Skills for Effective Parent Advocacy Webinar

Stella: [00:00:00] Well, thanks everyone for joining us today for Skills for Effective Parent Advocacy sponsored by Kentucky SPIN. My name is Stella Beard. I’m the assistant director for Kentucky SPIN and we are so glad that you’ve joined us today for our webinar. I’m going to tell you a little bit about Kentucky SPIN.

This training though is a curriculum created by the National Family Advocacy Support and Training project, which is also a project of PACER center. And so we have partnered with them to present you this presentation today. Kentucky SPIN, we are the special parent involvement network we’re the parent training and information center for the state of Kentucky.

We are funded by the U.S. Department of education under IDEA, and we have been the parent training and information center since 1988 we work with all families and support for families who have children with disabilities birth through age 26. [00:01:00]

We do not act as attorneys though, we do empower families to effectively advocate for their children.

We provide support to help families access needed information and resources. Just like you’re getting today in this webinar. More than that though, we lend a listening ear. So we are actively involved with families on a daily basis. All of our consultants and staff are either family members, parents, siblings to a child with an intellectual developmental disability.

So we really, understand what families go through. I, myself personally have a 23 year old son with an intellectual disability. And so today we are going to be talking about, advocacy and what that means. We have a special guest speaker today, her name is Michaela Evans. She is also our central Kentucky educational specialist with Kentucky SPIN.

So we’re happy to have Michaela join us. She has a son and she can tell you a little bit about that as she gets started. Michaela, can you hear me?

Michaela: [00:02:00] We can, thank you.

Stella: [00:02:01] One more thing before you start Michaela, I want to let everyone know that we do have handouts, that folks can download. You’ll see on your dashboard to the right of your screen, there is a tab there that says handouts. Feel free to download those, but I will let you know. I will be mailing, well emailing those out to everyone in a separate email following the webinar today. If you do have questions throughout the presentation on the dashboard, you see also a tab that says questions. Feel free to type your questions in there.

I will be. We’re looking for those for Michaela and can shout those out to her during the presentation as needed. And then following our webinar at the end, you will receive immediately, when you close out, a little survey. If you could please fill that out for us, for our evaluation and will let us know how we’re doing with the presentation.

This presentation will also be uploaded on our YouTube page in the next couple of daysm so you can check back and rewatch it or [00:03:00] share the link with others to watch. So, Michaela, I’m going to let you get it started.

Michaela: [00:03:05] Okay. Thank you. So like Stella said, my name is Michaela Evans. I’m an educational specialist with Kentucky SPIN.

And I have a 12 year old with autism. So I have been through this journey with you guys and we’re just going to talk a little bit about advocacy today. So you’ll learn what advocacy means and how to improve your advocacy skills and how you can make a difference. So today as we talk about advocacy, which is basically just speaking up for yourself and others, we’ll also learn about the skills you need to be an effective advocate and specific ways that you can make a difference. Our hope is that you will find more skills you can use to become a more effective advocate for your child with a disability. And recently, in a workshop like this one, a mother whose child was blind and has cognitive disabilities, stood up during the training [00:04:00] and said that she’d always been a private and shy person, never liked to speak up, but was learning how to speak up and, if life is going to learn it, she had to speak up if life was going to work out for her son and her family. So we’ll hope that you guys have a similar experience today. You want to use your power “The most common way that people give up their power is by thinking that they don’t have any.” And that’s a quote by Alice Walker

Parents of children with disabilities who participated in recent focus groups, expressed a lot of frustration. And I know I as a parent, have experienced that frustration as well. Parents said that they feel like their child’s teacher thinks that she knows better than they do.

That it seems like staff members support their system and not the parent or the child. A lot of parents feel that they’re always spoken down to, or brushed off or rushed along. And it makes them feel voiceless and sometimes, they just want to give up and leave it to the school and [00:05:00] get that, [unintelligible] the idea that the professionals have the attitude that we’re the professionals and we know what’s best. So just listen to us. So that, we’ll teach you kinda how to overcome those feelings. And so if we go on to the next slide, we’ll talk about what is an advocate. Advocates speak up for themselves and others to make things better.

And so, have you ever met with your child’s teacher about any issue or spoke at a local gathering or a project that you care about or told a cashier that an item was not ringing up correctly? Those are all examples of being an advocate. An advocate can be broadly defined as someone who speaks up to make things better.

Each of you has already been an advocate and you may not have attached that label to your actions, but it covers a broad range of activities. Just about everyone in many settings does every day. You advocate for yourselves and you advocate for [00:06:00] others all the time without even realizing it.

So as a parent of a child with a disability, you’ve already had to speak on behalf of your child. Because most likely you’ve spoken to a teacher, a daycare worker, a doctor, a nurse, a social worker, other parents, relatives or friends.

So why should you be an advocate? Parents bring their own valuable experience with their child to the table. Parents are the experts on their child. You know when something is or isn’t working, you have ideas on how to make things better and you have the only longterm connection with your child. So you are their best advocate. Professionals have knowledge and expertise in a specific area, but they’re only a temporary part of your child’s life. Professionals will pass in and out of your child’s life, but you will always be there as their parent. Professionals also deal with many children, but you have to [00:07:00] think about what has served you best as a parent and how professionals can work with your child, however your child will need someone to advocate for him or her. No one cares about your child as much as you do.

And so, the six skills to be an effective advocate are to understand your child’s disability, know the key players, know your rights and responsibilities, become well organized, use clear and effective communication, and know how to resolve disagreements. So an advocate is just a supporter, a believer a promoter. And you can be all of these things.

Undoubtedly you have many skills in the six areas, that we’ve listed here. And we just want to help you expand your skills so that you can become a more effective advocate for your child. And so today we’ll give you an overview of these [00:08:00] important advocacy skills and provide resources so you can learn more.

When you look at this list, just ask yourself, be thinking in your head, you know, what is your strongest area and your weakest. And which areas that you could learn more so that you can be more effective. So in other words, who is the star and we wanna know, who are the players? What are the rules? What is my plan of action? What do I say when it’s my turn, and what do we do when we disagree? Because advocacy is much more important than playing a game for a recreation. But some of the main ideas are the same. You want to imagine you’re playing a board game or a card game. And games have rules and the players need to know those rules in order to play the game.

But players also need to know people skills, like turn-taking and concentration, making conversation, and managing emotions. These are all things that I work with my child on a daily basis. And so to break that down and kind of [00:09:00] use it as a parent perspective is what we need to do here too. You want to look at what your strategy or your plan is that you’ll use in the game.

And of course, you know, at the social security office or your doctor’s office or your special education program, they’re not games. But we have to process with rules and also require people’s skills, to resolve a disagreement. Knowing the rules of the game or the process will help you become an effective advocate for your child.

So the first skill is understanding your child’s disability. In order to understand your child’s disability, you need to know which services are appropriate for your child. Have high expectations, and find the right assistant technology and accommodations. And then you want to use resources to learn more.

So it’s very important in understanding your child’s disability because it helps you understand options for raising a child with that specific disability. [00:10:00] And helps you ask educated, informed questions. If you understand that the services are appropriate to meet your child’s needs, then you’re going to be more effective in their care.

Assistive technology and accommodations are often a key to learning and to accessing services. So you want to learn which specific assisted technologies or combinations can help your child. And then are there assistive technology methods or combinations that help other children who have the same disability as your child?

Learn that assisted technology includes a large variety of helpful tools like computers, voice simulators, hearing aids, FM systems, braille elevators, captions, note takers, and so much more. Really the list is endless. You want to learn the word “access.” And what it will take, for your child to be able to access or use and benefit from the service or activity.

[00:11:00] For example, a person who is deaf may need sign language interpreter, or a person who has a wheelchair, may need an elevator. Or a person with a cognitive delay may need simplified directions. And then you want to use your resources to learn more. And some of those resources, include getting to know some adults with your child’s disability.

And ask yourself, you know, what are some of the possible lives that my child could have? There’s also disability groups, support groups and websites that can be helpful and you want to utilize those.

Skill number two is knowing the key players. So you want to know who is the director or the decision maker, are staff people public, nonprofit or private employees. And how can you find a person’s name. So this is important because in order to influence someone to make a change, you think is necessary for your child, you need to know who to talk [00:12:00] to.

You need to know exactly who has that authority to make decisions and changes. And so examples are, you know, a case manager for an IEP or a social service. A state insurance commissioner, state and federal legislators, city council members, school administrators, medical directors, people like that.

Is there a hierarchy? Is there someone in the system with a higher rank or more authority? If one person can’t help you out, who’s the next person in line with higher responsibility who might be able to help? It’s also helpful to know, if the staff people or public, nonprofit or private employees so that you can understand their role and the rules of the system. To learn this basically just ask who funds that agency or the service? Is it funded by public through taxes. Is it nonprofit that is probably [00:13:00] funded by grants and donations. Or is it a private organization funded by fees, donations, or earned income. And then how you find out a person’s name, you ask for a list of client, customer service, user contact information.

Look on the internet. You can find resources at your library, check a phonebook, or Google and ask staff at your local parents center  or Kentucky SPIN for ideas and contacts.

Skill number three. You want to know your rights and responsibilities and you want to learn about them by reading websites, asking how service is funded, asking to see laws and policy, asking questions, joining a group. And then why is that important? You want to know who is in charge. But knowing who’s in charge is not enough.

Parents need to know the rules of the game [00:14:00] too, and need to participate from a position of knowledge as much as possible. Each agency or service provider has guidelines on how they work and they have procedures, forms, policies, and sometimes laws and regulations. And you can find these in writing if available.

You want to read websites and see what you can learn by reading the agency service or website and type it in a search box on the internet. You can find funding sources, there’s a direct link between how an agency or a service is funded and your rights and responsibilities. So if the agency or services are funded by the public, they’re required to follow certain laws, not just policies.

Publicly funded systems are not supported by taxes, I’m sorry, they are supported by taxes, and include public schools, levels of government, including cities and counties and all government agencies. Other agencies and services [00:15:00] that are not funded by those are nonprofits. And they’re supported by these grants, donations or private ones.

And then nonprofit and private agencies services, they typically have policies or ways of doing their business. And you can always ask to see those policies in writing. And it is okay to ask, how the service or the agency providing the service or how it’s funded.

You want to ask questions, agencies and services often have case managers, consumer representatives, or patient advocates. Ask to talk to someone about the rights and responsibilities of the people who use this agency or the service. And then of course, you can join a group. Ask your parents center, and so Kentucky SPIN, is a good resource and we can provide you with who you can talk to and who’s working with the particular agency or service on how to ask these questions.

So when we’re talking about parents as partners, [00:16:00] parents and professionals can be partners and work together, share goals, have individual roles, share authority, have different skills, and solve problems. Often parents don’t feel like partners. But, you are players. So remember, the Alice Walker quote, you do have power, you just need to use it.

And then understanding the different roles and backgrounds of each participant may help you and staff members work together more effectively. And so some differences to consider are staff persons have chosen their careers. While most parents did not know that they were going to have a child with a disability.

You will be involved with your child for life. While most agency and service staff will be involved with your child for a much shorter time. Professionals have formal training and receive payment, for the role in your child’s life. And both you and the staff have the goal of providing [00:17:00] appropriate services for your child.

But parents, please remember,  that parent knowledge and opinions are valuable. No one else knows what you know about your child. And only parents have an in-depth, long term, daily relationship with their child. Parents can learn new skills to advocate and communicate clearly and assertively. And parents often have the power of giving or withholding consent for services.

Partners who work together have the same overall purpose or goal. Partners want a win-win situation. And make an effort to communicate clearly.

And becoming real organized is skill number four. So you want to keep records. Put everything in writing, keep a phone log and have a meeting notebook. So this is really important. Most agencies and services required documents, data and records. So you’ll be well prepared [00:18:00] by organizing what you have.

You never know what you might need in the future. And, I have a whole filing cabinet full of papers. That, I keep everything, because I have learned that. Anything I don’t keep is always what I need in the future. So this has been very, very helpful for me to keep those documents organized, to keep all my records in where I can find them so I can just pull them when I need them when it comes up, because it does come up.

When you keep records, you want to separate your records by service or agency. For example, school records may go into a special education record keeping folder, while health records may go into another box or folder. You want to keep written correspondences, including printed emails from the school’s social security services, medical professionals or any other system. You want to keep a list of names and contact numbers for each system that you deal with. And when you go to a meeting, bring all pertinent records from your [00:19:00] file or a folder. Keep them in order by date, so you can easily find what you need and put everything in writing.

It’s always best to get as many things in writing as possible. And that includes copies of any letters or emails that you send, yourself. Also keep copies of letters and emails that you receive from others. We have a saying in advocacy circles, “if it’s not in writing, it doesn’t exist.” And someone may have told you something on the phone or in a hallway conversation, but that does, it doesn’t mean anything because it wasn’t documented in writing.

And if that is the case, you want to write a letter or email saying something like, “thank you for talking to me today. I think, what you said was something wise”, and just kind of we reiterate the conversation that you had so that you have documentation of it. And then you want to say, unless I hear from you, in writing by next week, I will assume you understood the conversation the [00:20:00] same as I did.

So that helps you keep, you then have written record of that verbal conversation. You also want to keep a phone log. Include the date, the name of the person you talked to, and a summary of what was said or decided, and a brief note of what was discussed. If there are any specific things that you or the other person has agreed to highlight them in your log so you can check on the progress later. And then keep a meeting notebook as well. Include the date, who was there, brief notes of what was discussed and decided in the meeting and again, if there were specific things that you or others were going to do, highlight that for a followup.

Skill number five is to use clear and effective communication. You want to keep your eyes on the prize and the right service for your child and listen and ask questions. The only person that you have the power to change is yourself. So this is about you and not about them. The way that you talk to others has [00:21:00] a direct relationship on how they will interact with you.

And perhaps what services your child will receive. If you have a habit of showing strong emotions, ask yourself, will this get my child what they need today as well as tomorrow? The power, we talked about earlier is not the same as aggression. If you behave with anger, others are most likely only remember that you were angry and not that you had good points or valid requests.

And here’s some tips that can really make a difference when you’re advocating for your child. Which is like we talked about, keep your eyes on the prize. The prize is the effective service for your child with a disability. And the focus should always be on your child and what your child needs, and not what you need.

And when we’re talking about listening and asking questions, I’m gonna listen to others and ask questions that you have. Listening gives you information that you will need. And, you want to listen to see if the speaker is sharing opinions or facts. A fact we’ll have data and records to back up [00:22:00] what is said, and decisions should only be based on facts. Whether or not you agree, try to understand what others are saying. And to make sure that you understand what the other person is saying,

you might want to say, “I think I heard you say this. Is that correct?” “Or please tell me more. So I’m sure I understand your view.” For example, if someone says, your child is disruptive, you know, what does that mean? Really? That can mean something different for everyone. So you want to ask for ideas. I just ask them, do you know when your child is doing this, or how often, or what specifically your child is doing, who does he interrupt? Or knowing the answers to all of those questions, will help you determine what is actually the problem and what’s being done about it. You want to ask “who”, “what”, “where”, and “how” questions.

But be careful of “why “questions because, especially if it seems like you [00:23:00] may be questioning someone’s motivation or why they did that. A why question is something like, “why my son, why is my son taking medication?” Is certainly, appropriate.

And then skill number five, you want to use, clear and effective communication. And you want to focus on the needs of your child and problem solve, together to find solutions. Again, you want to focus on the needs of your child, not the solution that you want. Keep the emphasis on what your child needs and not necessarily what you want for your child. Use data and facts instead of your opinion to support what you need and what your child needs. And expect professionals to use this, to use data as well. Problem solve together to find solutions, bring the problem to a discussion table, not the solution.

So describe the problem clearly, encourage input from all members of the team. [00:24:00] You want to brainstorm without evaluating the ideas. So don’t make judgments on how good the idea is. Just list opinions. Choose a solution by a consensus so that everyone agrees., develop a plan, define who is responsible for the action and what it will be completed.

Put that plan into writing. Create a timeline or criteria to evaluate success, follow-up to make sure the plan is implemented. Also in skill number five when we’re talking about clear and effective communication, you want to speak clearly, avoid a way to making people feel defensive and turn negatives into positives.

And you want to summarize. When we’re talking about speaking clearly, be as clear and direct as possible, so that others will understand what you have to say. Gives, excuse me, give specific examples if you can, instead of just saying that, you know, he always [00:25:00] has a stomach ache. You might want to say he has a stomach ache when he gets home from school.

Describe why something will help. Describe how something will help. If you say, my child needs a paraprofessional support, what could you add of why? Why that will help. So you want to be thinking about those things. Avoid making people feel defensive. So don’t criticize. With each criticism, defensiveness increases and listening decreases.

So give positive feedback and praise as often as possible. And when people don’t listen, they are unlikely to do what I think they should do. You want to turn all your negatives into positives. So, this technique allows you to take a negative comment, made about your child and turn it to a positive.

For example, if someone says he’s always fighting, could mean, or it looks like my child has, or needs to learn some [00:26:00] social skills. And so try to focus on positive aspects instead of negative ones.

Some tips for good communication at a meeting. You want to focus on your goal, show respect and expect it from others. Manage your emotions, ask questions, rephrase for clarification, and say thanks. So the previous slides have covered most of those tips.

And on the next slide we’re going to talk about tips for written communication. So letters should be sent to a person who can make a change. They should always be dated and signed. They want to focus on one or two issues, be no longer than one page. Set a deadline if a reply is requested. And give your contact information and remember to keep a copy for yourself.

[00:27:00] As we stated before, there is a saying an advocacy circles. If it’s not in writing, it doesn’t exist. And so you can send letters for a lot of different reasons. Some of those reasons are making a request, asking for clarification, clarifying what you yourself want to say. Asking for decisions, saying thank you or documenting a verbal discussion.

And use the checklist on this slide whenever you write a letter or email, to help you remember those important points. So when you disagree, try to disagree without being disagreeable. Apologize if needed. Separate the person from the problem. Realize that no one has all of the answers and make sure your facts are correct.

Also, you want to choose your battles. When parents or agencies or service providers disagree, there are things you can do or say that will help the disagreement be solved more quickly, and amicably, no matter what process is [00:28:00] being used. You can disagree without being disagreeable, which is the first point on our slide.

Just express that you want to continue to work together for the benefit of your child and that you don’t want disagreement to interfere with that. Sometimes you might be particularly responsible for this disagreement. And if you are, that’s okay. Just accept your responsibility for your part and apologize if that’s appropriate.

You are an advocate for your child only, the professionals may disagree with, work for an agency or service provider. They must not only answer to you, but also to their agency. So oftentimes it’s not the person you’re disagreeing with, but the agency itself. So trying to separate the person from the problem.

Each person involved in the disagreement brings, different information, values, priorities, and different things to the table. No one has all of the answers.

Try [00:29:00] to work together using everyone’s input to solve the problem. And help people make sure that their facts are accurate so that decisions are accurate as well. Not everything is worth disagreeing about either, so make sure you choose your battles or you and those that you’re dealing with will just become angry and weary and it doesn’t really benefit anybody.

And as a parent, you may agree or disagree with decisions made by an agency or service divider excuse me, provider. So skill number six, we’re talking about knowing how to resolve those disagreements. And so, the informal processes, you want to talk to people first. You’ll be reminded that knowing, who’s in charge is not enough.

Like we talked about earlier. Parents need to know the rules of the game, including how disagreements are settled with a specific agency or service provider. Each agency or service provider has a [00:30:00] formal and informal guidelines on how it works. And each one has procedures, forms, policies, and sometimes laws and regulations.

So ask if the agency has a dispute resolution procedure and where you can find it in writing. There are many ways to solve disagreements. It’s usually best to use informal means. So start your efforts at a level of closest to the problem, talk to the people, like the case manager, service provider about your differences, and be clear about why you do not agree.

This is often the easiest way to solve a problem. Often a compromise or a trial solution may work. You may say, I don’t really know if this would work, but we could try until, you know, and set a date. And just see how that goes.

Stella: [00:30:49] And Michaela, I’m going to jump in on this one, and just interject something here.

And I’m gonna use this scenario of like, if you are at an IEP meeting and [00:31:00] you have a disagreement, at one of my, and my son’s 23 now, but of course, when we did have, one of his last IEP meetings we had, we could not come to an agreement on something. And I found myself, and I’m sure parents out there will understand this, and you do too, Michaela, I know, I found myself beginning to get emotional. And I was trying really hard not to. And so what I did in that meeting is, I took a break and I said to everyone that we needed to take a break. And so when we did that, we all cleared the room, except for me and my husband, and we sat and had a discussion ourselves.

Before we brought everybody else back in. And in that same meeting, even when we brought everyone back in, we still could not come to an agreement. So I asked that the meeting be postponed and thats okay to do stuff like that. It’s real important to know your level of comfort [00:32:00] and when you feel like that it’s not happening, it’s okay to take those breaks and walk away and maybe even reschedule if necessary.

So I just wanted to insert that because I think that’s real important, on, you know, knowing how to resolve those disagreements and not all disagreements have to be resolved at that exact moment. Sometimes stepping away is what’s needed.

Michaela: [00:32:21] Absolutely. That’s a great point. Some of the formal processes, are, I think over on the next slide.

Some of the formal processes are mediation, complaints and appeals. So, you know, sometimes a more formal means are necessary to clear up disagreements. And so when you’re looking at those options, mediation, agencies and service providers sometimes provide mediation, where the parties who disagree they meet with a neutral mediator.

And so the parties, not the mediator make the final decisions, but the mediator [00:33:00] just guides the discussion so that all sides and options can be heard. And then also you have the option to file complaints. In some situations, some agencies or service providers have formal means of filing a grievance or complaint, or they’ll have a form or a process.

Just ask for a copy of that process or procedure. And then filing appeals. Some agencies have written process for filing an appeal of a decision made by the agency or provider. And government agencies must have an appeals process. So in addition, insurance companies also have an appeal process if a claim or procedure is denied.

And so, you want to be able to find out more too. And so you can also read websites and see what you can find on that agencies website and type it in a search box on the internet. Checking the funding, is also a good [00:34:00] idea. There’s a direct link between how the agency or services is funded and your rights and responsibilities, including resolving differences.

Those funded by the public, through taxes such as public schools, and government agencies are required to follow certain laws. And like we talked about before, nonprofits, and private agencies have their own policies on how to resolve differences. So just ask. Agencies and services often have case managers or consumer representatives to help you.

And you can join a group too, where you can find out more. You can contact your parent center, or support groups. And see what other people are going through, your experience, have done as well, and what the options are.

So, here’s all the skills checklist, and you just wants to, look at what you’ve learned. Is there a skill that you hope to improve? Do you need more resources or do you [00:35:00] need more support? And so you just want to understand your child’s disability, know your key players, know your rights and responsibilities, become well organized, use clear and effective communication, and know how to resolve disagreements.

And so, just to kind of summarize, this quote by Helen Keller is a great one. It says, “I am only one, but I am still one. I cannot do everything, but still, I can do something. I will not refuse to do the something that I can do.” The only person that can change is you. So no matter how much you wish, the other person would learn some of these skills, we can’t force it, to make that happen.

But you do have the power to change and grow yourself. And so as the saying goes, every journey begins with one step. As you work on your [00:36:00] skills and you find yourself becoming more and more confident and effective, hopefully, through the process, you can make a great difference in the life of your child with a disability.

And so that concludes our presentation and if you wouldn’t mind, just to fill out our evaluation afterwards, we would love to have  your input.

Stella: [00:36:24] Thanks so much Michaela, and thank you everyone for being a part of our webinar today. I answered [inaudible], but feel free to reach out to us personally. Our email is on this last screen here and we will be happy to answer any questions you may have. I will be following up with everyone, sending the handout, excuse me, and the PowerPoint. So you will be receiving all of that in a followup email.

And we do have other webinars coming up. And, I will send a flyer in that email letting you know when our other webinars are scheduled, [00:37:00] through June, and we thank you. And please stay safe, take a few minutes and fill out our evaluation at the end of the presentation. Have a wonderful day.