Families as advocates: Activate your power to create positive change

From the Editor

Whether you are a parent, grandparent, or sibling of someone with a disability, you have no doubt had to advocate for your loved one in one or more areas of their life such as education, housing, or employment. Do you feel like an effective advocate?

In this issue of Bridges, we give you tips to tackle any advocacy situation by breaking down the steps to effective advocacy. We’ve included a section on cultural differences to help you gracefully navigate any conversation or meeting with the many diverse people you will engage.

Spring is here! Hope you enjoy the gradual warming and new life the season brings.

Best to you and yours,

Maria Schaertel

The difference between "empowering" and "activating" people's power

Word YOU HAVE POWER in multicolor paint on a plain white background

We generally think of “empowering” someone to be a good thing. Our intention is to share tools and strategies to help someone gain confidence in their ability to achieve a goal or recognize their talents.

But “empower” can be interpreted from those on the receiving end as “through your kindness and benevolence, you are giving me my power back.” This can be viewed as paternalistic and demeaning. So you may want to keep this subtle message in mind when you use the word “empower.”

Another alternative to using the term “empower“ is to “activate” people’s power. This phrase acknowledges that each of us already possesses power and may only need support or encouragement to show it.

Adapted from “School Climate and Culture” webinar, by Coordinated Care Services

What is an advocate?

An advocate is someone who speaks or negotiates for a desirable outcome for themselves or others. Advocates support and help create opportunities to obtain what is needed.

Parents and family members, you are your child’s best advocate.

You have knowledge about your child that no one else has and you bring a unique perspective to advocating. And like your child, you have rights to participate in school meetings, life plan meetings, and more. For instance, parents are equal members of the Committee on Special Education (CSE). And parents have the right and responsibility, when services are self-directed, to help advise their children on choosing staff and services.

Advocacy steps

Identify your child’s current concern or need. Once the current need is determined, the following steps will help to focus on the ultimate goal
Obtain all the information. For example, in a school situation, you have the right to ask for and read records about your child, including evaluations.
Look and listen to other viewpoints. Consider and discuss these with the team you are working with. This will give you a better understanding of how the need is perceived by others.
Reach out to those who work with your child. For example, reach out to your child’s community habilitation staff or job coach and obtain factual information to help clarify as needed.
Research and obtain additional information as needed. It is important to learn about your rights and other resources available. Access information online, call technical support, or talk to a specialist at Starbridge.
Now it is time to make a plan: develop an agenda that includes goals, strengths of your child, and needs of your child. Provide ideas of how these needs can be supported to obtain the desired goal.
Consider all alternatives. Be open to listening and allowing alternative ideas to be presented and used. Alternatives can provide additional data.
Ready to take action? Present your point of view but don’t forget to include all the ideas and solutions you researched.

Communication is key

Advocacy is a skill that combines knowledge, good judgment and creative problem solving. Building skills for advocacy also requires building and promoting the ability to engage with a wide range of people. To engage with others effectively, communication is needed!

To communicate with impact, the goal is to: obtain what is appropriate, create opportunities for success, establish relationships, and to establish and continue negotiations.

Negotiation is a method by which people settle differences. It is the process of discussing something with someone in order to reach an agreement.

How to prepare for communicating and negotiating

Be aware of your emotions. Feelings can influence the way people overcome conflict, reach agreement, and create value! Emotional control can play an important role in successful communication and negotiations.

Realize that teams will have rough spots. Know what your “hot buttons” are – what triggers your emotions? Also, examine your assumptions. By being aware of hot buttons and assumptions, we can be more effective team members.

Be aware that:

Everyone is an individual.
Personalities can be a distinct challenge in any interaction.
We all have our own opinions and, at times, our own agendas.
We all have different communication styles.

Successful communication is….

The ability to listen, without interference, to the message being delivered.

Discussing a concept in an open, receptive manner that allows both sides to hear and understand the message and appropriately respond to that message in a constructive way.

Assuring that discussion points are presented clearly so that the issue is accurately understood.

Understanding that communication is not limited to what we can hear. It includes body language - messages or responses sent through facial expressions, eyes and body. Correctly interpreting body language is challenging, yet necessary to accurately understand the message delivered by the sender.

We may not always agree. It is not the fact that we disagree; it is HOW we disagree that makes all the difference in good communication.

Adapted from “Families as Advocates: Your role at the CSE” workshop, by Family Support Service Program Coordinator Maritza Cubi

Tips for respecting cultural differences in communications

Slow down when you speak. This allows those who have a different language native language time to interpret what you are saying.

Speak clearly and concisely. Avoid using ambiguous or dual-meaning words. One of the problems with the English language is the many meanings one word can have. For example, “object” can mean a thing, such as a box, or it can mean you disagree with something.

Smile and be open. Your body language communicates your acceptance - or non-acceptance - and respect, as it helps put listeners at ease.

Be careful when using slang. Slang words are unique to individual cultures and not always interpreted correctly.

Be aware when using humor that what is funny in one culture might not be in another.

Adopt a formal communication approach until you develop a rapport with the person or group.

Stay away from using negative questions or answers. Double negatives are confusing enough to those with English as their native language. In a cross-cultural situation, double negatives are easily misunderstood.

Ask for feedback. When you encourage two-way communication, this helps prevent misunderstandings and clears up questions people might have.

Summarize what you have said. Don't assume that just because you said it, everyone understands. Repeat what you have said in a different way, summarize it and allow people the time to grasp what you have said. By summarizing what you have said, you can verify that everyone is on the same page.

Adapted from How to Use Good Communication Skills for Cross-Cultural Diversity

If an interpreter is being used, make sure you connect with the individual too and not only the interpreter. Pausing and asking for feedback throughout the conversation helps clarify and makes the person feel included.

It is important to look at the person directly, smile, and check for understanding throughout the conversation.

Acknowledgement, being flexible, and showing empathy and respect goes a long way towards having effective communication!

From Maritza Cubi, Starbridge Family Support Service Program Coordinator

Want to become an effective advocate for your child's success in school?

Activate YOUR POWER with our

2021 Family Empowerment Series - Spring Session

First session: April 1 ~ 6:30-8:30pm

Students who have disabilities or suspected disabilities may be eligible for additional supports and services through their school. For families, the acronyms and processes can seem overwhelming to start. In this FREE 6-session series, you will learn useful information and effective strategies to help you and your child navigate special education options.

Registration is required. You can view the series schedule and topics on our website here.

To register, please contact Laura Arrington at 585-224-7332 or email [email protected]

Presented in partnership with The Arc of Livingston-Wyoming and Parents Helping Parents Coalition of Monroe County

Additional resources

Advocating for your Child – Getting Started

Adult Years (18 and over) Special Needs Services and Support

Sibling Leadership Network

Grandparent Group

Visit our website

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