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Report from the Traumatic Brain Injury State Planning Grant for the State of Idaho

Report from the Traumatic Brain Injury State Planning Grant for the State of Idaho. Idaho State University Institute of Rural Health www.isu.edu/irh/TBI

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Report from the Traumatic Brain Injury State Planning Grant for the State of Idaho

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  1. Report from the Traumatic Brain Injury State Planning Grant for the State of Idaho Idaho State University Institute of Rural Healthwww.isu.edu/irh/TBI Funding through the Idaho Department of Health and Welfare, Bureau of Developmental Disabilities from the HRSA Maternal and Child Health Bureau, US Dept of Health and Human Services Russell C. Spearman, M.Ed Project Director

  2. Traumatic Brain Injury An insult to the brain, not of degenerative or congenital nature, caused by an external physical force that may produce a diminished or altered state of consciousness, which results in an impairment of cognitive abilities or physical functioning and/or a disturbance of behavioral or emotional functioning.

  3. Comparisonof Annual Incidence A comparison of Traumatic Brain Injury and Leading injuries or Diseases Traumatic Brain Injuries 1,500,000 2,000,000 1,500,000 1,000,000 500,000 Breast Cancer 176,3000 HIV/AIDS 43,681 Spinal Cord Injuries 11,000 Multiple Sclerosis 10,4000 100,000 10,000

  4. National TBI Facts • 1. 5 million people will sustain a Traumatic Brain Injury annually • 80,000 people annually experience the onset of long term disabilities following TBI • 50,000 people die as a result of their injuries • The annual direct medical cost is about 4 billion dollars • There are currently 5.3 Americans living with a disability as a result of a TBI Sources: Centers for Disease Control. “Traumatic Brain Injury in the United States: A Report to Congress”. (January 16, 2001) http:www.cdcgov/ncipc/pub-res/tbicongress.htm

  5. Idaho TBI Facts • No one knows exactly how many Idahoans are living with TBIs, using CDC estimates, • 25,879 people living with TBI • 1999: 97 injury deaths in Idaho related to trauma <18 • 4,074 hospitalizations related to trauma in children <18 • 108,640 emergency dept visits related to trauma <18 • IDHW Vital Statistics report • motor vehicle related accidents for children <18 was the highest reported cause of injury (2,580) Estimates from CDC and other government agencies, best estimates

  6. Rural Idaho Requires Real Change • 40% live outside of urban areas on 90% of the state’s land • 14th largest state with 12th smallest population • 90% of the state is a health professions shortage area • High employment rates (16th) • Low wage-bases (42nd) • Poor physician to patient ratio (49th)

  7. Idaho US Health Professions Workforce Professions With Less Than 100 Per 100,000 Professions With More Than 100 Per 100,000

  8. Traumatic Brain Injury State Planning Grant Program • As of fiscal year 2001 • 44 total • 5 newly funded in 2001 • 22 states had received planning grants by 2000 • 17 states had received implementation grants by 2000 • Grants to assist states’ infrastructure through four core components • Statewide TBI Advisory Board • Designated agency responsible for State TBI activities • A statewide needs/resource assessment • A statewide action plan to develop a comprehensive, community-based system of care

  9. Idaho State Planning Grant • Idaho received a 2-year planninggrant in FY 2000 • Project Goal • develop a comprehensive, coordinated, community-based system of support for individuals with a TBI and their families that addresses all age groups, levels of acuity, and racial and ethnic groups

  10. State TBI Planning Grant Objective 1: TBI Advisory Councils • Charter sanctioned • 3 regional & an Intra-agency council • Executive group; 2 reps from each council • Council makeup (n=35) • 65% are persons with a brain injuryor family members • 16% are Hispanic or American Indian • Over thirty categorical designations represented

  11. State TBI Planning Grant Objective 2: Lead State Agency • Solidify the role of the ID-DHW • Family And Children’s Services as the lead coordinating agency • TBI Services Commitment • collaboration agreement is the product from the work of the intra-dept work group

  12. State TBI Planning Grant Objective 3: Statewide Assessment • Data Sources • Brain Injury Association-Idaho membership survey, call logs (n=244) • St. Al's, 1998 focus groups (n=27) • Idaho Medicaid survey (n=100) • 1998 Co-Ad focus group results (n=4) • SWOT TBI advisory councils, Idaho Rural Health Association Meeting (n=4) • Website portal of health and human service entities in Idaho • Planning Grant agency & consumer surveys (n=272) consumers/family members,(n=194 agencies/providers) • Legislative survey in process (n=105) • Two policy national analyses (TBI and trauma registry)

  13. State TBI Planning Grant Goal 4: Statewide Action Plan • Project staff will summarize data and make recommendations • Advisory Councils will review plan • Draft completed by Oct 2001 • Application for implementation grant will be submitted Dec 2002

  14. Summary of State Wide Assessments Data were gathered from many sources

  15. BIA Membership survey results    • Mailed survey • Fall 2000 • 94 respondents • 60% female, 40% male • Average age at injury 28 years (mode 18) • 28% MVA, 15% sports related, • remainder causes <5 (20% ea)

  16. BIA Survey

  17. BIA Information and resource telephone log 1998-2001 ID-BIA call log 149 calls, 228 life areas

  18. DD Council & St. Alphonsus Regional Medical Center Focus Groups • Focus groups conducted in 2000 • Two sets of groups • Individuals & Family members, N=49 • Professionals = N=85 • Asked • What are needed resources? • Are the resources available in Idaho? • What actions are needed to fill service gaps, give access, ensure availability?

  19. Individuals and Families Needs: Voc Services & Jobs Available: Family & friends Gaps: Med Community lacks knowledge of BI Solutions: Mentoring for injured and non-injured in employment/school settings Professionals Needs: support, respite care Available: Acute inpatient services Gaps: lack of community-based services Solutions: frequent professional in-service training Top Results from Focus Groups

  20. Medicaid survey results • Mailed survey, June 1998 • Focused on services • 94 respondents to 250 surveys • Mailed primarily to Div. Of Voc. Rehabilitation • Level of Care • 28 in nursing homes, 25 more qualified • 37 living in family home • 12 other

  21. Medicaid Survey • Regularly used services • Behavioral consultation (34) • Supervised care (30 • Transportation (27) • Responding to emergency (27)

  22. Strengths rehab care awareness telehealth commitment support groups parent involvement access to care interest good care available TBI Waiver Weaknesses public awareness family support transportation funding gaps hidden disability access diagnoses transitions Summary Regional Advisory Council SWOT Analysis

  23. Duke Center for Health Policy Index • Duke Center for Health Policy, Law, & Management • State Health Policy Web Portal Group • State health policy information, links to agencies, organizations, information • Idaho’s portal maintained by IRH and includes a review of TBI-related information

  24. Statewide Needs and Resource Mailed and Web Survey March to July 2001

  25. Consumers: Methodology & Demographics • Mailed Survey • Approved by ISU Human Subject Committee • 272 people completed survey • 146 with TBI, 114 family member • 65% male, 35% female • 25.2 years old at first TBI • Quality of life (on scale of 1 to 5) • Before TBI 3.65 (.09 SEM) • Now, after TBI 2.19 (.08 SEM) • 35 of 44 counties represented (80%)

  26. Reported Cause of TBI Total (n=288) exceeds participants (n=272) because some reported more than one cause

  27. Sources of Total Household Income

  28. Person with TBI Quality of LifeBefore and After Injury

  29. Services Requested

  30. Who offered help/advised?(3 factors) Medical advice Hospital staff, specialist, ER staff, (no one), primary care provider Social/human service advice Social work, hospital staff, (no one), self-help, VR counselor Long-term/validation Attorney & mental health Satisfaction range 76-89% except employment at 54% Satisfaction with Services(2 factors) Community re-entry/life skills personal care; assistance with chores, cognitive training, money management, community skills, nursing, housing, and employment Medical/Rehab Therapy Occupational, physical, speech therapy; nursing, mental health counseling, other assistance Satisfaction range 67-84% Summary of Factor Analyses (Models hypothesized based on theory, GLS extraction with varimax rotation)

  31. Changed Family Life (3 factors) Family function/status Changed marriage/family, employment, living situation, psychological health, medical health, social status. Caregiver Issues Family quality of life before, quality of life after, bothered by traumatic memories Person with TBI Issues Household income last year, individual quality of life before, individual qualityof life after. Economic Issues (3 factors) Family Socieoeconomic Status Lives in house/apt, travel method; changed family/marriage, employment, living situation, medical health psychological health, social status, income from social security/retirement Independent Living Live in house/apt, travel in own car, household income, income from employment, lack of income from social security/retirement, individual quality of life before and after injury Ability to Work Work potential, through job, vocational testing, job training, other work potential evaluation Summary of Factor Analyses (Models hypothesized based on theory, GLS extraction with varimax rotation)

  32. Agencies: Methodology & Demographics • Mailed Survey • Approved by ISU Human Subject Committee • 182 returned from • 104 (57%) public • 25 (14%) private • 53 (29%) selected not-for-profit • 53% serve those with TBI • Located in or provide to all counties in state • Served median 5 people (0-536) 1/1/00-2/31/01

  33. Consumer Services

  34. Type of Service By Setting

  35. Type of Setting by Service

  36. Employment Services

  37. Comprehensive Analysis Overview • Consumer and family/significant other Involvement • Two sets of experience, person with TBI, Family/caregiver • All six life areas important • Individual/family support, health, housing, education, self-determination, and particularly employment • Public Awareness • Assistive technology, adaptive employment, public opinion • Referrals • Are there sufficient places to accept the referrals or is this a sign of the “run-around”

  38. CONFIDENTIAL DRAFT DO NOT CIRCULATE Idaho State University Institute of Rural Health 10-01

  39. Implementation Grant Goals: • Continue Advisory Councils • Coordinate with Injury Control and Prevention • Coordinate Resources • Conduct Educational Activities • Address Reimbursement for Services • Work for System Change

  40. For Additional Information: Russell C. Spearman, M.Ed. Project Director, Traumatic Brain Injury Program Institute of Rural Health Idaho State University-Boise Center 12301 W. Explorer Drive, Suite 102 Boise, ID 83713 Phone: (208) 685-6767 Fax: (208) 327-7430 E-Mail: spearuss@isu.edu Website: www.isu.edu/irh/TBI

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