May 2008 - Epilepsy Australia

the provider must be willing to negotiatehelpful changes in service. Unfortunately,very few providers state and followthrough on a pledge to make servicefeatures that are consumer friendlyand flexible. As a result, service usersare presented with a “take it or leaveit” proposition. Naturally, once fixedpatterns become entrenched, servicepractice responds poorly to the potentiallylegitimate demands of service users forreasonable flexibility and responsiveness.This preference for upholdingstandardized practice may predictablydefeat efforts to change services to makethem more effective for a given person(i.e. allow services to evolve in nonstandardizedways).Fixed service models arebased on assumptions ofroutinized needs.It is not uncommon for standardizedservice models to assign a commonnumber of hours, days, weeks or monthsof service to a group of individualsand then set those assignments in placefor prolonged periods of time (e.g.weeks, months, or even fiscal years).In such models, an individual’s needsare presumed to be unvarying. Thus,the service patterns are generic acrossservice recipients. Without flexibilityin service responses, generic servicepatterns become routinized andeventually institutionalized virtuallyignoring variability in needs. Often,financing for standardized services arebased on algorithms that use generalizedassumptions about people rather thantailoring to individual variances of need.Notably, even some “individualizedfunding” models use standardizedfinancing formulas.ReferencesFixed service models aredriven by staffing patternsnot individual needs.It has already been said thatstandardized service models try to fit theperson into what is available as opposedto designing individualized servicepatterns. This lack of flexibility can oftenbe systemic and pervade beyond thebroad service pattern to all methods andthe human beings who actualize them.In many instances, the deeper driverof service models may actually be thestaffing pattern in that the logic of thispattern preempts service user priorities.This is most often seen in the restrictionof service only to those hours ofconventional operation, such as is typifiedin the “9 a.m. to 5 p.m.” availability ofservice.The need for innovationrelated leadership in order tofulfill human potential.If the possibility for people to realizetheir dreams and inherent life potentialis to be optimized, it will inevitablyrequire personalized lifestyle and supportinnovations that arise out of the specificneeds of a given individual. Innovativesupport options are often limited becauseof the overly standardized nature oftoday’s dominant patterns of service.Ironically, this is occurring at a timewhen the rhetoric of “person centered”service is highly prominent. The losers inall of this are the people whose lives andlife prospects are not receiving the precisesupports and catalysts they need to thrive.Clearly, unless we see a new generation ofservice leaders who commit to this goal,the entrenched nature of our services andsystems will preclude many people fromexploring the real potential of their lives.To transform into truly individualizedand person centered services serviceleaders will need to:• Develop service arrangements oneperson-at-a-time.• Cease developing services “for”people• Make all aspects of service modelsnegotiable• Move the necessary authority andresources to sustain and guide servicemodel implementation into the hands ofthe people most directly affected.• Provide the supports to assist peopleto “imagine better” on an ongoing basis.• Provide the various supports to betterenable people to “start from scratch”and to experiment with imaginativeor innovative ideas for life or serviceimprovements.• Expose people to options andexamples that enable them to see beyondthe options they are currently mostfamiliar and comfortable with.• Limit the extent to which invasive andprescriptive bureaucracy or managementpractices impairs the ability of people todevelop more responsive personalizedservice models.• Ensure that service users and theirallies are sufficiently educated andsupported to be more empowered andeffective in their service design andimplementation negotiations withagencies.• Devote a small percentage of agencyand system resources each year to effortsto “remodel” services that may havebecome outdated and entrenched, infavor of more personalized serviceoptions.Kendrick, M. J. (2000, March; July) “Some initial thoughts on providing right relationship between staff, professionals, and the people they assist”.Queensland Advocacy Incorporated Newsletter, Part A and B.Kendrick, M. J. (2000, March), When people matter more than systems. Paper presented at, The Promise of Opportunity Conference, State Commission onthe Quality of Care for the Mentally Disabled, New York State Developmental Disabilities Planning Council, New York State Office of Mental Retardation andDevelopmental Disabilities and the Self Advocacy Association of New York State. Albany, New York.Kendrick, M. J. (2001). “The limits and vulnerabilities of individual support arrangements”. Interaction, 15(2) NCID, Australia.Kendrick, M. J. (2001). “An ethic of modesty in the support of others.” In Fratangelo, P., Olney, M., Lehr, S. (Eds.) One at a time: How one agency changedfrom group to individualized services. Training Resource Network, St. Augustine, Florida.Kendrick, M. J. (2002). “The potential role of advocacy in imagining better”. Frontline of Learning Disability, 51, 26-27, Dublin, Ireland.Kendrick, M. J. (2002, July). “Some examples of broad strategies to shield consumers and families from invasive bureaucracy.” Crucial Times, Edition 24,Brisbane, Australia.Kendrick, M. J. (2004). “Some predictable cautions concerning the over-reliance and overemphasis on person centered planning.” The Frontline of LearningDisability, 58, Dublin, Ireland.Kendrick, M. J. (2004). “The potential role of questionable assumptions in personal planning processes.” The International Social Role ValorizationJournal, 5(1&2).Kendrick, M. J., Petty, R. E., Bezanson, L., & Jones, D. L. (2006, January). “Promoting self direction and consumer control in home and community basedservice systems”. The Institute for Rehabilitation and Research: Houston, Texas.Kendrick M. J. (2007, January). “The challenges of authentically getting what people actually need on a person-by-person basis”. The Frontline of LearningDisability, 69, Dublin, Ireland.THE EPILEPSY REPORT MAY 200821