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NEW TBI PROGRAM IN FULL SWING 2002
In September 2002, the US Department of Health and Human Services Maternal and Child Health Bureau awarded P&A a grant to work with South Carolinians with traumatic brain injury (TBI). South Carolina was one of 28 state P&A's selected for TBI grants. This grant has allowed us to create a new program called Protection and Advocacy for Traumatic Brain Injury (PATBI). PATBI addresses the problems TBI survivors face when attempting to access services. The program focuses on creating systemic change as well as providing individual advocacy services to TBI survivors.
As part of the PATBI program, I started to work at P&A on November 1, 2002 as a TBI advocate. Originally from New York, I received my Masters in Social Work from Adelphi University on Long Island. My past work experience includes working with the Disability Determination Division of the Department of Vocational Rehabilitation and serving as a counselor for an assisted living program.
Traumatic brain injury affects the lives of many individuals in South Carolina. According to the South Carolina Traumatic Brain Injury State Advisory Committee's 2002 action plan, an average of 9,000 emergency room visits, 2,800 hospital discharges, and 1,000 fatalities are recorded annually as a result of TBI. Additionally, each year at least 1,000 individuals develops residual deficits that interfere with daily living.
A key objective of the PATBI program is to find out what challenges South Carolina's TBI survivors are facing so that we can help them overcome these barriers. In order to do this, I am visiting TBI support groups across the state. Other P&A staff sometimes accompany me. We tell support group members about P&A and the new PATBI program. We also spend time listening to support group members talk about their needs and concerns. We encourage group members to call us if we can help them. In addition to visiting TBI support groups, I attended the NC and SC Brain Injury Alliance's conference in April and have hosted two brain injury focus groups. P&A staff will continue to attend state and national TBI conferences, host brain injury focus groups, and conduct self-advocacy training for individuals with a TBI and their families. We have met with the Brain Injury Leadership Council, the Brain Injury Alliance of South Carolina, the TBI Training Institute, Roger C. Peace Rehabilitation Hospital, and the Head and Spinal Cord Injury (HASCI) Division of the SC Department of Disabilities and Special Needs (DDSN). Our goal is to work in partnership with these agencies to identify the service barriers faced by individuals with traumatic brain injuries and to ensure the quality and timeliness of service delivery.
In addition to giving us the opportunity to address the systemic problems faced by TBI survivors, the PATBI program has improved P&A's ability to provide advocacy services for individuals with a TBI. Through targeted outreach efforts, we have been able to supply a number of TBI survivors with information about the services P&A offers. These services include information and referral, assistance moving from institutional to residential settings, publicity and individual and systems advocacy. Some examples of individuals we are advocating for include a young man who suffered a TBI as a result of a motor vehicle accident. This man is currently living in a nursing home and is not working. He desperately wants to move into the community and return to work. I am currently working to help him achieve his goals. Another young man we are working with is having difficulty accessing services through the HASCI division of DDSN. With the help of other P&A staff, I have begun advocating for him to ensure that he receives all of the services to which he is entitled.
By working with these individuals and others, P&A hopes to improve the ability of all TBI survivors to access the services to which they are entitled. Additionally, by collaborating with TBI organizations throughout the state, we will work to expand the quality and range of services available to the TBI community. As a TBI advocate for P&A, my goal is to meet the needs of South Carolina's TBI survivors. Please contact P&A if you think I or another staff member may be able to assist you or if there is a TBI issue that is of particular concern to you.
Head and Spinal Cord Injury Division
Department of Disabilities and Special Needs
PO Box 4706
Columbia, SC 29204
1-866-867-3864
The HASCI division of DDSN provides services to individuals with head and spinal cord injuries. Services provided may include service coordination, information and referral, home modifications and assistive technology, personal assistance, and services and support to improve functioning, increase productivity, and promote self-determination.
Depending on their limitations, children with brain injuries may receive services through the Mental Retardation and Related Disabilities (MR/RD) Division of DDSN.
Medicaid Waiver Services Provided Through DDSN
Individuals who are Medicaid eligible and require the level of care provided in a nursing home or Intermediate Care Facility for Mental Retardation (ICFMR) may be eligible for the HASCI Medicaid waiver. Services provided under the waiver may include attendant care and personal assistance services, respite care, some nursing care, prescribed drugs, specialized supplies and adaptations, communication therapy, psychological and behavioral services, Personal Emergency Response System, residential and day habilitation, physical and occupational therapy, prevocational services, and supported employment.
For more information about the HASCI waiver contact P&A and request our manual, "SC Medicaid Waiver Program: A Guide for Self-Advocates."
Brain Injury Alliance of South Carolina
920 St Andrew's Road
Columbia, SC 29210
1-803-731-9823; 1-800-290-6461
The Brain Injury Alliance, our state's chartered affiliate of the national Brain Injury Association of America, was developed by people with brain injury, their families, and concerned professionals in an effort to provide information and support to those who have experienced a brain injury. Services include Support Groups, Informational & Referral, Education & Advocacy, and Injury Prevention.
Babcock Center's Phoenix Services
Columbia, SC
For more information contact Leslie Adkins, Director, at 803-799-1970. Offers an array of programs and resources, including a drop-in center, independent living skills training and supports, social/recreational activities, vocational opportunities, and residential options.
HASCI Community Opportunities
Greenville, SC
For more information contact Kay Robertson at 1-864-679-2400, Ext. 11. Provides a casual environment where head and spinal cord injury survivors can develop new friendships, participate in meaningful activities, and learn new skills.
HASCI Community Opportunities
Charleston, SCFor more information contact Richard Aust at 1-843-852-5550. Offers social opportunities as well as a place to view, try, and learn about a variety of topics.
HASCI New Horizons Center
Conway, SC
For more information contact Mary K. Jensen at 1-843-488-1309. Drop-in center open five days a week. Services available include: use of computers, group activities in the community, a Steps to Health Program, a current events group, a brain injury support group, life skills training, and a rehab supports program.
SC Vocational Rehabilitation Department
1-800-832-7526
The Department of Vocational Rehabilitation has a number of counselors throughout the state who are specifically trained to provide services to individuals with a traumatic brain injury. When contacting the Department of Vocational Rehabilitation you may request to be assigned to a TBI trained counselor.
Centers for Independent Living
Private, nonprofit, consumer-controlled entities that provide non-residential and non-medical Independent Living (IL) services for people of all ages with all types of disabilities throughout the state. Services offered are advocacy, teaching of independent living skills, peer counseling, and information and referral. Call the P&A hotline (866/275-7273) for help in locating a center near you.
South Carolina Assistive Technology Project
Located at Midlands Center, Columbia, SC
1-803-935-5263
Services include demonstration equipment and loan center, training on assistive technology options for service providers and consumers and technical assistance for consumers and assessment teams.
National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013
(800) 695-0285 · /TTY
NICHCY is the national information center that provides information on disabilities and disability-related issues, focusing on children and youth (birth to age 22).
Pro-Parents
Parents Reaching Out to Parents
2712 Middleburg Drive, Suite 203
Columbia, SC 29204
1-800-759-4776
Provides information and training about education to families of children with all types of disabilities.
Related Websites
National Association of State Head Injury Administrators
A number of fact sheets on TBI in both English and Spanish are available to download.
Waiting while Someone is in a Coma
Information for families during early stages of medical care.
First step in education about traumatic brain injury.
Head Injury Hotline for Survivors
This site, which is maintained by brain iinjury survivors, provides survivors and their families with information and support.
The Perspectives Network
Information and support for survivors and families.
The TBI Chat Room
Site provides participants with an opportunity to connect with and support one another.
