In a previous post, I covered an introduction to advocacy and highlighted some strategies you can use to be a better self-advocate.
This post will further discuss the nature of support networks and how to identify, access, and maintain them.
I am here to help you -- check out my website for more details.
Self-advocacy: Struggling with Self-knowledge
How well you understand yourself, your strengths and weaknesses, values, and interests will directly influence how you identify your needs.
Ex. a high schooler with a disability in reading is unaware of their IEP goals and has a limited understanding of their disability.
A person with an intellectual disability has difficulty expressing their interests concisely to others, making initiating relationships more taxing.
A person with ADHD has a history of emotional outbursts whenever they feel put down or criticized.
In these instances, each individual is facing a setback in their self-advocacy due, at least in part, to an underdeveloped appreciation for their disability and the nature of its impact on them.
Parents/caregivers need to keep the person with a disability involved in the conversation about their educational planning.
Educational professionals should facilitate opportunities for self-discovery and reflection.
Support networks work when a support system is consistent and addresses the heart of the weaknesses a disability presents.
Support Networks that Foster Self-advocacy
You often read about accessing support networks and their importance. However, how this is accomplished is typically underexplained. The following will outline a support network, how it is structured and maintained, its limitations, and what can be done to foster self-advocacy for the central person.
Anatomy of Support Networks
Support networks involve people united to help individuals achieve their goals and address issues stemming from a disability or disease. These networks help with setbacks and hardships and provide relief or guidance when such situations arise.
The types of people involved may be:
Parents/caregivers.
Teachers, school psychologists, counselors, social workers, etc.
Neighbors, extended family, friends.
Colleagues at work or in school.
Doctors and other medical staff.
Many people can be involved, and their focus or approach can vary considerably, hindering communication and interventions. That is why consistency among all involved needs to be maintained.
Whether establishing or maintaining IEP goals in the school or therapeutic strategies at home, consistency will make or break progress.
Designating a group leader is essential to help coordinate efforts and strengthen communications.
What are the Key Aspects of a Support Network?
Support networks provide a person with disability opportunities to communicate their needs and issues and to celebrate their triumphs.
Goal setting and monitoring their progress.
Providing the person with guidance and feedback.
Increasing quality of life and preventing social isolation.
Fosters resiliency to bounce back from setbacks.
Stakeholders within a support network can observe progress, collect data, and interact with the person regularly.
Information can come from formal and informal environments, providing a rich mosaic of perspectives.
Relationships with the person can be more authentic when those closest to them are involved.
It helps the person to maintain accountability.
Importance of Social Relationships that Boost Self-advocacy
Social relationships are crucial to people's mental and physical well-being, especially those with disabilities. They help to prevent (or limit) the possibility of isolation or loneliness and combat stigma.
Establish a framework for advocacy through modeling and support.
Help a person with a disability to build self-knowledge and self-efficacy and facilitate self-advocacy skills.
Reduce the internalized sense of being a “burden” through ongoing support and social participation.
The size and relative proximity between the person with a disability and their network stakeholders also play a foundational role in cohesion and effectiveness.
Clear roles need to be defined for each stakeholder.
Each participant must be educated on their purpose and given strategies to help.
All participants need to be aware of the goals and potential setbacks involved.
A willingness to help!
The central figure here is the person with a disability, their needs, and who is involved in their support network. The person and/or designated leader must be critical of:
goals and progress being made;
the size, density, and roles of group participants; and
how communication will be maintained.
Limitations of Support Networks
Upfront: The more people are involved, the more work and coordination are required. Opinions and approaches can vary, and biases limit observation.
A core group must be established first to help set goals and coordinate responsibilities.
The length of time (short-term or long-term) will reflect the nature of the disability and the overall support required.
Time and money are two significant setbacks in establishing and maintaining support networks. Depending on the nature or severity of a disability, smaller or larger systems of people may be involved.
It is important to outline a realistic timeline for support and those essential to meeting goals.
Insurance and personal financial involvement may also limit these dynamics.
Collecting information and paperwork is time-consuming and can be overwhelming for the person responsible for its completion.
Coordinating appointments, transportation, and follow-ups also present (sometimes) unforeseen delays in progress.
There’s also the human factor: fatigue, attrition, communication breakdowns, and significant setbacks.
Establishing Your Support Networks to Foster Self-advocacy
Goals need to be set that are focused on the short-term and long-term and must be realistic. The person and their core group must also factor in milestones, issues likely to occur, and significant hardships.
Goals must be broken down into smaller pieces to highlight the required skills and strategies.
What expertise is needed to meet each goal or milestone?
This will inform the specialists, groups, or organizations that may be required.
Temporal requirements are based on the perceived time required to accomplish these goals.
Financials, insurance, appointments, etc.
Progress monitoring and data collection.
Referrals are for future progress or are based on setbacks.
Coordinate with stakeholders to maintain communication lines and frequency.
Maintaining Your Support Network
The structure of an existing support network can help alleviate breakdowns; however, consistency in communications and expectations must be upheld.
Providing support can be stressful and complicated when managing other responsibilities.
The interconnectedness of stakeholders, roles, responsibilities, and involvement requires critical self-analysis and outside feedback.
It’s vital for the person receiving support to have periodic reviews of the overall effectiveness of the group and each individual’s participation.
Establishing regular meetings at fixed intervals helps prevent breakdowns or complacency.
A determined timeline for progress can help coordinate the total number of stakeholders involved.
Balancing between what is objective and subjective in terms of progress.
For example, it may be more difficult for close family or friends to be objective in their observations regarding progress. A lack of expertise in certain aspects of a disease or disability may also hinder this.
Conversely, it can be equally difficult for the person receiving support from those closest to them to be objective about the effectiveness of their supporters.
Volunteering to help someone can be costly in terms of time, so accounting for attrition must be factored into the beginning stages of planning.
Support Networks that Promote Self-advocacy
A well-structured and functioning support network will focus on the needs of the central individual and provide them the opportunities to advocate for them. In addition, maintaining and monitoring the effectiveness of the support network will require the central person to communicate what is and isn’t working.
Empowerment means feeling like an active participant throughout the process; this helps with resiliency and mitigating setbacks as they arise.
Self-determination and self-knowledge are fundamental to self-advocacy.
Knowing your goals and persisting through challenges to find progress.
Maintain the motivation to achieve, but adjust your planning whenever required.
Role modeling and practicing in a safe space can also help the central person learn how to advocate for their needs and be supported throughout.
Practice skills and get feedback.
Emotional support throughout.
Collaboratively identify needs, supports, and people.
Work on the content and clarity of communications before reaching out for help.
Inclusivity and destigmatizing disability.
Incorporating diverse perspectives and viewpoints which may help with new novel solutions.
Giving everyone in the support network a voice and an open line of communication.
Socio-cultural perspectives can be factored in.
It allows everyone involved to be better educated and knowledgeable regarding the central person’s needs and disability and how to support them best.
Assessing overall satisfaction from the central person and external performance of their supporters.
Focusing on what is working objectively based on data analysis.
Personal analysis.
Adjusting for changes in the number and roles of supporters over time.
Keeping expectations and boundaries clear and concise.
Breaking Down Support Networks that Enhance Self-Advocacy
Support networks exist to help a person set goals, identify needs, and plan for challenges or setbacks. Everyone involved is doing so with a clear understanding of their role and how they can help foster positive change or support when issues arise.
This is a labor of care and love; supporting someone else can also be a taxing process for the supporter. Each participant deserves a voice and a chance to contribute to the overall planning or implementation of interventions.
Well-structured and managed support networks can coalesce into a constellation of interconnected people driving toward a common goal. The prosocial aspects of support, guidance, feedback, and care can carry over into other facets of everyone's lives. However, it requires a lot of work, sacrifice, and determination. Openness to new ideas, challenging one’s conventions, and actively challenging stigma help keep any network running optimally.
Lastly, they mean support in the most crucial times for the central person. Providing social, emotional, mental, and physical support whenever needed to prevent isolation, loneliness, and undue hardships.
Respectfully,
Dustin.
Commenti