Early intervention parents.

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Author Message   Greeneyes Citizen Username: Greeneyes Post Number: 763 Registered: 8-2001 Posted on Friday, March 10, 2006 - 10:50 pm:        My 14 month old son was evaluated for early intervention services (PT and OT). He qualifies for services and a pt and ot have called me to schedule appointments to begin therapy. While I was speaking with the pt, she scheduled the appointment like the cable company. Her part of the conversation went like this: I'm thinking Tuesday. After lunch. After lunch for sure. Between 1 and 5pm. Probably close to two. I will call you after lunch, like at 1 to say, It's 1 and I'm on my way, or it's 2 and I'm on my way. When this pt called me initially she left a message on both my home and cell phones. I thought the caller was a friend of my teen daughter. The way she spoke sounded like a teen- ager. Especially her usage of the phrase, "I'll hit you on your cell" Is this the way appointments are scheduled? This will be his first session with the EI pt. This just seems really unprofessional to me. Any feedback from other EI parents would be appreciated since I'm new to this and I haven't a clue what to expect. PLs are fine, just let me know you sent one. Thank you.   Elizabeth Citizen Username: Momof4peepers Post Number: 30 Registered: 12-2005 Posted on Friday, March 10, 2006 - 11:01 pm:        I can only speak of my experience in other states (MA and IL) we have yet to actually connect with our EI service coordinator here. In MA, the therapists were IMHO VERY young - like right out of college young. Like, maybe **I** as the mom could do a better job than you could. At the time, I just assumed it was because it was a stopping point for these therapists who were unable to get a job anywhere else (there was a glut of PTs about 5 years ago - I only know this because my cousin went to college to become a PT and he couldn't find a job anywhere). In IL, our therapist was older, had much more experience, but also gave me more of a "window" - but NOT 4 hours! At the time, she explained that it was because sometimes sessions with difficult patients went really well and she hated to end them. Or sometimes nothing would work, and it just made sense to end (which happened frequently with our 15 month-old). At which point she could start earlier. HTH   Reesa Citizen Username: Reesa Post Number: 114 Registered: 7-2005 Posted on Friday, March 10, 2006 - 11:54 pm:        I am a speech language pathologist who has done a good deal of early intervention in NY, so I can't speak for New Jersey; however, I would never speak to a parent like that. The biggest window I would give is 30 minutes, and really just for the first session, in case I wasn't sure how long it would take to get from one house to another.   hismom Citizen Username: Hismom Post Number: 388 Registered: 5-2001 Posted on Saturday, March 11, 2006 - 7:51 am:        We had EI speech & PT for my daughter until last fall. The speech therapist was wonderful, professional and made exact appointments, gave us options and let us know in advance when she needed to change things. The PT was a mess and I never really knew when he was coming - they wanted to come at 7:00 pm some days - for a 2 year old! I ended up calling our case manager and we changed to a different service provider for PT. I would talk to your case manager through the county and tell them what you are experiencing. You should NOT have to hang out all day waiting, it' s totally unprofessional. PL me if you have any questions.   Oldstone Citizen Username: Rogers4317 Post Number: 623 Registered: 6-2004 Posted on Saturday, March 11, 2006 - 8:01 am:        excuse me, i don't want to interrupt you because this seems like a serious discussion but what are early intervention services (pt and ot) for children as young as 14 monthes? i don't have children but you never know...   Grrrrrrrrrrr Citizen Username: Oldsctls67 Post Number: 367 Registered: 11-2002 Posted on Saturday, March 11, 2006 - 9:53 am:        It depends on the person...We had to call a couple of times until they finally sent us someone reliable...   Lizziecat Citizen Username: Lizziecat Post Number: 1096 Registered: 5-2003 Posted on Saturday, March 11, 2006 - 10:29 am:        Oldstone: Although I am not a parent of a child who benefited from early intervention, I am the grandparent of one, so I shall try to answer your question. Early intervention is a program designed to treat children under the age of three who have been diagnosed as having some disability. The earlier a child is diagnosed and treated, the greater the chances are for improvement. In New Jersey, the program is funded by the county and the parents do not pay anything--at least, I'm pretty sure they don't. In my granddaughter's case, she was diagnosed at the age of 17 months as profoundly deaf, and she began receiving speech therapy at homee as well as education at a special school. After the age of three the school district takes over and, with the parents, designs an IEP, or individual education plan, with the goal of eventually mainstreaming the child. My granddaughter, who received a cochlear implant at the age of two, was mainstreamed starting with kindergarten, and is as functional as any child born with normal hearing--maybe even more so because of the excellent start that she got. OT is occupational therapy, and PT is physical therapy, which she also had, since the deafness was accompanied by problems with equilibrium.   hismom Citizen Username: Hismom Post Number: 389 Registered: 5-2001 Posted on Saturday, March 11, 2006 - 11:13 am:        Lizziecat - now you do have to pay for EI services through the county, albiet on a sliding scale based on income. I found it very reasonable and my daughter is now talking as if she never had the "requiste 33% delay" required to qualify for EI.   cppkqp Citizen Username: Cppkqp Post Number: 103 Registered: 8-2002 Posted on Saturday, March 11, 2006 - 11:43 am:        I had EI evaluate my twin daughters last fall in an effort to get PT services. Although we had an evaluation appt. scheduled, they called one day and asked if we were available in 20 min., as they had an opening. They arrived 40 minutes later and the eval. took twice as long as they told me it would (they spent quite a bit of time sitting on my couch filling out forms). I found nearly everyone I came in contact with to be very unprofessional - specifically: cavalier in their attitudes; vague in their explanations of what they were doing and how the process worked; and comepletely uninterested in what I wanted for my children. One day they called to confirm a meeting in my home that they had scheduled but failed to inform me of. When I asked what services we would be discussing, they they would talk about that with me at the meeting. Although I was seeking PT for both my girls, they offered only speech therapy to one of the girls. I declined. I found EI very frustrating to work with and incredibly slow to take action. The girls have been in the excellent care of the Pediatric PT dept. at the St. Barnabas Ambulatory Care Center. Fortunately our insurance covers PT and the girls have made tremendous progress.   Greeneyes Citizen Username: Greeneyes Post Number: 764 Registered: 8-2001 Posted on Saturday, March 11, 2006 - 3:18 pm:        Thank you for your responses. cppkqp- My son is currently having Pt sessions at ST. Bs. He has had progress and I'm happy there. It was the PT who told me about EI. My insurance does cover pt also, so I am thinking of opting out of the EI PT and continuing at St. Bs. My son cries during his PT sessions and the pt thought he might respond better at home. EI has been incredibly slow. We're on month two and services haven't started yet. The intake worker gave me the time frame from our initial conversation and so far it has been right on target, so I haven't been surprised. I have been disappointed at the slowness, but not surprised. I found the EI evaluators to be professional. They set the appointments and arrived on time. Although the OT was ill on the eval day, they sent another OT later the same day. I did have some issue with the findings of the evals. It seemed, like you said, they filled out forms and in my case they didn't seem to do much evaluating. They questioned me about my son's skills, but didn't test him on their own. Their report does reflect that. The workers I saw were very interested in what I wanted for my son over the next three months and were honest in what could and could not happen for him. They also explained everything in detail. So I guess it's who you get. I knew absolutely nothing about EI. My pediatricians, soon to be former pediatricians, provided zero information and I had to insist on referrals for evals. Hismom and Lizzie, At the initial financial intake we were told that we would have to pay for services, at the final intake we were told that we would not. The only information that was different at the final intake was we were asked if there were full time college students in the house. We have two. Hismom, I may pl you in the future with questions if that's ok. It sounds like PT is going to be an issue. I'll stay on top of it for sure, since that's what my son needs most of all at this point. Thanks all. I really appreciate your comments.   Heather Citizen Username: Heater33 Post Number: 23 Registered: 8-2005 Posted on Saturday, March 11, 2006 - 4:31 pm:        I found out about EI through my neighbor. She noticed my son was developing slowly as her youngest did, and I had him evaluated. He is receiving three services right now and all therepists he currently has have been wonerful and professional. The first one he had was called a DI teacher - she was awful, she didn't connect with my son ever. If you think there is a problem, contact your servcie coordinator and they will help you. My son's new DI teacher is fabulous and he loves her. The old one would ask him to do something for her, and when he couldn't, she would get frustrated and throw up her hands. This to me was a good enough reason to call the coordinator. I can also mention that pediatricians will generally NOT refer you to EI...not sure what the reason is, but my EI coordinator did tell me she's trying to get the docs more involved. PL me if you have any other questions, and let me know how your son makes out with his PT. My son is getting a lot out of his!   Lizziecat Citizen Username: Lizziecat Post Number: 1097 Registered: 5-2003 Posted on Saturday, March 11, 2006 - 5:38 pm:        My granddaughter is nine now, so our experience with EI was quite some time ago. My son and daughter-in-law were not told about EI by their pediatrician; in fact they had to fight to get their child evaluated. The pediatrician said that her lack of verbalization was "normal" and she was "just slow." A mother whom they met in the playground told them about EI, and when they finally took her for tests, independently of the pediatrician, she tested profoundly deaf. This, of course explained her lack of speech, and as far as being "slow," she's at the top of all her classes in third grade. So parents have to be aggressive and fight for their kids, and if you think something isn't right, very probably it isn't. Sometimes you have to find your own consultants, arrange for private testing and evaluation, move to be near the right school and even lie and cheat to get your kids what they need.   Oldstone Citizen Username: Rogers4317 Post Number: 624 Registered: 6-2004 Posted on Saturday, March 11, 2006 - 5:48 pm:        thank you, lizziecat   Elizabeth Citizen Username: Momof4peepers Post Number: 31 Registered: 12-2005 Posted on Saturday, March 11, 2006 - 8:34 pm:        EI is mandated by the federal govenment, but the states have various levels of success with implementation. Some states require a "greater" delay than others to qualify. In NJ, a child has to be 33% delayed (I believe). In IL, it's 30%, and in MA is 20%. Doctors, in a 15-minute well-child visit, usually rely on the parents to relay any concerns about development. I've been told that doctors are more apt to take a "wait and see" approach with any other than the most profound cases because of the mistaken impression that parents can be hysterical if their child is not at the top of the range for meeting their milestones. And, doctors feel that it indicates they're not doing a good job/incompetent if they refer a patient family out for specialist testing. Having had doctors who believe they're god, I can see where this is a plausible case. But I suspect that there are also those cases where the EI program is so poorly run/managed that they don't want to subject their families to the state's incompetence. If you insurance covers services, then it may be better to stay where you are and not get into the EI system. Or, get into the EI system, document that there is a problem, then go out of the system to have your insurance cover services. Like Lizzicat says, sometimes you have to lie and cheat to get what your kids deserve.   Jennifer Citizen Username: Jkohan Post Number: 65 Registered: 8-2005 Posted on Saturday, March 11, 2006 - 9:02 pm:        Greeneyes-- can you send me a PM to tell me who your former pediatricians are? My friend had a similar experience with my current ped, and if it's the same local practice, I am going to seriously consider changing peds ASAP.   Greeneyes Citizen Username: Greeneyes Post Number: 766 Registered: 8-2001 Posted on Saturday, March 11, 2006 - 9:57 pm:        Jennifer- PL sent. Elizabeth, Thank you for your post. It's given me food for thought. It's so true about the docs. Their attitude was wait and see. They kept explaining away his delays because my son is a big boy. I kept telling them that I come from big stock. Several babies on my side of the family were more than 10 pounds at birth, and staying way beyond the growth curve until school age. So I knew his size had little or nothing to do with his delays. Heather, Thanks. I think I will PL you after the PT visit on Tuesday.   cppkqp Citizen Username: Cppkqp Post Number: 104 Registered: 8-2002 Posted on Sunday, March 12, 2006 - 11:07 am:        While some pediatricians may be likely to take a wait-and-see approach to doing evaluations, I am fortunate that mine did not. My girls were born at 33 weeks. I was told from day one that they would likely hit various milestones later than their chronological peers and that I should adjust my expectations due to their prematurity. As a result, I was not terribly concerned when they were not able to sit up at nine months (adjusted age of seven months). It was our pediatrician, Dr. Ann Marie Comadatore, who said that the girls needed to be evaluated. I am thankful that she did. Furthermore, I was told that although they used to refer people to EI, they no longer did b/c a)it was no longer free and b) we were likely to get better therapists through our insurance. (Based on a friend's experience with her daughter's speech therapists through EI and insurance, I suspected that this was accurate.) I am very pleased with the pediatric PT dept. at St. B. In order to receive EI services, a child must be 33% delayed in one skill set or 25% delayed in two or more areas. While EI agreed that my girls were delayed in their physical capabilities, they were not delayed enough. The evaluators recommeded that the girls be re-evaluated three months later. I found it absurd that EI recommends waiting to see if a child falls further behind before taking action.   Greeneyes Citizen Username: Greeneyes Post Number: 767 Registered: 8-2001 Posted on Sunday, March 12, 2006 - 8:29 pm:        Cp, Thank you so much for your comments. If it's ok, I want to send you a PL to ask a question.   Nancy Tricamo Citizen Username: Et2811 Post Number: 8 Registered: 10-2005 Posted on Monday, March 13, 2006 - 11:42 pm:        Hi, I read through most of your posts and wanted to add my experience with EI. My best advice with early intervention is to quickly get rid of someone you are not happy with. I asked for two speech therapists to be replaced before we found someone we were very happy with. The good people are there, they just seem to try and send you the people no one else wants first. You don't have to tell the person directly you don't want to work with them anymore, just call your coordinator and ask that they not return. We decided to stick it out with EI, as well as get a private speech therapist because they come to the home and this made my son very comfortable. Once we were happy with our service provider, this was the only person we continued with. My son is four now (he graduated EI into the board of ed) and we still continue to see this service provider privately. She still comes to our home. I also had a similar experience with our previous pediatrician giving us the "wait and see" answer about my son's speech delay (he was two and not saying a word). We changed to a developmental pediatrician/practice in Chatham that we are very happy with - Dr. Jennifer Shaw-Brachfeld/Touchpoint Pediatrics. Feel free to PL me if you want more information. Best of luck.   Greeneyes Citizen Username: Greeneyes Post Number: 768 Registered: 8-2001 Posted on Monday, March 13, 2006 - 11:54 pm:        Thank you, Nancy. I have the pt and the ot coming tomorrow. I hope the visits go well. Thanks for the PL invite too. I will probably be in touch.   Greeneyes Citizen Username: Greeneyes Post Number: 769 Registered: 8-2001 Posted on Tuesday, March 14, 2006 - 8:41 pm:        We had visits from the pt and ot today. The ot didn't do a session today. She familiarized herself with my son and her workspace, which was fine. She seemed to connect with my son and he likes her. The pt, whom I had doubts about, was fantastic. My son is known to zone-out when he doesn't want to do something. She made him connect with her and he really worked hard during his session today. When something wasn't working, the pt didn't become frustrated, she tried an different activity or technique to get the result she needed. There were still tears, but less of them. So far, I have to say I'm pleased with my EI experience. I worried more than I needed to. Again, thank you all for your comments.   Greeneyes Citizen Username: Greeneyes Post Number: 770 Registered: 8-2001 Posted on Tuesday, March 14, 2006 - 10:53 pm:        Heather, I received your PL, but the response line was donotrespond@ etc, etc, Thank you for thinking of me. See my post of 8:41pm. It's nice to be able to "talk" with someone who understands.   SoOrLady Citizen Username: Soorlady Post Number: 3096 Registered: 9-2003 Posted on Tuesday, March 14, 2006 - 11:21 pm:        Greeneyes - take another look at the e-mail.. toward the bottom there should be a line that says something along the lines of "to reply directly.... " and Heather's address should be there.   Greeneyes Citizen Username: Greeneyes Post Number: 772 Registered: 8-2001 Posted on Tuesday, March 14, 2006 - 11:32 pm:        Thanks SO- MY sleepy eyes missed it the first time.