Living with spina bifida can be a challenging experience and it is important for adults with the condition to have support in order to maximize their potential. This guide will provide an overview on how to access the necessary services and resources available to those living with spina bifida, as well as tips and advice on managing the condition.
Understand the Medical Aspects of Spina Bifida.
Medical support for those living with spina bifida is crucial to ensure it is properly managed. Understanding the types and severity of spina bifida, as well as its different stages and any associated medical issues, can help guide the type of treatment and management plan needed. This can involve medical checks, medication and rehabilitation services. Researching any available clinical trials or ground-breaking treatments can also be beneficial in helping to manage the condition more effectively.
Identify Available Support Services.
Identifying available support services that specialize in spina bifida is key in helping you understand what is available to help someone living with the condition. This can include information on different programs, grants and funding opportunities designed to support those with spina bifida. It’s also important to understand any local support groups or networks which can provide additional help for individuals and their families this may not necessarily be medical related but can help provide emotional or practical support depending on needs.
Instill a Culture of Inclusion and Empowerment.
Adults living with spina bifida need to feel empowered by their healthcare providers, community resources, and family members and be included in decisions that affect their life. Developing a culture of inclusion and empowerment means giving individuals the tools & resources necessary for them to thrive as well as providing access to information about different support services and opportunities that may not be easily accessible. This can include helping them build life skills such as decision-making, communication, problem-solving, etc. which can potentially lead to increased independence.
Develop an Employment Plan.
Finding and maintaining viable employment can be a challenge for individuals with spina bifida. An individualized Employment Plan can provide an opportunity to explore their unique strengths, identify potential employers and available support services. Seeking counseling and guidance from adults already employed in the community may be beneficial as this allows for request of specific types of job descriptions in order to find meaningful employment opportunities that best fit their interests and desires. Additionally, it is important for individuals with spina bifida to identify any assistive devices or accommodations needed in order to fully participate in the workplace.
Utilize Technology to Connect with Others and Stay Healthy at Home.
For individuals living with spina bifida, taking advantage of the rapidly advancing technologies and supports available can help to maintain connections with peers or family and ensure that support systems remain intact, even during distances. Whether utilized for prompt access to healthcare practitioners; or, use in practices such as telemedicine; or to stay connected virtually with others, technology can provide many opportunities. Technology can also be used to engage in activities such as music, exercise, exercise classes and educational programs while remaining safe at home. Additionally, improved social media tools offer the ability to build personal networks and connect people from various backgrounds.