The State of Ohio's Needs and Resource Assessment
of Individuals with Brain Injuries and Their Families

Individuals and Their Families Rated Services and Identified Unmet Needs

This section of the report provides charts for each service with the results provided by individuals and their families.

For each service described in the charts that follow, respondents were asked to check all that apply to the person with a BI. Choices were "do not need," "receive and satisfied," "receive but dissatisfied," and "need this service."

Because respondents could choose more than one answer to a question, the combined numbers of the bars in the graphs below generally total more than the number of responses noted in the title.

List of survey questions about:

• case management/service coordination
• home care support
• housing
• respite care
• learning supports
• therapy services, medical services, counseling, etc.
• work, finances and living in the community

Survey question about case management/service coordination

A survey respondent said: "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."

Survey question about home care support

A survey respondent said: "We need assistance AT HOME ... Without those services I would be in an assisted living facility."

Survey questions about housing

A survey respondent said: "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."

A survey respondent said: "Recommendations for modifications would be helpful. Son's injury is comprehensive - he is fully dependent, in wheelchair."

Survey respondents said: "We need housing now cause we are being evicted."

"He has been in a homeless shelter 2 times so far this year."

"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 med's and he goes to counseling 6 weeks later. He will be out of meds, down and out before his appointment."

Survey question about respite care

A survey respondent said: "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."

Looking only at family members' responses shows that families perceive a greater need for respite care.

A survey respondent said: "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."

Survey questions about learning supports

A survey respondent said: "There should be major educational supports within the school system to provide job training and to match individuals to interests and job opportunities."

Most people answered this survey question. However, only 47 of those people were under the age of 22, and therefore were eligible for these services. Here's a look at what they said.

A survey respondent said: "It's taken me a year and he's still not in the school I've been signed up with."

A survey respondent said: "I went to college before, I need [a] tutor so I can go back to school."

Most people answered this survey question. Looking only at those people who were 22 years old or older, here is what the survey found:

Survey questions about therapy services, medical services, counseling, etc.

A survey respondent said: "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."

A survey respondent said: "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."

A survey respondent said: "I need a cognitive retraining program close to home ... that will help me get my skills back so I can return to work as a teacher."

A survey respondent said: "We are always looking for more cognitive training, OT/PT, medical services that address BI, and assistive technology."

A survey respondent said: "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."

A survey respondent said: "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 an TBI victim."

A survey respondent said: "[A]s a caregiver, I could use socialization with those who share similar situations as I took an early retirement to care for my husband ... 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."

A survey respondent said: "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."

A survey respondent said: "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."

Survey respondents said: "My nephew was released from the hospital with no follow up as far as therapies for his behavioral changes."

"Need help to control temper - shortened fuse - frustration with changes."

A survey respondent said: "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."

A survey respondent said: "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."

Survey respondents said: "The continuum of care and communication doctor to doctor was vague."

"Educate doctors to refer their patients to specialists they need to help them."

A survey respondent said: "I do not have dental services because many places do not accept Medicaid or only accept so many Medicaid clients."

A survey respondent said: "Reduce paperwork and follow up. After 2 years - still trying to get electric wheelchair! She needs this to improve mobility and self reliance."

Survey questions about work, finances and living in the community

Survey respondents said: "There should be major educational supports within the school system to provide job training and to match individuals to interests and job opportunities."

"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."

Survey respondents said: "They all gave up on me. Said I was Un-employable. I used to lead a crew . . . I can't do this anymore."

"[H]e didn't like being at a sheltered workshop and would become uncooperative - he has been deemed unemployable."

A survey respondent said: "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."

A survey respondent said: "Pay attention and listen to them, don't feel sorry for them or baby them. TBI classes should be led 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."

A survey respondent said: "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."

Survey respondents said: "Desperately need transportation. We need affordable transportation."

"Traveling is required for access, including support groups! An on-line support group has been MY primary link to sanity and information."

Survey respondents said: "Would like more support groups for families impacted by a TBI. Would like more support re-introducing individuals with TBI into the community."

"I need daily or most of the week contact with others like me - it's a very lonely world."

A survey respondent said: "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."

Survey respondents said: "We are happy with our legal assistance but the process of applying for SSI is very slow."

"Extremely difficult to find doctors or lawyers who understand and know about brain injury....Require classes while in medical or legal school. Pass laws to help."

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