Hello everyone and welcome to #2 in the Aphasia Myths blog. This post was previously published on our www.aphasiainfo.blogspot.com site.
Today I’d like to talk about isolation and aphasia. This is a relevant topic for discussion because there are relatively few aphasia support groups and limited information readily available for caregivers and persons with aphasia. Many people with aphasia are not aware that there are aphasia support groups, or that there is an organization called the National Aphasia Association (NAA)(www.aphasia.org). According to the NAA, approximately 40% of persons with aphasia have no contact with other persons with aphasia. Considering the frequent social and other losses that come when someone gets aphasia, this number is staggering! Imagine having a disorder that robs you of your ability to communicate, that you receive little information about this disorder and your prognosis, and that you can no longer work and relate effectively to others. Then imagine that you don’t know that there are others out there like you–that there are others who can provide hope, give advice, provide cameraderie, and have “been there”. We, as clinicians and physicians, need to make a greater effort to reach out to those with aphasia.
If you have aphasia, you are one of over one million folks in the U.S.! There are people all over the world with aphasia! Some of them have better communication than you do, some of them do not. Some of them are in wheelchairs, some walk with canes, some walk without any assistance. Some persons with aphasia have severe difficulties with their arms and legs, some do not. Persons with aphasia are young and old, all nationalities, all education levels, all careers, and may have different causes. I encourage you to make the effort to find others with aphasia–you’ll be glad that you did. If you join a group and you don’t like that group–make your own or find another group. You can find organizations online at the NAA website, or do a search for “aphasia support groups” and your location. Whatever your choice, get involved in your life!
Thanks for your VERY helpful and encouraging words on the “plateau” issue. My wife has experienced a massive stroke and within 5 months from the “event”, the home health organization told her she had “plateaued” and they were saying “bye-bye” to her(they sent us a form CMS-1023 G (Notice of Medicare Provider Non-Coverage) and never offered to continue to help her (even for a fee)….I was/am still very upset with the provider for treating her (or, in this case, NOT treating her) in such an uncaring, unprofessional way !! Do you recommend that we file a complaint with our QIO ?? Will it do any good (for us or anybody else in future ?)
Thanks for your post! This is somewhat typical for any outpatient therapy unfortunately. Due to insurance regulations and limitations, there are limitations to how long Medicare or other insurances will pay for therapy. However, most insurance companies want to see that the patient is making progress. The therapy must be considered “medically necessary” by the insurance company, so that even though you and I know that your wife is having communication difficulties, insurance doesn’t consider most of that medically necessary. Therapists are under pressure to cut off therapy and may not know how to keep making progress with their patients. Our philosophy is that there is no plateau and that you should keep changing your approach if you’ve done all you can do at one thing. Your therapy provider cannot offer you private therapy because they would have to accept the Medicare per the contract. Additionally, if the therapist feels that your wife has hit a plateau, he/she wouldn’t think to offer you more therapy because “there’s nothing more they can do”. I would definitely find someone who will provide private therapy. Look into the resources as well at the National Aphasia Association at http://www.aphasia.org, they are many lower cost options to continue making progress. Additionally, another therapy services provider may go ahead and use your Medicare to continue her therapy. You can continue to use your Medicare until you’ve used up your yearly benefits. Please feel free to call me if you need more assistance at 727-823-2529 or email me at dr.lbtobin@gmail.com