1. Planning to Address the Complex Needs of Neuro-Rehabilitation in Kentucky Chell Austin, Executive Director Brain Injury Alliance of Kentucky 7321 New LaGrange Rd., Suite 100 Louisville, Kentucky 40222 www.biak.us

2. The Issue The CDC estimates that 2% of the population has long term disability from brain injury. (85,000 Kentuckians) and that 10% of these (8,500) require intensive supports due to behavioral issues. Professionals trained in neurobehavioral care are scarce in Kentucky. Neurobehavioral services and supports are limited.

3. Many Kentuckians are not receiving basic rehabilitation due to lack of coverage by Medicaid or private insurers and long waiting list for ABI waiver services. Services that help people with neurobehavioral issues remain in the community or in the least restrictive setting are extremely limited in Kentucky. The lack of a coordinated system of care in Kentucky decreases productivity, quality of life and greatly increases costs.

4. A Journey Taken By Many Larry, as young man, received a severe TBI from a car crash in 2004 and was admitted to a regional medical facility. The hospital was not able discharge him because there were no placement, programs or funds for a 24 hour community based cognitive and physical rehab setting. Over 100 nursing homes denied admission because they had no staff or facilities to care for him due to his severe behavioral issues. For 14 months the hospital cared for Larry at their expense, a total of over $500k.

5. The hospital did not have staff trained for behavioral issues and would react with restraints to Larry's verbal and physical behavior. After 14 months Larry was admitted to a specialized brain injury rehabilitation hospital. By this time Larry had severe physical and behavioral issues that required two on one staffing to assist him with his care. The appropriate treatment from trained professionals soon began to have a positive effect. He required fewer staff to care for him and his outbursts became less frequent. After 75 days Larry was ready to be discharged for neurobehavioral rehabilitation. BUT TO WHERE?

6. A coordinated system of care Several pieces need to be in place. If any of the parts of this plan are missing the chance of a successful outcome becomes less likely.

7. SCREENING AND IDENTIFICATION. It will reduce misdiagnosis. A neuropsychological evaluation using standardized tests will evaluate attention, motor performance, perceptual coding, learning, memory and affect. It is also important to evaluate how a person functions in "real life".

8. A plan is developed for managing risks and addressing problems. It is critical that screening be implemented in a variety of settings including hospitals, mental health agencies, schools, prisons and homeless shelters, to name a few. (Examples?) This requires training of personnel and coordination among agencies. A number of states have developed successful models for cross training and collaboration among agencies. ( Vermont, New York, Pennsylvania, Utah, South Carolina, Massachusetts, to name a few)

9. One cost effective method is the use of mobile resource and consultation teams. These teams consist of a neuropsychiatrist, analyst, psychiatrist, neuropsychologist, case managers and persons with knowledge of state and local resources. Currently Kentucky does not have a systematic screening process. Screening is fragmented or nonexistent.

10. TRAINING AND AWARENESS. Specialized training for care providers is critical and should be conducted in a variety of settings and across agencies in order to: 1. Increase awareness of the specialized services that are required to support a person with TBI effectively. 2. Conduct appropriate screening and evaluation. 3. Provide adequate and appropriate rehabilitation 4. Provide adequate and appropriate support services ensuring that caregivers and staff are equipped to deal with these issues. 5. Reduce stress and turnover in staff and caregivers. 6. Reduce long term costs.

11. CURRENTLY Kentucky has no organized training programs. Developing one is not a simple task. A database is necessary to identify persons who have received specialized training to serve those with neurobehavioral issues.

12. REHABILITATION. Rehabilitation is necessary to increase ability of the person to live and remain in the community. The enhancement of these abilities will lower stress and frustration thereby modifying neurobehavioral issues. Cognitive and behavior therapies should be provided soon after a person is medically stable. Any significant delay will lessen the chances of good outcomes resulting in the individual becoming less independent. The focus is on behavior skills as well as compensatory strategies to help with specific deficits. The goal is to help the individual to self-manage their emotions and behavior so that they may be better able to function independently. Counseling and psychotherapy are used to treat depression and loss of self esteem. Rehabilitation also requires transition and follow-up services. Psychopharmacology can be effective in treating aggression, irritability, depression and anxiety.

13. LIFE-LONG SUPPORTS. The long term success of persons with neurobehavioral issues living in the community depends on access to a range of services to support them. Families who are overwhelmed by the effects of brain injury require case managers. They would identify needs and facilitating the provision of services and supports. Kentucky needs a point of contact for people to call to navigate the system of services. BIAK Advocacy Director Mary Hass is working to create this point of contact. If needs are accurately identified it will do little good if professionally-designed behavioral supports, counseling, community based in-home care, personal care and crisis management do not exist. These services will reduce the likelihood of people being placed in more costly settings. For most persons with brain injuries in Kentucky the result is the latter. Support for the caregiver is critical in order to ensure the stress does not become overwhelming. Lower cost caregiver respite centers can be instrumental in allowing the family to continue to care for the person with neurobehavioral issues. There are persons who will require structured residential treatment for a life time. These would be in place of nursing homes and would include cognitive, behavioral and pharmacological treatments. Not only are these facilities lacking in Kentucky but Medicaid will not reimburse this for long term.

14. EFFECT ON PERSONS AFFECTED BY BRAIN INJURY WITHOUT THESE SUPPORTS: Caring for persons with neurobehavioral issues is problematic for many reasons. 1. It is expensive ($80,000 to $160,000 per year) and 2. It is ineffective. When many of these people face these challenges because of lack of specialized care, they end up in state hospitals, prisons or become homeless. Brain injured persons are 7 times more likely to end up in prison than the general population Prisons and state hospitals are again expensive and ineffective and further contributes to human wreckage. It is wrong for every reason that persons with neurobehavioral issues are placed out of state because no facilities exist in Kentucky. This removes the person from the people who really care about them and it is again much more expensive. This is further indication that Kentucky is way behind what is being done in some other states. What Kentucky currently has is both ineffective and costly.

15. Thank You Chell Austin, Executive Director Brain Injury Alliance of Kentucky 1-800-592-1117 www.biak.us