Educating Personal Care Attendants
Finding someone who can help you with your personal care can be a challenge. Some individuals will have access to professional caregivers through their insurance or another payor but this is the exception. Others will rely on family members. Some will be able to hire a personal care attendant through their own resources.
Finding an individual who is knowledgeable about paralysis is a challenge. Generally, education about care is provided by you or your family member. It can be challenging to hire someone. Often, the personal care attendant does not understand the complexities of the needs of an individual with paralysis or even if it is explained, the actual actions are unfamiliar to them.
The Paralysis Resource Guide is a resource about all information regarding living with paralysis. It can be used as a structure for questions and procedures for care. Your free copy from the Christopher and Dana Reeve Paralysis Foundation is available here.
Conflicts arise when the personal care assistant does not understand the importance of maintaining your schedule, especially for intermittent catheterization or bowel program times. Even preferences that appear to be nitpicking can be essential to your independence. For example, the personal care assistant may not realize the importance of using a particular type of straw, placement of your joystick for optimal mobility, or items to be located at a particular height. The list of specifics goes on and is particular to each individual with paralysis. Even showing up on time instead of being a few minutes late can lead to the stress of wondering if they will show up at all.
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The Christopher and Dana Reeve Foundation has a blog series about hiring, orienting, and parting with a personal care assistant that provides a great start in this complicated process and relationship.
Managing a Personal Care Attendant
Parting with your Personal care Attendant
A new resource is available online for free from the Kessler Foundation. It is titled: Understanding Spinal Cord Injury: A Course for Personal Care Assistants. The purpose of the course is to understand the needs and experiences of spinal cord injury, improve positive communications, and how to support individuals with SCI. This seven-session course is designed for individuals and their families and home health care providers such as those from agencies, nursing assistants, home health aides, and rehabilitation programs.
This program may assist you with communication, provide information that is explained in a non-confrontational manner, and thoughts that you may see as obvious but may not be so clear to your personal care attendant. As the employer, you can request that the course be viewed to help with orientation and to direct the care you require.