Trigeminal Neuralgia, Neuropathic Facial Pain and Disability Issues

By Kathy Gilbert Taylor, MS, Rehabilitation Counselor

For the Trigeminal Neuralgia Association

Trigeminal neuralgia and neuropathic facial pain are hidden or invisible disabilities. Because these conditions are not readily apparent to others, people may have difficulty understanding why someone with facial pain may need accommodations.  Often the person with a hidden disability must educate others about his or her condition in order for them to understand the need for special considerations. This is especially true with rare disorders such as trigeminal neuralgia and neuropathic facial pain.

The Americans with Disabilities Act (ADA) is a federal civil rights law that prohibits the exclusion of individuals with disabilities from everyday activities, such as making a purchase at a store, watching a play or a movie in a theater, partaking in a meal at a local restaurant, visiting a physician’s office, attending classes, and going to work.

Trigeminal neuralgia (TN) and other types of facial pain can limit a major life activity. Major life activities are tasks that people perform daily.  These activities include things like speaking, walking, seeing, hearing, breathing, learning, performing manual tasks, and working. Many people with TN and facial pain have difficulty brushing their teeth.  Dental hygiene is considered “taking caring of one’s self,” and is a major life activity. Inability to brush one’s teeth is considered a functional limitation, and the cause –trigeminal neuralgia or neuropathic facial pain – is the actual disability.

A toll-fee number is available for the ADA office. Calls can be placed to obtain answers to general and technical questions about the ADA and to order technical assistance materials, 800-514-0301 (voice) or 800-514-0383 (TDD). Information about upholding disability rights can be found on the ADA website.

http://www.usdoj.gov/whatwedo/whatwedoaawd.html

Architectural barriers

People who have facial pain may find themselves experiencing dizziness or weakness. Handrails for stairways, landings, and ramps are required by the ADA. The law also states that elevators will be provided in public buildings that are more than one-story.

A brief overview of applicable portions of the ADA is available online.

http://www.eeoc.gov/policy/ada.html

Laws stipulating accessibility standards are also found on the ADA website.

http://www.usdoj.gov/crt/ada/adastd94.pdf.

Accessible or “handicapped” parking permits 

Individuals with facial pain sometimes experience exacerbations when they are exposed to cold air or wind. Many people find it necessary to travel by automobile, even when the weather triggers pain. This is just one reason that people with trigeminal neuralgia or facial pain may need a parking space that is close to the entrance of buildings.  Most states issue accessible parking permits for individuals with neurological disorders. Some states charge a small fee for the permit. Obtaining a permit usually requires the submission of an application to a local government agency, such as the motor vehicle registration office.  A signature from the physician who treats the individual with facial pain is normally part of the application process.

At the workplace

As employees, people with qualified disabilities are, according to the Americans with Disabilities Act, entitled to reasonable accommodations.   The term reasonable accommodation may include-      (A) making existing facilities used by employees readily accessible to and usable by individuals with disabilities; and      (B) job restructuring, part-­time or modified work schedules, reassignment to a vacant position, acquisition or modification of equipment or devices, appropriate adjustment or modifications of examinations, training materials or policies, the provision of qualified readers or interpreters, and other similar accommodations for individuals with disabilities.  The Job Accommodation Network (JAN) is a free consulting service sponsored by the Office of Disability Employment Policy, the U.S. Department of Labor. JAN’s objective is to facilitate the employment and retention of workers with disabilities by providing interested parties with information on job accommodations, self-employment, and small business ownership of people with disabilities. The Job Accommodation Network has a toll-free number 1-800-526-7234 and a website. http://www.jan.wvu.edu

Discrimination against individuals with disabilities

If an individual believes that he or she has been discriminated against by an employer, labor union or employment agency when applying for a job or while on the job because of a disability, a discrimination charge may be filed with the U.S. Equal Employment Opportunity Commission (EEOC).  Strict time frames exist in which charges of employment discrimination must be filed. For the EEOC to act in someone’s behalf, these deadlines must be met.

Discrimination charges may be filed in person, by mail, or by telephone to the nearest EEOC office.  Call toll free 800-669-4000 or 800-669-6820 (TDD) for more information or to find where the nearest office is located.

Family Medical Leave Act (FMLA) 

FMLA applies to individuals who work for employers who have 50 employees or more.  Spouses, children, and parents of individuals with facial pain may qualify for FMLA if it is necessary to care for the family member who has the disability. For an individual to be eligible for FMLA, he or she must have worked for twelve months for the employer from whom the leave is requested.   The first step in securing FMLA is to ask for it. The employer’s human resource or risk management personnel normally provide assistance with the necessary paperwork.   Federal law allows up to twelve weeks of FMLA. Leave is available during any 12-month period, but the leave is unpaid.  While on leave, the employer is required to continue health benefits.  An employer may require that a request for FMLA be supported by documentation issued by an individual’s physician. If so, the employee must obtain the information and provide it to his or her employer. 

When the employee returns to work under FMLA leave, the employer is obligated to restore the individual to the same or an equivalent position. Individuals with facial pain may qualify for FMLA if the condition causes inability to perform the functions of the position. More information is available on the FMLA website. 

http://www.dol.gov/esa/whd/fmla/ 

Vocational Rehabilitation services

Every state has an agency that provides vocational rehabilitation services for individuals with disabilities. Vocational rehabilitation services are designed to help people with disabilities prepare for, to get, to keep, or to regain employment. Individuals with facial pain may be eligible if their medical conditions result in a substantial impediment to employment. Vocational rehabilitation services may consider the financial and educational status of the applicant.   The following website has a link to every state’s vocational rehabilitation program.

http://www.jan.wvu.edu/SBSES/VOCREHAB.HTM

Social Security Disability

The Social Security Administration extends benefits to individuals who cannot work because they have a medical condition that is expected to last at least one year or to result in death. When considering the eligibility of applicants, Social Security looks for recent work based on the applicant’s age at the time he or she becomes disabled. In order to qualify for benefits, applicants must have worked long enough to be eligible.

According to the social security administration, people should file for benefits as soon as they become disabled, unable to perform their work duties because of a disability. Applications are taken online at www.socialsecurity.gov.  Individuals may also file a claim or make an appointment for file a claim by calling 1-800-772-1213.

In addition to forms for the individual with a disability to complete, the Social Security Administration asks every applicant for the following information:

• Social security number

• Birth certificate or baptismal certificate

• Names and dosages of all the applicant’s medicines

• Names, addresses, and phone numbers of the applicant’s health care providers. This includes hospitals, doctors, clinics, and institutions that provided services. Dates of service are also required.

• Medical records from physicians, therapists, caseworkers, hospitals, and clinics.

• Laboratory test results.

• Summary of work, which includes where the applicant works and the type of work performed.

• A copy of the applicant’s most recent Wage and Tax Statement (W-2) Form. If applicant is self-employed, a federal tax return for the previous year will be required.

Social Security will check to see if the applicant has worked enough years to qualify for benefits, will evaluate current work activities, and will forward applications to a state office to review for disability determination. Professionals in the state agency ask the applicant’s health care providers for information about the disabling condition. The agency will ask what the medical condition is, when it began, and how it limits activities.   Medical tests and treatment will also be considered.

Social Security also reviews secondary medical issues such as depression or anxiety, which can be secondary to TN and neuropathic facial pain. Claims are reviewed for regular visits to a physician, which provide documentation of illness. An individual’s compliance with a physician’s orders is also important.

Individuals who are completing paperwork for the Social Security Administration must adhere to the deadlines of all appeals. Applications are often denied twice. If a claim is denied a second time, a hearing with a Social Security judge is scheduled.  Most states have a back-log of claims, often taking two years or more for a claim to reach a hearing date.

At most hearings, a vocational specialist attends to help the judge determine if an individual might be able to perform any vocation. Social Security looks at an individual to determine if any functional capacity remains. If a claim is denied at the hearing, an appeal process follows. If an individual’s application is approved at any point, his or her attorney is allowed 25% of back benefits and additional monies for expenses.

Disability Insurance

The two basic types of disability insurance are short-term, which typically pays a benefit for six months to two years, and long-term, which pays for at least a year and can last until age 65 or longer.  Disability policies usually pay a percentage of income. Disability benefits not only change from state to state but also vary from one policy to another. Policies should be read carefully. Sometimes a copy of the policy is not given to everyone covered under a group plan. The employer will have the master policy on file. A copy can be made for an employee.

A policy's definition of disability is important. Some policies state that the insured will be considered disabled only if the individual cannot work in his or her own occupation. Others will pay only if the individual cannot work in any occupation. Some will pay partial benefits if disability results in a reduction of income. Because so many variations in the definitions of disability exist, individuals who have read the policies often have questions. These questions should be directed to their employer’s risk management office or to the insurance agent.

Things to consider

Once an individual’s employment terminates, health insurance coverage may no longer be available.  This can be especially significant for individuals whose policies cover dependents. Some employees qualify for COBRA benefits, which allows them to keep their health insurance active. COBRA is normally quite expensive, and it is in effect for a limited time-span. 

Families experience a change in individuals’ roles when an employed member becomes a stay-at-home member. An open dialogue about the family’s changes and its needs is essential during this transition. Individuals often notice that part of their self-identity relates to their occupation and activities around their work. Sometimes this loss proves to be more profound than a person might realize. Counseling, whether family or individual, can often help identify solutions to issues that surface when a transition from work to home is in process.