Guides on Support Needs of SCI Adults

Review and communicate your needs with these practical guides.

Proper care and support are crucial to the rehabilitation of people with spinal cord injury (SCI). Since everyone has different support needs, it is important to review and communicate your needs well with your caregivers in order to receive satisfactory care. Sometimes this can be hard. Not everyone is a good communicator or simply there are too many ideas and details that you don’t know where to start. A good guidance on SCI support would be helpful in such situations. Therefore, we would like to introduce the following three guides to you. They may come in handy at different stages of your SCI journey.

Shepherd Center’s SCI caregiver guide – a user-friendly and helpful guide for the early stage of SCI.

1. “Rebuilding, together – a guide for caregivers”

At the early stage of a SCI journey, many are likely to be overwhelmed physically and emotionally by all the new information and challenges flooding in. During this critical time, family members and friends, despite equally overwhelmed, are likely to be the first persons to take charge of issues when the person with SCI cannot handle them on their own. 

This 12-page guide would be most useful for this period of time. It presents the fundamental information on what a caregiver can expect and do for their family member or friend with SCI, from hospital to rehabilitation. The brief yet comprehensive guide was written by Shepherd Center, an American hospital specialized in SCI and other neuromuscular diseases and conditions. It is easy to read and doesn’t overload you with information.

Tables and lists like these are offered in the icare guidance helping you estimate the level of support you need.

2. “Guidance on the support needs of adults with spinal cord injury”

As the SCI journey continues, it is necessary to review the support you have or need. This guidance produced by icare (an Australian insurance and care provider) will be a good reference for you. Its information was based on expert’s practical knowledge as well as first-hand experience of people with SCI. If you are not sure whether you need a carer or support worker, read page 12-15 of the guidance explaining the differences.

Within its 94 pages, the guidance includes extensive lists of assistive technology as well as charts and tables illustrating in detail the possible support you may need from a support worker. All information is sorted according to different levels of injury. This serves as an excellent and convenient reference for your discussion with your family members, friends or healthcare professionals on the level of support you need.

A checklist makes it easier to review with a support worker the care you need.

3. “How to Successfully Hire and Manage a Personal Care Assistant for People with Spinal Cord Injury”

If you finally decide to hire a support worker, this guide will be of great help. Again published by Shepherd Center, this 16-page guide explains the options you have for personal assistance services and provides sample advertisements and forms for your recruitment. Although the guide is based on the situation in the U.S., most samples are transferable to situations worldwide, for example, the personal needs assessment and checklist for self-care activities. This guide can help you better clarify your personal needs and screen for the most suitable support worker for your unique situation.

In addition to the above English guides, you can find more tips on daily life and mobility in our Wiki available in four languages. These useful tips were gathered from our SCI specialists at Swiss Paraplegic Centre and can be easily understood and followed.

How often do you review the support you need? What challenges do you have while communicating your needs? If you know any practical SCI support guide in other languages, please share with us.