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Report from the Traumatic Brain Injury State Planning Grant for the State of Idaho Idaho State University Institute of Rural Health

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Presentation on theme: "Report from the Traumatic Brain Injury State Planning Grant for the State of Idaho Idaho State University Institute of Rural Health"— Presentation transcript:

1 Report from the Traumatic Brain Injury State Planning Grant for the State of Idaho Idaho State University Institute of Rural Health 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 Comparison of Annual Incidence A comparison of Traumatic Brain Injury and Leading injuries or Diseases 2,000,000 1,500,000 1,000,000 500,000 100,000 10,000 Multiple Sclerosis 10,4000 Spinal Cord Injuries 11,000 HIV/AIDS 43,681 Breast Cancer 176,3000 Traumatic Brain Injuries 1,500,000

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 14 th largest state with 12 th smallest population 90% of the state is a health professions shortage area High employment rates (16 th ) Low wage-bases (42 nd ) Poor physician to patient ratio (49 th )

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

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 1. Statewide TBI Advisory Board 2. Designated agency responsible for State TBI activities 3. A statewide needs/resource assessment 4. A statewide action plan to develop a comprehensive, community-based system of care

9 Idaho State Planning Grant Idaho received a 2-year planning grant 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 injury or 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 Top Results from Focus Groups 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

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 Summary Regional Advisory Council SWOT Analysis 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

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 Life Before and After Injury

29 Services Requested

30 Summary of Factor Analyses (Models hypothesized based on theory, GLS extraction with varimax rotation) 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%

31 Summary of Factor Analyses (Models hypothesized based on theory, GLS extraction with varimax rotation) 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 quality of 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

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: Website:

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