“We have not been able to find any speech therapist to help. We’re currently on a waiting list but it’s already been 2 months since his stroke and we feel we’re missing out on the prime time for treatment intervention! I don’t care if we need to move to another state, I’ll do it…as long as he can get therapy!”
“My son was discharged because he had trouble understanding directions. I feel he can still improve but I’m at a loss.”
“My husband is receiving 30 minutes of speech therapy from home health a week and it just isn’t enough…he just started responded to our attempts at communication and is beginning to follow single step commands!”
“Oh my, thank goodness, thank you so much for calling me back, I can’t even begin to thank you enough for returning my call! I’m so happy to hear from you!”
Calls of desperation
There is no doubt these are desperate cries for help, frustrations and fear coming from caregivers who are new to driving on the windy, rocky road of Aphasia recovery and are simply looking for something that should be a given when dealing with Aphasia – therapy that is necessary for recovery. These sadly are conversations I’ve had just over the past 2 weeks. These caregivers, who are already struggling to balance their new roles they’ve been forced to take on (caregiver, financial provider, therapist, handyman, single parent, transportation, etc.), are now being asked to also find the rehabilitation specialists their loved one needs….feeling time pressure knowing that the 3 to 6 month window of prime time recovery is being wasted while hanging out on waiting lists and waiting for returned phone calls.
Where is the breakdown?
Why has this become an issue? What is going on with our healthcare system that families facing a debilitating health crisis have limited to no support upon being discharged from the hospital, or are only receiving very minimal treatment services when their impairments remain significant?? Is it a lack of communication within the healthcare facilities? Does everyone believe it’s someone else’s job to address this prior to discharge with no one taking the responsibility? Perhaps some of it is related to insurance and limited visit coverage. However, when families contact me, they are aware that I do not accept third party reimbursement and fine with it, willing to do anything and pay whatever they need for their loved one to receive services.
We can likely blame some of the situation on the continued pandemic, leading to limited healthcare resources and significant burnout in medical professionals and rehabilitation specialists. However, something needs to change, and it needs to change NOW. How long are we going to allow “COVID-19” to damage our healthcare system? The lack of support leads to additional and ongoing medical problems, which in turn, requires additional services, and the vicious cycle goes on. Our families living with Aphasia need to have support, and not only are they not receiving support, they are being given a larger burden due to the inadequacies of our healthcare system.
Small steps leading to bigger changes
Unfortunately, there are a lot of issues that are beyond our control relating to finances, politics, infrastructure, leadership, and so on. I have not chosen to write this blog to stir up political turmoil or spark debates. However, being a passionate rehabilitation specialist who strives to ensure my patients are well taken care of, and given the amount of desperate calls I received in a short period of time, I felt I could not simply ignore this issue that has become apparent and rather concerning. Perhaps there are things we all can do as individuals, or even as small groups, who are continuing to advocate for those in the Aphasia community.
Connect with your local hospital and provide them with a resource that provides information you wish you had available to you upon discharge (i.e. therapist recommendations, apps, aphasia groups, related disciplines, etc.)
We created this resource due to consistent complaints from our patients and caregivers of being discharged without any guidance or support. We have distributed at local area hospitals, but feel free to share and spread to your local communities.
Explore some of the amazing Aphasia non-profit organizations (National Aphasia Association, Speech Recovery Pathways, Just ASK…Aphasia Stroke Knowledge, etc.) and get involved! They all have created powerful initiatives focused on improving access, education, advocacy, etc. for people with Aphasia, and it takes a lot of support and manpower to make these necessary changes!
As a SLP, create opportunities for free practice for individuals with Aphasia if your time for one-on-one sessions is limited:
- Develop home practice materials
- Create a peer mentoring or coaching program allowing 2 or more people with
Aphasia to work with each other on similar goals
- Recruit students to run small groups, allowing for extra language activities and
Contact your local congressman and share your challenges and concerns
The flaws in our healthcare system will not be resolved by the Aphasia community alone, but perhaps we can work together to help make the experiences of the next person who is facing the challenges of Aphasia just a little bit better. Small contributions NOW can lead to significant changes in the long run….it’s all in the power of small victories, one success at a time.