How can parents advocate for their child with a disability

How Parents Can Be Advocates for Their Children

By: Coordinated Campaign for Learning Disabilities

Parents are often the best educational advocates for their children, especially children with a learning disability. Discover nine tips to help you be a strong champion for your child.

Know the rules

All public schools abide by specific laws and regulations, which provide special services for children with learning disabilities who qualify for such services. The criteria for eligibility varies from state to state, but all schools must adhere to a minimum federal standard. To find out the laws in your state and your rights as a parent, contact your local school district office, or state Department of Education.

Get to know the people who make decisions about your child's education

Connect with educators and administrators in both casual and formal settings. Talk with your child's teacher on a regular basis. If possible, volunteer in the classroom and help out with school functions. If you have concerns or problems that a teacher can not or will not address, be willing to follow the chain of command through the school, and if necessary, to the district office. Remember that you as a parent have the right to request that the school evaluate your child if you think he or she may have a learning disability. Be sure that your request is in writing.

Keep records

Parents should maintain an organized file of educational records and assessment information. Take notes during telephone and face-to-face meetings, and ask for people's full names and contact information when communicating by phone or by email. In addition, keeping less formal examples of children's academic progress, such as homework papers, artwork, and writings, may be useful in establishing patterns and documenting both abilities and challenges.

Gather information

Read books and articles on learning, attend conferences, and join a parent support group or affiliate organization in your area. Get comfortable with education acronyms and jargon. Ask professionals lots of questions, and don't be afraid to ask for clarification if their answers are confusing or complicated.

Communicate effectively

Come to meetings prepared, and know the specific outcomes you want. Be clear, calm and direct when speaking and put things in writing whenever possible. Listen, and take time to think about pertinent information. Consider when documentation or data might help your case, and present it in an orderly and readable format. While assertiveness and persistence are crucial, anger and aggressiveness can work against you and can damage important relationships.

Know your child's strengths and interests and share them with educators

By highlighting a struggling child's capabilities and talents, you not only help professionals know your child as a whole person, you can also assist in identifying learning accommodations.

Emphasize solutions

While there are no miracle cures or magic bullets for learning disabilities, it's important to stress the positive, and to help identify ways to improve your child's experience. Once appropriate programs have been identified and agreed upon, make every effort to encourage follow-through.

Focus on the big picture

Simply put, don't sweat the small stuff. Knowing the specifics of a law may be important on one level, but constantly arguing technicalities can ultimately waste time and inhibit rapport. Try not to take things personally, and always consider both sides of the story. Details are important, but don't let them get in the way of negotiating the best educational experience for your child.

Involve your child in decision making as early as you can

Learning disabilities are a lifelong issue. Mastering self-advocacy skills is one of the keys to becoming a successful adult. Resist the natural urge to pave every road for your child, and respect and support your child's need to take informed academic risks.

Reprinted with permission from the Coordinated Campaign for Learning Disabilities (CCLD), a collaboration of leading U.S. nonprofit learning disabilities organizations. All rights reserved.

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Advocating for Your Child – Parenting Special Needs Magazine

Advocating for Your Child

Good special education services are intensive and expensive. Resources are limited. If you have a child with special needs, you may wind up battling the school district for the services your child needs. To prevail, you need information, skills, and tools.

Related: A Review…What Is Special Education

Who can be an advocate?

Anyone can advocate for another person. Here is how the dictionary defines the term “advocate“:

ad-vo-cate – Verb, transitive. To speak, plead or argue in favor of. Synonym is support.

1. One that argues for a cause; a supporter or defender; an advocate of civil rights.
2. One that pleads in another’s behalf; an intercessor; advocates for abused children and spouses.
3. A lawyer. (The American Heritage Dictionary of the English Language, Third Edition)

An advocate performs several functions:

• Supports, helps, assists, and aids
• Speaks and pleads on behalf of others
• Defends and argues for people or causes

Related: 8 Ways to be a Great Advocate For Your Family Member With Special Needs

Different Types of Advocates

Special education advocates work to improve the lives of children with disabilities and their families. You are likely to meet different types of advocates.

Lay Advocates

Lay advocates use specialized knowledge and expertise to help parents resolve problems with schools. When lay advocates attend meetings, write letters, and negotiate for services, they are acting on the child’s behalf. Most lay advocates are knowledgeable about legal rights and responsibilities. In some states, lay advocates represent parents in special education due process hearings.

Educational Advocates

Educational advocates evaluate children with disabilities and make recommendations about services, supports and special education programs. When educational advocates go to eligibility and IEP meetings, they are acting on the child’s behalf. Some educational advocates negotiate for services. Others are less knowledgeable about special education law and how to use tactics and strategies.

School Personnel

Teachers and special education providers often see themselves as advocates. Teachers, administrators, and school staff often provide support to children and their families. But because they are employed by school districts, school personnel are limited in their ability to advocate for children with disabilities without endangering their jobs.

Related: IEP … I Do’s Building a Viable Home-School Relationship -It’s like a Marriage

Parents

Parents are natural advocates for their children.

Who is your child’s first teacher? You are. Who is your child’s most important role model? You are. Who is responsible for your child’s welfare? You are. Who has your child’s best interests at heart? You do.

Related: Empowering Your Child’s Best Advocate: You

You know your child better than anyone else. The school is involved with your child for a few years. You are involved with your child for life. You should play an active role in planning your child’s education.

The law gives you the power to make educational decisions for your child. Do not be afraid to use your power. Use it wisely. A good education is the most important gift you can give to your child.

As the parent of a child with a disability, you have two goals:

1. To ensure that the school provides your child with a “free appropriate public education” that includes “specially designed instruction . . . to meet the [child’s] unique needs . . .” (20 U.S.C. §1401)
2. To build a healthy working relationship with the school.

What Advocates Do

Advocacy is not a mysterious process. Here is a quick overview of advocacy skills.

Gather Information

Advocates gather facts and information. As they gather information and organize documents, they learn about the child’s disability and educational history. Advocates use facts and independent documentation to resolve disagreements and disputes with the school.

Related: Organizing Your Child’s Special Education File: Do It Right

Learn the Rules of the Game

Advocates educate themselves about their local school district. They know how decisions are made and by whom.

Advocates know about legal rights. They know that a child with a disability is entitled to an “appropriate” education, not the “best” education, nor an education that “maximizes the child’s potential.” They understand that “best” is a four-letter word that cannot be used by parents or advocates.

Related: The Politics of Special Education: The Information You Need Right Now

Advocates know the procedures that parents must follow to protect their rights and the child’s rights.

Plan and Prepare

Advocates know that planning prevents problems. Advocates do not expect school personnel to tell them about rights and responsibilities. Advocates read special education laws, regulations, and cases to get answers to their questions.

Advocates learn how to use test scores to monitor a child’s progress in special education. They prepare for meetings, create agendas, write objectives, and use meeting worksheets and follow-up letters to clarify problems and nail down agreements.

Keep Written Records

Because documents are often the keys to success, advocates keep written records. They know that if a statement is not written down, it was not said. They make requests in writing and write polite follow-up letters to document events, discussions, and meetings.

Related: Drowning in Paperwork? Here’s What Helps Us

Ask Questions, Listen to Answers

Advocates are not afraid to ask questions. When they ask questions, they listen carefully to answers. Advocates know how to use “Who, What, Why, Where, When, How, and Explain Questions” (5 Ws + H + E) to discover the true reasons for positions.

Identify Problems

Advocates learn to define and describe problems from all angles. They use their knowledge of interests, fears, and positions to develop strategies. Advocates are problem solvers. They do not waste valuable time and energy looking for people to blame.

Propose Solutions

Advocates know that parents negotiate with schools for special education services. As negotiators, advocates discuss issues and make offers or proposals. They seek “win-win” solutions that will satisfy the interests of parents and schools.

Your Assignment

Plan for the Future

What are your long-term goals for your child? What do you envision for your child in the future? If you are like most parents, you are focused on the present. You haven’t given much thought to the future.

Do you expect your child to be an independent, self-sufficient member of the community? Although some children with disabilities will require assistance as adults, most will grow up to be adults who hold jobs, get married, and live independently.

If you have a vision about what you want for your child in the future, you are more likely to achieve your goals.

If you believe others will make long-term plans for your child and provide your child with the necessary skills to be an independent, self-sufficient member of society, you are likely to be disappointed.

Answer Questions

What do you want for your child? What are your goals for your child’s future? Do you have a master plan for your child’s education?

Read: Baby Steps Tips for Encouraging Your Child Toward Independence

If you want your child to grow up to be an independent adult, what does your child need to learn before he or she leaves the public school system?

What do you want?

Develop a Master Plan

If you are like many parents, you don’t have a master plan. You don’t know where you are, where you need to go, or how to get there. Do not expect school personnel to make long-term plans for your child — this is your responsibility.

Read: Plan Early for Your Child’s Long-Term Security

Begin by thinking about your vision for your child’s future. What are your long-term goals for your child? What will your child need to learn? What services and supports will your child need to meet these goals?

Are you ready to advocate? Here is a list of supplies that will help you get started:

• Two 3-ring notebooks (one for your child’s file; one for information about your child’s disability and educational information)
• 3-hole punch
• Highlighters
• Package of sticky notes
• #10 Envelopes
• Stamps
• Calendar
• Journal
• Contact log
• Small tape or digital recorder

In this article, you learned about lay advocates and educational advocates, and about limitations on teachers and special education staff in their ability to advocate. You learned that parents are natural advocates for their children.

You learned about basic advocacy skills—gathering and organizing information, planning and preparing, documenting, problem solving, and negotiating. You have a list of supplies to help you advocate.

You learned that you must plan for your child’s future. A plan is like a roadmap. When you have a plan, you know where you are, where you need to go, and how to know when you arrive.

The Parent’s Journey From Emotions to Advocacy

On your journey from emotions to advocacy, you will learn about your child’s disability, educational and remedial techniques, educational progress, Individualized Education Programs (IEPs), and how to artfully advocate.

You will learn how to present your concerns and problems in writing, prepare for meetings, and search for win-win solutions. You will learn how to use your emotions as a source of energy and power, and how to focus on getting an appropriate education for your child.

This article is based on a chapter from Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide by Pamela Wright and Peter Wright.

Helpful Articles

• Early Intervention: First Steps in the Right Direction
• 8 Ways to be a Great Advocate For Your Family Member With Special Needs
• Advocating: What You Need to Know to Become a Better Advocate
• The Politics of Special Education: The Information You Need Right Now
• Whether it’s Your First IEP or You’re a Pro: 10 things to Cover at the Meeting
• Requests Prior to IEP Meetings: Eval Reports and Draft IEPs
• Where Do I Go for Evaluations
• Eligibility How Is It Determined?
• When Conflict Arises What Steps Can You Take?
• The Mama Bear Strategy: How to Hide Your Claws and Get What You Want!
• 5 Steps to Improving Communication With the Special Education Team
• Developing Your Own Network
• IEP Meeting Overwhelm? How to Avoid It!
• Drowning in Paperwork? Here’s What Helps Us
• Organizing Your Child’s Special Education File: Do It Right

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"A parent of a disabled child should not be a hero"

– In our society, parents of disabled children are sometimes nervously reacted to: they are not quite adequate, who will certainly demand, scream and be offended. Why is this happening?

– Families, of course, are all different, and so are families with disabled children. But in general, this is true, because it is very difficult to be adequate in Russia, having a disabled child. nine0009

Unfortunately, the opinion: “They gave birth, and now they are begging for benefits!” - It's very common here. According to polls that were conducted after one of our public figures said that all children with disabilities are born as a result of drunken conception, a third of the population is of the same opinion. And it is difficult not to be aggressive in such conditions.

Plus constant fatigue when you exist in eternal stress. And at the same time, in order to get what you are supposed to by law, you must put in a lot of effort. For example, we managed to get all the medicines and consumables Sasha needed only four years later. It turns out not life, but a race for survival. nine0009

The condition of the parents also depends on how long you live with a disabled child: a year and three years, there is a big difference. And there are people who live with such a child for ten or twenty years. And at some point you start to live on the machine, and some things annoy you very much, constantly getting into pain points.

For example, you are walking your baby with tubes or feeding him through a tube on the street or in a shopping center, and people are watching and whispering. This is very annoying. I know some parents are very aggressive about this kind of attention. No one likes to be pointed at, condemned and discussed. nine0009

– Will the parents of disabled children feel better immediately if we remove the external barriers?

– If we remove all external barriers (unavailability of medicines, lack of an accessible environment, negative attitude of society), no one will be able to say: “The state does not help me”. And as soon as we remove them, we will be able to get to the bottom of the problem - what is inside a person, and try to work with it. Because those stages of grief that are usually described in textbooks - denial-aggression-bargaining-depression-acceptance - the situation of a parent with his own sick child is not limited. nine0009

For example, our family is under the care of the children's hospice "House with a Lighthouse". Hospice does a lot to remove external difficulties and help solve our psychological problems. But in other places, parents do not have such an opportunity, and the attempts that the state is making are miserable. In Moscow, parents of disabled children can get a free consultation with a psychologist, but we have a lot of internal obstacles for this, and there is no systematic work with families in this direction.

Therefore, I am sure that if you do not feed the hungry, it is useless to talk about the soul with him. And if a person is tormented by the fact that his child does not have the necessary medicines, or they point the finger at him on the street, he simply will not get to the bottom of everything else - there is no resource.

Today, the parent of a child with a disability automatically becomes a hero. A sort of superman who sues the state, speaks in the press, organizes parent groups and charitable foundations, sets an example. It is not normal. There should be no heroic, there should be ordinary life. nine0009

A parent of a disabled child should not be a hero, because other parents in the same situation begin to feel worthless against his background. They can't smile for the camera when their child is sick, they can't help but think about tomorrow or when they're gone. The fact that there is nothing to eat, nothing to buy a special stroller.

There should be a different media coverage of the problem of children with disabilities - as a depiction of ordinary life.

And psychological support should be different - not from top to bottom, and not "in theory". Because when we present it as "psychology", it already causes tension. Another thing is support groups led by someone experienced from among the same parents. nine0009

We have schools for foster parents - there should be schools for parents of children with disabilities.

Speaking: how to care for a child, how to overcome difficult conditions, solve pressing problems.

And when a disabled child is born, parents should not be told: “That's it, turn him in!” They need to immediately inform the algorithm of actions: “there is such an organization. There they will teach you everything and will accompany you.” Then there will be fewer refusals, it will be easier for parents, and they will become inadequate less often. nine0009

Only after the family of a disabled child solves medical problems does it begin to solve psychological ones.

Parents self-organize into patient communities (now there are only the most active ones). And we need to convince the parents of sick children to join support groups, because now they often think “my child is not disabled” and “I will not communicate with disabled people.” This comes from the fact that "disabled" in the mass consciousness is a stigma, "it's bad and shameful. "

- So people are ready to leave their child without help, just not to join the community of parents of children with disabilities?

– Parents are trying so hard to protect themselves and their child from the negative. stage of denial. And it takes time to get over it and move on.

Our family also went through the process of accepting Sasha's disability gradually. When they give you this pink certificate, your thoughts ...

When Sasha was diagnosed, I didn't know what to do at all. And my first thought was suicide.

That is, you find yourself in a situation where you don't know what to do at all. And do not think that there are those who have already gone through all this and are ready to help.

Now the word "disabled person" in connection with Sasha does not evoke emotions in me, it is a simple statement of her condition. But it took me a year and a half to accept the situation, even with psychological help.

– But if the pink certificate is perceived as a “wolf ticket”, what motivates people to go to the school of parents of children with disabilities? nine0004