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brain injuries in alaska10 year tbi alaska state planoctober 2008Alaska Department of Health and Social Services Behavioral Health senior and disability servicesAlaska Mental Health Trust Authority Alaska Brain Injury Network, Inc.www.alaskabraininjury.net

acknowledgementsThe Alaska Brain Injury Network (ABIN), Inc. thanks the many people who have been involved over the years withconducting needs assessments and holding public forums to gain input to help Alaska state government to envisiona service delivery model for persons with brain injury. This includes the Alaska Brain Injury Network, Inc. committeemembers who met diligently to discuss, review and provide input. The ABIN appreciates its partners and otherorganizations that have contributed their knowledge and expertise. Thank you to the Alaska Legislature which providedfunding for the development of this plan.The Alaska Brain Injury Network, Inc. (ABIN), a non-profit organization established in 2003, serves as the TBI AdvisoryBoard to the Department of Health and Social Services and the Alaska Mental Health Trust Authority. The ABIN hasembarked on developing this State Plan for improving, developing, and expanding services and supports that reflectthe needs of individuals and their families. State program and agency staff have provided invaluable expertise in orderto develop a comprehensive approach to capture strengths in Alaska’s state service programs, as well as gaps that needto be addressed.In February 2008, the Alaska Brain Injury Network (ABIN), contracted with S.L. Vaughn & Associates, LLC, to assist theABIN in developing a comprehensive state plan. These recommendations will be forwarded to the Governor, the AlaskaState Legislature, Department of Health and Social Services and the Alaska Mental Health Trust Authority.On the website you will find the full report: www.alaskabraininjury.netWe invite your comments and suggestions which you can submit to the ABIN at [email protected] day someone is involved in a car crash, a fall, a sports injury or otherincident that results in a traumatic brain injury which alters the way he or shemay live over a lifetime.Alaska Brain Injury Network, Inc3745 Community Park LoopSuite 140Anchorage, Alaska 99508Phone: (907) 274-2824Toll-free: (888) 574-2824Fax: kabraininjury.netAlaska has one of the highest TBI rates in the nation. Of recent concern is asignificant, but as yet unknown, number of Alaskan service members returningwith diagnosed and undiagnosed brain injury.With appropriate and available care, rehabilitation, community and familysupports, even the individual who is most severely injured can live at home,return to school or work, or engage in meaningful and productive life activities.The Alaska Brain Injury Network and its partners have embarked ondeveloping this 10 year state plan for the purpose of reducing theincidence of brain injury and minimizing the disabling conditionsthrough the expansion of services and supports for TBI survivors andtheir families.10ye a r t b i a l a s k a s t at e p l a noc tober2008

table of contentsExecutive Summary.2-10Introduction: Traumatic Brain Injury (TBI).11-16Chapter 1: TBI Service Delivery System.17-24Chapter 2: History of TBI planning and policies in Alaska.25-27Chapter 3: Plan of Action.27-29Developing the Plan.27Defining Core Services.28-29Core Services: I. Services and Support.30-48Information and Referral.30-32Service Coordination.33-34Acute and Post-Acute Rehabilitation.35-37Children and Youth: Education and Related Services.38-42Vocational Rehabilitation and Employment.43-44Long-Term Care and On-Going Support.45-48Core Services: II. Systems Infrastructure.49-69Public Awareness, Prevention and Advocacy.49-57Outreach and Identification.58-63Training and Workforce Development.64-66Statewide Planning and Policy Coordination.67-69Chapter 4: TBI in Alaska.70-75Overview.70-71Success Highlights.72-73Challenges to Address.74-75Appendix .76-82Acronyms.76-77Cross Cutting Goals.78Who is ABIN?.79-80ABIN Board Members.81ABIN Staff.8210ye a r t b i a l a s k a s t at e p l a noc tober20081

executive summaryWhat is a TBI?tbi definitionThe Centers for Disease Control andA traumatic brain injury (TBI) is an injury caused by a blow or jolt to the head ora penetrating head injury that disrupts the normal function of the brain. Not allblows or jolts to the head result in a TBI.Prevention (CDC) defines traumaticbrain injury (TBI) as: caused by a blowor jolt to the head or a penetratinghead injury that disrupts the normalfunction of the brain.Individuals who have TBI-related disabilities may have physical, cognitiveor emotional difficulties, or a combination of difficulties that may affect theindividual’s ability to return to home, school or work, and to live independently.The cognitive difficulties often have more impact on an individual’s recoveryand independence than his or her physical limitations.No two brain injuries are alike, which makes developing services for individualswith TBI and their families even more challenging. TBI differs from personto person, depending on the location of the injury, severity, age, pre-injuryfunctioning, substance abuse, education and other factors. While rehabilitationand service needs may be similar, the type of service and duration, as well aswhen the services are needed, may vary from person to person.Traumatic brain injury is a significant public health problem resulting in medicalcosts, lost time from work and life long disabilities, particularly for those whosustain moderate to severe injuries.u n d e r s ta n d i n g t h e a m a z i n g b r a i nParietal Lobe Sense of touch Differentiation: size, shape, color Spatial perception Visual perceptionFrontal Lobe Initiation Problem solving Judgement Inhibition of behavior Planning/anticipation Self-monitoring Motor planning Personality/emotions Awareness of abilities/limitation Organization Attention/concentration Mental flexibility Speaking (expressive language)Temporal Lobe Memory Hearing Understanding language (receptive language) Organization and sequencingOccipital Lobe VisionCerebellum Balance Coordination Skilled motor activityBrain Stem Breathing Heart rate Arousal/consciousness Sleep/wake functions Attention/concentration10ye a r t b i a l a s k a s t at e p l a noc tober20082

executive summaryTBI p y r a m i dKnownUnknownEstimatedUnidentifiedKnown800 hospitalized or fatal TBI/yearEvery year the Alaska Department of Health & Social Services reports about 800TBI cases resulting in hospitalization or death. The CDC estimates that almost3,000 Alaskans visit the emergency department each year with a mild TBI. Thereare an estimated 10,000 plus Alaskans currently living with a disability due totheir TBI.The three top causes of TBI among those admitted to a hospital from 2001-2005were falls, motor vehicle traffic crashes and assaults. Off-road motor vehiclecrashes, snow machine and ATV combined, ranks a close fourth.The highest rates of TBI are among Alaska Natives, residents of rural Alaska, youthages 15-19 in motor vehicle crashes, and elders who fall.TOP TEN CAUSES OF NON FATAL TBI HOSPITALIZ ATIONS OF ALASKA RESIDENTS, 2001 2005PE RCE NT OF T OTALUnknownAbout 3,000 emergency visitswith mild TBI/yearEstimated10,000 Alaskans living with TBIUnidentifiedSymptoms not recognized as TBI0CAUSE OF INJURY5101520253035FallsMotor Vehicle Traffic OccupantAssaultATVBicycleSnow MachinePedestrianSportsWater TransportSuicide Attempt17 percent of Alaskans do not have private insurance,with young males and Alaska Natives more likely to be uninsuredData show that alcohol was involved in one-thirdof the TBI events in AlaskaIt costs the state of Alaska millions of dollars each yearin added prison costs and loss of Federal entitlements to have peoplerecycle through the corrections system.10ye a r t b i a l a s k a s t at e p l a noc tober20083

executive summaryGetting the Right Services at the Right Timec r e at i n g a b i nThe Alaska Brain Injury Network,formerly the Alaska Traumatic BrainInjury Advisory Board, organized in2000 to fulfill the requirements of theUS Health Resources and ServicesAdministration (HRSA) Federal TBI Act.The ABIN now serves as an advisoryboard to the Department of Health andSocial Services and the Alaska MentalHealth Trust Authority.abin missionTo educate, plan, coordinate andadvocate for a comprehensive servicedelivery system for survivors of TBIand their families. The ABIN andparticipating partners have developedthis comprehensive plan to address thechallenges of this disability.Treatment and care begins from the time of injury and may span a lifetime for manyindividuals with resulting disabilities from their TBI. An effective service deliverysystem is one with a coordinated and integrated multi-disciplinary approach.The components include: emergency medical services; early intensive and acutemedical care; comprehensive rehabilitation services; community integration; andpsychosocial, vocational, community and long-term services and support.Alaskans with moderate to severe injuries generally enter the health care systemthrough emergency departments. Individuals with mild TBI, or concussion,are most likely to access services through emergency departments, clinics,physician’s offices or not at all. These individuals may experience problems laterand warrant follow-up assessment, counseling and other assistance.Screening special populations often results in identifying individuals with TBIwho have not been previously identified, but may have associated problems.These populations are often found in schools, correctional facilities, behavioralhealth programs, and domestic violence and homeless shelters. The AlaskaDivision of Behavioral Health providers routinely screen for TBI and find that onethird of those who approach their agencies for behavioral health services areidentified as having history of TBI.Patients with moderate to severe TBI who receive rehabilitation immediatelyfollowing their medical stabilization, also known as post-acute rehabilitation,have better outcomes than patients who don’t receive prompt rehabilitation.Post-acute rehabilitation may be provided in a free-standing rehabilitationprogram within a hospital, in a separate rehabilitation facility, or offered in thehome.Transition and follow up services in the individual’s home following rehabilitationis critical. Individuals with traumatic brain injury generally have troubletransferring learned behavior from one setting to another setting. It is important,therefore, to teach functional skills in context and in an established routine.Individuals with traumatic brain injury may need specialized vocational trainingand supported employment. Others may need assistance obtaining housing,or supports such as personal assistance or help with managing finances. And,others may require more intense care, especially those with significant medical,behavior or substance abuse issues.Children and youth who are injured require similar acute and rehabilitationservices as adults, but these rehabilitative services need to be tailored to theneeds of children. Rehabilitation for adults focuses on relearning skills alreadyacquired, while children, depending on their age at the time of injury, may nothave acquired certain skills. Since most children return to school, rehabilitation10ye a r t b i a l a s k a s t at e p l a noc tober20084

executive summarystaff should create transition plans to help educators develop education andlearning strategies that accommodate the disabilities of the child. It is notuncommon for TBI related disabilities to become more apparent when a childenters middle school or high school.Children with more severe injuries may require medical assistance or structuredbehavioral settings. They may be placed in residential programs, receive servicesin out-of-state programs or the family may need extensive help in their homesto care for the injured child.With such a variety of circumstances and needs, the challenge for service deliverysystems is to offer the right services at the right time – to be responsive to whenthe problems arise or are presented. One strategy for ensuring that individualsreceive timely services and supports is through service coordination.Children who experience a TBIat an early age may or may notService coordination is a critical element in helping individuals who have multipleneeds to access multiple resources. A service coordinator may facilitate the: Evaluation and assessment of needs; Information and education about the cause and effects of TBI andpreventing secondary conditions; Development of a service plan to meet the identified needs; and Provision of assistance in locating and accessing resources and servicessuch as medical care, housing, counseling, transportation, rehabilitation,vocational training, and cognitive/behavioral training.exhibit some of the behavioralandcognitiveproblemsassociated with the TBI untilthey reach adolescence.Schoolsoftenmisclassifychildren with brain injury asServices Available for Alaskans with TBISince 1992, Alaska has focused attention on how best to serve individuals withTBI and their families through existing systems. The Alaska Division of BehavioralHealth has required its providers to screen Alaskans seeking behavioral healthservices. The data show approximately one third of those applying for behavioralhealth services have history of TBI. There are other State agencies directly servingAlaskan adults and children with TBI, such as Senior and Disability Services,Vocational Rehabilitation, and Education and Early Development. There areother State agencies indirectly serving Alaskans with TBI, such as Juvenile Justice,Corrections, Public Health, and the Alaska Native Tribal Health Consortium.Because they do not screen for TBI, data collection is not possible. Moreimportantly, the services may not fully address the needs of the TBI survivors.The military has increased TBI services in the years 2007-08. Screening for thosedeployed is mandatory through the Post Deployment Health Reassessment. Inaddition, there is a mild TBI clinic at Elmendorf Hospital.having a learning disability,anemotionaldisabilityordevelopmental disability.10ye a r t b i a l a s k a s t at e p l a noc tober20085

executive summarydefining core servicesguiding principlesadopted for selecting tbiservices and supportPerson-CenteredIndividualized and self-determinedEasy to accessNo “wrong door” for servicesTimelyRight services at the right timeEffectiveEvidence and outcome basedAppropriateBased on individual strengths, needs,age, and least restrictive environmentEfficientMaximizes resources; avoids duplicationSeamlessTransitions through continuum ofcare and across systemsEquitableAccess to services and quality ofcare are provided regardless of gender,ethnicity, age, geographic locationand ability to paySafeProvides a safe and healthyenvironment, yet supports dignityof riskThe Alaska Brain Injury Network, Inc. and their collaborators have defined theservices and resources needed to support individuals with TBI and promoteindependence and success. These services aim to be in the least restrictiveenvironment with the highest quality care.The core services selected are organized under two major headings:I. services and supports Information and Referral Service Coordination Acute and Post-Acute Rehabilitation Children and Youth: Education and Related Services Vocational Rehabilitation and Employment Long-Term Care and On-Going SupportII. Systems Infrastructure Public Awareness, Prevention and Advocacy Outreach and Identification Training and Workforce Development Statewide Planning and Policy CoordinationThe ABIN and partners recognize that a strong system of services that are timelyand efficient will be dependent on interagency collaboration, common goalsand defined outcomes. Data across systems will be needed to assess progresstoward the overall goal of this plan, which is to improve existing systems andexpand services.Anticipated results of improving existing systems and expandingservices: Fewer number of Alaskans sustaining a TBI. Efficient and coordinated TBI services that result in seamless transitionsalong a continuum from scene of injury to home and communitysupports. Maximize recovery through community integration and supportservices to enable individuals with TBI and their families to return tohome, work or school. Improved health, safety, social, educational and employment outcomesfor individuals with TBI.10ye a r t b i a l a s k a s t at e p l a noc tober20086

executive summaryrecommendationsThe ABIN has set forth the following recommendations to implement, improveor expand programs to offer a seamless system of these services and supports.These recommendations have emerged from defining service requirements,assessing current capacity, and then identifying gaps. Implementing theserecommendations may require funding, which may include federal grants, federalprograms (i.e. Medicaid), state funding or other sources, as well as coordinationwith existing resources among state and local agencies and partners. Chapter 3of this plan provides a description of the services and detailed recommendationsover a 10 year time frame. The following are prioritized recommendations.William B. Anchorage, AK.Motorcross crash, May 26, 2007,resulting in traumatic brain injury.Received acute and post-acuterehabilitation. 46 days in the hospital.Today William lives at home. His dayincludes school, appointments, andongoing rehabilitation efforts.Information and Referral Continue Resource Navigator(s), supporting materials, web site andphone line (toll free) beyond 2009. Expand the United Way 2-1-1 capabilities to include TBI resource andservices information. Expand Aging and Disability Resource Center capabilities to include TBIresource and services information. Develop and provide educational packets for TBI patients in emergencydepartments, clinics, doctor’s offices, and other health care settings.Service Coordination (Care Coordination or Case Management) Two (2) positions for TBI Service Coordination as a Demonstration Projectin FY 2010, with the goal of expanding to cover either (1) additionalpersons with TBI and/or (2) to cover additional regions of the state insubsequent years. Expand care coordinator capacity in other agencies that may serve TBIthrough training on brain injury and available resources. Develop andcontinue protocols with hospitals for linking individuals to servicesfollowing TBI. Develop Memorandum of Understanding with agencies to helpcoordinate case management services across agencies (establish primary,secondary TBI service coordinators; facilitate team planning).Acute and Post-Acute Rehabilitation Develop funding options through general revenue, federal grant,Medicaid and private insurance to pay for post-acute rehabilitationand therapies. Identify and develop community providers for rehabilitation services. Pilot program models for delivery of rehabilitation services (i.e. in-staterehabilitation facility, telerehab, mobile rehab clinic, in-home therapies). Pool resources for rehabilitation service system (i.e. Veteran Affairs,Department of Defense, Indian Health Services, and Worker’sCompensation).10ye a r t b i a l a s k a s t at e p l a noc tober20087

executive summaryChildren and Youth: Education and Related Services Support the Bring the Kids Home initiative. Expand capacity for helping families with children with TBI under theAlaska Parent Training Initiative at Stone Soup Group and other parenttraining programs. Provide training to educators and paraprofessionals on brain injuries,identify resources to help educators work with students who have TBIon academic and behavior. Utilize Special Education Service Agency (SESA) and Stone Soup Groupas resources and as trainers to school districts. Collaborate with Vocational Rehabilitation and Tribal VocationalRehabilitation to increase employment opportunities for studentswith TBI who are transitioning from school into adult life.Parent and educator training.Vocational Rehabilitation and Employment Increase long-term supported employment programs (job coaching). Expand Mental Health Customized Employment Grant to include TBI. Provide training to VR counselors, community VR providers, andemployers on TBI. Develop pre-vocational options to prepare people for vocationalrehabilitation services.Independent living skills training.Long-term Care and On-Going Support Apply for and fund a Home and Community-Based Services (HCBS)Medicaid Waiver for individuals with TBI who need long-term care,but are not eligible for community-based services as offered in otherHCBS waiver programs. Expand existing waivers to serve TBI. Fund similar services for non-Medicaid eligible individuals. Obtain state or AMHTA funds as seed money to start ClubHouse/day programs for TBI. Include TBI in Senior and Disability Services efforts to developperson-centered hospital discharge planning model to helptransition to community services.10ye a r t b i a l a s k a s t at e p l a noc tober20088

executive summaryrecommendationsPublic Awareness, Prevention, and Advocacy Continue public awareness campaigns that inform Alaskans about TBI. Enact booster seat legislation. Develop and implement an elder fall prevention program. Support local helmet use ordinances. Adopt ImPACT concussion management system for school sports andexpand to semi-professional leagues. Recruit and train TBI self-advocates.Prevention is the only cure for brain injury.Post-injury employment rates forindividuals with TBI range from 22percent to 55 percent, and wage levelsfor those who returned to work postinjury have also been low.Research has demonstrated favorableemployment outcomes followingparticipation in supported employment,while other studies have indicated thatcollege, counseling and job placementresult in successful employment.Outreach and Identification Develop outreach materials and disseminate. Develop materials that are culturally appropriate. Increase TBI screening among high risk populations in these settings:- Schools to better identify children and youth with TBI, as defined by IDEA;- Correctional facilities;- Long-term care facilities to identify older adults who may havean undiagnosed TBI;- Health clinics, emergency departments and other health care settings;- Post-deployment to identify returning service members who may beundiagnosed or misdiagnosed.Training and Workforce Development Develop distance delivered TBI curriculum. Conduct training through existing educational certificate andendorsement programs. Conduct training through agency sponsored workshops/conferencesfor direct care providers, educators and other professionals/paraprofessionals. Expand core competencies for the workforce to address TBI. Expand telehealth for training providers and families, particularly in rural areas.Statewide Planning and Policy Coordination Continue TBI Advisory Board role as the planning board for theDepartment of Health and Social Services and the Trust, maintainingfunding eligibility under HRSA TBI ACT. Continue to provide a venue for consumer input on the TBI servicedelivery system. Expand data capacity across pertinent programs to evaluate the TBIservice delivery system; i.e individuals served, services provided,expenditures and outcomes. Continue TBI participation among the 4 statutory advisory boards. Develop Memorandum of Understanding to coordinate program data;individual service planning, including TBI documentation/evaluations,subject to confidentiality release of information. Evaluate post consumer satisfaction surveys every 2 years.10ye a r t b i a l a s k a s t at e p l a noc tober20089

executive summaryimplementation of recommendationsTo promote this plan, ABIN will coordinate the participation of partner agencies,policy makers, community providers and advocates in developing strategies forimplementation. The ABIN Board of Directors invites public comment on theplan’s recommendations, as well as public participation in growing a system inAlaska where TBI survivors thrive and are well served. Progress will be reportedto the ABIN Board and key partners annually.To learn more about the 10 Year TBI State Plan and find out how you can getinvolved, please visit the Alaska Brain Injury Network website:www.alaskabraininjury.netTBI Survivor and Family Member Panel.ABIN workshop in Barrow, Alaska.Dr. Russell Cherry, ABIN Board Member and Neuropsychologist.ABIN Board and staff listening to public comment in Kodiak, Alaska.Dr. Heather Macomber, ABIN BoardMember and Neuropsychologist,answering questions from Tok resident.ABIN workshop in Tok, Alaska.10ye a r t b i a l a s k a s t at e p l a noc tober200810

introductiontraumatic brain injury (TBI): in an instant, for a lifetimetbi definitionThe Centers for Disease Control andPrevention (CDC) defines traumaticbrain injury (TBI) as: caused by a blowor jolt to the head or a penetratinghead injury that disrupts the normalfunction of the brain. Not all blowsHolly is a 24-year-old woman who was injured in a car crash. She was diagnosed as havinga traumatic brain injury. She didn’t recognize anybody – not even her parents. Her mothersays that her main concern is that her daughter is forgetful, moody and sometimes veryemotional, not like she used to be.Her mother wants to get Holly into some kind of program, but she doesn’t have theresources. She was unsuccessful in qualifying Holly for Medicaid. Her parents are frustratedabout not being able to help their daughter resume her life after traumatic brain injury.Had Holly received the right services at the right time her story could read:or jolts to the head result in a TBI. Theseverity of a TBI may range from “mild,”i.e., a brief change in mental statusor consciousness to “severe,” i.e., anextended period of unconsciousness oramnesia after the injury.Holly was in a car crash; she was wearing her seat belt. She had physical injuries as wellas injuries to her head, resulting in traumatic brain injury. She received medical care atthe hospital. After acute care where she became medically stable, she received post-acuterehabilitation (i.e. physical, speech and language, and occupational therapies) where shewas taught coping skills for her emotions and compensatory strategies for her memory.Upon discharge from rehabilitation, a service coordinator was instrumental in helpingher develop short and long-term goals, helping access appropriate services to reachthose goals, and providing education and supports to the family about TBI. Holly seesa behavioral health specialist who is trained in TBI to help her and her family with heremotional issues. Holly is also in vocational rehabilitation. As a result of these coordinatedservices, Holly is able to learn how to function independently.Her mother is able to return to work while Holly begins a journey of discovering how to bestlive with her brain injury and pursue educational and vocational goals.Many Alaskans would benefit from the right services at the right time10ye a r t b i a l a s k a s t at e p l a noc tober200811

introductiontraumatic brain injury (TBI): in an instant, for a lifetimeSymptoms of “mild” brain injury includeheadache, dizziness, vertigo (a sensationof spinning around or of objects spinningaround the patient), memory problems,trouble concentrating, sleeping problems,restlessness, irritability, apathy, depressionand anxiety. These symptoms may last fora few weeks after the brain injury.Traumati

The Alaska Brain Injury Network (ABIN), Inc. thanks the many people who have been involved over the years with conducting needs assessments and holding public forums to gain input to help Alaska state government to envision a service delivery model for persons with brain injury. This includes the Alaska Brain Injury Network, Inc. committee