Bulletin #2026, Establishing and Using a Support Network for Individuals with Disabilities
By Richard Brzozowski, Maine AgrAbility Project Director, University of Maine Cooperative Extension
Beatriz M. Rodriguez, Project Manager, North Carolina AgrAbility Partnership
Rhonda Miller, Project Director, AgrAbility, Utah State University
Leslie A. Forstadt, Human Development Specialist, University of Maine Cooperative Extension.
The purpose of this fact sheet is to help individuals with an injury, disability, or chronic illness identify, establish, understand, and use a Support Network.
Why is a Support Network Needed?
If you are a farmer or farm worker with an injury, disability, or chronic illness, you may need a helping hand to get through hard times when you can’t do what you normally do. You may be asking yourself:
- How will I get daily tasks done?
- How will I pay my bills?
- Do I have the health care coverage to take care of this?
- How long is it going to take for me to be back to normal?
- Will there be a new normal?
Knowing what resources are available for you is crucial. It can be overwhelming, burdensome, and frustrating to sort through all the information if you even have all the information you need! Having someone help you address all the issues and navigate through the different resources can make a huge task seem more manageable and minimize the stress.
What is a Support Network?
Support Networks are meant to help people with disabilities address issues and reach their goals. A “disability” can be defined as a physical or mental condition that limits a person’s movements, senses, or activities.
A support network is comprised of the people around you that can help in times of trouble, distress, hardship, and sorrow. A network can be a very important resource when going through difficult times. Support Networks can be long-term or short-term in scope and the people in them might be family members, neighbors, friends, and colleagues. A network can help provide a range of supports like physical assistance with tasks, sharing expertise about health care or business matters, helping with childcare, easing the stress you may feel, and just being there to listen to your concerns. Some networks are created around you from birth (family); others get established with people at school, in the community, the institutions or programs you work with, health care professionals, and beyond.
Social interaction is an essential component of life for everyone. Each person in your life can have an impact on how you see yourself as part of your community. Social contact can help you cope with stress and significant life changes and help you know you are valued. Knowing that you are valued is an important psychological factor in helping overcome negative events and setbacks. Your social contacts and connections will provide this sense of value and will help nurture gratitude and positive thinking. When faced with illness and disability, having a network of individuals who support you, such as family, friends, and community members, can lead to quicker recovery, reduced stress, better quality of life, and longer life expectancy.
Asking for help is not easy. In your community, you likely play an active role and offer to help others-this is very true of farmers and members of farm teams. But facing a disability or chronic condition can make you feel vulnerable. You may fear losing independence or worry about becoming a burden for family members or caregivers. These worries may lead you to feel like you aren’t valued, and you may feel down or depressed.
Who is involved in effective Support Networks?
As pictured in the diagram, a Support Network is a nested model, with you at the center, surrounded by teams of individuals. These individuals are included in a Support Network for a variety of reasons: some are your relatives or friends, some are community members, some are from organizations, and some may be people with specific skills or backgrounds or of a specific profession. The professions will likely be health-related, such as occupational therapists, physical therapists, medical doctors, physicians’ assistants, or nurses. Others will help with your psychological well-being, such as counselors, therapists, or clinical psychiatrists. The makeup of a Support Network depends on your needs. You might also include agriculture-specific organizations and institutions like Cooperative Extension, the USDA Farm Service Agency, Farm Bureau, and others.
What are the key functions of a Support Network?
Members of a support network should:
- focus on you as the individual, your best interests, and your goals
- interact or check in on a regular basis
- give advice if you ask
- identify needs to help improve your quality of life if you ask
- support you to develop a plan
- provide suggestions to safeguard the future if needed
- ease your stress by listening, reflecting, and supporting you
Types of Support Networks
Depending on the situation and the needs of the individual, a support network can vary in length and makeup. In general, a circle of support can be:
- Short-term or temporary Support Networks – For example, a farmer might have a broken leg or a hip (or knee) replacement and not be able to farm as usual for a number of weeks.
- Long-term Support Networks (for the long haul) – For example, a farmer might have a chronic illness such as ALS (amyotrophic lateral sclerosis). ALS also known as Lou Gehrig’s disease is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. This disease is debilitating over time. The support network will be essential to help the farmer remain as active as possible.
Establishing a Support Network
Establishing a support network is a critical first step – especially if you (or the person you are helping) have recently been injured/disabled or are facing a long-term disease that will progressively get worse. As a starting point, you may want to look at establishing a Support Network that can help you/them navigate the first couple months to years of adjustment to the new “normal.”
Step 1. Identify the likely situations (or issues) being faced, or that you will face, from your injury, illness, or disability. Consider the physical, psychological, financial, and relational impacts that can benefit from support.
Step 2. Identify goals for the future.
Step 3. List specific milestones or actions to work toward to reach your goals.
Step 4. For each goal, list the areas or skills, or specialties that would be needed to get the best input, or to be able to make this happen.
Step 5. Once you have identified the area(s) of expertise that are needed, then you can identify specific people, groups, or organizations to ask that may be able to help you.
Step 6. Identify the working structure of your Support Network. For longer term issues (e.g., a child with disabilities that will be transitioning to adulthood), you may want to establish a Support Network that can help for several years. If you are organizing this for your child, setting this up as a longer-term plan will help them have a consistent group of supportive individuals around them as they navigate the transition to adulthood. For a new or sudden disability or illness, you may start with a Support Network that can assist for 6 months to one year.
The meeting style and frequency will need to be considered. Will you want your Support Network to meet formally or informally? Will you contact them when needed or have a more formal structure – such as meeting over coffee once a month? How often will you like to meet with your network (individually or as a team) – twice a month, monthly, quarterly, as needed, etc.?
Step 7. Invite members to join your Support Network. Once you have identified the expertise and general structure for your Support Network, the next step is to ask people if they will help you by being part of it. Remember, in most cases, these people are volunteering their time and effort, so don’t be discouraged if someone says that they don’t have the time to assist.
For example, if you were recently diagnosed with Multiple Sclerosis (MS), you will most likely want to look at the progression of the disease, the limitations you are likely to face with time, and how to identify and obtain the resources that can help address those limitations. There may be established support groups that can help you. In the case of MS, the National Multiple Sclerosis Society has “navigators” that can help people find resources. For your farm/ranch operation, you may want to look at the tasks that need to be completed and/or that are likely to become more difficult with time. Will you need to hire some extra help? Will you need to make modifications? AgrAbility is a resource that can help with the farm operation side. You may also want to consider finding resources that can help you navigate the financial side and healthcare. Do you qualify for Social Security Disability? How will you cover expenses that aren’t covered by insurance, Medicare or Medicaid? Don’t forget to check on resources that are offered by your state or local community.
Maintaining a Support Network
Support Networks require maintenance. A formal Support Network will have a leader or facilitator to keep things running smoothly. This person can be you, but that may not be a task you feel up to managing. A family member or friend can also assume this role. Meetings should be held – typically monthly or every 2-3 months. An informal network also needs to have some structure and guidance [to be effective.
Your Support Network should be reviewed periodically (e.g., annually). Your needs may change with time. Is your Support Network able to meet your needs? Are some areas falling through the cracks?
Having a periodic review of your needs along with the assistance that you are getting from your Support Network can help ensure that you are getting the help that you need.
Here are a few sample questions that you might use to evaluate your Support Network:
- Is my Support Network helping me and my situation?
- Am I getting all that I need from my Support Network?
- What are some results that have occurred in the past month because of my Support Network?
- Are there particular individuals in my circle of support who are not involved or effective? Do I need to make my needs known more clearly?
As you evaluate your Support Network, it is important that you identify your needs and your desires. It can be helpful to state these as goals or objectives. Evaluating each objective on a sliding scale of 1-5, or 1-10 (poor to excellent) will help you identify areas that may need changes or improvements. If improvements, or new areas of support, are needed, your Support Network can assist you in making those changes.
It is important to have realistic expectations and remember that the people in your Support Network are likely volunteers. Things in their life may change, and they may be limited in how much they can do. Over time, aspects of your life and also aspects of the Support Network may encounter roadblocks. Having a group that can help address and find solutions to those roadblocks is one of the benefits of a Support Network.
Addressing the possible limitations of a Support Network
Your Support Network can be as effective as you make it (or someone else makes it). In establishing a Support Network, try to include enough people so that the support you receive is effective. Think about the types of people (friends, family, specialty area, availability, etc.) that can support you in your current situation or through troubled times. Think about each person’s location in relationship to you. An effective circle of support takes time and energy. For the circle to be effective, someone must manage it.
Tips for establishing a support network
- Working toward independence for the person in focus is typically the goal of a network of support.
- You are the core of the network, and your need for help drives the process.
You should have identified goals.
- The people who are in your Support Network should be willing and be available to participate as needed.
- Communication methods – Each person in your Support Network should be able to reach you and be reached by you as needed. Determine the best way to connect – in-person, by phone, text, email, etc.
- Workload of members – Some people in your Support Network may have a heavy workload. Be as patient as possible in receiving assistance.
- Leadership of the circle – It is good to identify the leader or facilitator of the circle. Who will act as the leader, coordinator, or facilitator of the group? Is it you, or does someone else (like a family member) take the lead?
- Not everyone in your Support Network needs to know each other. How do you keep everyone in the group informed and involved? The Support Network can be as formal as you feel it needs to be. An organized approach might be necessary for some situations.
- Gaps – When there’s a gap in your support, you might not make the progress you’d like or expect.
- Changing needs – As an individual with a disability, your needs may likely change. Your Support Network (members or focus) may also need to change.
Using a Facebook Group as a Tool
If you find social media convenient, you can use it to manage your Support Network. On Facebook, you can create a private group to admit those you want to be part of your group. In the heading of your Facebook Support Network account, you can describe why you are creating the group, state your goals, explain the need for feedback, and stress the importance of having periodic meetings. You can determine the type of meetings, in person, by phone, or virtual, and set the best time to meet. You may not have all the members of your Support Network on Facebook since not all folks may have an account. However, having most of those members in the social media group will simplify the management of information and better communication.
Managing your Support Network through social media allows you to add more volunteers, adjust your goals in the long run, and keep members informed about how your condition is evolving. You can also seek information about other people who may be interested in being part of your Support Network.
Whether you decide to create your Support Network on Facebook, on a different application, or without technology, know that you are taking the appropriate approach when you pick what works for you! Creating a network and surrounding yourself with supports from many facets of your life will help you stay connected, live a more full life, and find adaptations to engage in farming as long as possible.
Maine AgrAbility assists farmers, fishermen, and forest workers to overcome disabilities, injuries, or other barriers so they can continue to work safely and productively in agriculture. This material is supported by a grant from the USDA National Institute of Food and Agriculture (NIFA) under sponsored project number 2018-41590-28715. For more information visit Maine AgrAbility or email firstname.lastname@example.org.
Information in this publication is provided purely for educational purposes. No responsibility is assumed for any problems associated with the use of products or services mentioned. No endorsement of products or companies is intended, nor is criticism of unnamed products or companies implied.
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