Based on the feedback from individuals with brain injury and their families, and the findings of all portions of the needs assessment, the following recommendations should be considered:
The following comments received show just how difficult it is in Ohio to even find out about existing services:
"I just think there should be a set place where someone like myself know they can go to find the help they need."
"A need exists for TBI survivors to be able to obtain information and help more easily."
"We basically gave up long ago. Too difficult to get competent help and find out what I am entitled to."
"Need a centralized area for information, services and support from infancy through adulthood."
There is currently no state agency that has overall responsibility for individuals with brain injury, and no infrastructure to ensure that services needed are planned for or developed. Currently the Rehabilitation Services Commission (RSC) serves as "lead agency" for brain injury. The recommendation for a "home" agency for brain injury calls for more than RSC can do under the current parameters of the brain injury program.
While this "home" need not be a new and separate agency, it should place responsibility and accountability for developing user friendly and easily identifiable information about brain injury, coordinating help in getting support for individuals with brain injury and families, technical assistance and other training for providers in other service systems accessed by individuals with brain injury to ensure appropriate and effective services within agencies; and policy development and program evaluation. Funding appropriate to meet these new responsibilities must be provided.
A "home" agency should be responsible for developing policies that are flexible so that services are easily accessible and responsive to people's needs.
Affordable technology solutions should be utilized. A web "home" can be created and kept up-to-date with information and resources for people with brain injuries and their families. This web home can employ survey tools to gather information about self and family-reported customer satisfaction, quality of life, and unmet needs, with outcomes posted.
People want one place to get reliable, usable information about brain injuries, potential supports, eligibility and applications. Individuals and families are desperate for dependable and timely information. Creating a web home is an affordable solution. Individuals and families without Internet access could access this information in places like libraries, or it could be provided to them by case managers and other staff.
Making this information readily available will assist individuals and families in their choice of providers, will improve providers' ability to better meet the needs of individuals with BI and families, and assist policymakers as they make decisions that affect the brain injury community.
The Needs Assessment survey found that case management is among both the top ten services needed and the top ten services received. One respondent commented, "I need to know who I can reach to get services for my son with TBI. I feel all alone with no one to turn to for any service I need." Another stated, "Injured people and caregivers need to be told where to go for services and how to go about getting them. It is all new and people talk way over your head."
Several individuals and families found case management received by agencies unfamiliar with BI to be unacceptable. For example, one parent noted, "Case manager/service coordinator is crucial in working through this maze - in our county that falls to MRDD and that has been totally unsatisfactory - MRDD should not handle TBI."
A case management system should be developed that includes standards to assess case managers' knowledge of and familiarity with brain injury diagnoses and how that impacts and informs service delivery.
The Needs Assessment clearly demonstrated the lack of understanding of brain injury and the need for training and technical assistance. One survey respondent noted, "Local/government agencies, i.e. Social Security, Job and Family Services, do not respond well to someone that is in need of assistance due to TBI. It is not as visible as someone who is physically disabled." Another respondent noted, "Few social workers or medical professionals seemed at all familiar with TBI." Focus group participants were asked about the private and public agencies that they have gone to for assistance, and asked to rate them. Time and time again participants talked about the lack of understanding about brain injury.
Providers stated:
"I have not been aware of much training related to TBI especially employment issues."
"Educators, medical professionals and service providers need training in order to properly diagnose and treat individuals with brain injury."
The state agency questionnaires showed three agencies that served over 2 million Ohioans were unable to identify whether or not their service recipients have TBI. Most agencies that kept this data noted that the data was most likely incomplete.
Training and technical assistance components could assist agencies in developing screening tools to identify which of their recipients have a BI, and therefore improve the effectiveness of existing service interventions for those individuals. One provider noted, "We haven't consistently and systematically tracked TBI in our Behavioral Health system. A mechanism to do so (most likely through an Intake Form) should be implemented. Training to help assessment staff recognize signs and symptoms of TBI would be helpful in achieving this goal."
Until Ohio finds a way to fund brain injury services, the quality of life of individuals with brain injury and their families is unlikely to improve. While generic services can be improved, access and expertise will not significantly improve without a dedicated funding source for brain injury.
Several states have established dedicated funding sources for brain injury that has enabled the development of responsive and appropriate services for individuals with brain injury. In 2001, the National Conference of State Legislatures published Funding Traumatic Brain Injury Services, to assist states in identifying and evaluating funding sources to address the range of issues associated with TBI.
A dedicated funding source can, as it has in other states, leverage federal funding (such as home and community based waiver services for individuals with brain injury). Twenty (20) states have Medicaid waivers specifically for individuals with brain injury.
A dedicated funding source could also address gaps that occur in Medicare and private insurance. Michigan uses no fault insurance to pay for a broad array of services for individuals who sustain a TBI - but only if the individual is injured in a motor vehicle accident. Twenty one (21) states have established trust funds as a dedicated source for funding services for TBI, with good success and flexibility.
Below is a sampling of comments received:
"There are very few funding streams to support individuals with TBI occurring at age 22 or after."
"No-fault insurance would be a giant step forward."
"A dedicated funding stream for TBI programs, services and supports, beyond the current program line item in the State budget, would expand and enhance existing supports. A TBI Trust Fund might fit the bill. A TBI Waiver would help."
The Bureau of Worker's Compensation, which has dedicated funding available for injured workers, was the one system that showed the flexibility to meet the variety of needs faced by individuals with brain injury. One person noted, "I was fortunate to get workers comp that helped me. Some people don't have anything that can help them with bills - rehab, etc. They need support to get the help they need. So they have struggles recovering."
The lack of a dedicated funding mechanism for brain injury has had a detrimental impact on the availability of providers that are knowledgeable and experienced with brain injury. Several respondents noted that they had to go to other states to find a provider of brain injury services.
The following comments received from individuals and families underscore this point:
"Because there was no program suitable for my brain injury, so we had to go to a facility in Philadelphia, PA for 3 months for cognitive rehab. This was very emotionally hard because of the distance from home and a financial burden getting there for family members."
"Nothing was available in Ohio. He is physically OK, help stops there."
"We need some companies to run group homes for TBI. My son is now and has been living in Michigan ... because there is nothing in Ohio comparable. [The facility] said they couldn't even have a satellite in Ohio because there is no funding for TBI people. It's a shame he can't find services closer than 300 miles away from home."
"It is a shame that as a resident of Ohio my whole life, we had to go to another state for the care needed. PA has had facilities for over 20 years, so why not Ohio? It is a good thing that BWC was providing my care or the care I received in PA would not have even been an option."
A "home" agency for brain injury and a dedicated funding source should address the needs of all children and adults affected by brain injuries.
Services should not depend on whether the injury is due to trauma or not. A parent wrote, "What about those like my son with anoxia that may take long term and need to be with the right facility?" An individual with brain injury wrote, "TBI happens too many. But please do not feel my TBI doesn't count because it was from an infection. My thought processes and my life have been changed too."
Another significant barrier to the receipt of services in Ohio is the age of onset of a brain injury. Those individuals injured before the age of 22 may be eligible for county board of MRDD services because their disability might be considered a developmental disability. However, if the individual sustains their brain injury on their 22nd birthday - or any time thereafter - their options for services are significantly diminished. One individual wrote, "My brain injury occurred after the age of 22 so I don't qualify for the aid supplied to those whose injury was before the age of 22."
People with brain injuries and their families struggle to meet eligibility criteria and obtain supports through traditional disability service systems. One parent commented, "You call and no one calls you back, I talk with [agency] and 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. All I've found in ten years is a trail of paper and a piece of paper is not going to help my son." Another person told us, "[I] went through the entire process of [mental health agency] procedures only to find that the psychiatrist does not accept patients with diagnosis of TBI." Another commented, "It should not be so difficult to get housing assistance."
Development and coordination of specific services should be based on need, and should address not only individuals who live in poverty, but gaps in other coverage faced by those with moderate incomes as well.
According to the most recent data available from the U.S. Census, 11% of Ohio families with members with a disability live in poverty, whereas 6.6% of Ohio families without members with a disability live in poverty (Census 2000 Special Reports: Disability and American Families). Individuals with brain injuries and family members living in poverty provided comments. One person stated, "For those in the lower echelon of society services are just about non existent."
Another noted, "I was wandering lost till a television station aired my story and people who knew me came forward. With no money I was shuffled from agency to agency."
But middle income families are also financially squeezed, with significant out of pocket expenses that are not covered by insurance. American families with a householder with any disability earn only 83% ($51,914) of the median income of families with a householder without disability ($62,301), and families with a householder with a mental disability earn even less - only 74% ($46,248). American families raising children with any disability earn 77% ($38,332) of the median income for American families raising children without a disability ($50,098). (Census 2000 Special Reports: Disability and American Families)
Moderate income families believe it is inequitable that they have paid local, state and federal taxes but find they are eligible for few if any services following a brain injury.
Providers as well as families noted inequities. A provider wrote, "There is a shortfall for people who are cut off from BCMH and other public funding, but have private insurance that does not provide sufficient coverage." Another provider noted, "Most private insurance covers only a limited number of outpatient therapy visits/year. Often this is not sufficient for optimum recovery. For individuals with private insurance there are often no services in the home until Medicaid Waiver is in effect. This can be a long wait."
One family member summed up the situation "We are not wealthy, but are not destitute either. This mid-ground seems to be an additional roadblock to services."
As Ohio moves to address the needs of people with brain injury we must learn from the experience of these individuals and avoid the artificial barriers that so characterize the current system of services.
The following are some of the written responses from respondents:
"Please consider including for services individuals who have brain injury from ALL sources. People who have a brain injury from non-traumatic sources (meningitis, encephalitis, brain tumor, stroke, brain abscess, anoxic, e.g. lack of oxygen from heart failure) face similar challenges in the long term."
"I help several TBI folks who are poor and section 8. They are surrounded by drugs and those who take advantage of them. I call them the forgotten people."
"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!"
Ohio must begin to develop a system of services for individuals with brain injury and their families that:
The need for a system of services designed for individuals with brain injury is overwhelming in this Assessment. The evidence is found in all areas of the Assessment, from individuals and their families, from providers, and from state agencies. But the most powerful voices belong to those struggling to live without these services.
A parent wrote, "My son is in jail because I can't get the help he needs out here." A family member told us, "Improvements need to be made all over, as a home care giver, it would be awesome not to have to fight the system to get basic needs filled like nutritional and medical." Another respondent wrote, "The government needs to spend some money and time to help people with TBI injuries in living their lives in a meaningful manner." A person with brain injury wrote, "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."
An individual residing in a nursing facility wrote, "Need more group homes, more assisted living homes. Get me outa here - get me outta here before I go mad here."
Many respondents have ideas about services they need that are not readily available and often fall outside of any traditional service delivery system. The services rated as most needed by people with BI and families were supports that help people with everyday living. In particular, respondents noted the need for cognitive training (43% need); recreation and social opportunities (40% need); family counseling (39% need); behavioral supports (38% need); neuropsychology (37% need); individual counseling (35% need); case management (30% need); support groups (28% need), both peer and professionally run; more access to transportation (25% need); and legal assistance for their injuries (30% need).
Priority should be given to improving access to cognitive training, behavioral supports, individual and family counseling, and neuropsychology. These services must be tailored to meet the needs of individuals with brain injuries and their families.
Many respondents commented on the need for these services:
"please provide cognitive remediation and guidance counseling"
"... only being able to talk to a counselor once a month is not enough. I have mental confusion daily!"
"offer more rehab to patents with disorders so they can get back the fullest ability they can to live their lives."
"Outpatient neuropsychological evaluations are often denied by private insurance making long term recovery difficult."
"My nephew was released from the hospital with no follow up as far as therapies for his behavioral changes."
Responses to the survey indicated that services should not only be available during short term rehabilitation, but on a repeated or long term basis where needed. Comments received include:
"I had therapy for a while - let me have therapy again. I need therapy. I've been hit by my staff twice at the nursing home."
"Services such as physical and speech and occupational therapies should not be discontinued if the patient is not improving. They should continue to be allowed if they are maintaining the person's current level of mobility, health and speech."
"Cognitive training received right after my injury was helpful but insufficient."
"My son had excellent care in hospital and rehabilitation. Once home, outpatient care was very limited. Minimal number of visits, then everything stopped."
"The first two years after [his] accident we received very good medical and rehab services, but when that ends that is it. [He] could benefit by having someone work with him on memory and balance weekly even just council to help his anger."
Recreation and social activities was the second most needed service (40%) and should be given priority for funding. Some of the comments received were:
"Need more services for mental and social and physical outlets. TBI is a devastating state to be in, both for the caregiver and the victim."
"Have more structured groups and activities. Have more picnics, luncheons and activities."
"For someone with a serious TBI unable to work - there is nothing other than medical and wheelchair services. Some kind of recreation for BI."
Children and adults with BI often times must try to obtain services from existing and specialized systems of care such as MRDD, mental health, health, education and employment that are neither flexible nor provide meaningful choice. Needs and accommodations specific to their brain injuries often go unaddressed, resulting in many individuals not being served well, if at all. A provider wrote, "In our community there is a lack of services for individuals with TBI. As a result the individuals either are referred to geriatric services (nursing homes or assisted living) or agencies typically serving individuals with MR/DD."
Program flexibility can improve services and, in some instances, reduce costs. Individuals and families may be forced to accept a menu of services when all they really need is one or two services. Yet in order to maintain eligibility, they must accept all of the required services, even the ones they don't need. One respondent commented, "I sometimes wonder if it would not be better to give the care giver an account to pull monies from to pay for things needed for care instead of allowing them to be overcharged for it. For $6000 a month I know most families could care quite well for their TBI family members."
Services and supports received by individuals with brain injury are rarely individualized. A respondent wrote, "the uneven abilities of persons with brain injury are seldom recognized so people with them do not have their abilities developed when more serious disabilities are seen... treat people with TBI even more individually than others and do not assume disability is uniform across all behavioral areas." Another commented, "Each person process and healing is different. Each case should be treated individualized."
The current situation is exacerbated by a lack of choice. The lack of choice in selecting services and providers has produced a tragic result - the placement of individuals with brain injury in nursing homes.
Several individuals commented on this situation:
"Skilled care nursing facilities that provide rehab services for TBI patients post hospital stays DO NOT KNOW HOW TO HELP THEM! Treating TBI patients with recovery potential by placing them with Alzheimer's patients whose conditions are on progressively deteriorating compromises TBI patient recovery."
"... Cognitive problems are not handled well in a nursing home. They want to put you in a dementia unit, which is not right. How do you improve cognitively when those that surround you are mentally confused and you do not receive the right therapy. If you are physically doing ok, and you are not a mental patient, you are caught between a rock and a hard place. Too young to be in a nursing home. You need to be in a place that deals with cognitive issues specifically."
"We need more skilled facilities for TBI patients that are in between going home or understanding a rehab program or therapy so they do not end up in a nursing home at a young age with no restorative at all. Such as my son who first year was literally wasted, vegetating with geriatric patients instead of retraining his brain in a facility with all TBI and skilled professionals."
A parent noted, "People of all ages with brain injuries have no place to go except a nursing home where it is mostly elderly people. My son gets no therapy of any kind except what I give myself."
If individuals and families with BI are to fully utilize the services and supports, then those services must be flexible, individualized and provide the maximum choice for individuals and families.
Children and adults who sustain brain injuries are not the only persons affected by the injury. Any family member can have a range of emotions and reactions from being overwhelmed and exhausted, to adjustment, to grief, anger, helplessness or hopelessness. One parent wrote, "I never felt that any of the professionals really understood the depth of our loss and our grief. More compassion - training may be beneficial for professionals." Parents often find themselves having less time for typical siblings. Marriages can fray. Family members who are caregivers may not have the supports they need to care for their loved one, with the threat of out-of-home care looming.
A parent wrote, "I wish that aggressive counseling had been available in rehab for the extended family. Our extended family was great during the crisis, but things fell apart when our son returned home. They do not understand our son's emotional needs as a newly disabled teen." A respondent noted, "TBI is a life changing injury, not only for the person with it, but their family too. It takes a lot of patience, understanding, encouragement, and lessening of expectations of the injured person." A wife stated, "We need support for caregivers. Maybe some aid so I could take care of my husband better. It is very hard to work full time and take care of my husband's needs. I also can not afford any special services because I work."
A family member wrote, "Respite care for survivors and families would be most helpful if the cost is nominal to the family." A person with a BI who is a parent noted, "I think the worse thing was being discharged in 1 day and going through all the after affects at home. It would have helped if like a doctor or social worker someone would have helped the boys understand what to expect after a head injury."
Ohio can not forget aging family members who have ever increasing needs of their own. An individual with BI stated, "Need some place to live since my parents are in their 70's." One sibling wrote, "My brother has been cared for by my mom for 22 years. She recently passed away unexpectedly. It was difficult locating a nursing home/facility for a young man needing rehab & care but not wanting him to be surrounded by older people."
Families who provide care for individuals with a BI at home need support. No one wins when families are forced to place a loved one in an out-of-home care placement. Families are torn apart and out-of-home placements are almost always more expensive than supporting families who want their loved ones to remain at home.
In 2004, the average annual cost for out-of-home care for individuals with developmental disabilities was $126,017 at a state operated facility for 16 or more people; $64,463 at an ICF/MR facility for 16 or more people; $85,432 at a private ICF/MR facility for 15 or fewer people. However, the annual amount spent for those who receive Supported Living/Personal Assistance in their own, or shared home was $29,763. [Source: D Braddock, R Hemp, M Rizzolo, D Coulter, L Haffer, M Thompson; "State of the States in Developmental Disabilities: 2005"]
Individuals and families want a continuum of services and housing options, including for individuals needing long-term care. A respondent noted, "Need to help them get better places to live. And help them who receive SSI to get out of the slum living environment."
A provider stressed the need for appropriate housing, "No group homes or other placement possibilities when residents progress to the point of needing a less restrictive environment than a nursing home, but more restrictive than private home, or have no home to go to." Another provider noted a gap in services, "Limited independent living/housing options in the area for patients with TBI."
A parent stressed, "I find that there is no one to turn to for anything for my son who has TBI. Whether it be help with home therapy - accessibility to wheelchair help in my vehicle or nursing care to help out with [Son] or anything else. I need to know who I can reach to get services for my son with TBI. I feel all alone with no one to turn to for any service I need."
A respondent noted, "TBI supported housing is a main issue. There are group homes & supported living for MRDD in Ohio. Why is nothing like this available in Ohio for TBI?"
The lives of individuals who have a brain injury are dramatically changed - often in a moment's time. For children who sustain a brain injury there is a critical need for proper identification and development of appropriate educational supports. There is also a need for educators to understand more about brain injuries and the challenges faced by these students. One parent wrote, "My son was a very intelligent child. His brain injuries have changed all aspects of his life. People, schools are unfamiliar with how to treat TBI, especially in our situation. Education for me regarding available services for my child now and as an adult is something we need."
Identification and appropriate services are essential. A grandparent wrote, "Our grandson went undiagnosed for fifteen years, during this time struggling to learn in school and not knowing what was the reason for it." A respondent noted, "Train people better -- school districts are clueless."
Children and youth who have brain injuries should have individualized transition plans that build a strong bridge from school to work or post-secondary education. A parent noted, "There should be major educational supports within the school system to provide job training and to match individuals to interests and job opportunities...." Another parent noted, "schools are unfamiliar with how to treat TBI, especially in our situation.... Without all this testing, we would have been sunk in trying to get school services which has qualified my son for many other services."
Opportunities in regular and special education for children with brain injuries can be improved. A parent stated, "Our son was not able to return to his private school due to a lack of resources. The public school would not support his return to the private school. Our son lost his entire base of friends. This was very hard for him." A respondent urged, "Have children with TBI to stay in a regular classroom as much as possible. Keep TBI children with their peers and friends."
Providing supports in post high school settings (vocational and college) is also critical. A parent wrote, "My daughter has not reached college age yet, but I'm concerned about what support will be available for her in college with her learning disabilities. She has done well in high school with her IEP in place." One respondent wrote, "I went to college before, I need tutor so I can go back to school."
Beyond the fact that individuals with brain injuries should receive appropriate services, there is a business case to be made. When children with brain injuries receive a "free appropriate public education" as required by federal law they will grow into adults who can realize their fullest potential.
An encouraging response from a family member about collaboration that works stated, "The TBI collaborative out of [County] MRDD has done a great job of pulling together school district, rehab facilities and universities to help students and families facing a TBI."
Seven (7) state agencies reported funding or providing at least one service geared to employment. Yet the responses to the Needs Assessment found an extremely high - 70% - unemployment rate among adults with brain injuries of typical working age (ages 22 - 55) who lived in a home or apartment. Among the services received by those who responded to the survey the services of "help finding a job" and "help keeping a job" recorded the highest percentages of dissatisfaction, at nearly 50% dissatisfaction in both service categories.
Many individuals in this survey wanted to return to work but had not been able to because of employers' failure to provide reasonable accommodations or a lack of understanding about their injuries. A person with a BI wrote, "I successfully completed a professional paralegal program. The accomplishment meant something to me until professionals in the mental health field and legal field threw my accomplishment in the trash can because of my head injury."
Respondents encouraged administrators of public programs to better serve individuals with brain injuries looking for employment, education or training. One survey respondent wrote, "Vocational Rehabilitation needs to be uniquely planned for people with TBI. Too many victims are not served properly in redirecting them for employment." Another noted, "I continue to be disgusted that OPERS will revoke my disability status if I take part-time employment with an OPERS facility."
One respondent pleaded, "Please support me to help myself and others in gaining employment. Also schooling so we can better ourselves; to become productive citizens again. Please."
Many respondent comments reflect the desire to be doing something worthwhile:
"People need to be made aware that just because of a TBI doesn't mean a person can't do things."
"Need people to give you a chance at a good-paying job."
"Its just very hard to be around new people or places. Like starting a new job. People think you are just dumb because you don't remember. That's my hardest thing."
"Its hard finding a job I can do. I'm currently working part time but could use full time employment. I think we need more concentrated effort helping survivors finding work if they are employable."
As well as the loss of human dignity, each person with a brain injury who is undereducated, unemployed or underemployed costs families, communities and society as a whole lost income and potential.
One of the primary barriers faced by individuals with brain injury is the lack of transportation. Inability to obtain reliable and timely transportation impacts employment, access to services, and contributes to the isolation experienced by people with brain injury. One person commented, "I had to take Project Mainstream for several months. Late frequently. Had to ride numerous other places before getting to my destination. Legislators should have to take it. Perhaps it would improve." Another wrote, "Desperately need transportation. We need affordable transportation." A person in a large urban county wrote, "Transportation for persons who can't drive is still an issue even for those of us who live in [County]."
A provider noted, "For individuals with Medicaid insurance there is only transportation to medical appointments. For individuals with private insurance transportation is spotty to non-existent. Families find themselves suddenly without family transportation. Most families are not in a position to purchase a wheelchair-lift equipped van."
Although state agencies fund or provide a variety of different services, the results of the Needs Assessment show that there is very little focus on brain injury, and little expertise available to address the needs of brain injury survivors within their service systems. Several respondents commented on their experiences with government agencies. One respondent stated, "Local/government agencies, i.e. Social Security, Job and Family Services, do not respond well to someone that is in need of assistance due to TBI." Another told us, "To be honest we have found no support from statewide services - we tried [agency] but [he] got so frustrated trying just to make an appointment that he refuses to let me try again." Another suggested, "Send brain injury information to all helpers in MH agencies. Some know nothing about TBI!"
Several respondents offered suggestions. One respondent told us, "There should be more education about TBI, and services for treatment. For someone who has not dealt with TBI, including government service people need more education." Another wrote, "More support and understanding from community and government organizations for people with TBIs." Another person noted, "Education is a key factor in this so that people understand that the person is really unable to accomplish these tasks. They are NOT just lazy & they are forgetful for a very good reason. ALL SOCIAL SERVICE AGENCIES need to understand this."
There are currently eleven state agencies that sit on the Ohio Brain Injury Advisory Committee. It is recommended that each agency improve its responsiveness to individuals with brain injury. The following actions should be considered immediately:
If services are to improve for people with brain injury it will be necessary to build some expertise about brain injury within state government. Only four (4) of the state agencies surveyed had designated staff to work on brain injury issues, and only two of those agencies have any staff who work more than 50% of their time on brain injury. There is only a total of eight state employees in ten service agencies who work more than 50% of their time on brain injury and seven of those employees work at BWC. Neither of the agencies who have staff working more than 50% of the time on brain injury considered the amount of staff available to be adequate. Those agencies without any designated staff serve well over 2 million people annually.
It is recommended that state agencies that provide or fund services should establish a technical assistance team, either alone or in collaboration with other state agencies. These technical assistance teams should be available to advise the agencies local partners and providers in improving effective services to individuals with brain injury.
While most state agencies include a specific field in their data systems to capture whether or not the individual has a TBI, most agencies acknowledge that the data reported is incomplete at best. There are over 227,000 Ohioans living with long term disabilities as a result of brain injuries. Of the 2.8 million Ohioans receiving state funded services through the state agencies sampled, only .1% of those individuals are identified as having a traumatic brain injury (3,429 across all state agencies). Three state agencies do not even keep data on TBI, and those three agencies combined serve, or fund services for, more than 2 million Ohioans.
Most agencies would benefit from a screening tool that would assist them in identifying individuals who have entered or will be entering their systems and have a brain injury. At least one state agency has worked with a state university to develop a screening tool, but it has not yet been implemented.
The implementation of the recommendations contained in this report will markedly improve the day-to-day lives of individuals with brain injuries and their families. These recommendations, when fully implemented, will support the inclusion of individuals with BI in neighborhood schools, workplaces and local communities.
While Ohio has a long road ahead of it to create an efficient, cost-effective, coordinated continuum of services that supports flexibility, offers meaningful choice, and promotes ability, the task of implementing these recommendation must be undertaken. As one person wrote; "Ignoring the problem or saying it's fixed, won't make it go away. We are still here - all [us] want is to be dealt with fairly."