Adventures in Early Intervention

Early intervention is key…… Early intervention is key…… Early intervention is key…

How many times have you heard that? Parents of children newly diagnosed with Autism are immediately told to get their child into intensive treatment. There is a sense of urgency to this recommendation, and if you are lucky you are handed a list of agencies to contact. If you’re not so lucky you get to research, locate, and narrow down agencies on your own.

But what if you dont know who to contact? Or you dont know which treatment to select? Or you contact several agencies and none of them have openings?

The process of locating and then enrolling your child into early intervention services isn’t as simple as it sounds. The idea that you can get a diagnosis, enter into early and intensive treatment, and voila...everything works out great is more fantasy than reality for some families. 
The early intervention process can be a chaotic and frustrating series of misadventures that include  false starts, mounds and mounds of paperwork, a parade of professionals and therapists coming into your home, funding issues, and waiting lists. In addition to being a complicated process its also very stressful due to pressure parents feel to pick the best treatment at the best time, and the stakes are high.

Below is some information about what to expect from the early intervention process, based on what parents have told me about their experiences. Early intervention services will vary greatly from state to state, so some of this information might not be applicable for your area:

-          Document Everything: From the time you get a diagnosis for your child (or even before) start keeping a record of all doctors visits, evaluations, medications, etc. Keep a journal of behavioral notes about your child including a brief summary of pre or post-natal abnormalities. Your journal should include information about the pregnancy experience, birth, and developmental milestones leading up to the actual diagnosis. If you can include actual dates with your notes, that’s even better. This is helpful for a few reasons- - As you start seeing various doctors and professionals you will notice that many ask the same questions over and over. If you have a journal of your child’s history, then its a much easier process to give background information about your child to each professional. Keeping documentation is also helpful because it gives you a record to refer back to later. When your child ages out of early intervention and enters school, the school system will find a record of your child’s development and therapy history very helpful.
-          Require Documentation from Professionals: As you start the early intervention process you will talk to or receive services from many different individuals. ST’s, OT’s, pediatricians, doctors, psychologists, behavior specialists, etc. Each new professional may tell you they need to do an assessment and evaluation of your child. What they might not tell you is that sometimes they can use prior assessments instead of doing a brand new assessment. In other words, instead of paying 4 people to assess your child you can use 1 assessment 4 times. Every professional who observes, assesses, or evaluates your child should be able to provide a written report of their findings. Keep these reports, as you will need them again later.
-          Ask Questions!: This one is so important. In order to get the most out of early intervention services you need to understand what's going on. If a professional tells you that your child has “Global Receptive Language Deficits”, do you know what that means? If the doctor recommends a biomedical protocol, do you know what that is? If your insurance company denies ABA coverage because they state Autism is an educational diagnosis, do you understand what they are saying? Ask questions until you understand what a professional is saying, and if they make you feel stupid or uncomfortable for asking questions then find a new professional immediately. The professional should explain their services, their findings, and their recommendations in clear and simple terms that are easily understood.
-          Be Prepared for Service Transitions: Children with special needs have access to free early intervention services from birth to age 3, at which point the school system is responsible for providing services. That means if you don’t receive a diagnosis of Autism for your child until they are 2 years old, then you will only receive 1 year of early intervention services. Or if your child received a diagnosis at 15 months old and then sat on a waiting list for 13 months, the cut off is still age 3. Even as you begin using early intervention services, it’s important to plan ahead for what the next step is once the services end. Will you place your child in a preschool environment? If yes, at a special needs school or no? Will your child receive therapy services in the home? If yes, what kind of therapy and how will you fund services?
-          Quality May Vary: I have heard many stories from parents about rude, unreliable, or unprofessional early intervention specialists who worked with their child. The therapist might show up late for each session and then leave early. Or the therapist never returns your phone calls. Or maybe the therapist has been promising to get that evaluation report to you for over 5 months. Just because a service is free does not mean poor quality is acceptable. Speak up about rude and unprofessional treatment, and contact management of the organization to resolve the issue. Parents sometimes say things to me like “Well, my child only sees this person once a month. I don’t want to make a big deal about it”.  The point of early intervention is to get your child school ready and to address as many deficits as possible in a limited amount of time. In order for that to happen the quality of treatment is very important.
-          Beware of Ridiculous Waiting Lists: 6 months, 9 months, 1 year, even 3 years. These are all pretty standard amounts of time to be placed on a waiting list to receive Autism services. The reality is the number of children needing treatment is exploding, and the number of professionals in the field isn’t keeping up. So rather than being surprised by severe waiting lists, you should expect it.
 I'm not saying you shouldn’t place your child on a waiting list to receive an evaluation or treatment from a reputable agency or professional. My question is, while you are on this waiting list what are you doing in the meantime? If you can afford to, hire a private therapist while you are waiting for a spot to open up for a free early intervention agency. Enroll your child in a playgroup or social skills program until that spot becomes available. At the very least you can read books, do some research, and start working with your child yourself. What’s most important is that you take advantage of the time you spend on waiting lists, because you cant get that time back.

Research and best practices consistently recommend early intervention services for children with Autism. However, for many different reasons it wont always be possible to secure quality early intervention for your child. Some parents don’t get an official diagnosis until their child enters the school system, and is way past the cutoff age for early intervention services. Or you might live in an area where there are no early intervention agencies or services. Don’t think of early intervention as only meaning “Birth to age 3”. Once you become aware that your child has Autism or some type of developmental delay, as early as you can begin intervening with quality treatments or therapies. 

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