1. SW 644: Issues in Developmental Disabilities Traumatic Brain Injury Charles Degeneffe, Ph.D., CRC, ACSW Associate Professor of Rehabilitation Counseling San Diego State University

2. For today:  The context of Traumatic Brain Injury  Family caregiving and sibling involvement  Psychosocial Challenges  Return to Work  Policy developments  Veteran Issues

3. Traumatic Brain Injury Definition “Any external force that acts on the skull causing damage to the brain.”  Multiple means of incurring a TBI  Multiple outcomes following a TBI  TBI is described as either being an open or closed head injury

4. The Causes of Traumatic Brain Injury Percentage of TBI Causes

5. Disability/Illness Comparisons Annually—2004 data from the CDC  TBI-1.5 million  Breast cancer-176,000  HIV/AIDS-43,681  Spinal cord injury-11,000  Multiple sclerosis-10,400

6. FY 98, Per person spending Families as Caregivers Economic necessity

7. Families as Caregivers (cont.) Preferred choice  Family expectations and values  May be an effort to address pre- injury behaviors of person with TBI

8. Special Relationship Issues Parents:  Parents may need to focus most of their time and energy on the injured family member, while other relationships become secondary priorities Intimate Relationships:  Partners may face the challenge of being involved intimately with someone who differs substantially in personality and sexual behavior

9. Special Relationship Issues (cont) Children:  Sometimes provide care and support to their parent with a TBI  May be asked to assume tasks formally performed by the parent with a TBI Siblings:  Are often concerned about their injured brother or sister’s future and need for care and support

10. The Sibling Relationship  Relationship originates with birth and extends to death of one of the siblings  Except in cases of adoption, siblings share common genetics, family history, and culture  Social interactions and affective ties remain through adulthood into old age

11. Prior Research on Siblings  The majority of research on families has focused on parents and spouses; little is known about siblings (  Across different disabilities, the nature of social interactions and affective ties in sibling relationships remains fairly consistent from early childhood to old age

12.  Research on siblings of persons with disabilities finds that caregiving takes place during the formative years and in adulthood  Research indicates that having a sibling with a disability influences career choices, childbearing decisions, romantic relationships, future plans, and attitudes toward persons with disabilities  Research finds that siblings of persons with TBI can experience high levels of psychological distress and current and future concerns for their injured siblings

13. Sibling Concerns About Future Caregiving I am the oldest sibling and the only one living in the same city as my brother who has TBI. I have just started a family, my parents--who have been the primary caregivers, are getting older. What will be my role?…I will become the primary caregiver when my parents cannot. I worry how this will affect ‘my’ family. I would like my other brother and sister to assume some responsibility as well, but I don’t know if this will be possible. I also worry about the needs of my TBI brother, what will his future needs be?

14. Psychosocial Challenges  Many persons struggle with accepting their post-injury limitations  Some may feel life is not worth living; some consider suicide and often overuse drugs and alcohol  Persons often compare their post-TBI lives the social, vocational, and familial roles they performed before they were injured; they wonder how life will be “normal” again

15.  Persons with TBI can experience sexual dysfunction where they may lose sexual desire, become hypersexual, and/or lose impulse control  Spouses and partners may experience feelings of sexual neglect and frustration

16. Psychosocial interventions:  Support groups give persons with TBI and their families a sense that they are not alone  Groups offer exposure to role models, facilitate resource development, build social support, generate coping strategies, and prepare injured persons and their families for past, present, and future challenges  Support groups are effective in addressing sexuality concerns by helping to develop friendships, share sexual frustrations, and discuss the consequences of problem behaviors

17.  Telehealth links mental health professionals to persons with TBI and their families through television-based video communication transmitted via telephone lines  Telehealth is used to provide home-based mental health and neuropsychological supports along with speech, occupational, and physical therapies  There are also Internet-based supports such as specialized websites that offer such resources as reference libraries, bulletin boards, and available local service providers

18. Return to Work  Unemployment rates among persons with TBI range from 10 to 78%  Few persons with TBI return to their pre-injury levels of work, pay, or hours worked per week  When persons return to work roles that exceed their capacities (e.g., returning to their previous employment positions), they can experience elevated stress, depression, termination of employment, and problems attending to personal care needs  Those who remain chronically unemployed exhibit higher depression and anxiety, and various physical health problems

19. Factors related to returning to work:  Returning to work in the first year post- injury  Persons who finish high school  Persons that are married  Persons under the age of 40 years  Persons that possessed awareness and acceptance of the realities of their injury  The use of cognitive rehabilitation to help recover and/or compensating for post cognitive skills (e.g., memory)

20. Return to Work  Unemployment rates among persons with TBI range from 10 to 78%  Few persons with TBI return to their pre-injury levels of work, pay, or hours worked per week  When persons return to work roles that exceed their capacities (e.g., returning to their previous employment positions), they can experience elevated stress, depression, termination of employment, and problems attending to personal care needs  Those who remain chronically unemployed exhibit higher depression and anxiety, and various physical health problems

21.  Use of programs that teach effective interpersonal skills, incorporation of work performance feedback indicators, and utilization of instructional techniques like modeling and role playing  Learning how and if to disclose the TBI to a prospective employer  Use of supported employment  Use of a comprehensive neuropsychological assessment--provides information on post-TBI attention, concentration, alertness, processing speed, memory, learning, executive functioning, and language abilities

22. Policy Developments  Many persons with TBI are dependent on public resources since private health insurance and liability insurance settlements are often inadequate to meet acute and long-term needs  Most private plans have spending caps and may offer no coverage for long-term care  Liability insurance claims can take months and even years before agreement on a final settlement amount is determined

23.  Long-term community support is fragmented among the states  Some states maintain TBI trust funds, where revenue is generated through a percentage of civil penalties on speeding violations, reckless driving, DUI convictions, and from driver’s license renewals  Trust funds pay for acute rehabilitation, post- acute rehabilitation, community supports, case coordination, maintenance of TBI registries, education/training, evaluation, information and referral, prevention and public awareness campaigns, and VR, Medicaid, and Medicaid waiver matching costs

24. General disability support programs  State/federal vocational rehabilitation system  Medicaid  Supplemental Security Income and Social Security Disability Income TBI specific programs  Trust funds  As of 2004, 24 states provided Medicaid waiver programs specifically for persons with TBI

25. Medicaid waiver supports: 1.Residential habilitation 2.Transitional housing 3.Independent living skills training and development 4.Day programs 5.Home and community support services 6.Substance abuse/mental health counseling 7.Employment/rehabilitation 8.Intensive behavioral support/crisis support 9.Psychology and counseling support 10.Home modifications 11.Nonmedical transportation 12.Respite care 13.Personal care/attendant services 14.Skilled nursing 15.Home-delivered meals 16.Physical, occupational, speech, and cognitive therapies 17.Case management

26. Federal leadership: 1.TBI Model Systems of Care --Funded by the National Institute on Disability and Rehabilitation Research --Funds 16 programs at universities, hospitals, and rehabilitation institutes throughout the United States --Aims to a) demographics of persons with TBI, b) causes of TBI, c) nature of TBI diagnosis, d) costs of treatment, e) measurement and prediction of outcome, and f) types of services and treatment

27. 2. The TBI Act --First passed in 1996 and reauthorized in 2000 --Aimed to improve service delivery and enhance understanding of TBI a)Centers for Disease Control: Create strategies to prevent TBI and establish state uniform reporting systems on TBI incidence and prevalence statistics b)Health Resources and Service Administration: Make grants available to states for 1) protection and advocacy agencies to provide information, referral, and self- advocacy; and 2) coordinating, expanding and enhancing state service delivery systems c)National Institutes of Health; Conduct basic and applied research on TBI

28. Veterans Issues  OEF=Operation Enduring Freedom-- Afghanistan  OIF=Operation Iraqi Freedom --Over 1.6 million military personnel deployed in both operations --It is estimated that 22% of all OEF and OIF combat injuries involve some type of brain damage --It is estimated that approximately 10% of all military personnel in Iraq has sustained a TBI

29. Improvised Explosive Devices  Cause blast injuries (four categories), a major factor in TBI for OIF and OEF veterans Primary: effects of the wave-induced changes in atmospheric pressure following the blast, resulting in damage to the lungs, bowels, and middle ear Secondary: damage by objects put into motion following the blast Tertiary: injuries from the person hitting the ground or an object following the blast

30.  Quaternary: injuries causes by toxic inhalation, burns (chemical or thermal), exposure to radiation, asphyxiation (includes carbon monoxide and cyanide after incomplete material combustion and breathing in dust from coal or asbestos)  One example of a quaternary caused injury occurs when an IED is constructed with ball bearings coated with various poisons)

31. The Signature Wound--TBI  It is estimated that 60-80% of military personnel that experience an IED attack will subsequently acquire a TBI  Those who have experienced a blast- caused TBI also face an elevated risk of also incurring post-traumatic stress disorder (PTSD)

32. TBI-PTSD risk factors: 1.Memory of the TBI incident 2.Learning about the TBI incident after regaining consciousness 3.Being in a combat environment of prolonged stress and concerns about collateral damage 4.TBI may affect the functioning of the neural systems that regulate anxiety, which may serve to further impair one’s ability to control one’s fear reaction 5.Damage to the hippocampus and amydala may increase the progression of PTSD symptoms

33. Treatment:  Unclear progression of symptoms and adjustment difficulties of co-existing TBI and PTSD  Possible successful interventions with cognitive- behavioral treatment, medication management, and virtual reality treatments  Intervention strategies and treatments are funded and conducted by the United States Department of Defense and the Department of Veterans Affairs

34. National Polytrauma System of Care  Funded by the VA  Four Polytrauma Rehabilitation Centers in Richmond, VA, Tampa, FL, Minneapolis, MN, and Palo Alto, CA  Provide acute care and inpatient treatment and consultation from various medical specialties  Each Polytrauma site also serves as a Polytrauma Network Site with 17 other geographically diverse locations that make up the National Polytrauma System of Care  Help the veteran with TBI and other disabilities to make the transition to their home communities