Coming into FocusA Needs Assessment and State Plan

for Iowans with Brain Injury

A project of the Iowa Department of Public Health

With the Iowa Advisory Council on Head Injuriesand The Iowa University Affiliated Program

November 1998

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Coming into FocusA Needs Assessment and State Plan

for Iowans with Brain Injury

Prepared For:

The Iowa Advisory Council on Head Injuries and Its State Plan Task Force

Prepared By:

The Iowa Department of Public Health,Bureau of Disability Prevention throughThe Iowa University Affiliated Programand Hoyt-Mack Research Associates

Part of the funding for this projectwas provided by a Maternal and Child Health Grant

(Traumatic Brain Injury (TBI) Demonstration Grants Program, CFDA #93.234A)

ADVISORY COUNCIL ON HEAD INJURIES Iowa Department of Public Health

Ed BollVillage Northwest Unlimited

Margaret J. CurryDanville

Laurie DyerDes Moines

Emily EmoninFairfield

Dave GreimannWork Consultants

Angela HanceCreston

Roger HoffmannUniversity Hospital School

Joni HendersonIndependence

Delbert L. JensenSt. Ansgar

Karen A. JohnsonDavenport

Geoffrey LauerBrain Injury AssociationOf America

John A. May, MDDes Moines

Beverly J. McClungMason City

Esthyr RopaIowa Division of Voca-tional Rehabilitation

Marvin Tooman, EdDOn With Life

Theodore WellsIowa City

Robert Vander PlaatsOpportunities Unlimited

Paul DeBoerIowa Department of PublicHealth

Department of Public Health

Janet ZwickProject Director

Roger ChapmanProject Manager

Paul DeBoerProject Coordinator

Mario SchootmanEpidemiologist

Iowa�s University Affiliated Program

Roger HoffmannProject Director

Barbara SmithNeeds Assessment Coordinator/Writer

Loretta PoppDesign Artist

Jude WestPlanning Facilitator

Mary McIntoshAdministrative Support

Hoyt Mack Research AssociatesResearch Consultants

EX-OFFICIO MEMBERSADVISORY COUNCIL ON HEAD INJURIES

Christopher G. Atchison, Director(Roger Chapman, Representative)Department of Public Health

Terry Dillinger, Director(Scott Falb, Representative)Office of Driver ServicesDepartment of Transportation

Ted Stillwell, Acting Director(Sue Pearson, Representative)Department of Education

Almo Hawkins, Director(John Ten Pas, Representative)Department of Human Rights

Margaret Knudsen, Administrator(Ruth Burrows, Representative)Division of Vocational Rehabilitation

Charles Palmer, Director(Janet Shoeman, Representative)Department of Human Services

R. Creig Slayton, Director(Bonnie Lindquist, Representative)(Jane OíBrien, Representative)Department for the Blind

Theresa Vaughan, Commissioner(Angela Burke-Boston, Representative)Iowa Insurance Division

PLANNING PROJECTPERSONNEL AND CONSULTANTS

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Angela HanceCreston

Joni HendersonIndependence

Kathy HerringOn With LifeAnkeny

Linda HintonDirector, Iowa Association

of Residential andRehabilitation Facilities

Urbandale

Roger HoffmannUniversity Hospital SchoolIowa City

Deborah HughesAttorney-at-LawCedar Rapids

Delbert L. JensenSt. Ansgar

Karen A. JohnsonDavenport

JoAnn KazorDepartment of Human

ServicesDes Moines

Geoffrey LauerRegional Brain Injury

AssociationIowa City

Bonnie LinquistDepartment for the BlindDes Moines

Janet MapelUniversity Hospital SchoolIowa City

John A. May, MDDes Moines

Beverly J. McClungMason City

Brenda MooreChild Health Specialty ClinicsIowa City

Sue PearsonBrain Injury ConsutantSpecial EducationDepartment of EducationIowa City

Sidney RamseyIowa Health SystemDes Moines

Esthyr RopaDivision of Rehabilitation Ser-

vicesDepartment of EducationSioux City

Theodore WellsIowa City

Mary SchertzEarly InterventionDept. of EducationDes Moines

Janet ShoemanDepartment of Human ServicesDes Moines

Barbara SmithUniversity Hospital SchoolIowa City

Marvin Tooman, Ed.D.On With LifeAnkeny

Robert Vander PlaatsPresident & CEO,

Opportunities UnlimitedSioux City

Theodore WellsIowa City, IA 52246

Debra WestfoldIowa State Association

of CountiesDes Moines

Beth ZaugRESCARE Inc.Ottumwa

Marilyn AdamsFarm Safety 4 Just KidsEarlham, IA

Karen ArmstrongVictorian Acres RehabilitationAltoona

Ed BollVillage Northwest UnlimitedSheldon

Angela Burke-BostonAttorney-at-LawInsurance DivisionDes Moines

Ruth BurrowsDepartment of EducationDivision of Vocational RehabilitationDes Moines

Pat CrawfordExceptional Persons, Inc.Waterloo

Margaret J. CurryDanville

Paul DeBoerIowa Department of Public HealthDes Moines

Kay DeGarmoIowaís University Affiliated ProgramUniversity of IowaIowa City

Laurie DyerIowa Department of PersonnelDes Moines

Emily Emonin506 E. BuchananFairfield, IA 52556-3812

Dave GreimannWork ConsultantsAnkeny

Paul GreeneIowa Council for Early

Intervention ServicesWaterloo

STATE PLAN TASK FORCE MEMBERS

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Table of contents

Introduction ................................................................................... 1

1 . Who are the people with brain injuries in Iowa?. .............. 3

2 . What is the health status and well beingof Iowans with brain injury? ................................................ 10

3 . What array of services should be availablefor Iowans with brain injury? ............................................... 19

4. Does Iowa have the needed array of servicesavailable in a coordinated comprehensivefamily-centered system? .................................................... 22

5 . Is the array of services accessibleto survivors and their families? ........................................... 29

6. Is the system meeting the needsof survivors and their families? ........................................... 38

7 . What can be done to improve Iowa’s services andsupports for people with brain injury and their families?

The Iowa Plan for Brain Injury ........................... 43

References ................................................................................... 47

In t roduct ion

Coming Into Focus presents a needs assess-ment related to Iowans with brain injury, anda state action plan to improve Iowa’s ability tomeet those needs. Support for this projectcame from a grant from the Office of Mater-nal and Child Health to the Iowa Departmentof Public Health, Iowa’s lead agency for braininjury. The report is a description of theneeds of people with brain injuries in Iowa,the status of services to meet those needsand a plan for improving Iowa’s system ofsupports.

Brain injury can result from a skull fracture orpenetration of the brain, a disease processsuch as tumor or infection, or a closed headinjury, such as shaken baby syndrome. Trau-matic brain injury is a leading cause of deathand disability in children and young adults(Fick, 1997). In the United States there are asmany as 2 million brain injuries per year, with300,000 severe enough to require hospital-ization. Some 50,000 lives are lost everyyear to TBI. Eighty to 90 thousand peoplehave moderate to acute brain injuries thatresult in disabling conditions which can last alifetime. These conditions can include physi-cal impairments, memory defects, limitedconcentration, communication deficits, emo-tional problems and deficits in social abilities.

In addition to the personal pain and chal-lenges to survivors and their families, the

financial cost of brain injuries is enormous.With traumatic brain injuries, it is estimatedthat in 1995 Iowa hospitals charged some$38 million for acute care for injured persons.National estimates offer a lifetime cost of $4million for one person with brain injury(Schootman and Harlan, 1997). With thisestimate, new injuries in 1995 could eventu-ally cost over $7 billion dollars.

Dramatic improvements in medicine, and thedevelopment of emergency response sys-tems, means that more people sustainingbrain injuries are being saved. How can weinsure that supports are available to thisemerging population? We have called thereport Coming into Focus, because, despitethe prevalence and the personal and financialcosts to society, brain injury is poorly under-stood.

The Iowa Department of Public Health, theIowa Advisory Council on Head Injuries StatePlan Task Force, the Brain Injury Associationof Iowa and the Iowa University AffiliatedProgram have worked together to beginanswering this question. A great deal of goodinformation already existed. This projectbrought this information together, gatherednew information where it was needed, andcarried out a process for identifying whatneeds to be done in Iowa, and what thepriorities will be.

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To answer these questions, the project useda variety of existing resources. These arelisted as references at the end of the docu-ment, but included the following importantpieces:

Iowa Advisory Council on Head Injuries,Annual Report 1996

Traumatic Brain Injury Rehabilitation Database,Iowa Department of Public Health

Central Registry on Brain and Spinal CordInjury Annual Reports, 1994, 1995, 1996Iowa Department of Public Health

Life After Brain Injury, Iowa Department ofPublic Health

Survey by the Brain Injury Association of Iowa

Training needs surveyIowa University Affiliated Program

Department of Education Surveyof AEA Brain Injury Teams

In addition to working with existing docu-ments, the project funded an extensive sur-vey of both providers and consumers. Thesurvey was conducted by Hoyt-Mack andAssociates, of Ames Iowa. Hoyt-Mack workedwith the Advisory Council on Head Injuries,the Iowa Dept. of Public Health and the IowaUniversity Affiliated Program to develop thesurveys.

The needs assessment portion of this docu-ment was designed to answer questions thatwould lead to a solid plan for improving theservice delivery system to people with braininjury in Iowa. It was also designed to beunderstood by a wide variety of audiences,including those that may be unfamiliar withissues surrounding brain injuries.

In August and September of 1998, The StatePlan Task Force of the Iowa Advisory Councilon Head Injuries met to review the needsassessment and to use it in developing astate plan.

Neither the needs assessment or the plan areintended to be permanent fixtures. Bothshould be reassessed on a regular basis butthey provide an important place to start.

We hope this document will help bring theneeds of people with brain injuries and theirfamilies into focus, and provide a map for col-laborative efforts to improve their quality of life.

The needs assessment set out to answer thefollowing basic questions:

1. Who are the people with brain injury inIowa?

2. What is the status of their health and wellbeing?

3. What array of services should be avail-able for people with brain injuries?

4. Does Iowa have the array of servicesavailable in a comprehensive, coordinatedfamily-centered system?

5. Is the array of services accessible topeople with brain injury and their families?

6. Is the system effectively meeting theneeds of people with brain injury andfamilies?

7. What can be done to improve Iowa’sservices and supports for people withbrain injury?

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persons hospitalized with brain injuries within45 days of the quarter in which the individualis discharged, transferred or pronounceddead. But a definition of brain injury is notjust a diagnosis, it can also be a key, or abarrier, to funding streams and services.

The definition used in the federal grant appli-cation for this project is: Traumatic braininjury means an acquired injury to the brain.Such term does not include brain dysfunctioncaused by congenital or degenerative disor-ders, nor birth trauma, but may include inju-ries caused by anoxia due to near drowning.

The definition used for determining eligibilityfor the Iowa Medicaid Home and Community-Based Waiver Program for people with braininjury uses a broader definition than the onein the code: Brain injury means clinicallyevident damage to the brain resulting directlyor indirectly from trauma infection, anoxia,vascular lesions or tumor of the brain, notprimarily related to degenerative or agingprocesses, which temporarily or permanentlyimpairs a persons physical, cognitive orbehavioral functions. The waiver definition

The tragedy and challenge of brain injury canoccur to any individual, any family at anytime. This year, it will happen when an 80year-old grandmother falls at home, a six-year-old boy riding a bike without a helmethits a fence, a teenaged girl is thrown from ahorse, a baby is shaken by an angry parent,a middle-aged father is rescued from drown-ing, a promising medical student falls asleepat the wheel of his car. For every incident,lives are changed and begun again. Thissection will present the statistical picture, tothe extent it is known, of brain injury in Iowa:The who, how and where.

Defining brain injury

Nationally and in Iowa, there are both majorand minor variations between laws, agenciesand even within the same agency in howbrain injury is defined. Some of the variationsare efforts to define brain injury in a way thatmakes it possible to quantify with somedegree of accuracy. For example, restrictinga definition to external trauma makes it easierfor hospitals to participate in Iowa’s braininjury registry, which requires reports on all

1.Who are the people

with brain injuries in Iowa?

We need a greater understanding of what brain injury isand its lifetime effects so survivors and families

don�t have to explain it all the time.�Person with brain injury

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then goes on to list 43 diagnoses from the 9th

International Classification of Diseases (ICD-9) that involve injury to the brain. This defini-tion excludes spinal cord injuries from itsdefinition.

W h oSince 1990 the Iowa Department of PublicHealth has provided a yearly report on Trau-matic Brain Injuries (TBI) in Iowa. (Schootmanand Harlan 1996, 1997, 1998). These inju-ries are identified through the InternationalClassification of Diseases 9th Edition, which isused by medical facilities in billing.

The Iowa report combines data from severalsources: The Iowa Central Registry for Brainand Spinal Cord Injuries; ten large Iowahospitals; death certificates and hospitaldischarge data. Following the end of eachcalendar year, hospitals sending in datareceive a letter inquiring about additionalinjuries meeting the inclusion criteria. Lettersare also sent to hospitals not sending data.This letter asks the hospital to confirm that notraumatic brain injuries were reported. In arecent study, the completeness of TBI report-ing was assessed using four different datasources: the trauma system registry, thepaper forms that were received, the hospitaldischarge database, and death certificates. Itwas found that when including all four data-bases, only two percent of reportable TBIswere not reported. Overall, Iowans aged 85and older were most likely to be missed ofany age group.

In 1996 a total of 2205 cases of traumaticbrain injuries were identified, three more than

in 1995. This is a rate of 77 per 100,000, theequivalent of a traumatic brain injury everyfour hours in Iowa. A total of 265 Iowans diedof these injuries, 75 less than in 1995. This isin line with national statistics on brain injurydeath rates of 110 per 100,000.

The rate of TBI for males is twice the rate forfemales in Iowa, which corresponds roughlyto national figures. Nationally, death rates ofmen from TBI are 3 times that of females(Kraus, 1996). This difference is assumed tobe connected with risk-taking behavior inmen and occupational hazards that are morecommon in men.

Age is a significant factor in occurrence ofTBI. Males over 85 have by far the highestincidence of TBI, with a rate of 250 per100,000, while females in that age grouphave a rate of 150 per 100,000. The secondhighest group is males in the 15-24 agegroup, with approximately 175 per 100,000.

National statistics indicate that people whohave one brain injury are at greatly increased

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risk for sustaining additional brain injuries.After the first injury, risk for a second is threetimes greater than for the general population,and after a second brain injury, a third injuryis 8 times more likely (Fick and Petty 1997).

C a u s e sThe two leading causes of traumatic braininjury in Iowa are motor vehicle crashes andfalls. Motor vehicle crashes accounted for44.6% of TBIs in 1996, which is below thenational rate of 50%. Fifty-four percent ofIowans in automobile crashes that resulted innonfatal brain injuries were not wearing seatbelts at the time of the crash.Falls are the second leading cause of TBIs inIowa, at 25%, which is above the national

rate of 20% (Brain Injury Association, Inc./USA, 1997). Iowa’s high population of elderlypeople probably accounts for this differencewith 42% of those falls occurring in peopleover the age of 65. Children from birth to fourhave the next highest rate of brain injuriesfrom falls, 36 per 100,000. For every agegroup, females were more likely to be injuredfrom falls than males. Brain injuries caused

by falls are expected to increase as thepercentage of elderly people in Iowa contin-ues to grow. In its 1994 report, the IowaDepartment of Public Health had a specialfocus on falls among the elderly. TBIs fromfalls among the elderly were at almost the

same rate of TBIs from motor vehicle crashesin the 15-24 age group. It was also noted thata high percent of brain injuries from falls inthe elderly resulted in death. Of all fatal fall-related brain injuries in Iowa that year, 75%were in people over 65. While children mayreceive brain injuries falling from playgroundequipment, chairs or trees, the elderly aremore likely to sustain brain injuries fallingdown stairs. TBI is only part of the publichealth risk of falls. Falls cause a high level of

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disability and even death as a result of hipfractures and other injuries.

Bicycle crashes account for the next, butmuch smaller number of traumatic braininjuries, at 5%. Five to 14-year-olds account

ence in the fatality rates was in the fatalinjuries involving motor vehicles. Fatal fallsand assaults were actually higher in the moreurban areas.

Most of the contrast is between the 21 mostrural counties and the rest of the state. Thesecounties have some important defining char-acteristics. Typically there is no community

Whe r eThe incidence and cause of brain injury varyacross the state of Iowa. Iowa is among theten states with the highest percentage of ruralresidents (U.S. Census 1990). In their l995report of TBI statistics, the Iowa Departmentof Public Health (Schootman and Harlan,1997) did a special focus on rural and urbandifferences in incidence and cause of TBI.To look at these differences, they classifiedIowa’s 99 counties according to populationper square mile. Then they looked at inci-dence statistics based on this classification.The overall picture is that the rate of TBI per100,000 population is highest in the mostrural and the most urban counties, althoughthe rural counties were the highest. How-ever, the fatality rates for TBI were highest inthe most rural counties and progressivelylower with increased population. The differ-

for 58% of the bicycle injuries. Eighty-fourpercent of those injuries were people notwearing bicycle helmets.

A summary of all causes of brain injury byage follows.

ALL CAUSES of BRAIN INJURY, BY AGE

Cause 0-4 5-14 15-24 25-34 35-44 45-54 55-64 65-74 75-84 85+

Animals 2 5 5 0 0 3 0 0 4 0

Assaults 11 1 31 35 28 6 2 2 1 1Bicycles 2 64 15 8 11 4 1 2 2 0Falls 71 61 40 28 35 47 42 59 92 82

Motor Vehicle 21 64 375 173 135 86 45 35 31 9Motorcycle 1 1 23 19 19 11 8 2 0 1Other/Unk 10 27 29 32 33 23 11 12 15 13

Pedestrian 5 36 9 9 6 4 0 6 1 4Sports 1 17 32 5 2 0 1 0 0 0

Total 124 276 559 309 269 184 110 118 146 110

Figure 5

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over 5,000 anywhere in the county, andusually they are not adjacent to larger popu-lation centers. They are likely to have ahigher proportion of unpaved roads. Theseare also areas that are more distant fromhealthcare facilities, particularly ones wellsuited to manage trauma.

Minorit iesCompared to other states, Iowa’s minoritypopulation is very small. The largest minoritygroup in Iowa is African-American. The 1990National Census reported under 2% of Io-wans as African-American (black) while

reporting 15% nationally. The total of allminority populations in Iowa is only 5%.

Although based on small numbers, rates ofTBI in Hispanic, black and Native Americansare higher than in white and nonhispanicpopulations which corresponds with nationalestimates. However, 50% of the reports inthe registry have no identification of race orethnicity.

Prison PopulationThe connection between brain injury andviolent and/or criminal behavior is not a newarea of research, but has become of moreinterest in recent years. Many studies havefound correlations between violent crime andpresence of brain injuries in the offender, andsome researchers even maintain that veryhigh percentages of people on death rowhave actually sustained neurotrauma. Othersargue that research has not shown whetherbrain injury is a cause of violent behavior, orwhether people with a tendency to violenceare more likely to sustain a brain injury.

Figure 6

Figure 7

Figure 8

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Little is known about the number of prisonerswith head injury in Iowa. Rate of violentcrime in Iowa is almost half the nationalaverage, and the number of prisoners per100,000 population is only 60% of the na-tional average (Stephan and Memola, 1997).Prison officials in Iowa acknowledge only a“handful” of prisoners with diagnosed braininjury. Medical classification personnel in theIowa prison system have concerns about theeffect that a “vague relationship betweenbrain injury and socially unacceptable behav-ior” might have in criminal prosecution.

Community based corrections personnelreport that prisoners with brain injuries incommunity settings face the same kinds ofproblems in obtaining appropriate residentialand rehabilitation services, and fundingissues, that the non-criminal populationfaces. There is little available that is appropri-ate, and funding is limited.

Agency Data

Estimates from the Iowa Department ofEducation on students with brain injuries arelow, available for a limited number of years,and not considered very accurate. There arecurrently 70,000 Iowa students in specialeducation, but as the department no longercategorizes them by diagnosis, figures onstudents with brain injury are not available.In the 1994 count, when there was still identi-fication by disability type, there were 117students identified as brain injured. This isconsidered by some to be a low estimate,since many students with brain injury prob-

ably were identified under other primarydiagnoses such as behavior disordered. TheIDPH census figures for 1996 show 879individuals under the age of 22 were hospital-ized with a brain injury. It should be assumedthat many of these young people returned tothe public schools after their injuries.

As the state education consultant for braininjury suggests, the data probably best repre-sents how little we know about the true num-bers of students with brain injury in specialeducation.

Iowa’s Division of Vocational Rehabilitationidentified 370 individuals on the division’sactive case load of 11,797 (May, 1998) thathave brain injury identified as one of theirdisabilities or disabling conditions. Thisnumber does not include anyone who wouldcurrently be on the division’s waiting list, orwho was served in the past, but who currentlydoes not have an open case file.

The Iowa Department of Human Servicesestimates that of the 8478 individuals whoare funded or receiving services through thedepartment’s programs, 300 are individualswith a brain injury. Services that may beincluded in this list include state MedicaidWaiver services, individuals receiving juvenileservices, and individuals under the age of 18who are in residential settings. Individualswho are over the age of 18 are the responsi-bility of their county of legal settlement. Ac-curate figures for the numbers of individualswith brain injury that are receiving servicesthrough the county funding system in any orall of the 99 counties are not available.

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Statistics on the Total IowaPopulation with Brain Injury

Several factors contribute to the difficulty ofgetting accurate estimates of the number ofpeople with brain injury living in Iowa. Amongthem are the varying definitions of braininjury, the difficulty of counting people whoare not hospitalized for their injuries,misclassification, and the difficulty of identify-ing people who are not in “the system.”(Kraus and McArthur, 1996).

After hospitalization, many people with braininjuries leave the health and human servicesdelivery system. And many people with braininjury are never hospitalized. Since there isno central registry for less severe brain injury,estimating a total number of people in Iowawith brain injuries is challenging. Underesti-mating the resources needed would not be

helpful, but neither would alarming the publicwith high estimates that include people whomay in fact need little or no support. Anestimate is that 7 to 8 thousand Iowans peryear incur a brain injury (Schootman andHarlan, 1996). While most of these did notresult in hospitalization, the injuries oftenhave major effects on survivors and theirfamilies.

A very rough national figure suggests 1 in220 people, or 130,000 Iowans, live with theeffects of a brain injury (Kraus and McArthur,1996).

In this section, the broad population param-eters for Iowans with brain injury have beendescribed. In the next section, the reportoffers a view of how some of these Iowansare doing.

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Although brain injury is the leading cause ofdeath and disability among children andyoung adults in the United States and inIowa, it is also one of the most hidden andleast understood disabilities. After hospitaliza-tion, often with no community service struc-ture to move in to, people with brain injuryreturn to their families and homes and try topick up their lives. One family has comparedit to “walking the plank.” In recent years,there has been a growing interest in thesesurvivors, in their families and in the chal-lenges of life post-injury.

A number of sources were used to help bringinto focus a picture of how Iowans with braininjury are doing: What are the long-termeffects of the injury? Where are they living?How is their health and well being? The IowaDepartment of Public Health’s most recentreport on brain injury (Schootman andHarlan, 1998) offers information on the sever-ity of injuries of those who have been hospi-talized with traumatic brain injury. The IowaDepartment of Public Health also(Schootman, 1998) recently published areport on a survey of over 400 Iowans who

were a year to a year and a half post braininjury which has provided important insightsinto the immediate return to community life.As part of this MCH project’s needs assess-ment activities, Hoyt-Mack Research Associ-ates, of Ames, Iowa, conducted in-depthtelephone interviews with a group of 100consumers and/or family members, repre-senting people aged 7 to 73 with a medianage of 35. Fifty percent of the people in thisgroup had received their injuries ten yearsago or more, which offers a long range lookat the lives of survivors. William McMordieof Iowa Methodist Medical Center in DesMoines conducted research (McMordie et al,1989) on the employment status of some 177Iowans after a traumatic brain injury whichprovides a framework for looking at the em-ployment status of survivors in both the LifeAfter Head Injury and telephone surveys.

Where Do They Live?

In Iowa’s 1996 TBI census, 76 percent ofIowans with TBIs who were admitted asinpatients were discharged to their own

2.What is the health status and well being

of Iowans with brain injury?

I don�t know yesterday.�Iowan with brain injury

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homes (Schootman and Harlan, 1998). Eightpercent were discharged to a residentialfacility (with or without skilled nursing ser-vices), eight percent were discharged toinpatient rehabilitation, 5 percent were trans-ferred to another acute care facility, and 2.6percent died as inpatients. The remainder ofthe patients had “other” discharges.

The percentage of persons discharged homeranged from 67 percent for falls to 100 per-cent for TBIs resulting from sports. Seven-teen percent of motorcycle-related TBIsrequired admission to inpatient rehabilitation.

In the one year post-injury follow up study bySchootman (1998), 74 % of the respondentswere living with family and 15% living on theirown.

In the Hoyt-Mack survey, 30% of the respon-dents were living by themselves, but half ofthese, or 15% of the total in the telephonesurvey, also have someone else who helpstake care of things. Over 90% of the time, thisperson is a relative. The remaining 70% livewith someone else, most frequently withparents (35%) other family (46%) or in agroup home setting (15%). Just under one-half (48%) report that their living situationchanged since the injury. This mainly repre-sents the group who were old enough to beon their own at the time of the injury, and hadto move back with family or into a care set-ting.

The Effects of the Injury

The effects of brain injury were assessed inboth the one year follow-up and the tele-phone surveys. In the IDPH study, 70% of the

surveys were filled out by the survivor, andthe rest by a family member. In the telephonesurvey for adults, 27% of the interviews weredone with survivors, 69% were done by afamily member and 4% by a family memberand the survivor together. The task force fromthe Iowa Advisory Council on Head Injuriessuggested that people with brain injury tendto see less disability in themselves, and to bemore positive about their functioning thanfamily members might be. Having bothperspectives should be helpful.

In the Schootman study, 70% of the respon-dents reported developing one or more condi-tions since the injury. Having less energy orgetting tired more quickly, memory loss anddifficulty concentrating were reported mostfrequently. Ninety-eight percent of those withsevere brain injuries reported a problem,while 69% of those with mild brain injuriesdid. For those with severe brain injuries,difficulty concentrating was the most fre-quently reported problem. For people withmoderate and mild injuries, having lessenergy was the most often reported problem.

Figure 9

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The telephone interviews used broad areasof concern as prompts in the interviews, butall participants were asked for additionalcomments as well. The areas covered physi-cal difficulties, memory difficulties, difficultiesorganizing activities, difficulties making deci-sions, emotional difficulties and learningdifficulties.

Physical Difficulties

Most of the telephone survey respondents(81%) reported one or more physical difficul-ties. Eighty-three percent of the family mem-bers mentioned physical difficulties, and 73%of the people with brain injury, a differencenot large enough to be considered statisti-cally significant. Most common among thesephysical difficulties were trouble walking,including balance difficulties or walking withan uneven gait, poor coordination, and diffi-culties with speech. A few respondentsmentioned trouble swallowing, incontinence,pain, vision limitations, weakness, and limitedor no hearing. A small proportion of therespondents reported more severe physicallimitations requiring full-time caregivers.Those whose injuries had occurred since1990 were a little more likely to report physi-cal disabilities than the group injured before1990, but it was not a statistically significantdifference.

Memory Difficulties

Nine of every ten respondents in the tele-phone survey (92%) report having memorydifficulties. Most common, by far, are shortterm memory problems, reported by 79% ofthose reporting memory problems. Someexamples of specifics:

● I don’t know yesterday● He has trouble remembering appoint-

ments, medications, things like that● She has trouble with names, gets con-

fused about what to call things● I can’t recall telephone conversations after

I hang up● Does laundry, can’t recall if put soap in● I had a meeting on a calendar one night,

another the next night, and I went to thewrong one

Many report needing to use memory aids tohelp with this short term memory problem.● Has to write stuff down to help remember● Has to use a list to remember● If don’t write it down, he will not remember

it

Respondents also report that memory prob-lems may be worse at some times thanothers.● Thinking slows down when he gets tired,

works very hard at memory● Memory problems, especially when tired

Organizing Daily Activities

Nearly two-thirds of the telephone surveyrespondents (64%) report that they haveproblems organizing daily activities. Fifty-onepercent of those reporting this problem say itis related to the short term memory limitationsmentioned above:● Has to use datebook to schedule and

journal to remember what she did● Tell him to do chores and he forgets.● Sequencing events is difficult, can not

have two appointments in one day● Uses an appointment book. If something

is not in it, he doesn’t do it

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Twenty-two percent of those reporting thisproblem speak to a general need for assis-tance or dependence on others for organizingand scheduling activities. This also includeschildren who are too young to be expected toorganize their own activities yet. Commentsincluded:● He does not organize daily activities.● Has to be directed by others● Has to get up early to be ready to do

things, needs direction● Group home managers must check on

him to see if he has planned his meals● Has to have day scheduled and written

down for him● Each day has to be scheduled on paper

Other examples include getting sidetrackedeasily and problems with motivation.● Trouble taking the initiative● Trouble keeping appointments● Low motivation, trouble setting goals● Tries to write down things in list, but if not

in right order she has trouble● Needs a plan to get out of bed each day● When he is having a bad day, it is difficult

to schedule

Making decisions

Three-fourths of the telephone survey re-spondents (75 %) report difficulties withmaking decisions. Survivors were signifi-cantly less likely to report difficulties withdecisions than family members. Sixty percentof the survivors mention this problem, but79% of the family members do. When askedfor specifics, about one third of the respon-dents (32%) mention problems reachingclosure.● Difficulty with decisions as simple as

when he is through with lunch

● Can’t decide what to order in a restaurant● Trouble buying clothes● Everyday decisions, such as picking a

movie or buying clothes● Takes him a long time● Would get dressed, then change a few

times● Indecisive or takes a long time to decide● Slower on more complicated decisions

About one in five (21%) of those mentioningdecision making problems refer to occa-sional problems with decisions that are notwell-advised or realistic.● Forgets limitations, not making decisions

based in reality● Poor decisions, takes SS money and uses

it for gambling● Sometimes makes irrational decisions● Trouble making social decisions and is

often inappropriate to them● One time makes rash decisions, another

time can not make a decision

Other examples include difficulties associatedwith disagreement on decisions, indecisive-ness or lack of confidence in decisions,trouble evaluating the situation to make adecision, and maintaining focus.● Does not always accept spouse’s ratio-

nale● Hard to deal with rejection of what he has

decided on● Lacks confidence in decisions that she

makes● Calls home frequently to get advice on

what to do and how to do things● No initiation● When tired, gets easily frustrated with

having to make decisions● Has trouble keeping focused on longer

questions.

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● Does not always attend to things longenough to make a decision

Emotional difficulties

Just over three-fourths of the telephonesurvey respondents (76%) report some typeof emotional difficulties resulting from thebrain injury. About one fourth (26%) reportsome instances of heightened or accentuatedemotional responses to situations:● More sentimental, cries easily● Is more sensitive to comments from

others● Sometimes more sensitive about things● More sensitive to things● Cries easily

In 20%, this heightened response takes theform of anger or frustration.● Anger outbursts, yells● Reacts with anger more rapidly● Shorter fuse and explosive anger● Anger outbursts when he gets frustrated● Is more irritable, but has learned to control

it

On the other hand, some 12% of the respon-dents indicate a lower affective response,less emotional reaction.● Little more emotional, especially when

tired● Flat affect, does not express emotions● Shows no emotion, no animation

Ten percent report mental health concerns,particularly with respect to depression● Has some problems with depression● Has threatened suicide● Some self-esteem and self-confidence

issues

● Many mood swings● Depressed, on Prozac now and that has

helped● Very moody and easily depressed

Learning difficulties

More than eight in ten of the telephone sur-vey respondents (84%) report having learningdifficulties as a result of the brain injury.Although not statistically significant, in con-trast to some of the other reports on prob-lems, more people with brain injury (93%)named this as a problem than family mem-bers (81%). Forty-three percent of the learn-ing difficulties named were memory related.● Can not remember what he reads● Should know, by now, the safe way to get

out of a chair, but forgets● Could not handle to go to school now,

can’t remember what she needs to● Forgot much of what he had previously

learned

No24%

Yes76%

Fig. 10 Experience Emotional Difficulties

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Nearly a third (32%) report that the personwith brain injury can learn, but that it takeslonger to acquire information and may requirealternative forms of learning.● Has to repeat tasks to retain them● Takes longer to learn● Needs to review things to get the same

amount of recall as others● Can learn, but just takes longer.● Has to study something 3 to 4 times to

learn it● Gets more information from video than

from reading● Needs tasks broken down in order to do

them● Learns better visually

Twelve percent note that focus and attentionissues effect learning.● Attention problems, mind tends to wander● Attention problems, easily distracted by

noise● Can only focus a short time

Wor k

The high number of survivors reporting prob-lems with memory, concentration and emo-tional problems also supports researchshowing that returning to work post-injury is aproblem. In 1989, William McMordie of IowaMethodist Medical Center in Des Moinesstudied the work situations of 177 Iowanswho had sustained head injuries (McMordieet al, 1989). This survey was mailed tomembers of the Iowa Head Injury Associationand respondents included 138 males and 39females over the age of 19. The authorsnoted that a sample coming from a supportgroup might be biased somewhat towardpeople with more serious problems.

Over half of the study group reported being inno work at all. The other half included peoplein volunteer, part time, work training andsheltered work, with only 17 of the groupbeing involved with regular full time employ-ment. The study also looked at problemspeople were having related to the brain injury.Reports of learning problems, motor prob-lems and ambulation difficulties were signifi-cantly higher in those who were not workingas compared to those who were able to becompetitively employed. It was also notedthat people over the age of 40 had the hard-est time returning to work, while teens andpeople in their twenties or thirties were aboutthe same.

McMordie’s study was in part an answer toresearch in England that showed mostpeople with head injuries were able to work.While McMordie’s Iowa study shows oppositeresults, the author points out that the Britishwork was done in the late 1960s. “Themost important factor is that persons whowould have died from their head injuries20 years ago are surviving today becauseof improved medical technology. Recentstudies on return to work after head injurydoes not suggest that most people will beable to return to work after sustaining asevere head injury,” McMordie explains.The McMordie work itself is now ten yearsold, and the situation may be of even moreconcern today.

The Life After Brain Injury survey (Schootman1998) supports McMordie’s conclusions.Although 46% of the respondents reportedbeing employed, only about half of thosewere actually in either full or part time workperformed independently. The rest were insheltered work or training or supported worksettings.

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In the telephone survey group, a little overone third of the survivors (34%) currentlywork. The types of employment mentionedranged from professional/white collar typeoccupations (e.g., financial planner, rehabili-tation counselor) to more service and laborertypes of work (e.g., cleaning worker, storeclerk, cafeteria aide), skilled and semi-skilledwork (e.g., mechanic), and part-time workers.Some respondents also reported being in-volved in voluntary work. While many of therespondents mentioned some degree oflimitations, some were still involved in workthat requires more physical activity (e.g.,farmer). Among those who work, 38 percentare part-time workers (mostly in servicepositions), 24 percent are service and laborerpositions, 24 percent are in skilled and semi-skilled work, and 14 percent are in profes-sional and white collar positions.

For the people with brain injury who were notworking, the two primary reasons (represent-ing over half of those not working) werephysical (e.g., speech limitations, physicallyunable to perform work) or mental (e.g.,memory problems) limitations directly relatedto the Traumatic Brain Injury. A few respon-dents indicated that they had initially tried toreturn to work but had to quit or were fireddue to problems with aspects of the job. Intotal, about 9 percent of the persons notworking were looking for, but unable to find,employment.

Almost one-fourth (23%) of the persons notworking were either too young to work orwere still in school.

Changes in lifestyle

Not surprisingly, the telephone interviewsshowed nearly all (93%) of the people withbrain injuries had to make many changes intheir lifestyle because of the injury. Manyexamples highlighted changes in physical ormental abilities:● Takes a nap after dinner to keep from

getting too tired● Lack of independence, has to have a

care-giver with him all of the time● Was very athletic, now cannot be● In a wheelchair, can’t drive● Can not drink, alcohol counteracts medi-

cations● Can not drive● No longer drives

About one in five comments centered on imp-lications for social and personal relationships:● Not able to maintain long-term romantic

relationship● Used to be social, now very isolated● Wife filed for divorce● No social life● Don’t go out much with other people● Does not leave the house much● Divorced after injury● Spouse had to help a lot, hard to be

independent● Lost all of his friends● Hard time with conversations● Husband left her● Does not like being around people any-

more● Has to be forced to go out and do things● Used to date a lot, now does not even

think about relationship● Socialization is very difficult

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● Has not dated anyone since the accident● Worries if she could ever be in a long term

relationship● No one to socialize with

Not being independent in daily routines alsowas mentioned:● Grandmother came and took care of her

and the children● Can’t work and lives in public housing● Was previously independent, now lives

with parents● Used to live in nice house, now in an

apartment● Could not finish school, lives with parents

Changes in Activities

Eight out of ten of the telephone surveyrespondents (79%) mentioned activities theycould no longer do. Most comments focusedon sports and other physical activities requir-ing high levels of energy and coordination.● Used to be athletic, but can not run

anymore● Can not participate in sports● Can not dance● No athletics● Can’t hunt because he can not walk

too well● Can not swim● Sports, baseball, softball● Can’t really run● No sports, uses a cane to help with

balance

A number of respondents noted the inabilityto drive. Others mentioned the need to avoidcrowds, groups, or situations where therewas a lot of noise.

● Does not like being in crowds● Group situations are very difficult● Can’t handle loud crowds● Does not like loud noises● No crowds or any situation that involves

stress

There were also a number of more specificchanges in activities ranging from minor tomajor restriction.● Can no longer do woodworking● Balance is bad, can’t do activities like

mowing or cleaning out the tub● Can’t do volunteer service organizations

because of fatigue● Has trouble playing with kids because of

hand-eye coordination● Can not go to long events, problem with

attention span● No strenuous activities, tires easily● Just about everything● Cannot turn pages to read● Can not do anything that raises body

temperature

Family Life

Brain injuries don’t happen just to an indi-vidual, they happen to a family. Families arethe major service provider for people withbrain injuries when the hospitalization is over.The health and well being of the family is alsoaffected by the injury and is a critical part ofany needs assessment.

Most (87%) of the telephone survey respon-dents report that their family changed insome way as a result of the brain injury. Asnoted in the changes in lifestyle responses,these changes sometimes included the loss

17

of a marital partner and in other instancesmarital stress.● Divorced right after TBI. Can’t visit

children● Went through two marital therapists and

was separated for six months● Some initial conflict, lots of ‘close calls’

Other family members also showed signs ofstress.● Early negative reactions from siblings,

took too much of parent’s time● Having an adult child at home has caused

strain on parent’s relationship● His inactivity and loss of interest has

required some adjustment by other familymembers

● Younger sister irritates him due to her lackof understanding

● Children are always throwing memoryproblems in her face

● It has shook everyone up, she now has adifferent family role

● Was the oldest, has been a tough adjust-ment for younger siblings

● Father has not educated himself aboutTBI, can not handle it

However, in addition to comments aboutproblems and stresses, many also refer to afamily coming together, making the neededadjustments, and sometimes getting closerthrough this experience.● They have had to adapt, but have been

very understanding● Family had to move to help with his needs● Moved when could to be closer to family

for help● Mother took early retirement to work with

him● Everyone came together to help

● Sister got involved in TBI associations● Family has adjusted to TBI, no education

for families, had to learn slowly● Mom became involved as a special edu-

cation consultant, relationships are good● Family has adjusted and is very support-

ive● Both good and bad, was hard on kids, but

now family closer together● Wife had to go back to school and get a

job to support family● Have been supportive and traveled a lot

to visit while in hospital● Family has to be there for him around the

clock● Family is a lot closer now● They have changed their way of thinking

about TBIs● Family became very involved in brain

injury association

S u m m a r y

It is clear that the vast majority of people withbrain injuries have some long term problemsas a result of their injury. Memory loss, prob-lems with concentration, headaches,ambulation and other motor problems. Work,school, family and other relationships — thethings we look at to assess our quality oflife— are strongly effected by these ongoingproblems. The survivor and family struggle tobuild and maintain a good post-injury life.

What can help with rehabilitation and longterm adjustment for these survivors and theirfamilies? Section 3 looks at the array ofservices and supports that should be avail-able in a quality state system for people withbrain injuries.

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People living with the effects of a brain injuryhave been identified as an emerging andpoorly understood population, relative topeople with other kinds of disabilities. Ourunderstanding of the array of servicesneeded to help with their rehabilitation andlong-term support is also emerging. Theimmediate medical treatment for the personexperiencing a traumatic brain injury is fairlywell established. But what follows is muchless well understood. The degree of recoveryeventually achieved and the process ofrecovery varies from individual to individual;although physical impairment is common, themore severe disabling effects of brain injuryare in cognition and behavior. For many,these effects call for life long change, adjust-ment, and support. In addition, becausesome of the recovery is gradual and sponta-neous, we have less scientific understandingof what kind of rehabilitation is effective.

As brain injury survival has increased due tomedical technology and delivery, concernabout the disorganized development of reha-

bilitation services has also grown. Over tenyears ago, the federal government funded anumber of demonstration programs to de-velop models for a quality continuum ofservices that should be available for personswith traumatic brain injury (Ragnarsson, et al.1993)

The services identified for that model in-cluded:

● Emergency medical services with sophis-ticated field evaluation and transportation

● Acute comprehensive rehabilitation ser-vices with a complete interdisciplinaryteam, including vocational and educa-tional representation

● Long term interdisciplinary rehabilitationfollow-up services and assessment includ-ing medical, social, psychological andvocational.

Other important elements in the model con-tinuum included behavior modification pro-

3.What array of services should be

available for Iowans with brain injury?

Basically, I lost almost everything for about five weeks,and I went home to try to start over with everything.

�Iowan with a brain injury

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grams, rehabilitation services at home, casemanagement and community living options.

There are many different approaches toidentifying the range of services to meet theneeds of people with brain injury. The modelprogram listed above named broad areas ofservice. Other approaches make finer dis-tinctions in services. In a recent rehabilitationsurvey in Iowa, (UI Injury Prevention Re-search Center et al, 1997 ) service providerschose from a much more detailed list ofservices and supports, 90 in all. The rangeincluded specific types of services such aspeer counseling and several different kinds ofemployment service options.

The Service Task Force Report for the IowaAdvisory Council on Head Injuries (ACHI1996) describes the service needs as follows:

Persons with disabilities, includingpersons with brain injury, need aflexible set of services and supports sothat they may return to living indepen-dently and productively. People withbrain injury often have cognitive limita-tions as a result of the injury. Theselimitations may include problems withmemory, attention, planning and judg-ment. These limitations make it difficultfor many Iowans with brain injury to beeffective self-advocates for the ser-vices they need. As a result, it is ex-tremely difficult for these individuals toaccess needed services which areoften administered through a maze ofstate departments and local agencies.

The task force guiding the needs assessmentfor this project was asked to identify therange of services that would be used insurveying providers and survivors in Iowa.The task force first identified ARRAY as abetter term than CONTINUUM in describingthe range of needed services and supports.Array was chosen to get away from the ideathat people needed to go through a series ofservice steps as they progressed. The termarray was meant to emphasize the need forchoices, given the widely differing needs ofpeople with brain injury. One person mightindeed need to move through a series ofprogressively more independent employmentservices, for example. But another mightneed only short-term help with job seekingand interview preparation.

For the provider surveys done for this needsassessment, the Task Force settled on largercategories of services which were based onbroad areas of need. They felt with the finerdistinctions, there would be less agreementon what the services really involved, espe-cially since the service system specific topeople with brain injury is relatively undevel-oped in Iowa. Their list included the follow-ing:

● Medical services: This includes the initialemergency system and hospitalization aswell as out patient services, and commu-nity service referral

● Therapy: OT/PT, Speech, behaviortherapy, cognitive therapy

● Educational services

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● Community living: Independent livingtraining, housing, respite, adult day care,supported living, transportation

● Employment services

● Family or individual counseling

● Case management

A focus group conducted for this needsassessment, as well as a recent survey bythe Brain Injury Association of Iowa suggeststwo other components for the array:

● Information and referral: People withbrain injury and their families need tohave a service to help them find neededinformation and resources. This is a

critical service that needs to be part of thearray. It is especially important to have atthe time of hospital discharge.

● Training/technical assistance: There islittle point in developing an array of ser-vices, if the people working to providethose supports are not familiar with thespecial needs of people with brain injury.As the main service providers for peoplewith brain injury, the family too needs tobe able to receive training and to take partin training other service providers.

The next section will explore whether all thecomponents of this array are available inIowa.

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An appropriate array of services for Iowanswith brain injury would include medical ser-vices, therapies, individual and family coun-seling, community living assistance (includingtransportation), education services, and avariety of supports for employment. To enablepeople to use these services and supports,you would also need advocacy and informa-tion and referral services. Further, to insurethat the services met the special needs ofpeople with brain injuries, training is neededfor providers, including family members whoare currently, and probably always will be,major providers of services and supports.

Is this array available in Iowa?

Many survivors, family members and provid-ers have answered this question with a firm“No!” The consumer and provider telephone

surveys were used to amplify this response,as was a special focus group on servicefunding attended by providers, state agencyrepresentatives, consumers and family mem-bers. In addition, we made use of IowaCompass, a statewide information and refer-ral service that annually surveys disabilityprograms on the populations they serve andthe specific services they provide. The pro-vider survey done by the University of IowaInjury Prevention Research Center, IowaDepartment of Public Health and theGovernor’s Advisory Council on Head Injuries(referred to as TBIRDS) is used, as well as asurvey of state agencies done as part of thisproject (DeBoer 1998).

The information available suggests thatproviders of the “array” of services do exist insome form in Iowa currently. The provider

4.Does Iowa have the needed array

of services available in a coordinatedcomprehensive, family-centered system?

Families are the number one provider of services in Iowafor people with brain injury.

�Brain Injury Association of Iowa President

We have literally no services available. There is no information source so thatpeople can even know what to ask for. The people that certified as brain injury

providers have one day of training. I mean, let�s get real here.�Rural County Service Coordinator

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surveys (Iowa Compass, Hoyt-Mack andTBIRDS) all ask this question: “Do youprovide service X to people with brain injury?”If the provider answers “Yes we do” then theyare counted. Currently there is no other wayto assess whether a brain injury serviceexists.

Interviews and anecdotal information suggestthat in fact very few of the services identifiedare geared specifically to people with braininjury. In Section Five we will also be lookingat the accessibility issue, which suggests thatfunding, eligibility and geography play amajor role in making services truly acces-sible.

The State System

The Code of Iowa (225C.23) has recognizedbrain injury as a distinct disability in the lawas follows: The Department of Human Ser-vices, the Iowa Department of Public Health,The Department of Education and its Divi-sions of Special Education and VocationalRehabilitation Services, the Department ofHuman Rights and its division for personswith disabilities, the Department for the Blind,and all other state agencies which servepersons with brain injuries shall recognizebrain injury as a distinct disability and shallidentify those persons with brain injuryamong the persons served by the stateagency.

There is a beginning structure for statewidecoordination of services for people with braininjury in Iowa. The Iowa Department ofPublic Health has been designated the leadagency for brain injury. Iowa has a braininjury registry where hospitals are required toreport all hospitalizations related to brain

injuries. This is part of the state trauma regis-try and TBIs are identified through Interna-tional Classification of Diseases-9th Edition(ICD9) codes.

The Iowa Advisory Council on Head Injurywas formed in 1989. It is located in the IowaDepartment of Public Health and has 18voting members as well as ex-officio repre-sentatives from other departments in stategovernment. The members are appointed bythe Governor and include survivors, familymembers, advocacy organizations and pro-viders. The Council has two standing taskforces, one focused on services and the otherfocused on prevention, awareness and legis-lation.

There is currently a Medicaid Home andCommunity Based Waiver in Iowa for indi-viduals with TBI. In 1998 it will serve 60individuals who have been in institutionalsettings and will be expanded to 72 in 1999.

Are the services there?

In the telephone survey of consumers, 50%sustained their injury over ten years ago.Consumers were asked to name servicesthey received, rather than choose from a listof services. Most of the respondents (87%)named at least one service that they werecurrently receiving. About one-fourth (24%)named just one provider, 14 percent namedtwo, 18 percent named three, 9 percentnamed four, 9 percent named five, and 12percent named six. Respondents named anaverage of 2.6 service providers.

Twelve percent of the respondents onlynamed a support group or groups as serviceproviders. Combined with the 13 percent

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The IOWA COMPASS computerized listreports 120 programs that serve people withbrain injury, from a data base of disabilityrelated entries. This list did not include the 16AEA head injury teams and 99 Department ofHuman Services offices in the state. Onlyseven of these programs report being specifi-cally for people with brain injury, as opposedto including people with brain injury alongwith other people with disabilities.

T h e r a p y

In the telephone survey, 73% of the respon-dents received some kind of therapy, withphysical therapy and speech therapy beingthe most common. In the Life After HeadInjury survey of recently injured survivors,35% reported receiving physical therapy,18% reported receiving occupational therapyand 15% reported receiving speech therapy.

The provider survey done by IDPH showsspeech therapy being offered by over half theprograms listing people with brain injury asclients, the most often mentioned service ofany in the list of 90 some categories. Forty-seven programs mentioned physical therapyand 41 mention occupational therapy.

IOWA COMPASS lists 29 agencies offeringspecialized therapies for people with braininjuries.

Edu c a t i o n

A free appropriate education is offered to allIowa students until age 22, including thosewith brain injuries. Iowa has adopted non-categorical special education, so children are

who did not name any services, a total ofone-fourth of the TBI survivors do not reportgetting assistance from a formal serviceprovider.

Not surprisingly, given that the study usedsupport groups to recruit a portion of thesample, the most frequently mentioned typeof service was a support group (29% of allservices mentioned). While this may not beofficially recognized as a service by some, itis what survivors and their families thought ofmost as a service.

The next most frequently mentioned servicewas disability/SSI payments, 16% mentioningthis. Some providers would not see this as aservice, but it is what came to mind for manyconsumer and family respondents. Otherservices mentioned ranged from very generalassistance to specific local facilities. Nosingle type of service represented more thanfive percent of the named services. Therewere examples of each of the service “array”categories in their responses. In the Life AfterHead Injury survey (Schootman 1998), whichsurveyed consumers a year to a year and ahalf away from injuries, respondents chosefrom a list of services. Given how recent theirinjuries were, it is predictable that variousrehabilitation therapies were the most com-monly used services.

Two surveys were used in assessing theexistence of the service “array” elements inIowa: The IOWA COMPASS survey and theTBIRDS. The TBIRDS survey sent question-naires to 299 providers. There were 156surveys returned, 90 of which said they hadbrain injury programs. On the TBIRDS sur-vey, some 90 possible services to people withbrain injury were included as choices.

24

no longer given a label in order to receiveservices. The 15 Area Education Agencieswhich provide the special education servicesto local school districts each have a braininjury team that consults with the schools onstudents with brain injuries.

While Iowa’s universities and communitycolleges do not appear on any of the surveylists, many now have special offices forstudents with disabilities and special pro-grams to assist students with learning dis-abilities. Some of these programs are cer-tainly serving people with brain injuries.

Emp l o ym e n t

A third of the respondents in the TBIRDSprovider survey report providing job coachingand job training. Twenty-eight percent reportproviding supported employment services,and 16% reported providing sheltered work.

The Life After Head Injury consumer surveyshows 7% received vocational assessmentsin the year following their injury, and 3 %received job training.

Community Living

In the TBIRDS provider survey, half reportedproviding independent living skills training,11% reported providing chore services in thecommunity, and 10% reported providingpersonal assistance in the community. Tenpercent reported providing supported com-munity living and 5% reported providingtransitional living services. Transportation isan important service for people living in thecommunity, especially in rural areas. Seven-

teen percent of the TBIRDS providers re-ported providing driver evaluation and drivertraining programs, and another 25% reportedproviding transportation services.

Counsel ing

Eighteen percent of the programs surveyedfor the TBIRDS survey reported providingoutpatient family counseling related to braininjury, and 20% reported providing out patientindividual counseling. The IOWA COMPASSdatabase lists 18 agencies providing counsel-ing to people with brain injury. The MentalHealth Centers of Iowa are a resource avail-able to all Iowa communities, but they areextremely overburdened. In addition, as oneprovider explained “We’re looking at theexperience and the ability of the therapist todeal specifically with brain injury. If I had5000 therapists in my county, I’d be surprisedif I had two who had any experience withpeople with brain injury.”

In the Life After Head Injury survey, 14.2% ofthe respondents reported receiving psycho-logical counseling and 5% reported receivingfamily counseling.

Case Management

To quote one Iowa provider, “Case manage-ment is a term that gets used and abused.Everybody has case managers. Pizza Huthas case managers!” Case management is abroad term that today often includes the roleof carrying out cost management efforts. Butthe focus group on service funding defined itin family terms: It’s not case management likehappens at an HMO, but its having some-

25

body to help you weave your way through thesystem, and that usually today falls on familyand friends.

The only case management required in thestate for people with brain injury is part of theMedicaid HCBS Brain Injury Waiver which isnow only for 60 consumers. Doing casemanagement with people with brain injury is adifferent experience, according to one personinvolved with the waiver program.

“I had two case managers tell me thattheir clients with brain injury were reallyforcing them to individualize much morethan their consumers with mental retarda-tion were. I think part of it was becausethese folks are adults who rememberwhat they used to be like and have highexpectations. They’re not going to sayOK, just fit me into a program someplaceand I’ll go on there for infinity.”

In the TBIRDS provider survey, almost half ofthe 90 respondents said that they suppliedcase management services. IOWA COM-PASS lists 9 agencies that say they providecase management services to people withbrain injury.

Case management is available for individualswho are eligible for services under otherdiagnoses such as developmental disabilitiesor mental retardation if they qualify. Voca-tional Rehabilitation has case managementavailable to any individual who receives VRservices, regardless of the disability.

Training

There is a growing awareness that training isthe cornerstone of improving services for

people with brain injury in Iowa. “It can’t beone day training,” says a county humanservices coordinator. “And it’s constant staffdevelopment because the brain injury frommild to severe, its so specific to the individualthat it can’t be categorized. It’s totally differ-ent rehabilitation from what most providersknow.”

The Brain Injury Association of Iowa sponsorstwo conferences per year for individuals,family members or professionals, and thereare typically two additional conferences ayear that are specifically targeted for familiesand individuals with brain injury that aresponsored by the association or its chapters.

The Medicaid brain injury waiver program isthe only service in Iowa where there is man-dated training to become a provider forpeople with brain injury. Vocational Rehabili-tation and the Department of Education havebrain injury training offered, but it is not man-dated. The Iowa University Affiliated Programhas presented three well attended sessions(over 100 average attendees) on brain injuryover the Iowa Communications Network andis planning a series for the upcoming year.

Information and Referral

Information and referral is an essential part ofthe service delivery system. The words of aparent at the funding focus group describethe need for information and referral services:

I am a parent of a nineteen-year-old whohad a severe trauma to the head last yearfollowing a car accident. We didn’t knowwhere to turn or who to talk to. I see all ofyou government officials here today and Iam absolutely amazed that there are so

26

many people out there who are supposedto be taking care of problems. So far wehave found that the system always worksagainst us.

The telephone survey of survivors showsinformation about services came from avariety of sources. The three most frequentlynamed were case managers or social work-ers (18%), support groups (17%), and doctoror specialist (14%). Other sources includedfamily members, mass media, self, and wordof mouth.

In the TBIRDS provider survey, 33% of theprograms report providing information, and45% report providing referral services.

A d v o c a c y

At the state level, Iowa has a statewideAdvisory Council on Head Injury funded bythe legislature and designated in the Code ofIowa. The Brain Injury Association of Iowawas founded in 1980 as the second charterchapter of the National Brain Injury Associa-tion. They were active in creating the Advi-sory Council and the Brain Injury Registry,and in gaining the recognition of brain injuryas a separate disability in the Code of Iowa.They were also active in developing theMedicaid HCBS brain injury waiver. Iowa alsohas a number of cross disability groups thatinclude people with brain injury in their advo-cacy efforts.

Are the services providedin a coordinated and family-centered manner?

In the every day lives of people with braininjury and their families, coordinated andfamily centered services are available spo-radically, not as a system wide effort. This willbecome clearer in Section 5 on accessibility,where funding and eligibility issues and theunique delivery problems in this still very ruralstate will be explored.

Exploring the issue of coordination, the Hoyt-Mack telephone survey found that just underone-half of the respondents (48%) said thattheir service providers communicate effec-tively with each other. About one-fourth(24%) disagreed. The remainder had noopinion or does not get services from multipleproviders. Some examples of commentswere:

● Didn’t work together at all● Don’t communicate with county- county

doesn’t give out resources● Further away from immediate crisis the

communication broke down● JPTA and Voc Rehab wanted to do the

same testing● Therapist and PT each do own part, but

really don’t communicate with each other● They don’t talk to each other, are indepen-

dent

When asked who is responsible for keepingall the different providers informed aboutwhat is going on, over one half (56%) of thesurvivors said it was themselves or a familymember. About 20 percent named a casemanager or social worker.

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Are the existing servicesreally for people with braininjury?

Like any part of the human service industry,services for people with brain injury willdevelop around funding. This is a seriousissue in describing brain injury services inIowa. Except for the recent Medicaid HCBSbrain injury waiver, there are no designatedfunding streams for brain injury. The focusgroup on funding issues for this project dis-cussed the problem of having people withbrain injury served in a system set up forpeople with mental retardation and develop-mental disabilities.

As one provider said:I think it’s completely ignorant to have allour brain injury programming in the stateof Iowa revolve around programming forpeople with mental retardation becausethat has been a mandated population byIowa code that’s been placed on thecounties to fund. We have tried to grayevery other definition and put them intoexisting mental retardation programming.Our chronically mentally ill get program-

ming for people with mental retardationtoo. It is totally inadequate.

Another provider noted:What you have is every mom and popnursing home saying ‘I’ll provide braininjury services’. We do a lot of work withSouth Dakota and it’s fortunate for themnow that they have somebody theresaying ‘No way, it ain’t gonna’ happen. It’snot going to be mental retardation, it’s notnursing homes, it’s not mental illness. It’sgoing to be for brain injury.’

While it is possible to identify resources inIowa that fall under the service categoriesconsidered important for people with braininjury, it is also clear that the resources areoften not there or are hidden and that afteracute care, few programs are responding tothe specific needs of people with brain injury.This is born out by the Hoyt-Mack providersurvey, which shows TBI clients but few TBItargeted services.

In Section 5, we will explore the funding,program eligibility and geographic factors inIowa that make accessibility of services aproblem for many people with brain injury.

28

5.Is the array of services accessibleto survivors and their families?

You�ve put your finger right on the problem. This is what we experienced.You run from one place to another one and no one is

responsible. It�s always the other place.Family Member

Everybody needs to get what they need becausethey need it, not because they have a certain label.

Education Consultant for Brain Injury

Section 4 explored whether the componentsof the service array for people with braininjury exist in Iowa. This section asks: Aresurvivors and their families eligible for thoseservices? Can they pay for them? Can theyget to them?

Funding, geography, and a historical lack ofservices to Iowans with brain injury all makeaccessibility a major problem for survivorsand families. It is difficult to sort out theinfluence of eligibility, funding and geography.But both providers and consumers report thatall of these factors seem to work togetheragainst easy access for survivors and theirfamilies.

In the telephone survey of consumers, thereasons given for not accessing neededservices varied. Forty-two percent of the

consumers said the services were not avail-able locally, and 35% said they didn’t havethe funds to pay for services. Sample com-ments from the survey show how the issuesof eligibility, funding and geography blendtogether:● Not available in area● Maintaining improvements in range of

motion not covered by insurance● Not available in the area● Didn’t know what was available, school

refused assistance● Hard to find lots of activities for him to do● They live outside of county line for bus

transportation● No real help in town she’s in, and can’t

drive● Don’t provide to people over 21● Doesn’t know what available● No money

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● Cost and logistics of getting him to theseplaces

● Transportation

A long time provider in a state agency sum-marized the situation at the focus group onfunding:

I’ve worked with programs serving per-sons with disabilities and funding ser-vices for persons with disabilities forprobably more than twenty years now.I’ve seen some developments and im-provements in funding for some popula-tions of persons. I would have to sayfrankly I haven’t seen much improvementin the funding of services for persons withbrain injury over that period of time. Ithink that the state and the county arebasically passing the ball back and forthand neither is willing to say “Yep, it’s myball.” I think people with brain injury areone of those populations that have beenkind of ignored.

Iowa�s Unique County System

Iowa is different from most states in the way itpays for services used by people with dis-abilities. Most of these services for adults(such as group homes and supported em-ployment) are paid for with a combination offederal and county funds, not state funds asin other states. Iowa is first among all statesin county contributions to services for adultswith mental illness, mental retardation anddevelopmental disabilities.

Iowa law requires counties to pay for servicesfor people with mental retardation and forinstitutional services for people with mentalillness. In fact, traditionally counties havepaid for many more services. However, whenbudgets are limited, the first services to becut out are those that counties pay for volun-tarily, and this includes services for peoplewith brain injury.

State contributionsto community programs in Iowa: 1992

State24%

County76%

Figure 11

U.S. average state contributionsto community programs: 1992

Local38%

State62%

Figure 12

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In the last ten years, county mental healthservices (which includes mental retardationand developmental disabilities) has assumeda larger and larger proportion of the countybudgets, until it is now the second largestbudget category. At the same time, a stateproperty tax freeze has limited growth inthese county budgets.

Under recent legislation, each of Iowa’s 99counties is now required to submit an annualplan for who will be served and what serviceswill be available to them. In the current plans,24 counties specifically exclude people withtraumatic brain injury from eligibility for ser-vices. Ten county plans “grandfather” inexisting recipients with brain injury, but willnot serve new consumers with brain injury.Nine counties include people with brain injuryin their eligibility in some form, six through thenew BI waiver. People who had their injurybefore age 22 may meet the developmentaldisabilities criteria for services in those coun-ties where that population is included in theeligibility criteria.

The exclusion of people with brain injury fromthe eligibility for county funded services ispart of the ongoing battle over state andcounty contributions to services. Many of thecounty plans specifically refer to the need forbrain injury funding with phrases such as thefollowing: The county recognizes the needsof persons with brain injury. However, untilthe State of Iowa provides 100% funding tomeet these needs, the county is unable tofund services for this population.

The unbalanced pressure on county budgetsto improve the scope and quality of servicesprovided is well recognized. A county human

services coordinator provides a description:Expectations of county funding are ludi-crous. We don’t have the money to meetthe needs of the mandated categories wehave now. One of my counties has thesmallest mental health budget in theworld, it’s $350,000. There’s a young manwe’ve become liable for who is severelydisabled and his care is going to cost$35,000 a year. That’s 10% of our budget!

The variations in the county plans creates acomplicated situation for survivors, whenservices vary from county to county and amove can mean lost services. It also causescomplexities for providers, as described:

Being a provider, we serve people out offive different states in our facility rightnow. And I want to tell you that Iowa’sdefinitely the toughest state to work withbecause of all the different county plans.

There are also those who feel that the localcounty control has the benefit of bringingdecisions closer to home and making themmore individualized. Especially in smallercounties, people with disabilities may knowone of the three to five supervisors person-ally. Two county human services coordinatorsat the funding focus group agreed:

When we talk about people that suffertraumatic brain injury, we’re not talkingabout a case file or a statistics. I’m talkingabout the person that I’m sitting with onthe couch. I’m talking about the employeeyesterday who asked for unscheduledleave to baby-sit for a family whose four-year-old was hospitalized for an inoper-able brain tumor. It becomes so personalfor us because this is our community.

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There are a lot of inherent problems inhaving a system with as much flexibility asyou have with 99 different county plans,but the feedback that we get from thecommunity and our quality assurancemeasures say we’re doing a good job.

The Medicaid HCBS brain injury waiver iscurrently the only funding available specifi-cally for people with brain injury. Thenonfederal match for persons 18 and over isthe responsibility of the county of legal settle-ment; IF the county has designated slots forthe brain injury waiver in their county man-agement plan.

An added complexity in funding for peoplewith brain injury in Iowa is the issue of thecounty of legal settlement. Medicaid fundedservices are determined by the county oflegal settlement. If a person with a braininjury moves within Iowa, funding responsi-bilities stay with the original county of legalsettlement. A person moving to Iowa after abrain injury does not have a county of legalsettlement and becomes the responsibility ofeither the original state or becomes theresponsibility of the state of Iowa. Conflictsover these responsibilities can turn the per-son with a brain injury who moves into afunding “hot potato,” adding to the problemsof service access.

The conflict over state and county contribu-tions is not the only “ball tossing” that affectsservice eligibility for people with brain injury. Afamily member says:

I mentioned the county and state handingthe ball back and forth the person who isbrain injured. But there is some of thatbetween Medicaid and the schools too,

drawing a line between what is medicaland what is educational. I think there arekids who fall through the cracks. Neitherside is willing to pick up the whole ball.

An educator suggests a non-categoricalapproach to service eligibility:

The school system in Iowa no longerrequires a child have a label in order toget services. We look at the needs thatchildren have and try to match thoseneeds with funding and what we canprovide. I think if we can do it at theschool level, we should be able to do it atthe adult level as well.

Funding

In the case of some disabilities, there is oftenthe argument that it is not the amount ofmoney that is the issue in improving services,but the efficient use of funding— less duplica-tion, more coordination. In the case of ser-vices to people with brain injury, this is notthe case. The beginning issue seems to befundamentally about quantity. “I guess I don’twant to give the impression that there issufficient support, sufficient money, and itsjust being distributed inefficiently,” says oneprovider. “With brain injury, there is insuffi-cient resources, first and foremost.”

The Life after Head Injury survey and thetelephone survey both give a picture of thefinancial resources being used for servicesfor people with brain injury. The Life AfterHead Injury survey showed some 15% of therespondents did not have health care cover-age a year after their injury. Sixty-five percentreported having private health insurance and

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only 11 % report being on Medicaid. Elevenpercent reported being unable to see a doctorbecause of cost. This varied little acrossseverity of disability.

In the telephone consumer survey, using agroup averaging 10 years post injury, 16% ofthe respondents report SSI as being one ofthe services that they received. The majorityof the services they report using were eitherfree, such as the support groups, or providedwith public funding (e.g., SSI disability).About 8 percent of the services are paid forsolely with private insurance funds, and 6percent are paid for with private funds. Ap-proximately another 6 percent use sliding feearrangements, with the survivor paying someportion along with either insurance or privatefunds.

The difference in responses between the LifeAfter Head Injury survey and the telephonesurvey confirms comments about fundingmade in the funding focus group, namely thatfunding for immediate post injury services areoften available, especially if private insuranceis available. As one provider described in thefocus group:

I think that somebody mentioned thatthere is probably a lot of money spent ona person with brain injury right up front,you know, at the time of the injury. Insur-ance companies, Medicaid. Everybody’sdumping money into that. It’s just that withbrain injury, after that it just drops off likegoing over a cliff.

The funding focus group spent part of its timetogether outlining funding resources for thearray of services identified for this project.The list, shown in Table 1 below seemssubstantial. However, the creators cautionedthat it is deceptive. A provider looking at thelist observed:

OK, we’ve probably got 20 things listed.Every single one of them has inadequateresources to provide the care. They allhave their own guidelines that they haveto meet, so imagine a 30-page applica-tion. Take something as simple as gettinghelp for someone who needs to relearnhow to cook a meal. We might have toaccess four or five of these fundingsources, for transportation, some in homeservices. What if there were four lifedomains involved? We’d have sixteenfunding sources and each one has a 30page application. What do you think thechances are of that person ever learningto cook a meal?

It appears from this long list that there’s alot of money out there for brain injury, andthere’s not. It’s a little bit in a few places. Itis going to require a new source of fund-ing and that’s all there is to it.

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34

Table 1: Sources of funding for service array for Iowans with Brain Injury

(In some cases the agency/program is also the provicer of the service)Developed by focus group on funding issues, June 16, 1998

CHILDREN ADULTS (over 21) ELDERLY (over 65)Medical Services

Medicaid/Title XI (Extensive for children, covers more than with adults); EPSDT.. no limits but income; self-pay private insurance; charity (hospital write-offs); family; county general assistance (Crisis)

Medicaid-Title XIX (but more restricted than for children); private insurance; self-pay; family; county general assistance

Medicaid; Medicare; Commission for the Blind; private insurance; self-pay; family; county general assistance; charity

Therapy (PT/OT/Speech)

AEAs if necessary for education; Medicaid; Medicare (rehab for period of time); Private insurance (usually underinsured for therapies); family; self-pay

Medicaid; private insurance; self-pay; family

Medicaid; Medicare; self-pay; family

EducationPublic education mandated to 21 (many students/families don’t know this and matriculate at 18)

DVRS can help pay for college for eligible client with plan and vocational goals; family; self-pay; private organization scholarships

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CHILDREN ADULTS (over 21) ELDERLY (over 65)In-home/residential

SSI/SSA (rigorous qualifications) Department of Public health Homemaker Health Aid grant (sliding scale); Family Support Subsidy (state program, waiting list); BI Waiver

SSI/SSA; county; County Care Facilities; homeless shelters; prisons; families; Home Health Aid grant; Personal Assistant Services model program (only a few counties; BI-Waiver; families; Mental Health Institutes

Area Agencies on Aging; Medicare

TransportationSchool; families Medicaid (for medical visits);

charity; paratransit (county; families; self

Medicare; county transit; Area Agency on Aging; families; self

Independent LivingBI waiver; County; Voc Rehab; Independent Living Centers (Federal) United Way; charity

Equipment and Assistive Technology

Some through education; BI waiver; charity (Lions); family; IPAT loans

BI waiver; Medicare, Medicaid; Independent Living Centers; charity; DVRS; PASS plans (DVRS); VA; county—(when there is no other funding), IPAT loans

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CHILDREN ADULTS (over 21) ELDERLY (over 65)Vocational

Schools to 21 Voc Rehab; VA; Dept. for the Blind; county; BI waiver; families; employers; PASS plans; IRWE

CounselingSchools Community Mental Health;

private ins (limits) Medicaid; BI Waiver; EAP; family; self

Case ManagementFed/State Medicaid; BI Waiver; family

Fed/County; BI Waiver; family; self

Fed; Elder Affairs; family and friends

AdvocacyPE Connection; Brain Injury Association of Iowa; State Advisory Council on Head Injury; Dept. of Human Rights; DD Council; Iowa P and A; League of Human Dignity; ILC; Dept. of Public Health; DHS; family; friends

BI Waiver; Brain Injury association of Iowa; State Advisory Council on Head Injury; Dept. of Human Rights; DD Council; Iowa P and A; League of Human Dignity; ILC; Dept. of Public Health; DHS; family; friends; Voc Rehab

Area Agency on Aging

Ge o g r a p h y

An individual’s county of residence makes adifference in access to services because ofthe county funding system already discussed.In addition to limitations to service accessimposed by the funding system structure,access to services is also impacted by prob-lems associated with service provision in arural state. Sixty percent of Iowans are livingoutside a metropolitan area, according to the1992 census, making Iowa one of the top tenrural states. Iowa ranks 44th in the number ofphysicians per 100,000 population, a statisticthat under-represents the scarcity of physi-cians in rural areas. On the other hand, Iowais over the national average on number ofmotor vehicle accidents per mile traveled. Inthe TBIRDS review of rehabilitation facilities,50% of the counties in the state had NOservices identifying themselves as being forpeople with brain injury. In the telephonesurvey, consumers reported most of theservices are accessed in the same commu-nity or within five miles of the survivor’s home(75%). Another 12% say they go from 6 to24 miles, 10 percent from 25 to 100 miles,and 3 percent travel more than 100 milesaway. The longest distances are associated

with obtaining services at very specializedfacilities. Having to drive at least moderatedistances is more typical of rural residents.The difference between rural and urbanpopulations in the time it takes to transport acrash victim with TBI to the hospital wascovered in Section 1.

S u m m a r y

Issues of accessibility involve the connectedissues of eligibility criteria, funding and geog-raphy. The relative weight of these factors isdifficult to sort out, and they blend in turn withissues about the availability of services thatare specifically designed for people with braininjury. As one provider explains:

You’ve got three issues as far as I’mconcerned: You’ve got funding issues,you’ve got delivery issues, and you’vegot training and expertise issues.None of these issues are being ad-dressed for Iowans with brain injury.

Section 6 will look at how Iowa survivors andtheir families have described their experi-ences with the service system, and their ownviews of unmet needs.

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6.Is the system meeting the needsof survivors and their families?

It�s hard to say what I need. Just more help. More options. More choices.�Iowan with a brain injury

We need someone to help with all the problems that someonewith a brain injury has, rather than just putting us aside.

�Family member

With eligibility, funding, and geographicalproblems all influencing accessibility to ser-vices for people with brain injury, it is nosurprise that survivors and their families canidentify unmet needs.

It is the strong consensus of survivors, familymembers and providers that after hospitaliza-tion and immediate rehabilitation, there is, forall practical purposes, no system of care.

Needed services

The Life After Head Injury (Schootman, 1998)survey and the consumer telephone surveyasked participants to identify services theyfelt they needed but could not get. In the LifeAfter Head Injury survey, 22% of persons withtraumatic brain injury indicated that theyshould have received services but did not.The most frequently mentioned servicesneeded were physical therapy, psychological

counseling and family counseling. Sixteenpercent of those who sustained mild trau-matic brain injury stated that more serviceswere needed while 42.8 percent of those withsevere traumatic brain injury reported need-ing more services. The top three servicesnamed by those who sustained mild trau-matic brain injury were physical therapy,memory therapy and psychological counsel-ing. Memory therapy was the most frequently

Figure 13 Services that should have ben received but werenot by injury severity*

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mentioned service needed for those withsevere brain injury. Family counseling, physi-cal therapy, and psychological counselingwere also mentioned frequently.

In the telephone interviews, which consistedof more long term survivors, a little over two-thirds (68%) of the survivors indicated thatthere were services that they needed butwere not getting. Thirty-six percent of theneeded services identified were supports forcommunity living, including transportation.Over half the responses in this communityliving category were needs for recreation andsocial opportunities for people with braininjury, not the more traditional supportedliving services. Respite services for familiesmade up about 20 percent of this group aswell. Sample comments from the surveyinclude:● Someone to help in the house. It’s just too

much for one person● We need transportation. We’re 2 and a

half miles outside Woodbury countywhere his other services are and he can’tget bus services to our home

● I need a social life, somewhere to go● Need activities and social opportunities● Organized recreational opportunities● The family has all the burden. Need a

break once in a while● Need a life outside of medical stuff

Therapies, including occupational therapy,physical therapy, speech therapy and coun-seling services each made up 15% of theidentified needed services. Specific servicesmentioned included:● Psych services and counseling for family● Stress management. Anything out of the

norm is stressful

● Psychiatric help● Physical therapy, at least l time per week● Private pay speech

The Brain Injury Association of Iowa recentlydid a survey (BIA-IA, 1998) of their member-ship. One of the questions involved identify-ing their top needs, as survivors or familymembers. Of the 59 respondents, 23% putcounseling down as one of their top threeneeds, 20% included community living topicsin their top needs. Training was also identifiedas a need by 20%. Educational issues fol-lowed with 16%. Sample responses included:● Services to get survivors back into com-

munity living post intensive care● Additional services in the community.● A person to talk with● Training—families don’t fully understand

the characteristics of people with braininjury

● Increasing funds available for educationand associates in schools to assist stu-dents with brain injuries

A recent study (Deason, 1994) looked at therelationship between family stress and thelack of services for persons with brain injuryin central Iowa. In telephone interviews with45 family members, twenty percent felt theydid not have good support from the Depart-ment of Human Services in their manage-ment of their family member with brain injury,while 53% were undecided. Regarding resi-dential services, 86% strongly agreed thatthere needed to be more residential options.Ninety-three percent felt there needed to bemore vocational services, and 92% felt thereneeded to be more social activities. Abouthalf of the survivors were at home during theday and the other half were not. Deason’swork showed that this factor alone did not

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account for stress reported in a family’s life.Deason work also showed that three times asmany of the caretakers were women as weremen.

Information and Referral

The telephone survey asked specific ques-tions about information and referral services.One person interviewed referred to informa-tion and referral as “help finding out whathelp we can get.” Just over one-half (53%) ofthe respondents reported having troublegetting information about where to get ser-vices or help: not knowing where to beginlooking, lack of coordination, lack of knowl-edge about services among providers, andlack of post-hospital information. Someexamples of responses:

● When first injured, neurologist was notvery knowledgeable about services

● Frustrated early on trying to work with thesystem and bureaucracy

● Services for TBIs are not coordinated● Head-injury association send out newslet-

ter, but is not services or resource ori-ented

● Would have been easier if she were achild

● Not a lot of services locally, informationabout services stopped when left thehospital

● Does not know where to look into servicesfor certain needs

● No center for information● No one contacted them after accident● Different people gave different recommen-

dations, hard to know where to go● Has no idea of who to turn to

● In the beginning was worse, few thingsavailable

● Had no idea where to look● Information from the hospital was too

soon, family was overwhelmed

Training

While training in brain injury is not always aservice directed to families and survivors, itsurfaces repeatedly throughout this report asone of the keys to improving Iowa’s servicesystem: There is an overall lack of serviceproviders with an understanding and specificexpertise in working with individuals withbrain injury. The providers surveyed by tele-phone typically noted that their services werenot specifically targeted to survivors of trau-matic brain injury. In effect, many offer ser-vices that persons with TBI need but don’thave specialized knowledge of issues suchas the coordination of services for survivors.

As part of this project, the Iowa UniversityAffiliated Program conducted a postcardsurvey to identify the most needed trainingtopics. Over 100 professionals responded tothe survey. The mailing list consisted of avariety of professionals involved with stu-dents with brain injury, including schoolnurses and the Area Education Resourceteams. Sixty percent of the respondentsincluded behavior issues in brain injury asone of their top three topics. Educationalstrategies for students with brain injury wasnamed by 42% of the survey respondents.About 30% of the respondents includedvisual/perceptual problems in brain injury,family issues and concussions in sports.

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The Iowa Department of Education’s consult-ant on brain injury recently surveyed thefifteen Area Education Brain Injury teams inIowa. They were asked about training needsfor the teams specifically, and then also aboutneeds for the classroom teachers and para-educators who will be working with studentswith brain injury. The AEAs reported some ofthe following needs:

For the teams:● A packet or training package for educators

that we could use when we inserviceteachers

● Yearly update of skills and contact withexperts in the field

● Information on new meds for immediatepost- injury

● Suggestions for evaluating students forplacement

● When kids have been in services forseveral years, we need maintenancesupport for families and teachers who seelittle improvement in the kids

● More information on home services forfamilies and financial services, and coun-seling for families

● Continuing need for functional assess-ment for BI kids

● Medical concerns on reentry.● Preparing for reentry

For general education teachers:● More information on how these students

differ from typical LD or MD● More training on how to implement modifi-

cations in school● Overview of teaching strategies and

behavior management● Video of basic information needed…

● Training isn’t useful without a specificstudent in the classroom…the informationwouldn’t generalize

● Training on functional behavior analysis● Basics on brain injury● 504 accommodations and brain injury● Managing students with brain injury in

regular ed classroom● How to tell brain injury related behavior

from age normal behavior

The survey also asked the teams to assesshow well the schools are meeting the needsof students with re-entry into schools:● The teams themselves are a strength in

terms of educations response● The teams have helped teachers be

willing to accept the students back into theschools, because they won’t be alone

● There is a good relationship betweenhospital rehabilitation and the brain injuryteams

● Non labeling means we can have a flex-ible approach and mix general ed withspecial ed

The survey also asked about how the AEAscan better meet the needs of families:● There is nothing written in an IEP as to

how parents and or families will receivesupport. Should there be? And if so how?What services or supports should besuggested to families?

● If parents do not want help, but it is clearthat help is needed for the student with abrain injury to progress, what should bedone?

● Do we have any role with students whohave a brain injured parent or sibling?

● We need more time for follow up withfamilies

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● Find a way to make sure families knowabout brain injury teams before the childleaves the hospital

● It would be good to have special trainingin how to help families

● We should have support groups for bothstudents with brain injuries, and also theparents of the students with brain injuries

Best and Worst Experiences

While specific unmet needs and system wideneeds have both been identified here, it isimportant to note that positive experienceswith services are also part of the lives ofsurvivors and their families. In the telephonesurvey, nearly all of the respondents (92%)could name a positive experience with someservice. The comments provided often focuson comments about a particular provider orprogram that made a difference. Someexamples follow:● The resource room and the special edu-

cation teachers—it is 1 on 1● Occupational therapist was very helpful

and gave us good tips for practical dailyactivities

● Agency provided companionship and helpwith some tasks of daily living (but wasgrant funded and got cut)

● Vocational Rehabilitation, they offered tohelp when others would not

● Evaluation by neuropsychologist was veryhelpful in letting them know what theirsituation was

● Medicare has paid bills● Speech therapists, very knowledgeable

about injury and have given family themost encouragement

● County supervisors were very willing to dowhat they could

● The kindness of people

Three-fourths (75%) of the respondents in theHoyt-Mack telephone survey could alsoidentify a “worst” service experience. Just asthe best experiences were very individual-ized, so were the worst experiences. Indeed,it is interesting to note that some of the sameservices, or types of services, appear on bothlists. Some examples of the worst experi-ences refer to the eligibility and fundingissues that have been covered in other sec-tions:● Fell through the cracks in the beginning,

had to pay all of the bills● Program failed to follow through with

promises, kicked out when behavioralproblems, rather than working on them

● Waited for over 2 years for Title 19 bed forbrain injured program in ICF

● No speech or physical therapy in ICF● As soon as insurance ran out, people less

willing to help● Trouble with respite care, difficult to get

SSI – took 10 years. Penalized becausea housewife which did not count as em-ployment

● No follow-up after hospitalization● Insurance company is horrible to deal with● Bad experience in rehabilitation program,

went in sociable, came out withdrawn● Lack of local services● Some doctors closed-minded, treat as

textbook case● Did not find out about social security

services until had used all of personalsavings

● No one her age in nursing homes● Had to leave state to get needed services

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● Funding will not let her move to facility fordisabled persons

● Have been told to get a divorce, in orderto qualify for more funding

● Early, problems were not recognized asTBI, treated for mental health problems

● Left hospital thinking things would be fine,then no referrals

● Some providers are condescending

S u m m a r y

In its conclusion, the telephone surveyorsasked consumers to add any additionalcomments about the service system. It iseasy to find the unmet needs in these state-ments.

On the array of services:● Treatment needs to be available through-

out the process, don’t just need help rightwhen it happens, but when other changesoccur also..

● No attendant care in the area. This is aconcern when family may no longer beable to meet the care needs

● Worried about care once parents can nolonger provide it..

● More counseling services, especiallymarital counseling for spouses of TBI

Information and referral:● Need someone in hospital to explain what

is going on and what is available

Training:● Sometimes wish he had something physi-

cally wrong so others would understandhim better

● At the time of injury, professionals did notseem well-informed

Funding:● Main problem financing. Iowa declined

because accident happened in anotherstate. Other state refused because hewas no longer a resident

● There should be more funding for TBIpatients because it is not like just gettingover an operation, it is a lifetime ordeal

● Hard to get services for people over age21

The big systems issues in services appear inthe every day lives of survivors and familiesas many small absences and frustrations.The strongest unmet needs and frustrationsare not seen in the immediate crisis andrecovery after a brain injury. It is in the post-acute period that survivors and families feelthe absence of a system. Therapy, counsel-ing, and supports for community living couldoffer concrete assistance and relief from theisolation and responsibility that many familiesand survivors experience.

Section 7 will offer a summary of the issuesthat have been identified in the needs as-sessment and the first state plan for address-ing these needs.

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The Iowa Plan for Brain Injury, developed byThe State Plan Task Force of the Iowa Coun-cil on Head Injuries, is Iowa’s first officialanswer to this section’s question.

People with brain injury have been referred toas an emerging population. It is emergingbecause the capacity to save people withhead trauma has improved dramatically. Theneeds of people with brain injury cannot bemet through the established mental health ormental retardation approach to services.

7.What can be done to improve Iowa

services and supports for peoplewith brain injury and their families?The Iowa Plan for Brain Injury

Some things occur to us in life and they occur suddenly,and we don�t have any transition time. We don�t have any preparation.

Brain injury is one of those things. And then people have to make aconnection between their life before the injury and after the injury.

�Brain injury consultant

In college it was great, because it seemed like�It didn�t seem like they were your teacher anymore, they were

more your friend. They were trying to learn as much as you because theydidn�t understand brain injury, and I didn�t understand the material.

Everybody worked together. I got my degree in retail and now I have a job.�Iowan with a brain injury

The needs assessment has identified ways thatthis systemic service problem can be ad-dressed. The major points that have emergedin the previous sections relate to family needsfor services and supports, eligibility require-ments, funding issues, and training needs. Buta new service system has not yet developedspecifically for them. Thus, they are usuallyserved inappropriately or not at all.

The priorities identified by the State PlanTask Force follow.

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Families

In the absence of a strong service system forpeople with brain injury, families are theprimary service providers in Iowa today. Evenwith a more developed service system, thiswould be true, as it is for other people withdisabilities, including the frail elderly. Themoral imperative of strengthening and sup-porting families in this difficult work is also acost-effective approach to services. Familiesand survivors are asking specifically fortherapy and counseling, information andreferral services and a varied array of help forcommunity living. In the bigger sense, whatthey are asking for is not to be left alone intheir responsibilities.

Funding

Some argue that everything is about money.There is general agreement that people withbrain injury need access to more servicefunding. However, various groups with needscompete for available funding from the gov-ernment. To develop an accessible array ofservices for people with brain injuries, acombination of private, state. and federal,funds need to be used.

There is general agreement that the countysystem of funding adult services must bechanged, with the state taking over moreresponsibility for that funding. Others havesuggested some new funding could comefrom a “sin tax” on people arrested for drunkdriving, speeding, or not wearing a seat belt.Since such a high proportion of traumaticbrain injury occurs as a result of motor ve-

Information and Referral

The need for information and direction toresources is critically lacking, for survivors,their family members and providers. Begin-ning at the hospital, the family needs to knowwhere to turn for help and how to access thecurrently limited services and funding that areavailable.

hicle crashes, this would be a reasonablesource for those funds.

Eligibility criteria for services for people withtraumatic brain injury include, but are notlimited to, the following: the age of the personapplying for services, their age when thedisability was incurred, diagnosis, degree ofdisability, income, family income, county ofresidence, state of residence, and access toinsurance. For families, it may seem at timesthat eligibility is just a lot of different ways toget a no, a different one at every agency orsource of funding.

Training

Increasing Iowa’s resource of providers whoare knowledgeable and experienced in thearea of brain injury is as important to serviceimprovement as the funding. There isacknowledgement of this across agenciesand disciplines, as well as with the survivorsand families. Training needs to cover thespectrum, from general information aboutbrain injury, its causes and consequences, totechnical disciplinary training.

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THE PLANWith these areas of focus in mind, the StatePlan Task Force spent two days togetheroutlining a response for Iowa in addressingthese concerns. The task force developedthe following areas of special focus.

AREA 1Increase funding for persons withbrain injury across the continuumof care.Rationale: The needs assessment clearlyindicates that funding that people with braininjury are able to access is practically nonex-istent. Public understanding of this disabilitywas seen as the staring point for fundingadvocacy.

Year 1■ Promote recognition of brain injury

as a disability● Increase media coverage● Agree on a single definition

of brain injury■ Gather, compile, and agree on the inter-

pretation of baseline data■ Decide what we are requesting

● Define a model system● Decide on a core set of services for

model system● Assign a dollar amount on a core set

of services■ Develop source of funding for long-term

services and identify legislative processesfor implementing the system● Review and agree upon model

system of care● Coordinate with Brain Injury

Case Management/ Service CoordinationCase management services that are notsimply finance management and gatekeepingwere seen as a critical need for survivors andtheir families. Currently only available in alimited way for people with brain injury, thisarea was seen as a key to life planning formaximum level of rehabilitation and indepen-dence.

TransportationIn this rural state, transportation is seen as acritical element in accessing all other servicesand in maintaining the maximum indepen-dence possible. While a few urban areashave fully developed transit systems, much ofthe state depends on a relatively sparse andinflexible system of public transit.

HousingAccess to a range of supported housing op-tions, from total independence to age appro-priate community based supervised living, hasbeen identified as a serious missing link forpeople with brain injury. There are few op-tions for an adult with a brain injury, betweennursing home care and living with the family.

EmploymentA range of support services related to em-ployment have come of age for people withother kinds of disabilities. But the system isnot yet responding effectively to the uniqueneeds of adults with brain injuries who needhelp in accessing and maintaining employ-ment.

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Association and other interestedgroups and reach agreement

Other suggestions from the Task Force■ Examine the possibility of target funding

based on prevalence■ Fund services linking with standard of

care levels■ Review availability of funding from third-

party payers■ Review utilization of e-codes for data

collection and tracking purposes■ Investigate decategorization with funding

based on functional definitions■ Consider prevention of secondary

conditions

AREA 2Develop and implement standardsof care to ensure quality and costeffectiveness and linkage to fund-ing for care.Rationale: It was felt by the task force that theneed to upgrade the level of responsethrough training would have to first be met byidentifying the standards that caregivers needto have.

Year 1■ Begin survey and compile data on service

utilization in the state of Iowa■ Survey range of standards of care avail-

able, including those of accrediting bodies■ Explore the potential for deemed status

and develop a time line for introducinginto the legislative process (Council ap-proval by July, 1999)

Year 2■ Recommend standards of care for acute,

postacute, and community levels

■ Introduce recommendations for standardsof care into legislative process

Other suggestion by the Task Force■ Associate funding with standards of care

level and coordinate funding initiativeactivities with legislative initiatives forestablishing standards of care

AREA 3Develop and implement trainingfor service providers and families.Rationale: Training was identified as a criticalelement in developing services that are trulydirected at the needs of people with braininjury.

Year 1■ Expand training surveys where necessary■ Establish a state advisory committee on

brain injury training■ Identify all current training by topic, locale

and target audience■ Consider joint conferences across

disciplines

Year 2■ Centralize training resources

(i.e., videotapes) for distribution/sale/checkout

Year 3■ Develop an ongoing, comprehensive

plan for brain injury training■ Train on standards of care

AREA 4Make case management availableto all people with brain injury.Rationale: Case management services were

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seen as essential to well-coordinated andcost-effective services.

Year 1■ Research range of models for case

management/service coordination,including those used by different states

■ Review different models of casemanagement

■ Recommend a model of casemanagement/service coordinationfor Iowa

■ Increase support for families/caregiversto augment the limited modelrecommended

Year 2■ Assign a cost to the model recommended■ Define outcomes for case management/

service coordination

AREA 5Develop and implement a singlepoint of contact for statewideinformation/referral services.Rationale: Across all components of theneeds assessment, information and referralwas identified as a major need.

Year 1■ Develop or bolster a central point of

information (CPI)■ Develop a website for CPI

Year 2■ Link to local first points of contact■ Increase media regarding the availability

of CPI■ Revisit and revise initial and follow-up

information packets for support and

intervention in the acute, postacute,and community levels of care

Year 3■ Determine the costs of both the minimum

and ideal level of CPI■ Build a network of local brain injury

contacts and experts

AREA 6Develop and implement access tolife care planning services.Rationale: Life care planning, when consis-tently utilized, can improve quality of life andreduce costs.

Action steps:■ Study models for care planning utilized

by the insurance industry as well as thoseused by other states (particularly adjoiningstates)

■ Develop predischarge model for usebeginning with acute care settings

AREA 7Develop and implement commu-nity supports for persons withbrain injury.Rationale: Community supports, includingtranportation, housing and employmentservices, were identified as being almostnonexistent. Plans for these elements will beidentified in the future, based on the stan-dards of care developed.

The Advisory Council on Head Injuries isdeveloping specific action steps for this area.

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The implementation of this plan will be an ambitious un-

dertaking but one that is long overdue. The Iowa Depart-

ment of Public Health�s successful application for a sec-

ond year of funding from Maternal and Child Health will

provide a boost to these start up efforts. It will, however,

be Iowans with brain injuries, their dedicated families and

caregivers who will provide the energy to move forward.

Moving Forward

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Brain Injury Association of Iowa, UnpublishedMember Survey, 1998.

De Boer, Paul, State Agency Report, Unpub-lished report, Iowa Department of Public Health,Des Moines, 1998.

Deason, Dwight, Stress and Lack of Services forPersons with Brain Injury and Their Families inIowa, Unpublished research report, 1994.

Fick and Petty, Statistics on Brain Injury,Neurolaw. Com/brain.html 1997

Hoyt-Mack Research Associates, Report onsurvey of survivors of brain injury, and providersof brain injury services. Ames IA, 1998.

Iowa University Affiliated Program, Unpublishedtranscript. Focus group on Funding of Servicesfor People with Brain Injury, June 16, 1998.

Kraus, J. and McArthur, D. Epidemiologic aspectsof brain injury. Neuroepidemiology, Vol. 14,number 2. 435-450, 1996.

McMordie, W.R., Barker, SL and Paolo, T.M.Return to work (RTW) after head injury. BrainInjury, Vol 4. No 1., 57-69, 1990.

Ragnarrson, K., Thomas, J., Zazler, N. Modelsystems of care for individuals with traumaticbrain injury. Journal of Head Trauma Rehabilita-tion, June 1993.,

Schootman, M. and Harlan “Severe TraumaticBrain Injuries in Iowa 1994” Report from IowaDept. of Public Health, Des Moines, 1996.

Schootman M. and Harlan, M. “Traumatic BrainInjuries in Iowa 1995” Report from Iowa Dept. ofPublic Health, Des Moines, 1997.

Schootman M., and Harlan, M. “Traumatic BrainInjuries in Iowa 1996.” Report from Iowa Dept. ofPublic Health, Des Moines, 1998.

Schootman, M. Report on Life After Head Injury:A Questionnaire, Iowa Dept. of Public Health,Des Moines, 1998.

Stephan, James, and Memola, Christopher,“State and Federal Corrections Facilities” Correc-tional Populations in the United States, Bureau ofCriminal Statistics, 1997.

Traumatic Brain Injury Rehabilitation Survey(TBIRDS), Funded by The University of IowaHead Injury Prevention Research Center, IowaDept. of Public Health and the Governor’s Advi-sory Council on Head Injuries, Des Moines.,February 1997.

United States Census Bureau, 1990 U.S. Cen-sus, Washington D.C.

United States General Accounting Office, Trau-matic Brain Injury Programs Supporting LongTerm Services in Selected States. Report toCongressional Requesters. February 1998.

University of Iowa Injury Prevention ResearchCenter, Iowa Dept of Public Health andGovernor’s Advisory Council on Head Injuries,Traumatic Brain Injury Rehabilitation Survey, DesMoines, 1997.

REFERENCES

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