Shepherd Center Consumer Advisory Panel

On June 30, 2001, our consumer advocate, Richard Aust, from MUSC conducted a meeting of the consumer advisory panel (CAP) at Shepherd Center in Atlanta, with our collaborator, Sarah Lottes. Five attendees came to the meeting and a handout was given to each individual that asked them to list five common causes of death from spinal cord injury (SCI). Most individuals did well in their choices, probably because the attendees are all active in care for others with disabilities, as well as their own care.

All participants agreed that an on-line survey of basic SCI facts including most common cause of death would be very beneficial for the general SCI population, especially if instant feedback for incorrect answers is provided.

The main discussion for the meeting focused on encouragement to return to work after SCI. Much discussion ensued on educating both employers and potential employees on benefits of hiring people with disabilities, including tax breaks for companies.

There was a conversation on the BOND Project for helping disabled get back to work. Although approved in 1999, the earliest possible date for implementation of BOND would be 2024. The important point of this program is that it would scale down SSDI benefits if person goes over SGA (Substantial Gainful Activity) limit. Currently a person loses their entire SSDI benefits if they go over SGA after their trial work period is done. Some people feel that risking their SSDI benefits for a job which will not compensate them enough is not worth it.

There was also much discussion in the CAP regarding educating people with disabilities, as well as employers, of benefits and opportunities available. A Fact Sheet was discussed that would work to dispel myths:
• Standard document showing statistics
• Tax breaks and other employer benefits
• Could be “blasted” to potential employers, perhaps via various websites
• Could be given to those exiting rehab
• Print out could be available for handout to potential employer at time of job interview

There was a discussion for feasibility of credit card sized fact sheet foldout for one to carry on person. The CAP felt that this would be beneficial to individuals with SCI and all felt that it is a must that people with SCI take responsibility for own health and learn to be an advocate. This card could provide some people with basic advocacy points.

• Possible information to be listed on card would be medical alerts and general information aimed at health care providers for treating one with SCI or other disability.
• Would be especially helpful for one not skilled at articulating needs. Make sure there is a comment to encourage people to write down their questions for the doctor before their appointment.
• It was suggested that perhaps this info could be carried on a flash drive, as well.
• Helpful to have empty space for prescriptions or other personal info

There were many valuable points and tips brought up in the CAP and we can utilize this information for dissemination of our research findings to clinicians and consumers.