Comments from providers in answer to the questions, "Are there significant gaps in TBI services in Ohio? Please describe," and "If you have other ideas about TBI services, please let us know."
Note: Information that would identify individuals or places has been redacted to assure privacy and confidentiality.
Here is what providers said:
"Most of these questions do not apply to an ADAMHS board."
"My experience shows that there are few services for individuals with TBI post acute rehabilitation. Services provided by CBMRDD are not appropriate because many people with TBI do not identify with people with Mental retardation. There are few services specific to the needs of people with TBI and they have many needs. The other major gap includes people injured after the age of 21."
"Local counseling, services for TBI individuals to assist with social skills and anger management."
"Housing (especially with supervision), transportation, payment for services past acute stage."
"Long term residential care."
"Neurobehavioral inpatient treatment."
"Case Management for individuals injured after age 22."
"Supported employment and vocational services leading to successful employment outcomes."
"Neuropsychology services for children."
"Neuropsychiatry services for children."
"Neuropsychology services for low-income adults."
"Occurred after age 21. Although funding is available for others, (for the most part) people with TBI do not want to be served with pople who have mental retardation."
"[Agency] provides "traditional" residential services - typically serving adults. The services identified above are provided for people to whom [Agency] provides residential services and supports - not the community in general."
"The TBI collaborative out of [County MRDD] has done a great job of pulling together school district, rehab facilities and universities to help students and families facing a TBI."
"Please keep funding the TBI collaborative. We have all learned so much."
"Our participation in TBI services is limited to the senior population, living in our facility that have suffered the devastating effects of cerebrovascular accident or stroke. We deal with the personal care, ADL care and psycho-social needs of the patient with paralysis and behavioral changes that can accompany stroke. We may not be the typical TBI survey participant but do feel that the CVA patient should qualify when you think about the brain injury that occurs! Thanks!"
"From my observation and requests for services that I have received, there is a significant lack of necessary service for individuals with severe TBI that are not eligible for MRDD services. MRDD offers numerous options for individuals with TBI, but beyond that there appears to be little assistance away from nursing and rehab facilities."
"This facility has difficulty in finding resources and people to help train the staff on the behaviors of people after a TBI."
"Training for school guidance counselors on TBI issues."
"Training for law enforcement and legal practitioners in the area of TBI."
"Advocacy for families to address the legal system as it involves people with TBI."
"We haven't consistently and systematically tracked TBI in our Behavioral Health system. A mechanism to do so (most likely Intake Form) should be implemented. Training to help assessment staff recognize signs and symptoms of TBI would be helpful in achieving this goal."
"Please note that the Board doesn't provide services directly, but rather, contracts with local agencies to provide services. My responses are based on the contracted services they provide."
"It seems that the biggest gap is that there is little coordination of services. Individuals get bounced around from provider to provider and are often given conflicting information. It would be great to streamline the recovery process from inpatient to community reintegration. [Agency] is a new business to the area. The philosophy is on providing functional rehabilitation care for patients where it benefits them the most, in their home, community and even in our clinic. Our clinic is tailored to individuals with neurological impairments. As a rehab agency licensed by Medicare, [Agency] offers complimentary social work services and case management for patients to address the cumulative needs of the patients which in turn promotes higher rehab success."
"Yes - TBI is a disability that is in much need for long term case management support. In the years of serving this population this is a gap that we often see that is much needed for individuals who return to the work force but still needs support. [Agency] in Cincinnati has been operating a program to serve persons with TBI for over 12 years. This is an individualized program that only serves this population. It is a vocational program that provides Assessment, Job Placement, Job Coaching and three year follow along to its participants. The staff of the program have all been with the agency for several years and are skilled in the area of TBI. The Manager of the program has been serving this population for over 13 years and does active training in this area. The program previously served over 100 individuals in a year but these numbers have since dropped significantly. It is believed that this has occurred because a lot of people, medical professionals and family members, are not aware of these services and how to tap into them. There needs to be more education and sharing of services that are provided around the state."
"Physician knowledge and follow-up evaluation and referral."
"No group homes or other placement possibilities when residents progress to the point of needing a less restrictive environment than a nursing home, but more restrictive than private home, or have no home to go to."
"County Boards of MRDD are not the best place for TBI enrollees. Their needs are quite different from people with MRDD. They need more intensive sensory training, impulse control training, community integration training than is typically provided in MRDD Programs. They are often "held back" by the group's cognitive level in comparison to their level."
"We serve such a small population of individuals with TBI. We would benefit from more inservice training for our staff."
"Gaps in transitional living services in Ohio."
"Assistance with daily living skills, recreational and social activities, many individuals with TBI need a Representative Payee. The [TBI Club] has just opened in [County] ... the State has to identify a way to fund TBI club activities."
"We serve older adults with limitations in activities of daily living, no matter what the cause is."
"Limited independent living/housing options in the area for patients with TBI."
"Transition supports from changing environments: (e.g. home to work, independent living services, long-term care outside of institutions esp. for adults not diagnosed before 22, lack of trained support staff/family/friends/employers knowledgeable concerning cognitive retraining, behavioral modification, memory issues, law enforcement, etc. Grants for real world endeavors that can be modeled."
"There is very little in Appalachia. Persons with TBI are usually treated as psychiatric."
"There are significant gaps. There are gaps in outpatient substance abuse and mental health treatment, and lack of any programming for residential AoD treatment. We strongly advocate with our residential programs in [County] to provide services for this population, but often they state that they can not accommodate their special needs. This leaves an enormous gap in care, and often times, the consumer's use pattern may be too significant to manage at the outpatient level of care. This then becomes a liability issue for the agency and a lack of proper care for the consumer. I would encourage your organization to contact [Name] with [University]. He is very well known for his expertise in this field of study, and we are lucky enough to have his daily involvement in our program."
"We recently received a grant to purchase adaptive technology for adults and children to help persons who are sight impaired or have learning disabilities. The technology will be in place the fall 2005 and is funded through the Ohio Library Council with financial support through the [Schools], [Center] and [Public Library Foundation]."
"Individuals with a diagnosis of TBI are not well serviced in our system because they do not fit in with our population. In many instances, these individuals have behaviors that our system does not always adequately know how to address."
"Need money to serve people adequately becoming more of an issue - as many county boards are faced with."
"We would welcome any referrals from your association. Thank you for your invitation to do the survey."
"In our community there is a lack of services for individuals with TBI. As a result the individuals either are referred to geriatric services (nursing homes or assisted living) or agencies typically serving individuals with MR/DD. We receive numerous requests for housing with support as well as for recreational opportunities and occasional volunteer opportunities. Our information and referral data does not identify individuals with TBI, rather it identifies areas of need. If this data would be helpful we would be happy to provide this information."
"Continue to be gaps between hospital and school communication. Schools are unaware of the injury and its affects on the child's learning."
"Information and referral services only in areas of case management, housing assistance, home modifications, school supports, speech therapy, cognitive training, OT,PT, individual and family counseling, assistance getting a job, community skills, social skills, money management, transportation, recreation/social and general legal service."
"No specific funding for adult day programs which tend to be attended by TBI survivors who are not capable of returning to the workforce."
"Under our Crisis/Hotline, any TBI would be listed under Medical/Health as a problem or need."
"There are no references for what "TBI" is. What does it mean?"
"Yes. There are very few funding streams to support individuals with TBI occurring at age 22 or after."
"I am finding many gaps in the number of places to get help for brain injury clients. They especially fall short of materials to give clients. Any suggestions? Would like more info on community help for TBI clients. My resource sheet needs updated. I find that many of the institutions that have helped in the past are no longer in business. Would also like some up-to-date packets to give to our clients and their families when they come here."
"Significant. Few if any residential services and very limited behavioral services."
"Supported Housing."
"Care Facilities for persons unable to live in community."
"Case management for persons without A.O.D. or M.H."
"Adequate funding for needed services."
"Housing and supervision. We need TBI group homes."
"Yes, there needs to be an expansion of TBI services in rural areas of Ohio. I live in [County], a rural county. I am available to provide services."
"Medicaid funded waivers to provide supported living services, case management services funded by Medicaid, Neurologists specializing in TBI."
"Housing - both independent and supportive - there are no resources specific to the TBI population."
"Case management only exists through the TBI network and eligibility must include an AOD diagnosis to receive benefits."
"Vocational - no services exist specific to the population and their special productivity needs."
"Individuals with severe TBI require mobility and positioning equipment. This area is being served outside of the TBI community. It would be advisable to give families resources regarding positioning and mobility. This is often the primary concern of family members and individuals with TBI."
"Families do not take advantage of adult day care. A full day of activities for the attendee; a full day of personal time for the family. Utilize adult day services. The agency does provide periodic education and training specific to TBI when necessary, and will seek education and training resources specific to TBI once attendance levels rise."
"Per our TBI support group; housing for TBI survivors; job retraining and availability."
"Inpatient Rehabilitation Services (acute care)."
"Do not provide nursing, Medical services related to TBI, or general medical services through therapy services."
"30 days Level II Trauma is cared for."
"Services for individuals with Cognitive Impairments who do not treat eligibility criteria for County Board MR/DD Services but who they need similar services. Exact number of Staff working with individuals with TBI is unknown, based on client to staff ratio, approximately 7."
"Please consider including for services individuals who have brain injury from ALL sources. People who have a brain injury from non-traumatic sources (meningitis, encephalitis, brain tumor, stroke, brain abscess, anoxic, e.g. lack of oxygen from heart failure) face similar challenges in the long term."
"Most private insurance covers only a limited number of outpatient therapy visits/year. Often this is not sufficient for optimum recovery."
"For individuals with private insurance there are often no services in the home until Medicaid Waiver is in effect. This can be a long wait."
"There is a shortage of home health service providers, especially in the rural areas."
"There is a serious shortage of recreational groups specific to individuals with TBI."
"There is a lack of housing for individuals with TBI."
"There is a lack of funding for home adaptations."
"For individuals with Medicaid insurance there is only transportation to medical appointments. For individuals with private insurance transportation is spotty to non-existent. Families find themselves suddenly without family transportation. Most families are not in a position to purchase a wheelchair-lift equipped van."
"There is lack of psychological services for individuals who have suffered a TBI after his/her 22nd birthday."
"There is no case management for individuals who have suffered a TBI after his/her 22nd birthday."
"There is a shortfall for people who are cut off from BCMH and other public funding, but have private insurance that does not provide sufficient coverage."
"There is no long term inpatient facility providing long-term cognitive training that Ohio Medicaid will fund. (The [Agency] previously had a unit that reserved four beds for this purpose, but it lo longer provides this service.)"
"There is a shortage of long term care facilities for children who have a low level of function after having suffered a TBI. There are two such facilities in southwest Ohio: [Agency] and [Agency]. They both have long wait lists."
"There is insufficient vocational re-entry training."
"Outpatient neuropsychological evaluations are often denied by private insurance making long term recovery difficult."
"There is no coverage of Driver evaluators."
"Respite care is not funded adequately."
"Yes - If injury happens after 21st birthday - Very limited services available, many individuals end up living in a nursing home due to lack of options to support them."
"Resource and referral, Family education and support, independent living and assisted living funding."
"This agency said under the agency service section, "We have no idea if we service this group of people."
"Lack of options for children needing ongoing cognitive retraining/close supervision after acute rehab."
"Gaps in the continuation of care from initial phases through physical rehabilitation through behavioral therapy through community readiness and follow-up support. Disjointed service system - MRDD bureaucratic responsibility & adult nursing care facilities (ODH) & BVR services."
"Accessing case management services when not qualifying for Medicaid or mental health services. Qualifying for Medicaid Programs if assets and resources build up prior to the TBI (usually denied at first), getting hooked up with all the appropriate resources, like neuropsychologists who don't exist in rural areas."
"Yes. There's a great need for case management."
"We provide a variety of family friendly trainings that touch on many of the areas listed above."
"Housing Assistance, both accessing housing and support and paying for them during transition."
"Case Management."
"Social Supports."
"Outreach."
"I have not been aware of much training related to TBI especially employment issues."
"Services paid for by a third party or individual can pay service, must be able and willing to benefit from provided services. Eligibility would be based on the ability of each 3rd party payer if that is the funding source."
"Yes, support groups are not easily accessible to providers. Services needs to be more accessible/well known/advertised."
"Per our TBI Support group, housing for TBI survivors, job retraining and availability."
"The largest issue I see is no services offered to people who receive their injury after age 22. There should be some type of help for them."
"Dealing with [Agency] has been trying. There must be offices who directly advise tbi-ers and their caregivers."
"Individual service coordination (targeted case management) is sorely lacking for Ohioans with traumatic brain injury. Housing is a huge need. Educators, medical professionals and service providers need training in order to properly diagnose and treat individuals with brain injury. Transportation, particularly in Ohio's rural areas, is needed. Increased awareness of brain injury prevention and rehabilitation, and education of public policy makers and employers is essential."
"A dedicated funding stream for TBI programs, services and supports, beyond the current program line item in the State budget, would expand and enhance existing supports. A TBI Trust Fund might fit the bill. A TBI Waiver would help."
"2 consumers facilitate our group. It meets each Tuesday from 3 - 4:30 at [Church] and each Tuesday 7 - 8:30 [Hospital]."
"Gaps in services for individuals aged 22 to 60. Many people have to rely completely on family for support. Need home supports, residential options, vocational supports, etc. Information and referral services are main service with facilitation of support group of 25 people as well."
"Money for treatment. Case management, housing, vocational, in patient rehabilitation, individuals not only have to deal with the difficulties of TBI, they have to fight for services, often getting denied because of their age when injured, or because organizations don't understand the unique difficulties a person with TBI has. Many have no family advocates to be persistent for them."
"Case management in the community."
"Facility based programming for post age 22 - funding sources."