Friday, July 13, 2012

Torn Apart

We are having a major issue here in Alabama with hearing impaired children and AVT services. In the past, Early Intervention (birth-three for those who have the potential to fall 25% below peers w/out disabilities or those with actual diagnosed disabilities-for the correct definition, click here) In the past, an EI coordinator had worked in the building of our local HEAR Center where many happy children and happy parents receive services for audiology and AVT (auditory verbal therapy). This is part of Children's Hospital and a preferred clinic for many parents and in the past EI has been very supportive of their services.

To give you an idea of how they work, a child is usually diagnosed with the hospital, seen by the ENTs who specialize in hearing loss in children, get proper advice from the professionals as to their many options from sign language, cued speech, Auditory Verbal therapy vs. Speech Therapy, etc. and other options such as hearing devices like Baha, Cochlear Implants from various companies, hearing aids, and other options. For those seeking the cochlear implant route, they usually require families who are eligible to use an AVT in their office who can not only provide the proper therapy, but help the in-house Audiologists getting proper MAPping for their implants or proper adjustments for hearing aids, etc. I've personally been there when one of my children were in therapy, the AVT determined they needed to boost a certain sound for them, and all we had to do is walk across the hall, take five minutes and get that adjustment, and then go back and finish therapy. I personally found this vital for the first year or so after my kids received their hearing devices.

The AVTs are in a clinic setting, but parents go back with the child and are trained how to continue therapy outside the clinic doors, with pretend play from everything from swimming, grocery shopping, bedtime routines, almost anything you can think of using the children, parents, therapists and pretend kitchens, dolls, toys and games of just about any subject you can imagine without having to actually take you through a store, or sit through a bed time routine or going shopping with the family...very similar to the way some EI Speech Pathologist would do inside the doors of a home however not all are not trained in the Auditory approach, they are simply Pathologists. Most therapists would use the pretend play to teach the children and parents no matter what room they are actually located in. The only difference is that in the clinic, they are certified in AVT whereas most used in EI are not. My opinion is the few that have some knowledge of the AV approach can't possibly take on the additional work load for these kids for weekly therapy.

As of late, EI has determined to pull AVT from select families and justify it by saying that using the HEAR Center clinic, is not a natural environment. I just have a problem with that IF THE PARENTS who are the team leaders prefer this setting. Afterall, aren't we, as parents the child's natural environment? Aren't we attending and learning from the therapists? Aren't we doing "homework" and returning week after week with progress? Even though my family graduated therapy years ago, my heart goes out to these families who use EI and the HEAR Center and now are faced with services being pulled. The HEAR Center itself are co-creators of the group PEEPs (Parents Educating and Encouraging Parents) a state-wide parent mentoring group which I also helped develop. They are really dedicated to these kids first and foremost and knowing that EI pulling kids away from this clinic because they can't offer in-home visits is absurd to me. I feel like it is EI who needs to read the clause in IDEA Part-C which states that some kids can't get the best results from therapy in a natural environment so if the TEAM decides that it is proper to visit a clinic, so be it. At least that's the way I understood it. I also feel like removing services without the full team (especially team leaders) is also non-compliant.

Parents are also finding out that their insurances will only cover a portion of the visits that are also in limited number and come to find out EI has been billing their insurance all this time and now they are down to half a year left with very few visits left that insurance will cover. So in my opinion, EI needs to use the Federal Funds they were given to cover these visits and not bill their insurance since many of them are going to be stuck using this vital insurance and paying out of pocket to continue their certified Auditory Verbal Therapy where they CHOOSE to have it.

The good news, is that parents know this isn't right. They are fighting, they have ADAP on their side, and are already making great progress in this EI debacle. I also feel like this is a great opportunity for these families to look at the Alabama School for Hearing. My hope is that this will be an opportunity for this great school to grow. I would be great for this preschool to be able to expand and help kids younger than preschool age should these services be removed from the clinic as EI wants. That would take lots of money they don't have so I don't see that as an option right now. I'm not sure how this will all work out for them, the families, but it breaks my heart that I have bragged on how lucky we were to have deaf children in Alabama and have such wonderful coordination from all groups and services, and now see how that is falling apart.

And in case anyone from EI or the HEAR center reads this, I am basing all my info from parents....unhappy parents...not from professional opinions. I see desperation in parents who have kids that were flourishing and it's scary to know that removing services, or even reducing or compromising them in anyway, will have a negative affect on the kids. Hoping to get this all resolved soon and wishing those families the best. Always lean toward trusted professionals who keep your CHILD(REN)'s best interest at heart. These are my opinions and I do imagine if EI had proper AVTs in place that COULD go into ALL of these homes WEEKLY as many children need, I may feel differently but they do not. And I also want to stress how important that first year is of MAPping and how easy it was for us having it all there in one office. I do want to say that there are some really really great professionals inside all of these services and clinics. I do not blame the therapists at all. They have tremendous work loads and doing what they can to help and most of them have the kids best interest at concern is those not working directly with the be continued, I'm sure.

Good Luck,
Val (PEEPs)

No comments: