Wednesday, February 10, 2010

Early Intervention: Parent-centered team

Even though we are just outside of the Early Intervention system, since Braska turned 3 in November, I still get a lot of contacts and questions about the differences in EI services in different states and even other counties in Missouri.  Ria has been communicating with someone about this and posted their conversation on her blog today.  It sounds like this mom that Ria has been talking to has been put into the new model for EI that some places are transitioning to. She asked for some input into our experiences.

In St. Louis County, next door to ours, the First Steps Program has been trying out a new parent-centered team approach with new parents and transferring families.  From what I learned via word of mouth from a few in the administrative side of the system, St. Louis County agreed to be part of a testing or trial program with this new approach.  So far, I’ve not heard many families who are pleased with it, unfortunately.

To contrast the two, let me first summarize our experience: Braska had in-home therapies with First Steps from the time we moved to Missouri when she was 18 months old.   She had weekly speech therapy (ST), occupational/feeding therapy (OT), physical therapy (PT), and she also was seen by a nutritionist/feeding specialist due to her G-tube and difficulty gaining weight.  We made some adjustments to these over the past couple years and changed OT to every other week for a while, slowed ST to every other week for her last 6 months in EI since she was so self-motivated and ahead of the curve in her speech skills, we had PT at Braska’s school for a while, and we changed the schedule for the nutritionist as well.  But even in all this, we still had each provider of their particular specialty coming to treat Braska hands-on. 

When Braska turned 2, she went to what I called “pre-preschool” for two hours each Monday.  The teacher was a developmental therapist (DT) and it was a great experience.  Braska loved it, she learned a lot, and I firmly believe it helped her with the transition to preschool when she turned 3.  This was an added benefit to the home-based therapies, but I wouldn’t want to have it be the only thing.  I wouldn’t have wanted a group setting with one therapist to be her only treatment each week.  In some cases, I’m told that’s happening.

The guru for what is called the “team approach” around here is Robin McWilliam, Ph.D. (He has a blog here if you’re interested.)  He’s widely known in the field of EI for promoting what he calls a PSP or primary service provider model.  My paraphrase of the model, combining what I’ve read and what I’ve heard from parents who have been in it, goes like this… There is a team of providers—PT, OT, DT, ST, etc.—who meet regularly to discuss little Suzy.  They are all involved in working on her IFSP goals and they are all familiar with her.  BUT not all of them have met her, and in many cases they may not.

The feature of this model, also called the transdisciplinary model, is that there is one person identified as the “primary service provider (PSP)” and that person is who sees Suzy in the home regularly.  That person conveys all the instructions and thoughts or concerns from the team.  The PSP is usually the therapist who deals with the child’s most delayed area, as far as I can tell.  For instance, if Suzy is 2 and she walks well and eats well and can scribble, but she doesn’t use words yet, she will probably have the ST be her PSP.  What that means is that the ST will come to the house weekly or biweekly and work with Suzy, but she will not only do ST but will also address concerns in PT or OT areas also.  The PSP will research and discuss with the other team members issues that come up and she will then report back to the parent.  But all concerns about any modality will go through the PSP—the ST in this scenario.

To me, it’s clear why this approach is frustrating for a parent.  What if my child has two areas that are in great need of work?  What kind of delay in answers must come when a parent must ask an ST about the inversion of her child’s ankles and wait for the ST to talk to the PT and then get back to the parent?  Wouldn’t it always be wiser for the provider who is offering the advice to be the one actually seeing and working with the child?  From what I’ve been told, parents receive a lot of handouts and information for where to research and find their own answers for issues that might come up.  This is better than nothing, maybe, but it still pales in comparison to the idea of a person, trained in THAT field, observing the child and discussing the plan with you.

I’m told by those who know these things that being in this trial group is not mandatory in St. Louis County, though they don’t tell you that, and that you can opt out of this team approach.  But last I heard, they were putting 1 out of 4 new families, either by birth or by transfer, into the new model.  And there have been quite a few unhappy families.

We’re just one county over, and we did not participate in this model. I’m thankful for that, though I’m told that all of Missouri may end up going this route soon if some people in high places have their way.  We’ll have to see.  I hope that’s not the case.

I can’t imagine having to deal with one person about all our issues…G-tube, no/limited oral feeding, not walking, and very delayed fine motor.  I can’t imagine the strain on any therapist who would have been put in the position of our PSP.  I can tell you that I wouldn’t have been fun to be around much after about a week in that system.  It just doesn’t seem like the best interest of the child is in the forefront in this system.  Maybe some like it, maybe some have had success, but for a child with multiple delays and challenges, it just doesn’t seem to make sense.

Have you had experience with this new approach?  Thoughts?

4 comments:

  1. My gut reaction is that it would completely and totally depend on the PSP. Like, the OT we had through EI had tons of experience, was really smart and quick, and clearly had worked enough with other providers that she could tell us stuff about PT or speech. I wouldn't have minded (much) if she had been the prime contact, although I still prefer the variety of specialists. But the first "educator" we had? Wouldn't have been good at all.

    I am sure it all comes down to $$. I have no answer for that.

    ReplyDelete
  2. Cate--I forgot to mention it, but yes, I feel sure it's a money saving issue at the heart of it. I would think a therapist would get paid less for sitting in a meeting discussing a kid than actually spending 60 minutes treating the kid.

    And it kind of seems like an HMO in that way...everything goes through the primary, trying to cut down on visits that can't be handled by that one doc/provider. I guess we'll see if it goes the way of the classic HMO.

    ReplyDelete
  3. We had experience with both EI models. From birth to 14 mo, we had what you did: a variety of therapists doing sessions at home. We loved it, felt like it was very successful, but then we moved. From 14 mo-3 yrs, we had the team plan you discribed. I hated it. We only got 45 mins a week with 1 person, who spent about 10 mins on each area, then 15 mins writing a report, giving handouts. Hated it hated it hated it.

    I def. felt like the benefit was to them, financially, and not at all worth it to the child.

    ReplyDelete
  4. My experience has been similar to yours. Goldie has 2-4 therapists a week, each with their own specialty. I did attend a presentation on routines based early intervention. Goldie's therapists have implemented this with us by showing us ways to include "therapy" in our day to day activities. I checked out McWilliam's blog and found some things I agree with and some I don't. I think PSP is not in the child's best interests, but routines based EI can allow for more learning and progress between therapy sessions. Thanks for such an informative post.

    ReplyDelete

Thanks for commenting!! I only ask that we all keep it positive, respectful, and clean. Comment moderation is on for now. (As this is my blog, I reserve the right to delete any comment I deem inappropriate for any reason.) If you use the anonymous option, be sure to sign your name. Thanks!!

Make it a great day!!