What Does it Mean to be an Advocate?
By Heyde Ramirez, MA, BCBA, NYS LBA and Maria Pantelides, MA, BCBA, LBA (CT, MA, MD, NY)
The definition of the word advocate is to speak, plead or argue in favor of. When you have a child with special needs, one of the biggest roles you will ever undertake is that of being your child’s advocate. You are vigorously fighting for your child. As an advocate, you are your child’s voice to make sure he/she is treated fairly, recognized, and afforded access to all the services and resources they need in order to reach their full potential. A child can have multiple advocates; for example a lawyer, another family member, etc.
Things You Should Know
It is most important that you know your child’s rights. The disability and mental health systems are complex. Each state has their own set of laws and regulations, so become familiar with those laws. It could be helpful to hire a lawyer to better assist you and educate you on the laws. Be prepared to present facts and documentation in support of what you are fighting for. It is important that you ask questions and listen to the answers closely.
Who Should Be On Your Team?
The people on your team should be the people that know your child best and have his/hers best interests in mind. Your child may have several existing team members already set up.
Medical Team
His/Her medical team may be composed of the pediatric practice where he/she receives yearly checkups and gets cared for when he/she gets a virus or the flu, the dental practice and possibly even an eye and ear doctor. The medical team may also branch out and include other medical professionals such as a neurologist or psychiatrist.
Depending on your child’s individual needs, his/her pediatrician will make the necessary referrals so that your child gets the best care possible. As an advocate for your child, express your concerns. Remember that your medical team relies on the information you report, and input as well. Your concerns may not always be apparent to others when they meet with your child, so it is up to you to let them know.
Have you ever experienced your child sitting perfectly still and following instructions at the doctor’s office, but at home, he/she starts to scream at the slightest demand. Mention it! As these professionals meet with your child, they will get to know him very well. They are great sources of information for you, but remember if you do not ask, you may not get the answers you are looking for.
School Team
Children spend a large portion of their lives learning, sharing meals, and socializing in school. It is no wonder that the teachers, teacher’s aides and other school staff will get to know your child on an individual and personal level. You will likely meet with the school team several times a year at parent teacher conferences and other meetings such as individualized education plan (IEP) meetings. These people know best about how your child is doing from an academic standpoint and what goals might be strived for in order to transition your child into a less restrictive setting. As an advocate for your child, demand the best possible education for your child. Laws have been enacted and your child is deserving of the best there is. If you feel that your child is not making progress or that the school is not meeting his needs, speak up! Never feel bad; you are representing your child’s interests.
Related Services Team
If your child has an IEP, there is a chance he has a team that extends beyond teachers and aides, and includes various therapists. Speech/language, occupational and physical therapist, just to name a few, are some of the people who may work with your child in order for him to meet his goals.
ABA Team
The BCBA supervisor can be an invaluable member of your team. The supervisor is someone who by default is constantly analyzing your child’s behavior and can give you a great idea of what techniques work and don’t work when it comes to teaching your child new skills and also when it comes to implementing behavior intervention plans. Your ABA team also consists of the behavior technician who will be working with your child directly. As an advocate, do not shy away from asking questions and demanding the best services available. ABA therapy is already the treatment of choice for ASD as it is an evidence-based practice. Be an advocate, incorporate yourself into those direct care and parent training sessions, and be sure that the services you receive are provided with the highest integrity so that your child can reap the most benefits!
All of these people come together and form a gigantic team that also includes the family and of course your child. As an advocate for your child, you cannot be a passive member of your child’s team. You want to be a leader, paving the way for the best life possible for your child. Take advantage of the education that is out there and available to you. Take advantage of the training opportunities your BCBA Supervisor can offer through parent training.
Additional Resources
- www.aap.org/autism
- www.healthychildren.org
- http://www.researchautism.org/resources/reading/index.asp
- http://autismspeaks.org/
- http://autism-society.org/
- http://autismnj.org/
- http://ahany.org/
For more information about Attentive Behavior Care and how we can help your child, please contact us today.