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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
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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.
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Comparison of Annual IncidenceA 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
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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 TBISources: 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
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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
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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)
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39 39
242024
54
7
47
15
54
33
1117
5854
41
31
66
910
33
48
010203040506070
Health Professions Workforce
216
76
193145
577
159198
798
0100200300400500600700800
RNs Physicians SocialWorkers
Home Health
Professions With Less Than 100 Per 100,000
Professions With More Than 100 Per 100,000
Idaho US
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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 components1. Statewide TBI Advisory Board2. Designated agency responsible for State TBI activities3. A statewide needs/resource assessment 4. A statewide action plan to develop a comprehensive, community-based
system of care
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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
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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
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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
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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)
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State TBI Planning Grant Goal 4: Statewide Action Plan
Project staff will summarize data and make recommendations
Advisory Councils will review planDraft completed by Oct 2001Application for implementation
grant will be submitted Dec 2002
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Summary of State Wide Assessments
Data were gathered from many sources
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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)
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BIA Survey
0%10%20%30%40%50%60%70%80%90%
100%
Aware/Ed/PreventHealthcare
Adaptive servSoc Support
Career/Finance
General Resources
ProfesionalInd/Family
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BIA Information and resource telephone log
Info/Ed30%
Health18%
Community Support
33%
Self-determination
13%Employment
4%
Housing2%
1998-2001 ID-BIA call log 149 calls, 228 life areas
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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?
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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
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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
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Medicaid Survey
Regularly used services– Behavioral
consultation (34)– Supervised care (30– Transportation (27)– Responding to
emergency (27)
0102030405060
Services Used Daily
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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
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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
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Statewide Needs and Resource Mailed and Web Survey
March to July 2001
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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%)
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Reported Cause of TBI
Bicycle accident (N=7)2%
Other (N=41)14%
Motor Vehicle Accident (N=137)
48%
Violence (N=24)8%
Other accident (N=49)
17%
Medical condition (N=26)
9%
Near drowning (N <5)
2%
Total (n=288) exceeds participants (n=272) because some reported more than one cause
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Sources of Total Household Income
0%
20%
40%
60%
80%
100%
< $7,500 $7,500 -$14,999
$15,000 -$24,999
$25,000 -$34,999
35,000-$49,000
$50,000 -$74,999
$75,000 +
Social security / retirement (N=121) Employment (N=93)Income from family (N=64) Legal settlement (N=24)Public Assistance (N=18) Income from other (N=16)Worker’s comp. (N=9) Unemployment compensation (N=2)
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Person with TBI Quality of LifeBefore and After Injury
0%
20%
40%
60%
80%
100%
excellentaboveave
ave belowave
poorafterbefore
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Services Requested
0%20%40%60%80%
100% want helphave helpdon't need
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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%
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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 IssuesFamily quality of life before,
quality of life after, bothered by traumatic memories
– Person with TBI IssuesHousehold 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
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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
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Consumer Services
8
13
17
86
14
24
20
9
0
5
10
15
20
25
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Type of Service By Setting
0
10
20
30
40
50
60
70
80
90
Ref
erO
cc. T
xS
oc W
k
Phy
Tx
Sp
& L
ang
A. R
ehab
Cas
e M
Ind
Liv
Nur
sing
Ast
Tec
hC
og T
xS
wal
low
Pre
-Voc
Psy
logy
Rec
Tx
Driv
er E
d
Ed/
Sp
Ed
Neu
robe
hA
dvoc
acy
Sub
Ab
Psy
atry
Orth
oD
enta
l
Tele
heal
th
Home basedSkilled nursing ResidentDay treatComm-based OutpatientInpatient
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Type of Setting by Service
0
50
100
150
200
250
300
Out
patie
nt
Inpa
tient
Com
m-
base
d
Day
trea
t
Hom
eba
sed
Ski
lled
nurs
ing
Res
iden
t
Soc Wk Occ. Tx Phy Tx Sp & Lang Refer Nursing A. Rehab SwallowInd Liv Case M Ast Tech Cog Tx Psylogy Pre-Voc Rec Tx NeurobehDriver Ed Ed/Sp Ed Advocacy Psyatry Sub Ab Ortho Dental Telehealth
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Employment Services
2925 24 24 24
21 20 20 20 1917 15
13
6
0
5
10
15
20
25
30
35
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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”
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C ore C om p on an tsE xis tin g R esou rc eIm m ed ia te S u cces s
P lan n in g
E s tab ils h A d viso ryC ou n c ilIn ju ry C on tro lP rog ramA waren essE d u c ationM ed ica id W aive r
E arlyS u c cess
H ard M on ey S oft M on ey
S ec u reF u n d in g
D eve lop P lan sfo r im p lem en ta tion
R e-d o n eed sas s es sm en t
L a terS u cc ess
Im p lem en ta tion
Tru s tred o n eed sas s es sm en tTB I ag en c y
P os tIm p lem en ta tion
B u ild in gB loc ks
CO
NF
IDE
NTI
AL
DR
AF
T D
O N
OT
CIR
CU
LATE
CO
NF
IDE
NTI
AL
DR
AF
T D
O N
OT
CIR
CU
LATE
Idaho State University Institute of Rural Health 10-01
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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
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For Additional Information:
Russell C. Spearman, M.Ed.Project Director, Traumatic Brain Injury Program Institute of Rural Health Idaho State University-Boise Center12301 W. Explorer Drive, Suite 102Boise, ID 83713Phone: (208) 685-6767Fax: (208) 327-7430E-Mail: [email protected]: www.isu.edu/irh/TBI