Percentages provided throughout this report were calculated: number of respondents who chose a value/total number of respondents who answered that individual question.
Most of the individuals who responded identified themselves as individuals with a traumatic brain injury (TBI) (49%), and an additional 12% as individuals with a brain injury (BI) that was not caused by trauma, for a total of 61%. Almost a quarter of respondents were parents (24%) completing the survey on behalf of their son or daughter.
| Person with brain injury | Parent | Spouse | Person assisting | Sibling | Child | Significant other |
|---|---|---|---|---|---|---|
| 309 | 121 | 40 | 20 | 19 | 10 | 6 |
The great majority of respondents (84%) lived in a house or apartment. About one quarter (28%) of individuals lived by themselves. Few respondents (9%) lived in congregate settings (group homes, assisted living, hospitals, rehabilitation facilities, nursing homes).
| House or apartment | Group home | Nursing home | Rehab facility | Hospital |
|---|---|---|---|---|
| 436 | 22 | 20 | 4 | 3 |
| Alone | Spouse | Parents | Roommate |
|---|---|---|---|
| 145 | 144 | 130 | 42 |
Respondents were from 68 Ohio counties, 77% of the state. Of those who provided their county, 57% were from predominantly rural counties and 43% were from the seven largest predominantly urban counties.
| Rural | Urban | Not noted |
|---|---|---|
| 277 | 209 | 36 |
| Franklin | Cuyahoga | Hamilton | Summit | Montgomery | Lucas | Stark |
|---|---|---|---|---|---|---|
| 66 | 47 | 32 | 17 | 16 | 16 | 15 |
Half of the individuals had been injured in car or motorcycle accidents, and another 7% on bicycles or as pedestrians. Medical problems (strokes, aneurisms, tumors, birth trauma, heart attacks) accounted for 12% of brain injuries. The "other" category (8%) included injuries caused by: other types of accidents (horses, airplane, surfing, hockey), medical complications (viruses, allergies, surgeries), and events (lightening strike and earthquake.) At least 12% of individuals sustained a brain injury that was not caused by trauma. Causes of these injuries were written in and are noted in the "How were you injured" chart with an asterisk (*).
| Car crash | Fall | *Other | *Stroke, aneurism | Assault, abuse | *Motorcycle | Pedestrian | *Work accident | *Tumor | Bicycle | *Birth trauma | Firearms | *Heart attack | Near-drowning |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 235 | 49 | 46 | 36 | 32 | 27 | 25 | 13 | 12 | 12 | 8 | 8 | 6 | 6 |
Survey results primarily represent the needs of adults with TBI. Over half (55%) of individuals were between 33 and 55 years of age. Seventeen percent were younger adults between the ages of 22 and 32, and 19% were older than 55 years of age. Children (birth - 21 years old) represented 9% of this sample.
| birth - 2 | 3 - 5 | 6 - 11 | 12 - 18 | 19 - 21 | 22 - 32 | 33 - 43 | 44 - 55 | 45 - 65 | 65+ |
|---|---|---|---|---|---|---|---|---|---|
| 1 | 11 | 2 | 20 | 13 | 83 | 110 | 166 | 73 | 20 |
The length of time individuals were living with their injuries informs the Needs Assessment. Survey respondents represent individuals who were newly injured to those who have lived with their injuries for decades.
The 469 individuals for whom this data was available represent a fairly consistent spread over the length of time individuals have lived with their BIs. Individuals with new or fairly new injuries (less than a year through 2 years) represent 20% of respondents, 3 - 5 years represents 17%, 6 - 10 years represents 23%, 11 - 20 years represents 19%, and more than 21 years represents 21%.
| 1 year | 2 years | 3 - 5 years | 6 - 10 years | 11 - 20 years | 21+ years |
|---|---|---|---|---|---|
| 53 | 42 | 82 | 106 | 88 | 98 |
Nearly two-thirds of the individuals (60%) were covered solely by private insurance, Medicaid or Medicare. Of the 506 respondents to questions about health insurance, 8% were living without any kind of health care coverage.
Forty-seven respondents wrote in one or more other type(s) of health insurance, including Bureau of Worker's Compensation (10), Veteran's Administration (7), Children with Medical Handicaps (6), and a mix of other insurers (25) that included six respondents who checked "Other health insurance" but did not elaborate.
More than one-third (193 / 38%) of survey respondents had private insurance; 25% were covered solely by private insurance:
About the same numbers (195 / 39%) were covered by Medicaid; 19% were covered solely by Medicaid:
About the same numbers of individuals (199 / 39%) were covered by Medicare; 16% were covered solely by Medicare:
Sixteen individuals have coverage through the Veterans' Administration or the Ohio Bureau of Worker's Compensation.
Note: Respondents were asked to check all applicable types of health coverage. Because people could check more than one, the totals for the breakout of responses is larger number than the number of people who have that type of health coverage. (For example, 193 people had private insurance. Totaling the bulleted breakout of the 129 people who had only private insurance plus those who had additional types equals 195).
| Private insurance only | Medicaid only | Medicare only | Medicaid and Medicare | Private insurance and Medicare | None | Other (written responses to "Other Health Insurance") | Private Insurance and Medicaid | VA and/or BWC* | BCMH* | Private insurance, Medicaid, Medicare |
|---|---|---|---|---|---|---|---|---|---|---|
| 129 | 95 | 79 | 77 | 41 | 38 | 25 | 21 | 16 | 6 | 2 |
Individuals and their families were asked four questions about their quality of life. Agreement with these indicators of daily life was not high. Individuals reported lower levels of agreement with the first three statements than did family members. Choice among meaningful supports was the lowest rated statement. More than half (51%) of the individuals disagreed that they have choice among meaningful supports, and nearly two-thirds (65%) of family members and others disagreed. As displayed on the following four pages, more individuals rated these statements as "not important" than did their families.
Percent of all respondents (people with brain injuries and their families) who agreed with the following statements, contrasted with the percent of individuals with brain injury who agreed:
| Question asked | Percent of all respondents who agreed | Percent of individuals with BI who agreed |
|---|---|---|
| Professionals listen to my needs. | 55 percent | 53 percent |
| Supports I get reduce my stress. | 53 percent | 48 percent |
| I receive the supports I need to live where I want to live. | 50 percent | 48 percent |
| I have choice among meaningful supports. | 38 percent | 41 percent |
Out of 496 responses, 246 (50 percent) agreed, 204 (41 percent) disagreed, and 46 (9 percent) said it was not important. Examples of comments from survey respondents include:
"I spent a long time living with my dad, because I was unable to find employment. Job services need to be expanded. There needs to be places a brain injured person can go to for the rehab help they need. I ended up in an old age facility at age 23."
"My mother had to go into a nursing home because there were not enough family and community supports."
"He has been in a homeless shelter 2 times so far this year."
This table displays differences in the responses to this question from individuals with a BI, and from families and others (parent, spouse, child, sibling, significant other, person assisting).
| Agree | Disagree | Not important | |
|---|---|---|---|
| Families, others | 52 percent | 44 percent | 5 percent |
| People with BI | 48 percent | 40 percent | 12 percent |
Out of 479 responses, 252 (53 percent) agreed, 189 (39 percent) disagreed, and 38 (8 percent) said it was not important. Examples of comments from survey respondents include:
"All I heard was don't do this or can't do that because he won't live anyway!! Well he did live and it's been a slow uphill battle every day."
"We are very angry that our tax dollars pay for various state and county run services that we do not even qualify for because our income is above the cutoff!"
"Try to listen to our special needs. You live where and like me for one week. You will see the need for better care and access to meaningful life."
This table displays differences in the responses to this question from individuals with a BI, and from families and others (parent, spouse, child, sibling, significant other, person assisting).
| Agree | Disagree | Not important | |
|---|---|---|---|
| Families, others | 58 percent | 37 percent | 5 percent |
| People with BI | 48 percent | 42 percent | 10 percent |
Out of 484 responses, 266 (55 percent) agreed, 199 (41 percent) disagreed, and 19 (4 percent) said it was not important. Examples of comments from survey respondents include:
"Everyone you talk to tells you a different story. They say they will help but all they want to do is pass the buck to someone else and expect you to do their job."
"Fire the people who hand out brochures of programs that have nothing but people handing out brochures - Give the jobs to TBI victims - spend the money on real supports such as transportation for living instruction. Recognize TBI as a disability."
"I received rehabilitation at [Rehab Hospital]. I was treated excellently while I was a patient and as an out-patient. I suggest that whomever could be treated there, should be. It's a tremendous facility."
This table displays differences in the responses to this question from individuals with a BI, and from families and others (parent, spouse, child, sibling, significant other, person assisting).
| Agree | Disagree | Not important | |
|---|---|---|---|
| Families, others | 57 percent | 42 percent | 1 percent |
| People with BI | 53 percent | 41 percent | 6 percent |
Out of 475 responses, 180 (38 percent) agreed, 267 (56 percent) disagreed, and 28 (6 percent) said it was not important. Examples of comments from survey respondents include:
"Need something different from transitional workshops for employment activities."
"As a home care giver, it would be awesome not to have to fight the system to get basic needs filled."
"I only have a choice among meaningful supports now because of my spouse's new health insurance."
"You come away, with NO hope. You have a son fighting for his life but NO one gives you hope, or aid. You find there just isn't any thing available."
This table displays differences in the responses to this question from individuals with a BI, and from families and others (parent, spouse, child, sibling, significant other, person assisting).
| Agree | Disagree | Not important | |
|---|---|---|---|
| Families, others | 32 percent | 65 percent | 3 percent |
| People with BI | 41 percent | 51 percent | 8 percent |
In addition, the Needs Assessment contained other quality of life indicators, including information about employment and income.
Eighty-six percent responded that their income was affected by their injury, and the same percentage (86%) responded that their employment was affected. Eighty-one percent responded that their psychological status was affected, and three-quarters (75%) responded that their medical condition was affected. Sixty-four percent responded that their living situation was affected, and 47% responded that their marriage was affected.
| Income | Employment | Psychological status | Medical status | Living situation | Marriage |
|---|---|---|---|---|---|
| 415 | 414 | 391 | 363 | 308 | 228 |
Only 32 people out of the 452 adults over 21 years of age were working full time. This represents just 7% of the adults in this survey. Only 16% worked part time. About three-quarters of the adults (76%) were unemployed.
| Unemployed | Part-time | Full-time | Underage | Supported employment |
|---|---|---|---|---|
| 343 | 74 | 32 | 28 | 10 |
| Can't perform any job | Can't perform job | Can't find work |
|---|---|---|
| 146 | 119 | 62 |
These findings are troubling considering that most adults in this survey lived at home, either with family or alone. Very few individuals lived in congregate settings (9%).
The high unemployment rate of 76% found in this survey is even more troubling because Ohio's sample was reached primarily through the statewide brain injury network, and individuals are likely to be better connected to services and supports. Many individuals have strong family advocates.
And while the survey did not identify the severity of individual disability, the survey's respondents, who have increased supports, may represent individuals with BI who have greater employment opportunities than individuals who are not represented by this Needs Assessment.
Employment results did not change when we look at only adults of typical working ages who noted that they live in a home or apartment. Of the 301 adults ages 22 - 55 who responded:
When we look at the 301 adults ages 22 - 55 who live in a home or apartment who responded:
In 2000, the U.S. Census reported that family householders with a disability had an unemployment rate of 46% (42.3% not in labor force and 4.3% unemployed); family householders with a mental disability had an unemployment rate of 66% (60.8% not in labor force and 5% unemployed). (Source: Census 2000 Special Reports: Disability and American Families.) The 70% unemployment rate among a select sample of employment-aged Ohioans with brain injuries (ages 22 - 55) is indeed troubling.
| Do not need | Receive and satisfied | Receive but dissatisfied | Need this service |
|---|---|---|---|
| 134 | 34 | 29 | 93 |
| Do not need | Receive and satisfied | Receive but dissatisfied | Need this service |
|---|---|---|---|
| 154 | 22 | 18 | 83 |
The next three lists show the top 10 services that people with brain injuries and their families:
Note: Learning supports through high school (406 not need) not included due to underrepresentation of children with BI in survey respondents. Inpatient rehabilitation (358 not need) not included as most individuals are post-hospitalization.
OLRS found it noteworthy that alcohol and drug treatment was the service most often cited as not needed. Of the 289 individuals with BI known to be over 21, 85% (247) self report not needing this service. Of the 160 family members, 84% (134) report that their family member with a BI known to be over 21 does not need this service. Note that this percentage does not change when the self reports of individuals with BI are compared with the reports of their families.
This defies "conventional wisdom" and is also counter to other self reports of the needs of individuals with brain injuries. (Footnote: In a recent article accepted for publication in The Journal of Head Trauma, researchers in South Carolina sampled 1,830 individuals with TBI one year after injury. That study found that a substance abuse problem was documented in 532 participants (29 percent). Particularly revealing is that perceived need to get help controlling alcohol or drug use was underestimated 3.5 times when compared to derived need using the Center for Outcome Measurement in Brain Injury (COMBI) scheme and interview. "Unmet Service Needs of Persons with Traumatic Brain Injury," Pickelsimer; Selassie; Sample; Heinemann; Gu; Veldheer. (undated.)) It is possible that the difference may have something to do with the profile of typical respondents represented in Ohio's Needs Assessment. Ohio's sample was reached primarily through the statewide brain injury network, and individuals are likely to be better connected to needed services and supports.
The following three lists contain the results for people with brain injuries and their families for each service contained on the Needs Assessment:
| Service | Satisfied | Disatisfied |
|---|---|---|
| Medical - general | 322 | 34 |
| Dental | 246 | 18 |
| Medical for injury | 220 | 58 |
| Support group | 218 | 44 |
| OT-PT | 151 | 32 |
| Case management | 134 | 66 |
| Individual counseling | 134 | 28 |
| Speech therapy | 117 | 21 |
| Neuropsychology | 106 | 29 |
| Vision for injury | 103 | 20 |
| Cognitive training | 100 | 22 |
| Transportation | 94 | 28 |
| Legal for injury | 94 | 32 |
| Home care support | 92 | 17 |
| Recreation | 87 | 21 |
| Assistive technology | 85 | 18 |
| Inpatient rehabilitation | 78 | 21 |
| Nursing | 68 | 12 |
| Social skills | 63 | 8 |
| Housing assistance | 61 | 14 |
| Community skills | 58 | 11 |
| Behavioral supports | 56 | 8 |
| Family counseling | 53 | 15 |
| Budget training | 49 | 6 |
| Help getting job | 48 | 42 |
| Home modifications | 37 | 9 |
| Respite care | 36 | 8 |
| Learning after high school | 36 | 7 |
| Help keeping job | 26 | 24 |
| Learning through high school | 24 | 7 |
| Alcohol-drug treatment | 22 | 3 |
| Emergency shelter | 8 | 7 |