What Went Wrong With Our Early Intervention Program?

As most of you following my blog know, Beth made little progress with intensive early intervention from age 3-4. Then we quit and went it alone for the most part, although we see a speech therapist and music therapist (and we have had intermittent help from Floortime and occupational therapists along the way). This year of homeschool has been great for so many reasons. I have confidence that I can teach Beth anything, her engagement is way up, and she has made some amazing academic progress. She is still quite delayed in language and social areas, but she is definitely progressing.  Recently Beth is showing signs of the beginnings of school readiness (noticing other children and following them in stores and on the playground, more self-regulation on outings and on the playground, more language for expressing basic needs and communicating ideas, ability to sit in a chair and attend to school work for short periods, and in general she is just calmer). So, we are contemplating talking to the public school this winter regarding placement next year.

In preparation for talking with the school, I pulled out Beth’s old IEP (the learning contract that the early intervention therapists followed from 3-4). Suffice it to say, it made me feel a bit sick to my stomach. If only I knew then what I know now. And as we did in Corporate America after a project that was filled with problems was over, this post will be postmortem of our Early Intervention Program and will outline lessons learned. The goal for me is to not make the same mistakes twice, but I also thought I would share this with others so they can avoid these kinds of mistakes from happening in the first place.

Too Many Goals, Too Many Therapists, Too Many Hours

We had 27 goals (behavioral, occupational, speech, and physical therapy goals) in Beth’s IEP at 3 years old. I did an informal survey of parents who have kids with autism and they all agreed that 27 goals is far too many for a 3-year-old. Our initial goals were set by a special education teacher who was in charge of Beth’s evaluations and paperwork and they were largely copy/paste with the assurance that “the team can just change the goals once they work with her.” But what I found is the team kept hammering on the original goals, and revising the goals only happened 8 months later after it became clear we were not meeting any goals (except 1 PT goal) and I pushed hard for revisions. By that point there was infighting about why things were not working and soon after a valuable team member quit. I removed speech therapy from the plan because the speech therapist didn’t seem to want to step on the behavioral therapists toes with their “verbal behavior” work and was not adding value and I removed physical therapy because Beth was the least delayed in that area and the physical therapist said, “It is the least of your worries.”  

So, 8 months after starting intensive therapy at age 3, Beth was a stressed out mess and she wasn’t progressing. We had IEP meetings and came up with some new strategies and goals. The team tried to re-write the IEP, but the IEP was still complicated and it had almost the same number of goals. Subsequently, Beth did not improve in preschool, in the home-based program goals, or in her stress levels (aggression and sleeping issues were at their worst and life was miserable, especially for Beth). So, at the age of 4, we took a break from all services after preschool was done, because we decided to let her calm down while I taught her myself. Now after 1.5 years of working with Beth on my own and looking back, I believe a significant root cause of Beth’s unproductive year in early intervention was simply too many goals, too many therapists, and too many hours. We had 6-7 therapist at the beginning, they worked for 4 separate companies, and the behaviorists had a 3 tier management hierarchy that impeded innovation and quick changes to the IEP. In addition to the bureaucratic problems with the program, Beth was still in a prolonged stranger anxiety phase and integration was such that she could barely interact with two people she knew (like my husband and I) at the same time let alone multiple strangers, which meant all those therapists coming at her for 20+ hours a week was simply overwhelming. And underlying those problems was that Beth just wasn’t ready for the program and many of the goals in her IEP .

Misunderstanding of Readiness and Unique Developmental Path

When I look at the goals in her IEP at 3 years old, what stands out is that she was not ready for many of the goals in the document. I know that because she is just now meeting many of them and I witnessed her development unfold over the past 1.5 years. So I guess there was an assessment and goal setting problem. But Beth also does a lot of developmental dipping. She will do something once or twice sometimes, but she may slip back into a previous developmental stage again and stay there until she is really ready. The appearance of Beth being ready for more than she could handle with communication and academics fooled both me and the therapists, and led to problems in goal setting. In addition, Beth had very uneven development and we had numerous goals to choose from ranging from 12 month level to 3-year-old level. When I look back now at which developmental milestones came first, we were totally of the mark in the goals that we chose.

Since it is difficult to assess when Beth is ready for goals and she is all over the “typical” developmental map, how should we have set the goals? The only answer in my mind is we must use her strengths and interests  and simultaneously have the developmental map in mind so that we could recognize when she is truly ready. It takes a lot of experimentation and revisiting things you have tried before that did not work. It also takes innovative teaching to find her true abilities, because fairly severe motor planning, attention, and communication issues muddy the picture. Unfortunately, using her strengths and interests did not happen and innovative teaching was lacking.

Missed Opportunities for Using Strengths and Interests

According to the “typical” developmental chart, Beth had some higher level academic abilities at 3 (for example, she knew colors, shapes, numbers, letters), and those were not set as goals because we were working on other things according to the VB-MAPP (I will go into some detail about my issues with the VB-MAPP in another post, because I have a few big bones to pick with it). The biggest mistake is that we did not use what she already knew, like colors, shapes, and numbers, for goal setting. We were trying to get her to play with typical toys, name objects, play certain physical games, and use her hands for certain tasks. Why didn’t we just have her name colors first?  Why didn’t we go straight to making letters for hand-use goals since she loved them so much? We could have done a letter obstacle course. She liked iSpy books, why didn’t we start there for the receptive language identification and make books that looked like her iSpy books. So many missed opportunities. And by the end of the year of early intervention, we were all so busy trying to get her to talk and do new things, she had forgotten colors, shapes, numbers, some letters, and how to do the iSpy book. I will never make this mistake again. If Beth goes to school next year, her strengths and interests will be in that document somewhere and it will not be forgotten this time around.

Lack of Integration of Goals

Why separate verbal goals from physical and occupational therapy goals just because they have different therapists? Based on goals that we have met in the last 1.5 years on our own, I believe that all the goals should be integrated. For example, on Beth’s old IEP we have ball play goals. But we do ball play now for social interaction, listening skills, and slow expansion of her visual scanning (we started by throwing it directly at Beth, now we are moving away from her core and up high or off to the side).  We even taught her to count while playing ball to extend her time playing and to work on counting and she loves it. She loves it so much she will toss a ball back and forth with another kid now. Ball play is not just a PT goal, it is a PT, behavioral, speech, and OT goal. Beth, like any other kid, learns best in an integrated fashion.

Physical Issues are Primary Problems, but Were Not Adequately Recognized or Addressed in Many Goals

This is a goal in her old IEP: “Will demonstrate improved visual motor control (coordinate trunk, head and neck control with vision) to complete an activity with minimal to moderate cueing, i.e., scanning for materials and direction from variables sources over 3 data collection points.” I believe that was an occupational goal and I think it was trying to get at one of Beth’s core issues, which is that she has physical problems which make doing nearly anything academic hard for her. Motor planning, low tone, and head/neck issues are the reason she has trouble sitting on the floor, sitting in a chair or attending for long periods, and scanning for items during reading and other activities. As it turns out there were many IEP goals written by the behaviorists that required her to do these things, with no regard for how physically difficult it was for Beth to do the tasks or how to accommodate her. Again this is partially problem of integration of IEP goals and ideas across therapists, but it also reveals what can happen when behaviorists take over a program and don’t consider the reasons for “behaviors” and don’t consult the other therapists. Basically, they were working in a silo. Maybe if they would have discussed the visual scanning issue, they would have realized that visual scanning tasks (like beginning iSpy books with only a few items) should really be the first goal, not matching a field of ten identical and non-identical items (yes, that is an actual goal from her IEP, sigh).

Onward

The past is the past, and I can’t change it. But going forward, any future IEP in school will include the following:

  • There will be a minimal number of therapists involved. I want the teacher to be the leader, with mostly consults from other fields (except speech therapy). If I can’t get people to integrate, then this is the best I can do.
  • There will be minimal targeted goals that are at the right level.
  • Beth’s interests and strengths will be stated, as a starting point or as a teaching strategy in every goal.
  • The goals will be integrated, with underlying physical issues appropriately recognized and accommodated.
  • Beth’s optimal learning strategies will be specially stated, in an effort to get others to use the strategies we have developed through long hours of experimentation.
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2 thoughts on “What Went Wrong With Our Early Intervention Program?

  1. Marcia Hawley Bakemeyer, OTR says:

    Tammy, thank you for your insights as a parent and your objective criticism of the “system”. As an early intervention OT, I also struggle with the frustrations you have so eloquently addressed. One of the frustrations is that often our goals or outcomes have to meet certain criteria established by our respective state requirements in order to comply with reimbursement regulations. These guidelines are usually set by management types who are not “on the frontlines”. I strongly believe in using the outcomes as a measurement of progress, but working on the foundational skills that are developmentally based in order to reach that skill level. I find that some therapists are taught to work on the particular task identified as an outcome rather than building foundational skills. I agree that having too many therapists and too many goals tends to muddy the waters, and can be detrimental. The agency with which I am contracted advocates for a primary provider model with consultation from other supporting therapies, which is great as long as there is good communication. Unfortunately, states and federal governments and insurance companies provide very little reimbursement, if any for “communication among team members”. Often requirements change several times per year if not monthly. I hope this doesn’t sound like an excuse because it is not meant to be one: I love my career and wish I could do it for free, but I am the provider for my family and I figure I do about 3 hours of work a day gratis. After more than 30 years of experience in a variety of settings, I have not seen much improvement with increased “management”. I hope we can help parents be more educated and empowered, therapists who listen and respect, and regulators who are more flexible.

    • grahamta says:

      thanks so much for the comment. I totally understand. I really do think it is a system problem and coordination problem. I would like to see more innovation from the therapists, but most I have dealt with are well-meaning, hard-working, and trying their best giving the crazy set up.

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