Special Needs Children: Parents' Rights when Dealing with Professionals

I began my career in the field of developmental disabilities in 1987. I started off at the very bottom working as a part-time aide in a residential school for children with profound mental retardation and behavior disorders. It was challenging work, but I truly loved it. In fact, I was so fascinated with the field that I continue to work in the field.

Over the past twenty-plus years, I have held many different positions serving a variety of consumers. I've been a teacher, a behavior specialist, a case manger and a day training center director. After being on hiatus working in case management and administrative positions, a few months ago I got back to working "in the trenches" within our local schools. It's great to be back to my roots and no, I do not miss the "perks" of management. I do miss the paychecks that came with being one of the top dogs, but I have also learned that money isn't everything and that the soap operas of office politics are not for me!

Through it all, I have gained a lot of experience at the various positions I have held. For the novices getting into special education or services for adults with special needs, I can quickly tell you that this is not a field for people looking for monetary gain. Since the field is dependent on state and federal funding (and in some cases, donations), the pay is lousy even at the upper levels of the food chain called social services/education! Then again, I'm not sure I would completely trust a case manager or a teacher that has as their sole purpose in life the riches they can put into their bank account at my child's expense. The main thing I have learned is that if one isn't willing to go the extra mile for the "customer," one may as well not even bother showing up for work.

People coming into this field would be best served to remember that the education of children be they "normal" or with special needs is a customer service. The customers are not limited to the individuals receiving the product, namely the child, but also the parents and/or guardians of the child. In special education, the school system is more elaborate and much more dependent on serving the needs of the parents. In fact, it is very crucial that the rights of the parent be upheld even more than a child with the child without disabilities. Why you may ask? Because the parents of special need children are often the chief voice that the child has.

Furthermore, it has not been that long ago that children with special needs, especially with mental retardation or mental illnesses, did not receive the services that the law entitles them to today. It has only been in the past thirty to forty years that a need for special education services has been identified. Over that time period, even professionals within the system still may fail to recognize the intricacies of the system, especially the rights of the customers that "buy" their "product."

These professionals include teachers, administrators, social workers, physicians, nurses, speech pathologists, physical therapists, occupational therapists, etc. These disciplines may be necessary to ensure that the level of services provided are in line with the needs of the child. The professionals involved may seem to speak different "languages" but they have the same agenda to teach the child as best as they can based on those needs identified.

The child is the focal point of the team, but very often, they have no voice due to disability. Even if the disability isn't severe, the child is still a minority and therefore not able to make many decisions on their own or at least without their parents input and consent. With all of this in mind, there are several simple steps that can be observed to ensure the rights of the parents while they work with the multitude of experts that provide services to their child.

First of all, the mantra of customer service is "the customer is always right." Don't treat them like they're stupid. They know their child better than the pros, so treat them that way. Ask the parents questions and allow them to give input. Remember that the parent is part of the team and they are the primary advocate for their child. In many cases, the parent may be the most valuable resource for the team, giving information that cannot be gleaned from any assessment or documents that the team has at their disposal.

Next, speak to the parents in simple terms. Avoid the technical jargon of the field. Too many "experts" think that laypeople understand everything they say. But does the average person understand what a speech pathologist means when he/she tells the parent of a four year old autistic child that the child has been "assessed at such and such level in the receptive language domain?" Maybe but without knowing the educational background of the parents, it is best to speak in simple terms; otherwise, all of that expertise will sound more like the "blah-blahs" that came from Charlie Brown's teacher in those old cartoons. Explaining that the child's language ability is equivalent to a child of three months in age may be much easier for the parent to understand no matter what educational level the parent has reached. Rule of thumb: keep words at a sixth grade level. If your verbiage unlikely would be seen in the Sunday newspaper, don't use it when speaking with a parent unless absolutely necessary. Finally be prepared to give answers as well as ask questions. This parent is new to the business they are sure to have many questions and they expect the answers to roll off of the tongues of all the experts involved.

Another point to remember is that parents can experience a wide range of emotions, especially if the child only recently has been diagnosed. Imagine finding out that your child is mentally retarded or autistic. Emotions could be all over the place there could be anger, resentment, surprise, hurt. Feel for the parent. Allow them the opportunity to speak their feelings. If they do not, their feelings may override their better judgment and affect the life of the child thereafter. Likewise, some parents may be afraid to talk. Make the parent understand that they are a valuable resource in providing the best educational services for their child, but allow them to talk when they are ready never force the issue.

Even after parents become familiar with the system, professionals often think they still know the system better than the parents. Professionals must not underestimate the parent just because they aren't a college educated professional. Furthermore, experts need to avoid thinking that the parent is still hypersensitive to the child's issues and therefore needs to be treated like they're made of glass.

If working with a family that has had a child in the special education system for while, recognize that these parents started dealing with this problem long before many others came into the picture. At this point, the parent knows that Johnny doesn't read well or that Sally hasn't reached certain milestones. Indeed, these parents probably have come to terms that what they are dealing with will more than likely be a lifelong process! The credibility of any professional can be destroyed right off if they don't recognize the level of involvement of the parent. The parent may see this type of attitude as obtuse or even arrogant. Professionals do themselves few favors by either treating the parents like they are ignorant or by tap dancing around the obvious. The elephant is in the room everyone present knows it's there, so talk about it! Shoot from the hip, yet be sensitive, supportive and again, be ready to answer questions as well as ask them.

Finally, the parent is an advocate as well as a guardian ultimately, their choices need to be honored, so make sure they are informed choices. The parent has a right to participate in developing the individual education plan (IEP), they have a right to inspect the records of their child and they have the right to make decisions on behalf of the child. Those decisions must be based on information the parent receives during discussion of the plan. If the parent doesn't understand the plan, it is the duty of the teacher to explain the plan in simple terms for that parent so the parent can make an informed choice about approving of the IEP.

I for one have never felt comfortable planning anything for a child without at least notifying the parent. That can be something as innocent as an arts and crafts project one never knows how a parent will feel about their child participating in some projects. A good example is projects based around some religious holidays can create a problem if the family is of a different belief. It is good to know these kinds of things ahead of time when planning for the child's education. The best way to do that is to maintain bilateral communication with the parent. Finally never keep the parent in the dark. If Johnny bangs his head on the swing set and it leaves a goose egg size lump on his forehead, the teacher or someone from the school better let the parent know what happened. The school is responsible for what happens to that child and must keep the parents informed.

Anyone entering the special education or social services field should do so with their eyes wide open to the endless possibilities the work will offer. Working with populations of people who are disabled can be very challenging yet rewarding. True, there is a lot of politics involved. But if the provider keeps in mind that their customers are the focal point of their work and that those customers have the right to the best possible service, that provider go a long way toward making their career choice a successful one.