By Jamie Barrett, PhD
July 26th marked the thirty-third anniversary of a powerful piece of civil rights legislation, the Americans with Disabilities Act (ADA). This year’s celebration is especially momentous as it comes just weeks after the approval by the U.S. Food and Drug Administration (FDA) of the first drug shown to slow down an early form of dementia.
A scientific win for the Alzheimer’s disease community, the FDA green light opens the way for
Leqembi, whose generic name is lecanemab, to be prescribed for individuals with elevated amyloid beta levels, a biomarker for Alzheimer’s. The drug, produced by Eisai/Biogen, is not a cure, but its grants those in the early stages of the disease more time to maintain their autonomy and independence.
The FDA ruling underscores the broad way the ADA continues to transform our view of disabilities. Most people know that the ADA dramatically improved the lives of a generation of people with physical and development disabilities across the country. They may also recognize that the ADA continues to drive the momentum of a global disability rights movement. What they may not realize is that the ADA also safeguards individuals with early neurological decline and psychiatric disorders.
The ADA Amendments Act of 2008 (ADAA) expanded the definition of “disability” to include legal protections against employment discrimination for individuals with neurological impairment and psychiatric disorders. The ADA acknowledges that neurological impairments can substantially limit major life activities by affecting memory, speech, the ability to learn, skills, and muscle actions. Neurological disabilities can result from multiple sclerosis, traumatic brain injuries, epilepsy, cerebral palsy, and spinal cord injuries.
The ADA covers many neurological conditions marked by cognitive decline, among them Alzheimer’s disease, dementia with Lewy bodies, frontotemporal dementia, and Huntington’s disease. Mild signs of neurological decline can be difficult to spot and, since they can start at a very young age, their early progress often goes unnoticed. Once family and friends become aware of a loved one being forgetful, losing items, or having trouble thinking of words, it is time to see a doctor.
Proper medical diagnosis and documentation of neurological disabilities are important because they are the evidence that underpins disability rights, disability benefits, and health equity. It is also important for individuals with neurological challenges to understand their protections under the law.
I’ve personally dealt with these issues as my father was diagnosed with primary progressive aphasia (PPA) at 56 years old. PPA is a rare type of aphasia that eventually turned into frontotemporal dementia (FTD). I started the process to get him disability benefits before his final FTD diagnosis because the paperwork took about 3 months to be processed. This was important because my parents had been living on two incomes but my father was no longer able to work, and more importantly, it enabled him to get the care that he had a right to receive.
What rights do those with early to mild neurological decline have?
Under the ADA, individuals with low to mild cognitive impairment and the beginning stages of neurological decline have multiple legal protections in the workplace:
· Once a job has been offered, the offer cannot be rescinded or withdrawn based on a diagnosis of disability. A job offer can only be rescinded if the person with a disability will not be able to perform the proper functions with the accommodations provided by the employer.
- If a person with a neurological disability asks for a work accommodation, the employer can request documentation of their disability. That medical information is to remain confidential.
- Unless an employee’s neurological disorder directly impacts their ability to work, the ADA does not allow employers to require the disclosure of a neurological or psychiatric disability. Disclosure is a legally protected choice. A person has the right to choose to disclose their disability—or not.
- Discrimination based on disability is never permitted by employers and fellow employees
What do you do once neurological decline leads to an inability to work?
It’s important to know what benefits are available. Individuals actively working prior to their neurological decline can qualify for Social Security benefits based on proof in one or more areas: the ability to communicate (recall words and use them correctly), remembering, learning and attention span. Neurological decline is determined by cognitive assessments provided by a medical professional. With documentation and diagnosis from a medical professional, an individual or loved one below the federal retirement age can apply for Social Security Disability Income.
A person can seek Social Security Disability Income if:
- They cannot complete the work tasks they previously conducted or adjust to working conditions because of neurological or cognitive impairment.
- They cannot engage in substantial gainful activity because of their disability.
- They have a record of their disability and diagnosis.
- Their disability has lasted or is expected to last longer than a year or result in death.
The ADA protects people with disabilities from discrimination in the workplace, social services, transportation, telecommunications, and access to health equity. The focus on individual differences in needs, care, diagnoses and situations is at the heart of disability rights and protections. The ADA enshrines the principle that people with disabilities are deserving of opportunity, dignity, respect and equality.
Jamie Barrett, PhD, is an adjunct psychology professor at University of Maryland Global Campus