delivery system costs and savings.
The CEP will consist of epileptologists, neurosurgeons, neuropsychologists,psychologists, epilepsy nurse practitioners, neuroradiologists, social workers,vocational rehabilitation counselors, clinical and basic neuroscientists and EEGtechnologists. There should also be affiliated psychiatrists who have specialinterest and expertise with epilepsy. Some of these personnel will also be a partof the attached REC. The CEP leadership role includes readily availablephysician-physician consultation, a teleconference network for all RECs andCEP, recurrent personnel training for support staff and service providers,development of continuing medical education activities, development ofprotocols, procurement of research grants, and advocacy through layorganizations. The clinical role of the CEP and its REC will include extensivediagnostic services and epilepsy surgery through referral by other RECs. Once evaluated and treated the majority of referral will be returned to their REC and community for continued medical follow up and community services. Other non medical consultations will be provided as needed as well. The highest level of comprehensive medical and non medical services in effect will be extended through all regions of SC.
The Committee envisions an advisory group that provides oversight for the initiation and maintenance of the epilepsy service delivery system and its surveillance. This group would include PWE, caregivers of PWE, educators,psychologists, epileptologists, epilepsy nurses, state service providers, social workers, community representatives, and SC legislative representatives. The advisory group would routinely review the surveillance data and surveys of PWE to make recommendations to the epilepsy service delivery system, state agencies, and state legislature.
The service delivery system proposed by this Committee is notable for itspotential cost savings through use of existing private sector and stategovernment resources. The quality of services will be enhanced through providerand PWE education and training. Public and service provider awareness will beincreased with a resulting efficiency in referral/utilization of existingagency/organization resources. It is believed that there will be wide spread costsavings and improved quality of life for PWE by making available statewideskilled specialists in epilepsy. There should be travel reduction, reduction ofindividual antiepileptic drug prescription costs, increased employment and jobretention, decreased disability, improved healthcare in the educational systems,and more efficient utilization of community healthcare resources (e.g. emergencydepartment, emergency medical services, diagnostic studies). Limitation for newstate resources and cost reductions has been a persistent caveat of this6Committee. A comprehensive services delivery system that efficiently bridges thePWE (through a case manager) with existing public and private communityresources will work successfully to improve services and improved outcomes forthose PWE in SC without creating substantial costs for the state.
Direct costs for the epilepsy service delivery system would include six case manager salaries and an administrative staff along with overhead costs for the administrative office and general supportive services. Specific support services would include technical personnel to keep the database operational.Funding for public, patient and agency education and awareness activities would be moderately substantial but bid out to competing organizations which have capabilities and experience with epilepsy. Medication payment issues will be aprimary concern of the surveillance team. Should coverage be a significant issue,further review may be necessary to achieve best medical outcomes and care forPWE and their families. While indirect costs might include the increased use ofalready existing state and federal services, we expect that the resultant increase in education attainment, employment, and social involvement of PWE would more than offset the indirect costs. This should be enhanced by coordinated andcomprehensive state-of-the-art epilepsy treatment.
References
[1] Commission for the control of epilepsy and its consequences, economiccost of epilepsy. In: Plan for nationwide action on epilepsy, vol IV. Reportno 78-279. Washington, DC, Department of Health, Education, & Welfare,National Institutes of Health; 1978. 117-48.
[2] Begley CE, Famulari M, Annegers JF, Lairson DR, Reynolds TF, Coan S etal. The cost of epilepsy in the United States: an estimate from populationbasedclinical and survey data. Epilepsia 2000;41:342-51.
