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Aphasia and the Law
Rights and Regulations for Aphasia
Federal Law
Federal law says that people on Medicare can continue getting therapy that Medicare pays for, including speech therapy, with no time limit, as long as:
- It is reasonable and necessary
- A qualified, “skilled” therapist is providing it
- The therapist or a physician developed and regularly reviews a plan of care that includes diagnosis, goals, and type, amount, duration, and frequency of therapy
- The person is under a physician’s overall care
Code of Federal Regulation
§ 409.44 – Skilled services requirements
§ 410.62 – Outpatient speech-language pathology services
When people have aphasia after a stroke or other brain injury, they usually get speech therapy. This is true for both “traditional” Medicare and Medicare Advantage plans like Kaiser Senior Advantage. But for most people, speech therapy stops at some point. They are told that they’ve used up their allotted time or number of visits.
- After stroke, you have speech therapy.
- Speech therapy stops. WHY?
Aphasia is a chronic condition. Many people improve, but few people actually “recover” from aphasia. So as long as the Medicare requirements listed above are met, people who have aphasia should be eligible to have Medicare pay for continued speech therapy.
- People do not recover from aphasia.
- Aphasia is chronic.
- Treatment should continue.
It is not true that people have to improve in order for Medicare to keep paying for therapy. Sometimes, people are given this as a reason why therapy cannot continue, but this policy violates the law. People who needed various kinds of therapy filed a class action lawsuit against Medicare, called Jimmo v. Sebelius, Medicare settled the case and agreed that it has to cover therapy both to help people get better and to prevent them from getting worse.
- You do not need to improve to keep therapy.
- Therapy is for when you improve.
- Therapy is to keep you from getting worse.
What do we demand?
Rights for Aphasia
1. Yearly Imaging and Assessment
Access to annual cost-free brain imaging and assessment of the extent of our recovery should be available, along with consultation with a neurologist or other qualified person who can help us understand what the assessment and image show. This should also include assessment of changes and improvements.
2. No Limits on Treatment
Medicare and other insurance programs should cover treatment and therapies for as long as a person has aphasia, with no arbitrary limits. Aphasia is a condition that is chronic rather than acute. Most of us will have aphasia for the rest of our lives, so we need ongoing therapies.
3. Appropriate Treatment for Aphasia
Insurance should cover a broader range of services than the traditional speech, physical, and occupational therapies. Many of us have found other treatment modalities helpful; among these are peer therapy, counseling, herbal medicine, meditation, hyperbaric oxygen, repeated transcranial magnetic stimulation, neurofeedback, and Traditional Chinese Medicine, including acupuncture.
4. Cultural Competence with Aphasia
More therapists who reflect the range of people in the aphasia community – Black, Latino, Asian, and Native, as well as White. Currently, over 90% of speech therapists are White women. We need a broader spectrum of therapists, and all must be trained in cultural competence.
5. People of Color, Gender, & Language Diversity in Aphasia Research
Support for research to determine demographic information about the prevalence of aphasia disaggregated by race, gender, age, income, language, immigration status, and geography. We should be able to know what health conditions commonly co-exist with aphasia and whether these conditions vary among demographic groups, whether strokes and/or aphasia are underdiagnosed among certain groups.
6. Technology for Aphasia
People with aphasia need access to technology. We often communicate using phone, email, text, and video calls. Re-learning technology is also part of supporting our communication. Support should include learning or re-learning technology, and continued support when the design changes.
7. New Research Developments with Free Access
Access at no cost to information about aphasia, new research developments in the field, and published studies should be available. This information must be fully accessible, i.e., available in varying languages and formats. Written and video material must be translated into any language spoken by more than 5% of a community.
8. Transportation Access
Paratransit at no cost for those of us who cannot drive, with minimal wait times. Paratransit services should allow travel between counties and get people where they need to go without exception.
9. DMV Access
Access to a cost-free refresher driving course four times per year. The Department of Motor Vehicles should offer these courses and reinstate driver’s licenses for those of us who pass the refresher course. These courses should be available in an accessible language, including languages other than English and should accommodate people who have difficulty speaking.
10. Support for Caregivers
Respite care at no cost for our partners, spouses, caregivers, and advocates if we have severe mobility impairments or otherwise need nearly constant care. These people do heroic duty and need breaks from constant caregiving. Partners and other caregivers for those of us who do not need constant care are nonetheless indispensable to our quality of life and recovery and should have access to support groups if they desire.
11. Treat Depression
Given the prevalence of depression among people with aphasia, a broad range of potential treatments should be considered.
