Respondents to the TBI Needs Assessment survey provided rich qualitative information. OLRS received comments on 3 out of 4 surveys (389 of the 522 surveys). Seventy-five percent of individuals with BI and their families had something to tell us.
The survey asked two questions: "Please tell people planning statewide services how to improve services and supports for Ohioans with brain injuries," and "Please tell us any other comments or ideas you have."
Note: Information that would identify individuals or places has been redacted to assure privacy and confidentiality.
What survey respondents said:
"I did not know of any help available."
"I don't know. We basically gave up long ago. Too difficult to get competent help and find out what I am entitled to."
"Make it easier to get help. It's like a private club and very hard to find."
"My brain injury occurred after the age of 22 so I don't qualify for the aid supplied to those whose injury before the age of 22."
"Less points of entry for services. Explain better what's out there."
"Where do you find services for helping make decisions in life, questions about things, health or medications?"
"Each county should produce a brochure describing with phone numbers available services for TBI victims and see that those who need the info get it."
"Make information for support, etc., more available to people, especially in a more rural areas of the state, far away from a major city where help and info is readily available."
"You can supply names of TBI doctors, counselors and organizations in emergency rooms AND give out these lists to patients and their families so they KNOW WHO TO CONTACT AFTER THE PATIENT HAS BEEN DIAGNOSED WITH TBI."
"Maybe by getting a toll free phone number that survivors of TBI can call when a problem comes up out of the blue, because only being able to talk to a counselor once a month is not enough. I have mental confusion daily!"
"Provide as much information concerning help that is needed for the person and their family and direct them to the people who can be of assistance. Advise them to educate themselves on TBI."
"Diagnosis of brain injuries need to improve. Many people have TBIs which do not show up on MRI's and other diagnostic tests. There is a neuropsychological exam but it takes 6 hours or more and may not be covered by insurance. After establishing the fact that there is indeed an injury, each person with TBI ought to have a medical person working with them each step of the way over a period of time. People with TBI are notorious for not following through with something like this. It's not because they don't want to. They simply forget."
"No information on dealing with stroke was given to us at all - I had to do all my own research on my own (my mother had the stroke). No medicines were offered to help - lack of communication from [Hospital] staff. No follow-up therapy was suggested by the doctors - the most helpful was the speech therapist at the hospital. Speech therapist at the nursing home spent very little time with mom, I have helped more with her verbal skills than they did."
"I was a high level medical professional and was treated like I was an aberrancy because I did not fit the mold. The continuum of care and communication doctor to doctor was vague."
"Provide as much information concerning help that is needed for the person and their family and direct them to the people who can be of assistance. Advise them to educate themselves on TBI. TBI is a life changing injury, not only for the person with it, but their family too."
"Don't think people know how to find the information they need. Make it easier to find out what kind of help is out there for TBI patients. Maybe a liaison at the hospitals!"
"Probably the best way to let someone know about the services available to them is to contact them before they leave the hospital. In my case, talking to me would have been like talking to a wall; I did not get my brain back until I was in [Rehabilitation Facility] for about 2 weeks. But they could have explained the situation to my son or daughter and they would have told me."
"Assistance is very slow - time could mean getting back on feet and returning to work. People in life threatening circumstances should be helped immediately. Let paper work come second. Paper work & recovery should take the same amount of time."
"I have tried for ten years to find a long term placement for my son so he could be on medicine for a long period of time and get the training and help he needs to live a normal life. You call and no one calls you back, I talk with [Name] 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. Paper trail will not help. TBI needs inpatient rehab and training to be a productive life, not a letter telling them they need help."
"Let them know services EXIST and HOW TO ACCESS them. This information should be provided at the hospital before discharge or transfer to Rehab!!!! My husband's injury was almost 4 years ago. We are both professionals and I work in social services, but getting information was something I had to do myself through hours and hours of research and internet searches. Many/most services are not available on a local basis."
"They need to have packet of services available to the person with TBI. I didn't know about choices until to late."
"Need a centralized area for information, services and support from infancy through adulthood. There should be major educational supports within the school system to provide job training and to match individuals to interests and job opportunities as well as assisted living situations."
"A need exists for TBI survivors to be able to obtain information and help more easily."
"Have services easier to find. Reduce paperwork and follow up. After 2 years - still trying to get electric wheelchair! She needs this to improve mobility and self reliance."
"We, "our family" are lucky. We ended up getting an Ohio Waiver. It's a battle, you battle with the case worker, you battle getting the home modifications, more hours to work, etc. The bottom line is that you don't have a life. Someone else is up there telling you when you can work, when you can vacation, etc. and it's not the good Lord. State Legislators don't have a clue, they don't even know of the programs for the disabled, ie: BCMH, and continue to class all people on Medicaid as poor."
"I don't have the time to attend a meeting being a single parent - maybe sending out information on what has been discussed at meetings. Possibly having small group discussions at individual's home that are more personal instead of a large group."
"Medicaid and food stamps are not enough. Professionals listen to my needs, but action is very slow. We are happy with our legal assistance but the process of applying for SSI is very slow (now about 1.5 year)."
"The state needs to make wheelchairs approved in less time for the patient, And any other equipment that is needed for the patient. It shouldn't take months for approval."
"Difficulties since 1999 when my sister came here included difficulties in finding what services were available here, where to go for help/advice, transportation is very limited. Companionship limited so there is loneliness. Now she is in bed, needing home health aides, for which we are paying."
"It's a learning experience, you learn the system and you decide: is it going to drown me or am I going to swim. We need to educate legislators, pray that they will "open their eyes & ears" to the needs of the disabled."
What survey respondents said:
"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."
"Take us serious. When people are healed on the outside we aren't on the inside. I am as stubborn as hell and I want me back dammit. Give people an ear 24 hours a day. I would help with that, we need it."
"The need to stop closing doors on us, and start looking at this situation like they are the one's with the injury. Be more supportive, understanding, and especially patient. We didn't ask to be this way."
"Please keep an open mind, be willing to understand what people with TBI go trough on a single day."
"Show how and where to receive help for TBI people. Please help TBI people."
"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."
"People with TBI are lost and are a silent type of disability, sometimes with few outward disability."
"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."
"The only services my son receives comes from the Department of Mental Retardation and Developmental Disabilities. This is not adequate, services need to be specifically for TBI. Need long term care facilities for those TBI individuals who have sustained severe injuries, not nursing homes, not group homes for mentally retarded, facilities who could provide the therapies long term to give the brain the opportunity to retrain, not in therapy for six weeks then dropped because you haven't shown improvement, this takes long time repetition but it can be done even for those severely injured. TBI people need specific services."
"Ohio needs a central service known to the medical profession to cope with TBI - most doctors are not focused or knowledgeable about TBI."
"The TBI Network we had has been discontinued due to budget cuts. I truly believe this cut has hindered my son's recovery. A network - all the doctors, psychologist, therapist, BVR, etc., worked together to get TBI survivors back into society. Many services are needed as the questionnaire shows. Also counselors need to be educated about TBI survivor's deficits so they can help. The public needs educated on the problem. This county has a desperate need for services!"
"We who don't "look like" we have TBI would be helped by having an official I.D. that can explain that we are disabled."
"I wish some people can visit us, when we have question, we can find right people to ask. Can we get Medicaid services soon? Long waiting list for apply waiver? Can we get more support for equipment like therapy type or home modification to improve kid growing up? Can TBI kid go to parks with a card that allow him by lower tickets or free, enter different park to learn outside. Can we get support for that? Thank you!! We need more support or professionals help or listen to us. [Son] is only 5 so some of the services he will need later like learning supports after high, medical and dental services when not covered by Mom's insurance, assistance getting and keeping a job, community skills training, etc."
"For home care support it is difficult to find people. For home modifications - we needed the services when person came home. Learning supports have been excellent. We are always looking for more cognitive training, OT/PT, medical services that address BI, and assistive technology. We could also use more transportation assistance."
"He was "fortunate" enough to sustain his injury before he turned 23 so he qualified for and gets services through CMR/DD. EVERY person with a brain injury should have support services like those he receives through CMR/DD. Also, social programs for survivors must be developed. He is not mentally retarded nor is he developmentally delayed so all the social programs CMR/DD has don't meet his needs for social interaction."
"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. As you go along they need to keep you updated on different services."
"I received no support thru many organizations in [City], OH and they did not assist us when my parents and I had no where else to turn financially, etc."
"Would love to have one central POC/case manager who would get to know [Name] and his capabilities and be able to coordinate other services for us. Also, as a caregiver, I could use socialization with those who share similar situations as I took an early retirement to care for my husband. Respite service would be most welcome. Believe that both of us need therapy to deal with the changes in our lives. This therapy needs to be designed for TBI victims and families. Without my care, my husband would require an assisted living facility. Years post accident his general physical and mental health have declined."
"I wasn't diagnosed until 9 years ago (26 years after injury) Being monitored by MRDD. I do not qualify for services. I don't meet OEDI criteria other than age. Many services I don't qualify for due to over income or functioning level such as Medicaid which would get my glasses and dental."
"Extremely difficult to find doctors or lawyers who understand and know about brain injury. Injured person needs help to find help. If you can't state your case you are out of luck and cannot get help. Require classes while in medical or legal school. Pass laws to help. Find ways to get doctors and lawyers to help. Seems they don't want to be bothered because they have to work harder on these cases and make less money."
"Went through the entire process of [Name] mental health procedures only to find that the psychiatrist does not accept patients with diagnosis of TBI."
"My nephew was released from the hospital with no follow up as far as therapies for his behavioral changes."
"It is a new way of life, you can help but your still brain injured. The people who help should know more about head injured people. It's nice to know the medical stuff but the only one who understands a head injury survivor is another head injury survivor. There is a connection and we all understand this."
"Tell them how they can get the help they need. Help them get it. Offer more help to the person and family members. Make resources more available to the public that's in need of the services. Educate doctors to refer their patients to specialists they need to help them. Offer more rehab to patients with disorders so they can get back the fullest ability they can to live their lives. My son is now 3 yrs. old. I see a neurologist, but no one ever told me about the doctors that work with people that have brain damage. He needs to work with someone that can help him, and maybe give us more than 'I don't know' all the time. I've had a hard time getting therapies for my son. It's taken me a year and he's still not in the school I've been signed up with."
"Often Drs. are unsure of ways to help. Neurologists have been specially difficult to deal with. Currently looking for a neurologist who specializes in brain trauma."
"Get a database of TBI people - get doctors to catch up on services and programs available - especially new treatments for older cases. [County] is very slow in providing services and programs. They don't realize how many TBI people could use them."
"The brain injury person needs a support system like MRDD. This system should cover from injury to long term or life time. Doctors need to inform brain injured persons that they are brain injured and be able to point these persons to a support system that will help them and their families."
"Form a group or list of suppliers (i.e. medical, durable medical equipment, home modifications, transportation, modifications) that will not overcharge or at the least are reputable and stand behind their product or service."
"Need more funding of the Brain Injury Association of OH to conduct the community support system in place and needing funds to continue. Need a support system similar to the MRDD program."
"Keep the ones you have and start new ones. Ignoring the problem or saying its fixed won't make it go away. We are still here - all us want is to be dealt with fairly."
"Resources and Information is better . . . TBI educated/public agency workers? I would be lost without someone to put all the paperwork in order. Our outreach services was started by us (a continuation of our already established parent advocacy for family w/ disabilities). A "Helping Hand" and one-on-one organizational help is desperately needed by many of us with mild TBI. Some of us who are competent and capable of higher education still need daily help getting legalities and papers in order!"
"Keep in touch with outreach and advocates for TBI recipients of services. Medical communities are oblivious to TBI and sensitivities and to medications, etc. They don't have time to explore options or help you find solutions to emotional as well as physical problems that are not the mainstream."
What survey respondents said:
"We need assistance AT HOME, community based services to help us with things like organizing our houses to be less fatiguing, learning to cook in our kitchens, learning to take a bus, etc., I get the above because my family makes a financial sacrifice to pay for it. Without those services I would be in an assisted living facility."
"I need to perform basic tasks in and around people that can understand what I dealing with because the TBI person can not put it together themselves to get the help. I only know I need it."
"Talk to/communicate with each individual with TBI. Determine each one's individual needs. Some don't need a lot of help, others do. I, for one, am ambulatory, but no $, no car, so no job and no money. I don't deserve half the crap life gives me, especially from other "humans"."
"Have children with TBI to stay in a regular classroom as much as possible. Keep TBI children with their peers and friends. [Educator] has given me so much information and support. She is so knowledgeable. She is great."
"Pay attention and listen to them, don't feel sorry for them or baby them. TBI classes should be lead by people with TBI. Let them speak, they have experienced head injury. They are experiencing the trials and error of living as a TBI. Let us hear from them on how they have to learn to live with their disabilities."
"Needed immediate services. I did not recall current times for over 30 days. I did not find out about services till after 30 (thirty years) after accident."
"Get politicians out of service provision decisions and involve grass roots providers - what I need is very different than someone in perhaps Cleveland."
"Need help to control temper - shortened fuse - frustration with changes; legal services; find more qualified and compassionate personnel who work with those of us with TBI."
"There is a need for more local neurophycology services and TBI support group locations. My mother has recovered better than we expected. She is very self sufficient and independent. She experiences depression frequently. We would like to see more specialty services for this in [County]."
"This person was in special education until he finally quit school at 16. Now he has an extensive criminal record, some offenses more serious than others. He's at [Corrections Facility] for around four years - his second incarceration in less than 5 years."
"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' current level of mobility, health and speech."
"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. Some may take long term and need to be with the right facility. Luckily we have found such a facility. There for 4 months - has already improved."
"Need specialized/multidisciplined services upon returning home. Too many individual services are cumbersome. Independent young people need casemanagement to enable them to keep appointments and not get lost in the system."
"He has been in short term individual therapy which was basically offered to get me off their backs, but which had no thought or follow up. Nothing was available in Ohio. Drug abuse has been a huge influence on his life. He is physically OK, help stops there."
"We may be a small community but we have no real help. I keep falling through the cracks of the system. That is not fair."
"Occasionally in dealing with medical professionals, I don't think they always take into account the TBI as a source of medical attention, or of special needs."
"Need community services. Financial assistance for community services."
"Need to improve on respite care providers and activities through county funding or state funding for school age children."
"Send brain injury information to all helpers in MH agencies. Some know nothing about TBI!"
"Each person process and healing is different. Each case should be treated individualized."
"Make service available for people. I have received no type of service or therapy for this."
"My house's H2O pipe froze and the ceilings collapsed. This was the worst for me as BI to deal w/ insurance company, etc., replace furniture, and keep abreast of finances. I NEEDED HELP THEN. Doing it all alone was the worst. Are there agencies, etc for help with people when disaster strikes?"
"Support services available given immediately when in hospital - support immediately for caregiver. We still are falling through cracks and struggling."
"I received rehabilitation at [Rehabilitation 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."
"We had to take her out of a terrible nursing home that tried to control her sleeplessness and violent outburst with drugs contraindicated for people with TBI and take care of her at home. We took care of her in her own home for 3 months so she could regain as much of her functioning as was possible in a familiar environment. I don't believe that I know how to improve services for others with TBI. Because of my mother's advanced age, and her existing dementia, I had to fight with every facility, service provider to insist that the symptoms were due to her TBI and not preexisting."
"Persons with brain injury include people with epilepsy, cerebral palsy, and cognitive disorders including mental retardation ... 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."
"I think people should be more aware of a TBI, and the damage that it causes. My doctors have not permitted me to start working again, so I have no income. I have been trying to receive my SSI until I can earn my own income, but have not been approved for it. They think that I am able to work, because I can understand sentences. They do not understand that I may be fine one minute, and the next minute be totally lost and confused. If it was not for my parents, I do not know where I would be right now, or how I would be getting along."
"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. Further, SCN personnel see TBI persons as trouble makers when they act out their confusion and treat them with drugs that interfere with and/or delay recovery. As our population ages and technology assures that people who experience heart attack and stoke survive, the flood gates of TBI in the older age range will continue to increase."
"Preparation for potential employment; both physical and cognitive. My particular conditions may be unique, but all TBI survivors have a similar and unique situation. I was happy to find out the local Bureau of Vocational Rehabilitation would help to pay for my college fees. Once I graduated, I have been unable to get a job, or to be able to physically perform at the job when I worked there."
"There should be some standardized way of assessing head injury. I was sent home from ER because I looked ok and could walk out. I deteriorated for the next 2 days and was told I'd be fine. I never was fine."
"My brother is very bored and now has taken up drinking. He is in need of desperate help. I need assistance on what to do with him."
"There really isn't a place (or very many) for people whose TBI happens after age 21. For severe damage the clients have no place to go. Many would do well in a MRDD facility but are not allowed. Most nursing homes haven't the ability nor the desire to care for severe TBI people Too bad clients cannot be accepted into an MRDD facility where they can get therapy, training, etc."
"Make service available for people. I have received no type of service or therapy for this."
"It took me a while to find out any support even existed, and then it took a while to get some information because the offices are understaffed. Meanwhile, I'm worried and stressed that there is no help for me. People just don't understand how brain injury affects your life."
"Need to offer services more readily in rural areas. TBI occurs EVERYWHERE, not just large metro areas."
"We wish there were more slots available for support services in our [rural] county. I have been on waiting lists for several years."
"There is little help for the person who looks ok, can still drive a car, but accident has changed who they are, how they live, what a person has to give up."
"Serious problem finding dependable and qualified home health aid/respite care (possibly due to low pay and stress of job.)"
"Retain "in home" care. Therapy, preferably in home, could be ongoing. Recommendations for modifications would be helpful. Son's injury is comprehensive - he is fully dependent, in wheelchair. Mostly needs good in-home care."
"From what I have discovered it is very difficult to receive any help if you are a single male. I haven't found anything that I qualify for ... maybe I'm just looking in the wrong places."
What survey respondents said:
"We need more funding of the basic everyday needs of these individuals - they lose their friends as well as job opportunities and can't afford to hire assistance with transportation, social events, social interaction, shopping, laundry, medical home care, housekeeping, personal grooming (cleaning glasses, haircuts, nail trimming, drops in ears or eyes) and more available recreation facilities affordable, safe living arrangements. Their cognitive abilities are often very impaired and they often don't even realize their inabilities as to thinking and figuring out the correct or best way of achieving their desires or needs."
"According to the state of Ohio my brother would not need nursing home care. They term his care custodial. CUSTODIAL! Well let's define the word custodial. According to Webster online it means seeking to watch over and protect instead of cure. How does that apply to all this? People like my brother are incurable! With out someone to watch over them and protect them they have to go to nursing homes. Who ever came up defined the intermediary care for the state of Ohio should care for someone like my brother. Let them see how custodial it is to have a grown person who you must be totally responsible for, do everything for! As technology has advanced medical science has a greater ability to keep head injury victims alive. We need to make provisions to see to it that people like my brother are able to have as good a quality of life as possible."
"Therapy should be paid per patient not a number of set paid therapies. We have to sacrifice speech therapy for physical therapy. So she will walk again. Speech is okay but still needs the service - only allotted amount of therapies."
"It took a year of doctor hunting to find one tha
t would listen to my needs. I only have a choice among meaningful supports now because of my spouse's new health insurance.""We need more therapists available. We could not schedule enough ST due to a ST shortage in our area. We need more male therapists and social workers who can relate better to male teenage patients. MRDD needs more funding for their waiver programs. Right now we are on an Ohio Home Care Waiver, but our son may not meet their criteria upon annual review. We need more community social groups to help socialization needs."
"The waiver services for respite care are a life saver for us. We were able to seek college age males to be hired as Independent Providers. Without this, my son would have totally shut-down on life."
"Please do not do anything for me, without me."
"Need competition between providers - services tend to be VERY SUBSTANDARD when competition is eliminated. Need a way to get word of mouth recommendations for providers - good/bad/ugly. Need a Clearinghouse in simple language."
"SSDI is not enough! Buys own food, or parent helps. Does not receive Food Stamps or Meals On Wheels. Housework done by mother, 80 years old. A matched live-in would be of help if they get along. Clean house and a little cooking. Is there any way for help with dental and therapies? Needs anger management and help with prescription drugs. Afraid of Medicaid - they take your home. Has car - no freeway driving - just close to home for gas and groceries. Get help with HEAP, gas co., phone, and WOW TV."
"Less politics involved with groups "helping" those with brain injuries. My local epilepsy group provides more professional help than the brain injury groups."
What survey respondents said:
"Need people to give you a chance at a good-paying job. Need companies and employers to understand what a brain injured person has and continues to go thru."
"Speak to the injured's occupation bosses about letting them recover in time."
"My injury was 32 years ago. 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. I worked for Manpower and fortunately was put on payroll. I had no idea of where to look or how to go about finding employment to suit my needs. Its very difficult if you don't know where you can look."
"They all gave up on me. Said I was Un-employable. I used to lead a crew ... I can't do this anymore. I can't read the blueprints. I tried. I lost everything. I had a family, now my own kids don't trust me! I never have any extra money for my girls."
"Need an advocate assigned to head trauma individuals - [Name] has had poor job coaching and found a pizza delivery job himself."
"I have advanced educational degrees but now unable to do anything."
"Vocational Rehabilitation needs to be uniquely planned for people with TBI. Too many victims are not served properly in redirecting them for employment. We need to have more involvement from all sources here in Southeast."
"Make the workers comp self insured companies accountable for their bad ethics and treatment of injured workers. Falls are a big part of this so simple guides for prevention, safe work and home spaces. *prevention best medicine.*"
"Any agency that worked with [Name] wanted him to do job training at a sheltered workshop - he didn't like being at a sheltered workshop and would become uncooperative - he has been deemed unemployable."
"Tried BVR several times and it did not work out. Never had a job from BVR."
"Abolish RSC (BDD, BVR) and automatically adopt treating professionals' opinion on disabled status. Take BVR funds and directly grant those pro rata to people with disabilities - no more spending 90% on a fraudulent government bureaucracy and nothing of substance going to people with disabilities."
"Not to use RSC because they allow the disabled population to fall through their cracks. RSC only help the disabled make an average of $8.77 by forcing them to work at low level menial jobs not befitting their degrees earned after their injuries. Other organizations or foundations need to give RSC a run for their grant money and monies matched."
"BVR could help more (they told me what they viewed as "stumbling block" but were lacking in corrective behaviors.)"
"BVR takes forever to open a case again. My place of employment closed and I have no job history to fall back on having worked out of state. No offer from BVR for transitional employment."
"I've had to search in Ohio for help and the only thing I could find was BVR and the Dr. will not release me to work because I need all the basic stuff. I went to college before, I need tutor so I can go back to school."
"Help people understand our needs and help get us better jobs."
"I continue to be disgusted that OPERS will revoke my disability status if I take part-time employment with an OPERS facility. As a retired public employee who is able to do part-time work, this is a disappointment."
"BVR needs to understand that just because you had a degree prior to a TBI that it doesn't mean that degree is going to be of any help to you post-TBI. I was a lawyer at the time of my TBI. My law degree is useless to me now. It is time to revamp the state's voc rehab services. We are spending millions, yet the people who need it most are not benefiting from it. BVR will spend thousands to determine your disability and vocational potential, then when it comes to putting you in a suitable vocational plan, it is put in writing and that's about the end of it."
"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."
"We need help in returning to work gradually."
"For those that can and want to work, need service to help find appropriate job."
"There should be some place we could work or donate our time."
"Please support me to help myself and others in gaining employment. Also schooling so we can better ourselves; to become productive citizens again. Please."
"Finding an attorney to assist in getting from the company who fired him to provide long term disability that he should be getting instead of firing him for inability to do his job."
"Please inform employers about TBI so they can better handle these situations. I had a terrible time with my job and my employer didn't know how to handle my problems and made many mistakes. My employer wanted to have me sign a contract to resign my position. They kept me employed for five months until I achieved my 25 yr retirement eligibility. I wouldn't sign it & they layed me off with no pay for 4 or 5 months until my involuntary disability separation was approved."
"Develop a way that special people like myself do not get discriminated against their physical limitations, so they may return to work."
"Work is important - I volunteer."
"After our injuries and our rehabilitation, we are often left unable to work. We have no purpose, direction and nothing to do with our time. This needs addressed."
"I had a job I loved very much! But I was made fun of. I was called names. I went to the supervisor and she said I can't help how people treat you! It got worse after I said something. I had no one to go to for help to stop this - NO ONE!"
"My brain injury has made it impossible for me to perform any of the jobs that have been presented to me. I am working about 6 hours every Sunday as custodian (no other paid work)."
"Need something different from transitional workshops for employment activities."
"I do feel [Child] will need help finding a job after high school."
"Need job training for brain injured people."
What survey respondents said:
"I've been trying to sign my son up for a waiver for a year or more to get some help for him. He's still not because they say they're too full. They haven't even put him on a waiting list. I have one question - why not, why will no one help us? He's just a little boy with his whole life ahead of him. They should help him get back what he can instead of holding him back."
"Make it easier to get benefits such as SSI and Medicaid. My brother was severely injured in Sept. 2004 and is still waiting to receive any type of financial assistance."
"If I had not been educated as an R.N. and did not want to live in disease and pestilence I doubt I would have made it plus had teenage sons."
"Need readily affordable health insurance for self and family."
"Need money to survive."
"My wife works but we could use extra grocery money. I could use help with medicines."
"Please help us understand Medicare drug plan/Medicaid changes starting 2006. We are really confused with $5 copays and unable to pay them."
"As I understand it the waiver program was set up to help allow people to live at home instead of in nursing homes. According to the state of Ohio people like my brother who are able to do the ADLS, WHEN THEY ARE PROMPTED TO DO SO, are not eligible for the type of waiver program I am trying to get him into. It does not matter that he can't do much of anything else for himself. It does not matter that most of the time he can not remember what he had for lunch an hour after lunch. It does not matter that someone has to get him to the doctor to get prescription, pick up his prescription, take his medication to him three times a day and stand by his side to be sure that he takes them right then. And so on."
"Allow me to get some support. I have been denied SSDI, SSI, Medicaid, and food stamps. I do not receive any help. I'm really not sure what all you can do, because I don't know all the county, state, and federal laws. All I know is that I need assistance, but don't receive any."
"If I wanted to get married - I can't! Because of my brain injury my Medicaid and SSI would be stopped. I wouldn't have any money or Dr. visits or Medicaid medications!"
"We need a federal home care supports program which covers all individuals whether they are employed or not. That type of services should not be based on medical need only."
"BCMH medical coverage process is complicated due to the tie in with Medicaid."
"Cheaper supplement insurance to go along with Medicare offered by the government, instead of the outrageous payments of supplement insurance from private insurance companies - to keep people like me off of possibly Medicaid."
"Social security disability needs to be revised. [Name] was declined because he could still stand up basically. What most people don't understand is your brain can take up to 3 or more years to heal. [He] tells me that he was in a "fog" for at least a year. He also doesn't remember a lot about his life. Not a wonderful place to be when you have a loving wife and children."
"Make it more probable for them to get assistance and medical benefits."
"Those of us who can get better enough to function or look like we are functioning ... I still don't know how to do well with the money issues."
"Offer other options for settlement money so it can be invested in more than a savings so that it can grow interest faster to be used when child is older and needs schooling/college."
"Stop denying people with brain injuries SSI or SSD because of age. I am 48 years old, I've working since the age 17, paying in Social Security fund for 31 years. Now that I have this TBI they turn me down three times. We need housing now cause we are being evicted. My doctors sent all of my test results to the SSI folks!"
"Took 2 years to get budget assistance and it just started this week!"
"Have Medicaid but they don't pay for anything."
"They (Medicaid) are cutting our dental and vision benefits. I don't think that's very fair considering most of us only receive a very limited amount of SSI every month. There's going to be a bunch of blind toothless gimped up people walking and wheeling around."
"Let them try to give more information to someone like me about getting help with their SSI and Medicaid information. Would like someone to give me information on how to get my disability. Believe may be entitled to some help thru disability - do not have any - please send me information."
"I think more services should accept Medicaid. I do not have an income so I have to use my Medicaid card to pay for certain purchases. I have to call around to numerous places to see who accepts Medicaid, and that can be quite aggravating at times. I do not have dental services because many places do not accept Medicaid or only accept so many Medicaid clients."
"To be honest we have found no support from statewide services - we tried Bureau for Sight Vocational Rehab but [Name] got so frustrated trying just to make an appointment that he refuses to let me try again. We have never before worked with such an unprofessional, inefficient organization before. We do not know where to turn for any support or help - it just doesn't seem to be out there. What a shame when [he] is so young with so much still to offer."
"Need individual help with filing paperwork for Medicare and other social services and insurance forms."
"I applied for Social Security Disability after my injury and have still not had a hearing after two years. I have an attorney and my records are clear from my doctor that I can not work, however, it is taking forever. In that time I have continued to go further and further in debt. I wish there were some faster track ways to get through the red tape. Also I lost my medical coverage after my COBRA expired. It cost $700 per month and could not convert to private. To get a policy now would be $1300 per month which is not possible. I fall though the cracks because I make too much for Medicaid, yet I can not pay my bills. I can't get Medicare until SSDI is approved. Seems so unfair. I worked my whole life and paid into the system, and now can't get any help."
"Allow me to get some support. I have been denied SSDI, SSI, Medicaid, and food stamps. I do not receive any help. I'm really not sure what all you can do, because I don't know all the county, state, and federal laws. All I know is that I need assistance, but don't receive any."
"As I understand it the waiver program was set up to help allow people to live at him instead of in nursing homes. According to the state of Ohio people like my brother who are able to do the ADLS, WHEN THEY ARE PROMPTED TO DO SO, are not eligible for the type of waiver program I am trying to get him into. It does not matter that he can't do much of anything else for himself. It does not matter that most of the time he can not remember what he had for lunch an hour after lunch. It does not matter that someone has to get him to the doctor to get prescription, pick up his prescription, take his medication to him three times a day and stand by his side to be sure that he takes them right then. And so on. According to the state of Ohio my brother would not need nursing home care. They term his care custodial. CUSTODIAL!"
"Please make services available to ALL - regardless of injury severity. Try to eliminate "red tape" with many organizations - SS, legal Aid, Job and Family Services, etc."
"The federal government needs to figure out a way to assist veterans as soon as it happens - always a lot of red tape!!! Don't make a person seem like they are crazy just because they figure out how "our" system really works!"
"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."
"SSI, Medicare, Medicaid should never be altered if disability has been confirmed by necessary doctor and that person tries to move along with their altered life due to disability."
What survey respondents said:
"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."
"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."
"Try to maintain medical support. This family needs counseling support regarding raising children in this situation, also in views of trust."
"I am trying to get my brother a program. The one that will allow me to work for an agency and get paid to care for him at least part time. I am 52 and it is getting too hard for me to work full time and care for my brother. In the past we have had other people from agencies come in to our home and assist us with ill family members. We are not willing to go through that again. Each time we tried it, despite assurances that "things are monitored very carefully" our experiences were very negative!!! My brother can dress himself if given his clothing; feed himself if given food; and bath himself if given soap, towels, etc; but he can not handle his own medication; cook his own meals; do his own laundry; organize his daily activities; do his own shopping; or much of anything that requires memory, time awareness or motivation."
"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. We are fortunate to have great health insurance and fantastic caregivers (doctors and nurses) who led us in the right direction to get long-term psych care through testing for our child. Without all this testing, we would have been sunk in trying to get school services which has qualified my son for many other services."
"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."
"I think the caregivers need more support, financially and with therapy."
"Respite care for emotional needs of caregivers."
"Respite care for survivors and families would be most helpful if the cost is nominal to the family."
"Parent with TBI children do need a break from them at times."
"Much improvement is needed!!! [Name] life has totally changed, along with our family life. Depression is a major problem and a lot of doctors do not know how to handle the problem."
"Need family counseling service."
"I live with my parents, because no one else is assisting me in finding other lodging. We call upon my brother occasionally for respite care but this is not frequently available. Parents have urged me to belong to a TBI group, but I feel uncomfortable with these people, so I don't attend. Probably I need."
"The first two years after [son's] accident we received very good medical and rehab services, but when that ends that is it. [Son] could benefit by having someone work with him on memory and balance weekly even just counsel to help his anger. However, if someone just takes him once and awhile it is a great relief. Long term doesn't seem to have much to offer him."
"My mother had to go into a nursing home because there were not enough family and community supports. It was impossible to get enough respite care for the primary care giver - several hours every day including weekends. It was impossible for our family to manage with only one primary care giver."
"Need different programs for the families, spouse, even kids to attend, to deal with this. Understand how to cope with this."
"As a spouse of a "high functioning" brain injured person, I have to battle every organization who is supposed to help! The VA, Medicare and mental health services are not helping with coordinating services and support. I want help NOT constant delay, warfare, and struggle to get services and treatment. There are no coordinated services for high functioning brain injured trying to live independently. There is little support for families of adult, brain injured, high functioning persons."
"Help families call and make appointments for counseling as the trauma is happening and shortly after."
"Need counseling for family to ease stress and better serve survivor."
"Care person should be paid."
"Communicate with families on what services are available. Help financially with house modifications (ramps, etc.) If any or all the above services become available to Ohioans, a representative should come to our home to discuss our needs."
What survey respondents said:
"Our son lost all his friends after he was disabled."
"I need my old life back."
"My son had excellent care in hospital and rehabilitation. Once home, outpatient care was very limited. Minimal number of visits, then everything stopped."
"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."
"It would be extremely helpful if a TBI patient were linked with a professional/SSA/case manager in their home area BEFORE release from the hospital. Should have someone who is following up with the individual AND the Family to help guide them, make them aware of services available and how to access."
"I feel that when you are discharged from a hospital they kinda send you on your own with no guidance as to support or counseling to follow up with. There should be a plan made for people with TBIs to follow so they can receive help after they are released instead of being alone and doing it yourself."
"I have no health coverage other than prescription card for my prescriptions. Only one that helps me is my husband and sons. I had to plead for a lighter wheelchair and still can't run it because I need an electric one where I push I can only use my right hand so it is useless. It bothers me not being able to drive my car or be able to go shopping myself. I feel I'm a burden on everyone. If only I can get some help - I can't always depend on my sons. They both work. Not only do they work but they have their own lives ... I don't like feeling sorry for myself. I know that there are others worse off than me. I'm lucky I guess to have my husband and sons to help me. I just am not use to being unable to do things. I'm use to doing it all myself. I feel so hopeless and HELPLESS. I keep falling."
"Give more information while patient is in hospital after injury- Where to go to get different help. Make penalties more severe for the person who causes these injuries."
"Give counseling right in the hospital to let people know how their life may be affected."
"When I was injured the only thing I was told is I'd have memory problems and severe arthritis as result of accident, but never sent anywhere to help me through this haze I've been living in for years until last year when I went into [Offices]."
"The process of getting referrals for the appropriate services was very slow or non existent. If I had not contacted the Brain Injury Association, I would never have gotten the appropriate care for my mother. My mother's injuries were so severe that she was discharged to hospice care after she came out of coma so no discharge planning or rehab planning was ever done. It took a couple of months after her hospital discharge to find anything close to appropriate in rehabilitation. The rehab centers were filled with violent young men - no places for an elderly woman; we never had a case manager; we had to learn about a physiatrist and neuropsychological assessment from the Brain Injury Association."
"Take them aside and advice them of areas they will have difficulties in. I have never been informed of my areas of injury that will affect my employment opportunities. Not familiar with my injury."
"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."
"Change the guardianship law in the state of Ohio so that guardianship after TBI is based on individual's ability in their home. Not what someone thinks in an office situation (ie doctor, psychologist) require that information be provided to TBI patients - not kept from them as they gain back their mental abilities."
"This TBI was the worst thing that ever happened to me, yet it's the best thing that ever happened to me. Life sucks in so many ways, but I think of this as a stumbling block. It's up to me to move on with life. You can not stop me with this event!"
"I'm finally realizing that I am still intelligent! When people take the time to become acquainted - as well as "accepting" its a good day."
"Help with reentry to social situations."
"Be patient with the TBI person and listen to them without interruption and let them finish their thoughts."
"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."
"I became really simple, unable to tolerate information presenting what I could no longer do. I am fortunate I can walk but I could no longer perform on the same level intellectually or physically."
"I need someone to tell me what kind of brain damage I have before I kill myself, cause I hate life! I just want to know what is wrong with me - is there any help out there?"
"Individuals who've suffered (endured) TBI - as well as physical disabilities are entitled to genuine compassion. As well as respect for what we've endured. "I am not the girl I was" but I'm not stupid either."
"Teach acceptance of big loss to life situation by telling how to afford & not go in debt as soon as possible."
"It's the worst thing that has happened; yet, it's the best thing that has ever happened. I have changed my outlook to this and now take it on as a challenge. In between my frequent tears, I have to stay positive."
"Do not give up on all pertinent rehab therapies just because you think he's never going to get better and return to work. Therapy is needed just to maintain whatever quality of life you are left with. When my son was hurt they didn't know what to do with him when he lived. Negativism was rampant in almost every field of medicine. 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 still getting small improvements."
"Social skill need to be honed around the disability that the person is left to deal with for the rest of the person's life."
"People doubt what you say. Especially how and why my "so called" accident happened. Just realize that we are a little different than we used to be, and accept us as such."
"Encourage wife's or husband to stay together because the injury was not that persons fault. Stop divorce from happening because they need not to be alone and need to be loved again."
What survey respondents said:
"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. Professionals need to coach extended family on how to help us - we had no help when we got home from the hospital."
"There should be more education about TBI, and services for treatment. Someone who has not dealt with TBI, including government service people, needs more education."
"Docs need better training in dealing with BI patients. I include written note re: BI in each form needed to visit a physician for the 1st time. Later I discuss my needs re BI. I get sick of having to do this!"
"I need resources in [County]. They are very hard to find and unfortunately, the doctors I have seen seem to not care and not be very helpful. They don't even know where to send me. I am very alone and do not have the mental capacity to help myself as quickly as necessary."
"County offers VERY little in regard to TBI survivors. They treat people with a lack of professionalism or sympathy. As a parent of a TBI, it has drained our family emotionally. Counseling is provided at [agency] - but consists mainly of medicating my son. There is a need for specially trained counselors who focus on the emotional and social needs of a TBI victim. My son is quite isolated - He needs to socialize more."
"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. Cities to have community forums in conjunction with the Brain Injury support groups. This meeting should be mandatory for those individuals working in capacities that process claims and make decisions on who is qualified. This is an important aspect for those that can't have legal representation."
"Stress checking for brain injury with every head trauma. Our grandson went undiagnosed for fifteen years, during this time struggling to learn in school and not knowing what was the reason for it."
"Teach ER personnel to treat closed head injuries as possible critical situations. Teach hospital personnel what to look for in Closed TBIs instead of sending patient home as post concussion syndrome, etc. Need better training on closed head injuries for EMTs and ER Personnel."
"Make information available to primary care physicians who can provide information to parents."
"Many doctors do not hear or understand the problems with brain injury - more support with medical facilities."
"Few social workers or medical professionals seemed at all familiar with TBI. There needs to be an awareness or education of TBI."
"TBI education to local doctors would be helpful with listings of updated resources for services."
"There is a lack of knowledge within the medical profession, neuropsychologists, and rehabilitation services and vocational rehab in Ohio regarding treating people with subtle brain injury or mild traumatic brain injury. I have had to seek help out of state to get proper diagnosis and treatment."
"Train doctors & hospitals on TBI & where/when to refer for treatment."
"Physicians need training of services available to help their patients, and injured person needs to be told about services and not sent to mental health only."
"Train people better - school districts are clueless."
"We have been fighting ... for 2 1/2 yrs while my husband is getting worse. Has been in Jail for domestic violence. I asked the police to take him to hospital but they said he committed a crime. They must listen to the caretakers. After lots of fines and court cost plus probation and hiring an attorney. He was put in hospital. This should not be."
"Educating hospital staff as to the programs available, initially we got little help. It wasn't until we went to a larger hospital that we really received the services available to us."
"Insurers and physician reviewers for insurance coverage are entirely uninformed as to the recovery and corresponding therapy time frames to enable individuals who suffer TBI to return to productive living as independent individuals."
"Educate medical providers, medical insurance reviewers, hospital and nursing home staff, decision makers as to the potential for recovery of TBI patients and how they differ from individuals with progressively degenerative conditions."
"Insist on TBI education for educators, especially on missed developmental milestones during adolescence, and ways to support and teach strategies to TBI students."
"Some areas of my brain injury are mild. Some are severe to profound. Attorneys have told me there is nothing wrong with me that I just refuse to take responsibility for myself. I consider this abuse of a client. Since when did attorneys have a Ph.D. in Neuropsychology?"
What survey respondents said:
"I had a stroke. I don't speak well or have good balance. I wish people didn't act like I was brain dead."
"Do ads that make people more tolerant if someone is slower than normal. A lot of times I may repeat myself 3 times or more. People need to be more patient."
"It's 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."
"Something needs to be done to abolish ALL social stigmas regarding TBI."
"Help them understand TBI is real and we do our best!!!"
"Need education for our state legislators on the incidence and needs of survivors of TBI."
"Educate public about brain injuries and many side effects."
"Please commit yourself to even much more cure and services and information to the general society, and legal, political world, state, and national, of various needs, and types of these wonderful Americans, many like myself who have brain injury impairments, but still have quite good cognitive skills. I really believe we need to go all routes so our political world has more respect and sees the need. Political clout so we can get all funding needed. Every 2 minutes someone have a brain injury. Don't push us under the table."
"To fully understand that all brain injuries are different aspects on each individual, that people need to be patient and calmly understanding, not to make fun of a person by their actions and manner. We need more support and help in all aspects of our new way of living."
"Be there for us and understanding - compassion; faith; caring honestly (not about money). Home hobbys - trips - general understanding. Help without feeling helpless and useless."
"I feel the first step is to educate the general populus, make them aware of what people with disabilities go thru, the services they are provided, federally, state, locally. Every step of the way, from the initial to coming home. From fighting to find a parking spot to getting thru doors not meant for wheelchairs. What it's like to be, "the perfect family", one minute only to have it all taken away the next. Let them know, it's not always the 'other guy.'"
"The general public needs to be made aware of how far reaching and all encompassing a brain injury is. Most people have no idea what changes take place in the TBI person's life, and don't realize that they will never be the same again."
"Send information out to consumers and ministers/priests & any other gentle listeners who don't judge. Hire more than 1 ombudsman."
"More awareness to the public of condition and of support."
"I think some of the survivors of car accidents should go into high schools and speak of how a TBI is a life altering thing."
"As technology has advanced medical science has a greater ability to keep head injury victims alive. WE need to make provisions to see to it that people like my brother are able to have as good a quality of life as possible."
"The number of people surviving head injuries is growing, up to 2 million a year. We need to get more publicity and at the same time increase services so this will not be the end of one's life. Other states have a TBI fund, as well as colleges catering to the learning differences of people with TBI."
"Get the community to realize that TBI is real and the impact that it has on a person/family who has sustained one or more as in my wife's case."
What survey respondents said:
"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!"
"More long term outpatient and occupational test and support is required for white collar, mild TBI survivors with executive and self-employed survivors."
"[Name] has been through all the rehab available to him but now what? Everything for us is now private pay. I am trying to keep him at home but feel we eventually will run out of money for caregivers and meds. I will become the principal caregiver when I retire next year. Then how can I get help that will give me some relief from this 24/7 job? Of course there are ways but they all cost lots of money. I would appreciate some suggestions."
"Some of us worked hard and have been able to keep their home and most of their way of life and are unable to receive any help because we have limited insurance - do not have a choice to a lot of what's offered. I do not need things offered NOW that I couldn't get when I needed them due to private insurance."
"As a mother of a son with TBI I am very grateful for the services we have received. It has enabled us to maintain a "normal" life, which benefits our whole family. The only thing keeping us from getting things we need is money. I don't know what you can do about that."
"Needs help in all areas! Marriage is in trouble. No one to assist finding a counselor to help in all areas that is in health insurance network. Cost $ a problem. We were all on our own. No direction for counseling in any area. MD prescribed anti-depressant but no other support. COBRA insurance ran out. My son needed to find full-time employment to have health insurance. BVR couldn't help. They had no training in his vocation to offer. His job is not in the same capacity as before accident. Much less salary! Starting over."
"Because our daughter was so little they went according to my husband's pay. It wasn't that large, but we couldn't get half of what she needed. We almost went bankrupt many times. It was bad enough she was injured, but this just compounded everything."
"I need health care and counseling for what services do exist, if any. Fall through the cracks. Did not qualify for many services."
"We are not wealthy, but are not destitute either. This mid-ground seems to be an additional roadblock to services. Have contacted a local TBI support group, but my husband's frail health has been a deterrent. The TBI has aggravated existing health conditions. I am most willing to help toward the goal of meeting the needs of Ohioans with TBI."
"Need more options for people who do not qualify for Medicaid. My spouses's injuries were too serious to consider employment. Ohio Rehab PCA program was the best financial aid we got once I (spouse) went back to work. There was a waiting list and the paperwork could be overwhelming. I went to school and became a social worker so I virtually became my husband's caseworker/manager/caregiver."
"Make sure they have monies to survive, medical coverage to use when they need it. For example: a guy gets $900 a month from SSD. To get medical card, he has to pay a $400 spenddown a month. How is he going to live? I feel TBI people get lost in the paperwork and are treated unfairly if they are not wealthy. I think they should get free medical, if they can never work again."
"Minor TBI need care and support and not dismissal or minimization. Loss of employment, insurance (healthcare) can't afford care. Can't afford medications. Since this was a lawsuit, I had to fight for care. Case manager tried to prevent care which I needed. It was two years post injury. Lawyers and my employer got more than I did. We need health insurance and medications."
What survey respondents said:
"For those in the lower echelon of society services are just about non existent."
"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."
"I was never told of any help I could get till a year ago. I did not know of any of this. They say I can work but I have changed drastically & I have looked for jobs I think I could do some but never get an interview. They say my husband makes too much to help us but we are barely making it. I don't go to the doctor as I should because most of the time I can't afford our co-pay. I need dental work because nobody reminded me to brush my teeth but can't afford it."
"I would be happy to work to bring awareness of TBI. 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."
"I don't have a car or even a cooking stove due to lack of funds. I have a car but it needs repaired and I have no extra funds after paying my bills to fix it."
"At times after paying my bills I have less than $50.00 left for the whole month."
"Living on his own with elderly family support only, [he] has all the needs of any individual without the means to meet those needs. [Agency] will not help with the leak on his roof, as an example. How are these things to be solved?"
"Provide care for those who cannot afford it."
"He has been in a homeless shelter 2 times so far this year. They need follow-
up supports. They don't think they have any problems, but are basically unable to live successfully in society mentally."What survey respondents said:
"My son is in jail because I can't get the help he needs out here. I put him in the hospital, they release him, give him 2 weeks of meds and he goes to counseling 6 weeks later. He will be out of meds, down and out before his appointment. Then he has to fight to find a ride. Case manager says they aren't a taxi service. There is no bus service in the country, so what do you do."
"The use of care and concern helps greatly. The inability to perform daily activities and help other people hurts emotionally and mentally. I like to perform helpful activities."
"Be more compassionate, have more patience. Giving up on someone should not be an option."
"I'm tired of being single - have been doing it on my own since 1995. I have my own social and religious outlets."
"It would be nice if the state would assist in the search of independent disabilities groups for funds to continue their works on a local bases. Grants, sponsors, etc. ... is a local group founded in November of 1996 by a brain injury recipient, from an accident in 1979. It was very active in the area for about 2 years. It was being sponsored by anonymous donors. At its peek it had an active brain injured membership of 35 individuals, because of the lack of community support it has fallen into the shadows, but is still very much alive. HITS is still having meetings. It now consists of less than 10 members, but is very interested in growing with the brain injury population (which is growing at a very rapid rate). We would like to seek some assistance from any person or organization that would feel fit to assist our group."
"My husband's TBI has resulted in many deficits and he suffers from depression in addition to being a very intelligent man. We need some outlets for him to experience socialization and to feel useful. At the same time, I have to be careful that he would not feel surrounded by TBI victims that cannot communicate or have severely limited mental abilities."
"Still feel like a lone voice in the wilderness. Need legal services most; clubhouse helps with personal problems/health crisis."
"I would like to see videos that can be rented regarding some of the things that can happen once you have received a head injury. Something that can be used by the family and the individual. I think knowing some of the things you are going through and are feeling are really normal. Knowing that an injury to this part of the brain can cause memory problems, can cause weakness, lack of drive, a feeling of needing to be home where you are safe. Can just talking exhausts someone with a brain injury or is there other things going on that should be checked into."
"Don't give all patients a prescription pills to eat daily when they don't need it, too many side effects. Help us understand why life is like being on 1 side of a scale, that accidents cause your side to take on unexpected weight at times and you'll throw that off and rise again in time!"
"Got involved with TBI individuals in smaller towns and communities. There is not much support for myself and other TBI persons in these smaller places. Be more wholistic!"
"Initially after the accident you go to Job & Family Services, they give you no hope. You go to SSI, only to find out you don't qualify, but you aren't high income. 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."
"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."
"Going to the TBI seminar in the fall was the BEST learning experience, just to talk and be with others with TBI, it's too bad it's only once a year and even worse....some people with TBI have never attended. I know of two families that have never attended the conference because they can't afford to."
"I would like more information of social things to go to."
"I am not sure if this will do anything, we have been in and out of the court system. Because you cannot see the handicap it is not there. This is frustrating. His emotional level is about a 10 year old but he is 21. Imagine our lives."
"I'm 21 yrs old and I'm a survivor of TBI. When I turned 21 I received accident money and all my medical and disability benefits were cut. I had nothing else to live on and was told I had a limited time to spend it or my SSI case would be terminated. I became quite distressed and began failing alot of my college classes. I live on my own with no family support at all. I'm responsible for myself. I found it very difficult to find anyone to help me find the answers I needed."
"No help. All the pastors in the world can talk to you, friends can sympathize, but the bottom line is No ONE can prepare you. The insurance, the care, the fight with all social services. The fight to get what a 14 yr. old boy deserves, No one can ever prepare you."
"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. Health supply providers short deliveries and still charge Medicare full cost, send the wrong equipment or damaged and expect families to "hillbilly" rig the stuff to make it work instead of sending the correct supplies. Home Health suppliers have no problem charging Medicaid 2.97 for a 50 cent bottle of peroxide, but can't get a trach size right to save their souls."
"When I had my TBI there were not that many survivors of TBI. The hospital gave me the same treatment everyone else got. They didn't understand TBI then, and I was sent home and no one knew that my needs weren't being met. I am glad to see the supports and services that are now available for survivors of TBI. My needs are different now, healthwise, but I still have no social life. People need to be made aware that just because of a TBI doesn't mean a person can't do things. I think I proved this with the old NHIF Ohio Assoc., now the BIA of Ohio. Just because a person has had a TBI doesn't mean they are a loser."
"I have noticed that [Agency], and most other waiver programs are willing to pay up to $6000 dollars a month to provide 40 hrs of nursing care a week, LPN's who can't, or won't do what most home care providers do willingly on a daily basis. But home care providers have to argue and fight to get what is needed to keep their TBI family member comfortable, and must prove medical necessity for the simplest of needs, like liquid food for PEG tube feedings or suction equipment for Trach patients. 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 and not need to worry if they will be able to make it through the next week."
What survey respondents said:
"As my son gets older and so do I - I worry about care for him. My ideal for him would be an apartment (like a dorm at a university) with others like him where they would have their own place but a centrally located dining room and recreation area. This way they would have decent meals and friends."
"Need to help them get better places to live. And help them who receive SSI to get out of the slum living environment."
"Set up some special housing loans so some people with TBI can possibly have their own home one day. Lower interest rates possibly so they can afford payments, set up by state and the interest can go back into the state. All handled just like a bank would with a credit report check to qualify."
"Retain "in home" care. Therapy, preferably in home, could be ongoing. Recommendations for modifications would be helpful. Son's injury is comprehensive - he is fully dependent, in wheelchair. Mostly needs good in-home care."
"There should be a home for the people with TBI. It is very difficult sometimes to care for them at home. They need medications to help them cope with their disabilities. Also psychology help. They need to be around people that they can be friends with. They need outings together and things of this nature. There should be no age limit set as in Ohio (The accident must have occurred before age 22)."
"Need group homes that have caregivers familiar with TBI."
"I've been hit by my staff twice in the nursing home. I had therapy for a while - let me have therapy again. I need therapy."
"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. [Michigan facility] said they couldn't even have a satellite in Ohio because there is no funding for TBI people. Its a shame he can't find services closer than 300 miles away from home. No-fault insurance would be a giant step in the right direction."
"Need waivers for housing."
"Permanent real estate tax exemptions bill for disabled homeowner living on incomes from Social Security Disability (SSDI) or Social Security Income(s)."
"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? Other states offer TBI supported living - New Jersey, PA, Michigan, Florida, Texas, to name a few."
"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. If there were facilities for TBI housing younger people with long term care needs."
"It should not be so difficult to get housing assistance."
"Need financial assistance with house (that I have)."
"Need some place to live since my parents are in their 70's."
"There is not statewide service for TBI, people who own their own home but need help maintaining it."
"We need group homes with monitored living 24/7. We have tried every living environment the state has to offer and nothing works for my son. With the exception of a lock down mental hospital which is where my son has been from November 2004."
"Need state Medicaid support for assisted living instead of nursing home placement."
"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."
"We need long term care for young adults in [County] who were injured after they were 21."
"I think we should have more TBI Nursing Homes strictly for TBI patients, and have only people with training in TBI working in these places. And they need to be long term."
"Ohio needs residential facilities for young people who suffer TBI similar to the Center for ... located in Carbondale, IL."
"Need more group homes, more assisted living homes. Get me outa here - get me outta here before I go mad here. [written by an individual in a nursing facility]"
"Need more places for them to live that is not a nursing home."
What survey respondents said:
"Have a volunteer support system to match a volunteer who has had a brain injury with someone who has just had one. Ask someone like me to speak. Have someone touch base with person with injury 1 year after injury to check to see what services are needed."
"It is hard for people with a TBI to even know how to begin with the ways to get on with life as it is very different and difficult. There is not enough support services for people that have TBI."
"Needs social places, more family counseling, in family gatherings and activities. I (parent) am 79 years old."
"For someone with a serious TBI unable to work - there is nothing other than medical and wheelchair services. Some kind of recreation for BI. Horseback riding or therapeutic pool with changing areas for disability."
"I want to learn and thankful to be alive."
"The government needs to spend some money and time to help people with TBI injuries in living their lives in a meaningful manner."
"My brother has no structured daily activities that he's been able to go to in Ohio area to be able to interact with people who have the same type of injury due to not having the buildings or transportation."
"Help us get in college away from parents. Help us live there."
"Have more structured groups and activities. Have more picnics, luncheons and activities."
"I have very little money, no money for trips/seminars/or vacations. I would imagine a few thousand more advocate/counselors are needed in the state. The "get togethers" are too few and too far apart. I need daily or most of the week contact with others like me - it's a very lonely world."
"Learn your state representatives phone number, address, and be sure to remind them that he or she is "your" employee and that you expect them to place your rights in a high status and to give you the most complete effort possible on your behalf."
"Things, simple things, become very hard. Any kind of help can really be of help. I have always been able to walk - not well - but under my own power with a cane. Know it's harder and harder. Other brain injury people I've met at feel the same way. We called ourselves "walking wounded". Not just me! Thank you BIA."
"Survivors of Traumatic Brain Injury could be provided mentors that would be assistive to those that encounter difficulties with living and/or working in the mainstream."
"Please listen to us and believe us."
"I receive services at [Clubhouse]. Clubhouses should be funded. Service coordinators/case managers are needed and located at local clubhouses. I can't work and do not need voc. services. I need clubhouse services to improve my quality of life."
"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. They need a place to come together and relate to each other."
"Need community supports, social recreational, etc."
"I think our Ohio Brain Injury Association is doing a good job. Keep doing what you are doing."
"Think creatively! All communities should have state funded clubhouses which can be the "point of entry" for all non-medical TBI services. Vote for legislators who are honest, compassionate and approve adequate funding for TBI survivors! Look at Michigan, Florida, NY, and Virginia especially!"
"Many respondents have ideas about services they need that are not readily available. Respondents want support groups, both peer and professionally run, and more access to transportation, case management and cognitive therapy."
What survey respondents said:
"All people with brain injuries need to be connected to support groups right from leaving the hospital. There needs to be a packet given to each person discharged that offers support group services to survivors and family. Then a follow up with each family and information at support groups for patients. I can only stress the importance of putting a large $ toward funding support groups, especially for all of us who have had this life changing event. There are only two in NE Ohio. Also patients who are discharged need this information and follow through. Support groups need to be staffed by professionals and information on brain injury available."
"Would like more support groups for families impacted by a TBI. Would like more support re-introducing individuals with TBI into the community."
"Need support groups for spouses at different levels - i.e. my spouse is high-functioning for TBI so I don't fit into most TBI groups where injuries are more profound, but I could still benefit from support from others in similar situations."
"Information is hard to find. Hospitals need to provide more info to patients BEFORE releasing from their care. Have been uncertain where to go for a TBI support group."
"TBI support groups should be more advertised or information given to patients family members & caregivers - more education for people - new treatments - how the brain works - things like that. We did receive some education while inpatient at [Rehab] that helped tremendously."
"That neoursurgeons need to be aware to tell their brain surgery patients about the emotional things that they will experience. I wasn't aware of the support group or what I would go thru for at least 6 months and that was from a coworker whose daughter was in a car accident with a TBI."
"Have more support groups and more groups activities."
"Need support groups in several areas. Test us, find the "real" ones who need help (cleaning, reading again, being motivated). Just help. We need help with medication more than anything. Not a member of a support group because it is too far at night."
"We have no one in our county to support and help us concerning my husband's brain injury. I would love to start a support group, etc., and work for the Brain Injury Association."
"Please give monetary support to club houses like [TBI club house]. State should provide medical services for those with TBI."
"Traveling is required for access, including support groups! An on-line support group has been MY primary link to sanity and information."
"The BIA needs to offer a support group for those with the injury and the family's."
"I would personally like to know of support groups that you can sit in and let frustrations out as well as be made to feel OK."
"There should be more information on support groups. [Hospital] in Cleveland has an excellent brain injury rehabilitation and therapy staff and programs. The brain injury conference at [location] is an excellent idea. It's a very educational and learning experience. Meeting other people in my situation helps me to cope. I think more information about support groups would help everyone."
"I would be interested in a small TBI support group with just the TBI survivors and not with the family members in the same group."
"Need more support groups. I would like to teach people what I can do with brain damage."
"There need to be more support groups that meet for TBI and group functions to go too."
"More support groups in more locations are needed."
"Start support groups throughout various regions and provide funding."
"There are very few support groups. [Name] needs career counseling, math, and reading tutors, social skills, volunteer opportunities, very badly needs social interaction."
What survey respondents said:
"Improve case management. Case management should be case management. They should make things happen where needed not reverse it back to the family. If that is true then write me a check for doing their job. More paper trail. Paper will not fix anything. Actions do. Get them off their butt and do their job, not write a paper."
"A caseworker for each TBI person would be helpful."
"We all need case management services. I have them only because my family is paying for a fee for service agency."
"Need one on one case managers who help TBI survivors to cope with struggles of daily life. Basically close emotional problems solving."
"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."
"Need more Community Support Network persons with the Brain Injury Association of Ohio and creation of Case Management targeted specifically to those with brain injuries ... or at the very least, training of current Case Managers in other fields to the needs of those with brain injuries. In the critical stages after brain injury a person needs someone to guide them through everything because they can't remember things & have lost executive thinking skills. I can't stress enough the need for Case Managers to help those with brain injury get to their appointments, organize things, help them remember to pay bills. Really just about anything that a "normal" person takes for granted everyday...but a brain-injured person in unable to do. 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."
"Provide casemanagement to help families understand and advocate for services."
What survey respondents said:
"I need a cognitive retraining program close to home, or about one hour drive that will help me get my skills back so I can return to work as a teacher. I have aphasia and I am getting speech therapy but they do not have the resources I need in [Town] in order to recover my skills."
"Please provide cognitive remediation and guidance counseling."
"Please! Need cognitive training desperately."
"Please provide cognitive remediation and some type of guidance counseling."
"I am very happy with his therapy group at [Hospital]. It has helped him tremendously with his cognitive issues and aphasia."
"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. 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."
"Because the majority of the injury received in the accident was to the front lobes of the brain, a hospital would not take the patient in and had to go in a nursing facility. 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."
"Cognitive training received right after my injury was helpful but insufficient."
"Programs are needed that are designed to stimulate brain functioning by cognitive and physical means and that are not limited to short-term, post-injury rehab."
What survey respondents said:
"Travels for follow-up visits w/MD's, but everyday things ... not much available."
"I had to take ... [a public transportation system] 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. You can only call a few days in advance to arrange, then there is no availability."
"I wish I had the answers to improving services for TBI people like me who no longer drive and don't have the finances to hire a car & driver to take me places."
"I am too young to qualify for senior citizen's van. I am in need of knowledge and transportation to any meetings concerning the need of a wheelchair and homebound person."
"We need a better, more timely transportation system."
"While working last job I was provided transportation from the county board of MRDD. Before I began "riding" I wasn't informed I'd be charged as well as how much I'd pay. That is, merely to get to work!"
"Maybe start a program where higher functioning TBI people can help lower functioning/ more recent TBI people with things (like emotional support, encouragement, physical therapy, etc.) when they can't get it because of no insurance type thing. Since this would probably be on a volunteer basis somehow provide transportation for the volunteers. MOST CANNOT afford to pay, even bus fare, to go and volunteer somewhere."
"Need transportation to doctor and rehab appointments."
"Transportation for persons who can't drive is still an issue even for those of us who live in [County]."
"Desperately need transportation. We need affordable transportation."
"The transportation could be better, [City] has only one Taxi."
"Impossible to keep traveling for things after initial crisis/emergent issue."
"Need help with transportation."