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

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.

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

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

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

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)

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

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

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

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

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

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)

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

Summary of State Wide Assessments

Data were gathered from many sources

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)

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

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

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?

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

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

Medicaid Survey

Regularly used services– Behavioral

consultation (34)– Supervised care (30– Transportation (27)– Responding to

emergency (27)

0102030405060

Services Used Daily

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

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

Statewide Needs and Resource Mailed and Web Survey

March to July 2001

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%)

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

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)

Person with TBI Quality of LifeBefore and After Injury

0%

20%

40%

60%

80%

100%

excellentaboveave

ave belowave

poorafterbefore

Services Requested

0%20%40%60%80%

100% want helphave helpdon't need

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%

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

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

Consumer Services

8

13

17

86

14

24

20

9

0

5

10

15

20

25

Type of Service By Setting

0

10

20

30

40

50

60

70

80

90

Ref

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Home basedSkilled nursing ResidentDay treatComm-based OutpatientInpatient

Type of Setting by Service

0

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100

150

200

250

300

Out

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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

Employment Services

2925 24 24 24

21 20 20 20 1917 15

13

6

0

5

10

15

20

25

30

35

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”

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

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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

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Idaho State University Institute of Rural Health 10-01

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

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: spearuss@isu.eduWebsite: www.isu.edu/irh/TBI