Special Needs Advocacy 101

Special Needs Advocacy 101

"Is my child getting all the services he/she needs or am I falling behind?"

"My son is a year old, but all he does is make noises, I’ve never heard any words come out of his mouth.   I’ve mentioned this to the pediatrician on numerous occasions and the doctor just tells me not to worry.  He says my son will talk when he is ready.  What does that mean?"

"My daughter is in third grade and she is reading at a first grade level.  My mother-in-law thinks my daughter should be tested, but I don’t know about that!  Once you get into all that special education, you never get out!"

As the mother of a now young adult on the autism spectrum, I’ve spent many sleepless nights worrying about my child.   When he was 2 years old, my pediatrician said that the way to get my son to talk was to “read to him.”  Now, let me say I have tremendous respect for pediatricians.  Keeping our children physically healthy is no small task and my pediatrician could certainly be classified as someone who was dedicated to his work.  However, he didn’t (and many pediatricians did not) know how to recognize the signs of autism in a young child.   I was able to detect autism in my child because of my professional background.  As an experienced social worker in a special education preschool, I had seen many cases of autism spectrum disorder over the years.  With a heavy heart, I realized my son fit the same criteria as the other children with autism who attended my school.   My diagnosis was confirmed by the psychologist of the team at a different special education preschool where I took my child for his full scale evaluation. 

Since that time, I’ve devoted my life and my social work career to helping special needs children and their parents, bringing over 25 years of insider experience to help them understand and expertly navigate the system.

Whether our children are toddlers, preschoolers, school-aged or they have aged out of the public school system, we as parents are often left wondering if our children are getting the free and appropriate services they need when they need them.  Traditionally mothers have been told to "just stop worrying."  (Yes, even in 2012).  Throw a shaky economy into the mix, and accessing services for our children becomes even more challenging.  ("I’m sorry Mrs. Jones.  We only have one speech therapist in our school district and 35 children who are in need of speech therapy.  I’m sure you can understand our dilemma.")

So, how do we advocate for our special needs children particularly in these difficult economic times? How do we define what special education is and is not? 

First, let’s discuss the meaning of the term "special education."  Special education is a free service, which is provided by your local school district.  It does not matter whether your child attends public or private school.  It also does not matter whether the school is religious or secular. The term free and appropriate public education (FAPE) refers to special education and related services that are provided at public expense, meet state standards, are appropriate and are in conformity with an Individualized Education Program (IEP).  In short, your tax dollars already pay for this service and there is no need to write an additional check. Contrary to past beliefs, the special education system is not a place to dump kids when there is no room for them elsewhere. It is also not a punishment for bad behavior. It does, however, require advocacy to ensure the child gets the very best education possible within the available systems.

You may not be aware that in 1982, the United States Supreme Court ruled that a child with a disability is not entitled to the "best" education, nor to an education that maximizes the child’s potential. This is what we as parents of special needs children are up against.

Of course we want the best education we can get for our children. We all want them to work to their potential, whatever that may be. However, before you can effectively advocate for your child you need to know how the system works from the inside. 

So, where does a parent go to get the necessary services for his/her special needs child? That answer will depend upon the age range of the child. If a child is between infancy and just over the age of 2, you can obtain a full scale evaluation free of charge, via your local Early Intervention Program. For example: in New York State, the Early Intervention Program operates under the auspices of the County Department of Health. You can usually locate a telephone number and address for your local County Department of Health by going online. Once you have gotten this information, you will want to put your request in writing to the appropriate contact person. (It is always best to keep a paper trail). Your specific request will depend upon what you see as your child’s area of weakness. If you believe your child is delayed in his/her speech and language, then you would request a speech and language evaluation. If you are concerned because your child is well over the age of one year and not yet walking, then it would be important to request a physical and occupational therapy evaluation. Sometimes parents request all three of the above mentioned evaluations. It depends on the individual child’s needs. With that said, it is recommended that you ask for a psychological and an educational assessment, regardless of what other evaluations you have chosen, as it will give you a more complete picture of your child’s level of functioning. 

After you have made your request for an evaluation, you will be given an early intervention service coordinator.  The service coordinator’s job is to make sure everything is carried out in a timely manner. This includes setting up the requested evaluations and arranging for you and the rest of the early intervention team to meet so that you can discuss the next step to take for your child. This is called an Individualized Family Service Plan (IFSP) meeting. If your child qualifies for special education services according to the evaluation results, then all of you decide together who should provide the service. If your child does not qualify for services but you need help with other issues (for example, you might be looking for a play group for your child), then the service coordinator would help you with that as well.

Once a child turns 3, he/she is no longer eligible to receive services from the early intervention programs. By the age of 2.4 or 2.5, the early intervention service coordinators need to start working on transition planning with the parent. Generally that means the service coordinator needs to get the paperwork in order so that the child can be evaluated by your local preschool special education committee. These committees provide services to children who qualify and are between the ages of 3 and 5.  If you feel your child will still be in need of special education services by the age of 3, then your service coordinator needs to have you sign a consent form so that your child can be evaluated. You would again request a psychological, educational and whatever evaluations your child had when he/she was evaluated by the early intervention system.   

When your child turns 3, he/she is no longer part of the early intervention system, and you will unfortunately no longer be eligible to work with a service coordinator. The Special Education Committees do not assign service coordinators to parents, which can be justifiably frightening and overwhelming as your child enters the preschool system.

As your child turns 5 and exits the preschool system, the evaluation process needs to be repeated once again with parental consent. Just as the Special Education Committees at the preschool level do not assign service coordinators to parents, they also do not provide parents and/or guardians with service coordinators at the school age level.

The two common threads between the Early Intervention Services and the Special Education Committees, is that these services are all free of charge. Unfortunately, they can also be quite complicated, overwhelming and scary. Would a parent be able to navigate these systems without the help of an advocate? Yes, but it can be extremely difficult and time consuming. In fact, most parents who navigate the system on their own miss critical services that could benefit their child. It is recommended that an expert and advocate be present to ensure the child gets the best and most appropriate care available.

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Written by: Nancy Perkins, Special Needs Expert & Advocate LMSW See other articles by Nancy Perkins, Special Needs Expert & Advocate LMSW
About the Author:

Nancy Perkins received her Bachelor of Arts degree from the State University of New York at Buffalo, and her Master of Social Work degree from Adelphi University. She is a New York State Licensed Master of Social Work, and has worked in the field for over 25 years. 

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