Ask A Therapist: Oral motor therapy for an adult with Down syndrome

Hello TalkTools,

I appreciate the opportunity to have my question regarding the potential benefit of securing oral motor therapy for an Down Syndrome adult being answered by a group of therapists who has exhibited such an understanding of the progression of the oral motor appearance of Down Syndrome children.

In regards to a Down Syndrome mature adult with a very protruding (and getting more protruding) tongue, is it possible to reduce the appearance of the size of his tongue and the degree of protrusion, even in an adult via oral motor therapy? Might such oral motor therapy prevent future swallowing issues from arising?

Conversely could a current failure to provide oral motor therapy to reduce the individual’s tongue protrusion and/or enlarging size of tongue at rest, hasten/lead to future swallow problems?

Have you had personal experience of dealing with an Down Syndrome adult? And if so, what degree of improvement was obtained?

In addition to the potential swallow deficits that I am mostly concerned about, my heart breaks for the individual, as he is stared out everywhere when he is out in the community due to his very protruding tongue at rest.

I read with great interest the article by Sara Rosenfeld-Johnson on the development of oral-motor issues in the Down Syndrome population. I wish I would have seen this many years ago. In our case, it is way too late to prevent the Down Syndrome oral motor myths.

The question to you is this: Is it still possible to correct some of the oral motor manifestations seen by Down Syndrome individuals in an adult? In a mature adult? Can doing so prevent future deterioration? Have you personally attempted to do so? With what success level?

If you recommend oral motor therapy in such an instance which I cited: Are there any medical diagnoses that are legitimately available that would make the therapy coverable by Medicare/Medicaid?

Very truly yours,

Rachel

Hi Rachel,

I have received your questions and will do the best I can to answer them all.  I hope I am not missing anything. Yes, you can change the oral motor patterns and therefore tongue retraction in adults with Down Syndrome. I have worked with adults with Down Syndrome and have seen the patterns change and have had success with this program. The main thing that determines their success is the amount of practice that they are able to do between my sessions. It is recommended that they practice their home program a minimum of four times a week. The more work they do at home, the more progress I see. You will not decrease the size of the tongue but you will increase the strength and retraction and therefore change the pattern of the swallow.  This can decrease swallowing issues. I would think that the therapy by a Speech Language Pathologist should be covered. The parents I work with bill their own insurance so that would be determined based on the individual policies.

I hope this helps. Please let me know if you have other questions.

Thank you,

Liz Smithson

Hi Liz,

Thank you for the promptness and depth of your response. I was amazed. Thank you. I really appreciate this opportunity to hear your answers.

To make sure you haven’t missed anything, I will expound. I am referring to a 54 year old. His tongue can protrude way below his chin at rest. I believe that this condition however truly only got worse recently. To my knowledge, he has not received therapy for this condition, certainly not within the past 15 years. He has a severe reverse swallow.

I would be willing to commit to practicing with him twice a week and can try to bring his direct care worker, who is exceptional on board. What are we talking about here: how many sessions? Over what period of time? What is the range of number of lessons?

1) Do you know any qualified therapists personally in the NYC area who have experience and a positive track record with the Down Syndrome adult population? Do any of them do evaluations/therapy? Do they permit family member or direct care taker to sit in during speech sessions so that they could learn how to work with this individual in house?

2) I have focused on the oral motor aspect because that is what everyone sees first and what I fear can cause him swallowing problems, medical issues, moving forward if it is not addressed now. I would love, however, to see him receiving some therapy to increase his expressive communication, perhaps via a prescribed device i.e. an iPad or some similar devices.

3) What speech/tongue conditions/diagnosis are reimbursable in your experience? Is a swallow test a mandatory prerequisite to making oral motor therapy that is covered by insurance?

I am constantly told by those that advocate for him that success is not possible for him. Have you, or anyone you know, had success with adults of this age bracket? Longevity actually runs in our family. So we are hopefully talking about many years of benefit and prevention of further issues for the Down Syndrome individual.

To me, 54 is still young. But I am told such is not the case with Down Syndrome individuals as they have much shorter life spans. Have you found this to be true based on your experiences?

You are providing me with very pertinent information and strength on his behalf. I need to hear from someone experienced that his conditions can potentially improve with therapy. I can see no other choice but to try. The previous speech pathologist I informally spoke to (on a train) also shared with me that improvements can be secured, even in his population.

Thank you.

Respectfully yours,

Rachel

Hi Rachel,

I am happy I can help.  I am going to try to answer everything without leaving anything out but if I do please let me know.

As far as how often to have the direct care worker work with him, I would recommend a minimum of two times a week in addition to your two, but anything she could do in addition would just increase the progress.

I do not personally know any therapist in NYC, but check the TalkTools “Find a Therapist” page. It lists Therapists Trained in Level 3 or higher levels in TalkTools Therapy. I would try to do an evaluation with one of them, if you can, and then you could do the follow up treatment. Typically, TalkTools Therapists encourage anyone else implementing the plan to be present for the evaluation, if possible, and often encourage you to video it if you can.

As far as reimbursement goes, that would depend on the individual plans and I would assume it would vary from state to state.  I do not currently do any insurance billing, so unfortunately am not able to answer that question.

I have not worked with any clients with Down Syndrome that are that age. I have worked with adults but all were younger. I would recommend that you try and see if he is making progress. That is how I have always approached new patients in the past. We give it our best shot and see how they do.

I hope this has helped. Please feel free to write me back if you need to. I wish you the best of luck and please keep me posted on how it is going.

Have a great day.

Thanks,

Liz Smithson