SW 644: Issues in Developmental Disabilities Traumatic Brain Injury Charles Degeneffe, Ph.D., CRC,...
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Transcript of SW 644: Issues in Developmental Disabilities Traumatic Brain Injury Charles Degeneffe, Ph.D., CRC,...
SW 644: Issues in Developmental DisabilitiesTraumatic Brain Injury
Charles Degeneffe, Ph.D., CRC, ACSW
Associate Professor of Rehabilitation Counseling
San Diego State University
For today: The context of Traumatic Brain Injury
Family caregiving and sibling involvement
Psychosocial Challenges
Return to Work
Policy developments
Veteran Issues
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
The Causes of Traumatic Brain Injury
0
5
10
15
20
25
30
Falls MVA Sports, etc. Assaults
Percentage of TBI Causes
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
0
5000
10000
15000
20000
25000
30000
35000
40000
45000
TBI ID
FY 98, Per person spending
Families as Caregivers
Economic necessity
Families as Caregivers (cont.)Preferred choice
Family expectations and values
May be an effort to address pre-injury behaviors of person with TBI
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
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
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
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
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
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?
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
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
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
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
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
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)
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
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
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
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
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
Medicaid waiver supports:
1. Residential habilitation2. Transitional housing3. Independent living skills training and development4. Day programs5. Home and community support services 6. Substance abuse/mental health counseling7. Employment/rehabilitation8. Intensive behavioral support/crisis support9. Psychology and counseling support10. Home modifications11. Nonmedical transportation12. Respite care13. Personal care/attendant services14. Skilled nursing15. Home-delivered meals16. Physical, occupational, speech, and cognitive therapies17. Case management
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
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
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
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
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)
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)
TBI-PTSD risk factors:
1. Memory of the TBI incident2. Learning about the TBI incident after regaining
consciousness3. Being in a combat environment of prolonged
stress and concerns about collateral damage4. 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
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
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