This has certainly been an interesting discussion.  In my 8 years here, I've only recommended them to 5-6 pts, generally who fit most of the criteria on Duffy's list.  Only 2 that I am aware of went through with the process.  Both felt they got good benefits, although not for that long a period (6-10 months).  Those that didn't pursue it had reasons generally amounting to $$, time, and difficulty finding a good person to do the work. 
 
I recently had a discussion about them with a colleague who is a prosthodontist at the University of Michigan.  In looking back at his records, he discovered that he had only done 1 in 2010, and that insurance (don't know what type) paid about $1100 and the pt paid $400.  This is considerably less than others have discussed, so I feel I have some more research to do.  however, he did share with me this very interesting article on Palatal Lifts and Palatal Augmentation in ALS, which I am attaching here.
 
I look forward to further discussion.
 
Lisa
 
Lisa G. Bardach, MS CCC-SLP
Communicating Solutions, LLC
2314 Yorkshire Road
Suite 200
Ann Arbor, MI 48104
phone (734) 973-9670
fax     (734) 975-6970

ALS of Michigan, Inc.
24359 Northwestern Highway, Suite 100
Southfield, MI 48075
248-354-6100 x227

On Wed, Aug 10, 2011 at 11:53 AM, Tami Brancamp <xxxxxx@xxxxxxxxxxxxxxxxxxx> wrote:
I have not recommended them that frequently due to the rapid progression of ALS in some of the PALS I work with, the lack of available prosthedontists and the expense.  I often discuss the option with PALS and their family members, but ultimately we are not placing them. If the PALS fits the criteria, it should be discussed.

The ANCDS published some practice guidelines on the topic of velopharyneal function.  You can access the article via the ANCDS website (www.ancds.org). Here is the citation.

Yorkston, K. M., Spencer, K. A., Duffy, J. R., Beukelman, D.R., Golper, L. A., Miller, R. M., Strand, E. A., & Sullivan,M. (2001). Evidence-Based Practice Guidelines for Dysarthria: Management of Velopharyngeal Function. Journal of Medical Speech-Language Pathology, 9(4), 257-273. PDF

Tami Brancamp, PhD
Assistant Professor
Speech Pathology & Audiology
University of Nevada School of Medicine
775.682.7020 (office)

On Aug 9, 2011, at 1:14 PM, Coggiola, Jennifer L. wrote:

We've only recommended them for a few handfuls of patients over the last 4 years.  I can recall only four patients who got them, primarily due to the $4000 out-of-pocket cost.  Three of these patients had ALS and one had Kennedy's Disease.  They all had improvements in both nasality and speech intelligibility.  One felt the improvement in his articulation was greater than the improvement in his nasality.   In terms of progression, they were all able to wear them for at least a year. They remove them for meals so it wouldn't help with nasal regurgitation during meals.

My primary criteria has been patients with hypernasality as the predominant feature of the dysarthria.  That said, I do test out many of the criteria below.  Our neurologists also feels that palatal lifts are also more helpful with LMN hypernasality than UMN hypernasality.   Patients who complain of a hypersenstive gag will not be able to tolerate the lift.   I have scoped some patients looking at their velopharyngeal port before the referral to the prosthedontist.  However, our prosthedontist is very experienced and he really doesn't need information on velopharyngeal port functioning from me to do a good job.  His experience and his ears are really all he needs.

It is at least 2 if not 3 visits of tweaking to get a good result. Our prosthedontist gives the patient some time to get used to it before extending or widening.  Our prosthedontist also makes them a little thicker for our patients as he feels like the thickness can help compensate for limited lingual to palatal contact from tongue weakness.

Jen Coggiola, MA, CCC/SLP
Speech Pathologist
ALS Center at UCSF
400 Parnassus Ave., 8th Floor
San Francisco, CA 94143
(415) 353-2122 clinic phone
(415) 353-2524 clinic fax
(925) 323-0175 cell phone
xxxxxx@xxxxxxxxxxxxxx

________________________________
From: xxxxxx@xxxxxxxxxxxxxxxxxxxx [xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Betts Peters [xxxxxx@xxxxxxxxxxx]
Sent: Tuesday, August 09, 2011 12:42 PM
To: xxxxxx@xxxxxxxxxxxxxxxxxxxx
Subject: more info and questions about palatal lifts

I did some research on palatal lifts for our clinic a few months ago.  We got a list of dental prosthodontists from another SLP who works with the head & neck cancer population.  However, we have not actually had any PALS actually go through with the process.  Part of that is because there are few PALS who seem to be appropriate for them (see list of recommended patient attributes below), and part of it is because of the cost.  When I contacted the local prosthodontists, they said that Medicare will cover it, but that Medicare reimbursement is less than what it costs the prosthodontist to make the prosthesis.  That means that none of our local prosthodontists will bother billing Medicare, and the patient cannot get reimbursed if they pay out of pocket.  Our state’s version of Medicaid won’t cover palatal lifts, and private insurance coverage varies widely, as usual.  The cost is $3000-5000.

If anyone’s interested, I found this list of patient attributes favorable for benefiting from a palatal lift in Motor Speech Disorders by Joseph Duffy:

•         Slow rate of progression

•         Adequate respiratory function and articulation

•         Resonance change with occlusion

•         Evidence of lateral pharyngeal wall movement during speech

•         Pressure sounds less adequate than others

•         No hyperactive gag reflex

•         No significant spasticity

•         Adequate swallowing & saliva management

•         Adequate dentition

•         Able to insert and remove prosthesis without assistance

I would be very interested to hear the experiences of anyone who has experience working with PALS and palatal lifts.  If you recommend them at your clinic or practice, how do you determine which PALS should get them?  Are your criteria similar to those listed above?  How are PALS getting funding for these prostheses?  What kind of feedback do you get from PALS that have them?  Thanks!

Betts Peters, MA, CCC-SLP
Assistive Technology Services Coordinator
The ALS Association Oregon and SW Washington Chapter
700 NE Multnomah St, Suite 870
Portland, OR 97232
503-238-5559
800-681-9851
Fax: 503-296-5590
Website: www.alsa-or.org<http://www.alsa-or.org>

Find our chapter on Facebook<http://www.facebook.com/home.php?#!/pages/The-ALS-Association-Oregon-and-SW-Washington-Chapter/155563277808464>!
Register TODAY<http://web.alsa.org/site/PageServer?pagename=WLK_BP_stateselect> to join the Walk to Defeat ALS®.  Participate because YOU CAN!

From: xxxxxx@xxxxxxxxxxxxxxxxxxxx [mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Tara Klucker
Sent: Tuesday, August 09, 2011 11:48 AM
To: xxxxxx@xxxxxxxxxxxxxxxxxxxx
Subject: RE:

I have had someone recently ask me about a lift, also.  I have asked our local SLP, and got a resource in St. Louis, but looking for someone much closer to the Bloomington area.  Does anyone know how to go about finding someone that can do this?  This is a  first for me.

Tara Klucker, MA, CRC, LPC
Case Manager and Outreach Specialist
The ALS Association, St. Louis Regional Chapter

314-432-7257 ext. 7
1-888-873-8539

Where Patients Matter Most

The information transmitted (including attachments) is covered by the Electronic Communications Privacy Act, 18 U.S.C. 2510-2521, is intended only for the person(s) or entity/entities to which it is addressed and may contain confidential and/or privileged material. Any review, retransmission, dissemination or other use of, or taking of any action in reliance upon, this information by persons or entities other than the intended recipient(s) is prohibited. If you received this in error, please contact the sender and delete the material from any computer.


From: xxxxxx@xxxxxxxxxxxxxxxxxxxx [mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Erin Singleton
Sent: Tuesday, August 09, 2011 1:50 PM
To: xxxxxx@xxxxxxxxxxxxxxxxxxxx
Subject: RE:

Thanks Tami

Do other SLP’s regularly suggest lifts for ALS patient’s? I have been trying to find someone in my area that does them in the event that it’s appropriate.

Erin

From: xxxxxx@xxxxxxxxxxxxxxxxxxxx<mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx> [mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx]<mailto:[mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx]> On Behalf Of Tami Brancamp
Sent: Tuesday, August 09, 2011 11:40 AM
To: xxxxxx@xxxxxxxxxxxxxxxxxxxx<mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx>
Subject: Re:

They could be assessed for a palatal lift.
Tami

Tami Brancamp, PhD
Assistant Professor
Speech Pathology & Audiology
University of Nevada School of Medicine
775.784.4887
775.682.7020 (office)
xxxxxx@xxxxxxxxxxxxxxxxxxx<mailto:xxxxxx@xxxxxxxxxxxxxxxxxxx>
www.medicine.nevada.edu/spa<http://www.medicine.nevada.edu/spa>

On Aug 9, 2011, at 11:33 AM, Erin Singleton wrote:

Hey everyone,

I realize we typically focus on augmentative communication on this list serve so it may not be the most appropriate forum for this question.

I have had two ALS patient’s ask me this week about what they should do for nasal regurgitation when swallowing liquids. I don’t get asked this a lot so I don’t feel as though I have the best suggestions for them. The two men that asked are brothers and oddly enough have almost no pharyngeal dysphagia. Their most frustrating symptom is nasal regurgitation. It surprises me that it’s happening so often for them because their speech is only slightly nasal. If anyone has suggestions for me I’d love the advice!

If it’s easier to answer off the listserv my email is xxxxxx@xxxxxxxxxxxxxxxxxxxx<mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx>

Thanks so much.

Erin Singleton M.A., CCC-SLP
Neuroscience Outpatient Rehabilitation Center
2335 East Kashian Lane, Suite 301
Fresno, California 93701
Office: (559) 459-6056
Fax: (559) 459-2957
Email: xxxxxx@xxxxxxxxxxxxxxxxxxxx<mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx>




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