Advocates: choosing the correct one for you

Kim Davis

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How does this pertain to families who have a son or daughter with a disability? Many times the systems in which families find themselves (e.g., early intervention, school, adult agency) can be overwhelming and confusing. Add increased emotions to the mix, and it is often hard for family members to think clearly and rationally in the heat of a meeting in which they are asked to make crucial life decisions. To make those meetings and situations more manageable and less overwhelming, an advocate may be “employed” to assist, encourage, or educate a family in understanding the ramifications of their decisions. The right advocate at the right moment can have a lasting impact on everyone involved, including the family, the staff of professionals supporting the individual with disabilities, and ultimately, the individual with the disability. That impact can be positive or negative. An advocate is not a person to simply choose without thought and discussion. The wrong advocate can have a serious impact on the relationship between the family and agency. That relationship may likely be longer lasting than the relationship the family may have with the advocate!! Just as finding the right doctor, teacher, or therapist takes time and investigation, so too should obtaining an advocate.

What is an advocate and what do they do?
According to the dictionary, advocate means “to speak in favor of, one who supports a cause, or one who speaks in another’s behalf” (Webster’s New College Dictionary, 1999). There are several roles or functions that an advocate may play in supporting a child with a disability and his or her family. They may include:

• Listening to all parties in a believing and nonjudgmental manner;
• Clarifying issues;
• Suggesting options;
• Documenting;
• Locating and providing information;
• Modeling appropriate behaviors and boundaries;
• Speaking on the parent/child’s behalf when they cannot speak for themselves;
• Helping the family with written correspondence or phone calls;
• Attending meetings;
• Problem solving;
• Educating families;
• Assisting parents in locating other supports; and
• Following up.
The advocate is NOT a therapist, a lawyer, or the primary decision maker (IN-Source correspondence, December 2005).

Why would one obtain an advocate?
As suggested by the list of functions an advocate may play, a family might consider working with an advocate when they feel overwhelmed with the amount and type of information they are receiving, if they need assistance in correspondence or locating additional supports, and/or if they need help with problem solving when issues are challenging and it becomes hard to maintain emotions while attending meetings. Clearly, an advocate can become an invaluable asset to a family and a child with a disability. At the same time, an advocate can also become a detriment or disadvantage unless the family is careful and thoughtful in choosing their advocate and maintaining their services.

Choosing an advocate
Since an advocate has the ability to become an integral part of a child’s educational team, it is vital for the family to do research prior to obtaining an advocate. Simply because someone calls him or herself an advocate, does not mean he or she always represents the family and child in the best possible manner. Research can assist in finding the right person who ultimately can help or hinder the future of your child. Consider the following information seeking guidelines:

What type of training in special education and school systems has this person received?
Training is available to advocates. It would be useful to find out what training the potential advocate has received. What topics were covered that would make someone an advocate? What skills were stressed? Skills such as communication, collaboration, presentation, and maintaining a professional relationship are important skills needed by anyone who is an advocate. When and where were the trainings and how long were they? How frequently does the advocate attend trainings? They should have current information and a good knowledge of special education in general as well as special education law. Care must be taken to ensure that their information is current and accurate. Practical experience such as attending IEP meetings or case conference participation should also be expected. Remember, knowledge alone does not make an effective and good advocate, interpersonal skills are essential in order to create and maintain a good working, collaborative relationship.

How long has this person been involved in advocacy?
When did he or she become an advocate? If the person has been involved for a long time they may have established relationships with certain school districts; this can be good or bad depending upon the advocates approach. There are advantages to being an advocate for a long time such as getting to know the systems as well as people within the systems. However, reputations can be positive or negative. Someone who is new to being an advocate will not have a reputation that can either tarnish or enhance their usefulness, but he or she can bring along the current training and knowledge that is needed.

Does this person understand YOUR child and your child’s needs?
It is important for any advocate to get to know YOUR child and YOUR child’s needs and not compare your child to another. Even children who have the same or similar diagnosis deserve to be treated as individuals. It may be wise to have the advocate meet your child and spend some time together before any conferences. In that way, the advocate can better assist you in tailoring your requests to the unique needs of your child. There are no recipes or simple methods that can be used with every child. Each situation is different and requires open minds to come up with solutions for the distinguishing features of your child. The advocate should be able to explain how your child’s disability may impact their learning and then work with you to help prioritize your child’s needs. Each child is an individual and therefore, deserves to be considered as an individual and not as a part of a group who share a label.

Will this person be sensitive to the fact that YOU have the ultimate final decision making power?
An advocate can offer options for different situations but must respect you to make the final decision. An advocate who interjects too much personal preference is overstepping his or her role. Ultimately, decisions are for the parents to make when given options. An advocate knows and expects this. The parent makes the final decision, not the advocate.

Can this person be objective? What evidence is there of this fact?
Having an open mind is an asset for everyone participating in meetings that discuss the future of a child. There are many options. An advocate should not be influenced by personal experiences or relationships with a school system that would impact his or her emotions and reason. This is not about them and their history, but it is about YOUR child.

If there is a history and the advocate cannot be objective, it may not be a good match for you and your child. (See appendix for IN-Source contact information.)

Can this person maintain a professional demeanor?
Professional demeanor may be hard to define in exact terms, but most of us would think of words such as respectful, courteous, competent, open-minded, or considerate as part of the definition. An advocate should embody all of those traits when supporting you and your child. Once again, it would be imperative for the advocate to separate “personal” from “professional” issues when working with you, in order to keep your child’s best interest foremost and not their personal agenda. If an advocate performs in an un-professional manner, it can do more harm than good for your relationship with the school and, ultimately, for your child.

Does this person seek win-win solutions?
When an advocate is utilized, there is usually a perceived need on the part of the family for additional support in understanding systems or working with the school to create an acceptable program. Can your advocate work collaboratively to achieve a win—win solution that supports your child, but does not put the school in a financial or personnel strain? While you may want “everything” for your child, every other parent who has a child in special education does too. It is impossible for any school district to give “everything” to every child.

Does the advocate recognize the limits of the system, as well as the limits of the family, or ask questions that would lead to a mutual satisfactory solution? Does the advocate work to avoid the “us/them” situation which only creates tension and ill will? That is a more collaborative and reasonable way to achieve a desired goal. Suggesting the tabling of a toxic issue until more information can be generated and gathered may prove to be more helpful than pushing forward when an issue becomes questionable. Ultimately over time, working collaboratively will garner more for your child and your family.

Does this person understand his/her professional limits?
An advocate is not an attorney. An advocate should know when to stop, because their role has started to switch from being a support person to someone giving legal advice. Then it is time to suggest an attorney. Most advocates should have an attorney who they are familiar with and who they can recommend to families.

What references are available and what is the reputation of this advocate?
Just as families would seek references and reputation information for medical or other personnel, seeking information about an advocate is wise. Simply because someone calls him or herself an advocate, does not mean they are qualified.

You may want to seek information from other families and the school districts where the advocate has been working. Questions to ask may be: How many meetings has the advocate attended and how did they work in those meetings; collaboratively or as an adversary? Do schools see the advocate as someone who complains, always finds an issue because the schools are out to “get” students with disabilities, generates undue stress, and threatens lawsuits? Do families feel comfortable with the demeanor and manner in which the advocate “represents” them to the school? Do families and schools see the advocate as someone who is open-minded and willing to negotiate or someone who has an agenda in each instance? Careful consideration of the choice of an advocate can make or break the relationship between the school and your family.

Can this person help you build and maintain a good, trusting, positive relationship for YOU with your child’s school?
Your child will be in his or her school daily for many years to come. Teachers and staff talk to one another and share their insights and feelings, just as families do. Teachers want to do what is best for all of the students they serve. But, a strained relationship can “drain” their physical and emotional resources and thus impact the type of care and services a student receives. A fear-based relationship may not be the best way to achieve the goals set forth for a child! This happens not because teachers/staff are bad people, but because they are human and the added stress and tension can adversely affect their work with a child. It is not intentional, but it can happen.

As in life, an advocate should help you achieve a positive relationship with your child's school. The saying, “you can get more with sugar than you can with vinegar” holds true in so many ways. If you work with the school, realize their limits and try to collaborate with them for the good of your child, you will achieve more in the long run than if you make unreasonable demands simply because an advocate says to do it. When we have positive and healthy relationships in our lives, we are more apt to get things accomplished and done for us because others genuinely care about our welfare and that of our child and family.

We need to have positive, strong, and nurturing relationships all of our lives to assist us in meeting our needs and those of our children. Without strong and positive relationships, achieving our goals may be challenging. The future of your child is in your ability to choose your battles wisely, understand constraints, and seek ways to "add a little sugar" to the relationships you create. Let's make this relationship work to your child's advantage.

References
Advocacy articles from Wrightslaw retrieved December, 2005 from www.wrightslaw.com.

Advocacy information page from The Advocacy Learning Center (TALC). Retrieved December, 2005 from http://pages.zdnet.com/ourorhskids/id29.html.

Bollero, J.L. Esq. (n.d.). Before you retain a lay advocate. Retrieved December 2005 from www.wrightslaw.com.

Contact information for IN*SOURCE: 809 North Michigan Street, South Bend, IN 46601-1036. You can also contact IN*SOURCE via phone at 1-574-234-7101, toll free at 1-800-332-4433, or by fax at 1-574-234-7279.

From the desk of the executive director. (Spring, 2001). IN-Source Reports.

Madigan, L. Attorney General (n.d.). Guidelines for choosing a lay advocate . Retrieved December, 2005 from http://www.ag.state.il.us/rights/choosing_advocate200406.pdf.

Questions to ask a prospective special education advocate (n.d.). VCSD Legal Advocacy Center, Retrieved December, 2005 from http://www.virginialac.org/pdf/SelectingAttorney_Advocate.pdf.

The Council of Parent Attorneys and Advocates, Inc (COPAA) (n.d.). “Guidelines for Choosing a Lay Advocate in Special Education”. Retrieved December 2005 from http://www.copaa.org/index.html.

Davis K. J. (2006). Advocates: Qualities to look for and choosing the correct one for you. Reporter 11(2). 10-12, 18.

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Hume, K. (2006). Advocates: Qualities to look for and choosing the correct one for you. The Reporter, 11(2), 10-12, 18.

Reprinted with permission from Indiana Resource Center for Autism