Should vestibular disorder qualify as a DISABILITY?

Vice-President International Neurotological and Equilibriometric Society

As per the WHO International Classification of Impairments, Disabilities, and Handicaps publication (1),in the context of health, an ‘impairment’ is any loss or abnormality of psychological, physiological, or anatomical structure or function and a ‘disability’ is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.

Balance disorders which include instability, dizziness, and head spinning or vertigo are a subjective disorder that causes functional, psychological and social impairment which is not compatible with normal life and imposes severe restrictions on the patient. Most balance disorder patients have a very poor quality of life with restricted mobility, persistent fear of losing balance and falling and a constant apprehension of impending vertigo. Most of them cannot walk about freely, need support or the help of a care-giver to move about, cannot sit at a place for a long time and are often unable to mentally concentrate on the work they do as they always feel insecure. The handicap that includes psychological impairment induced by dizziness is tremendous and many balance disorder patients are so very much incapacitated that they cannot earn their livelihood; many such patients are forced to stay indoors and cannot lead a normal productive life. Many studies suggest that about 50% of persons who present to clinics for dizziness have psychological disorder too as a result of the disease (2).Balance disorders can make a subject unable to perform any physical labor. Even light work as defined by the Social  Security Administration  of USA (SSA)’s guidelines for Social Security Disability applicants requires walking,  a function that can become nearly impossible for those suffering with vertigo / imbalance. Sedentary work, defined by the SSA as work that requires sitting for up to six hours a day may be very challenging in patients who suffer from many types of vestibular disorders like Meniere’s disease, Vertiginous Migraine etc. Vertigo causes dizziness and confusion; conditions that are not ideal for the need to think and act quickly. For patients suffering from common vestibular disorders like Meniere’s disease even getting in and out of a chair can be dangerous, and communicating on the phone and with others can be difficult due to impaired hearing. Hence vestibular disorders should be recognized as a cause of disability and such patients should be entitled to disability benefits. The impairment, be it functional or psychological and the impairment in quality of life induced by the balance disorder is tangible, is measurable and is documentable. Since balance disorders are subjective sensations, it is difficult figuring out how much inconvenience such patients are experiencing and how much the patient is incapacitated but there is no doubt that balance disorder patients are crippled and are severely handicapped physically, socially and psychologically.

To identify measure and document the disability caused by a medical disorder involving a biological system:-

(a) the disorder has to have a definite  and clear cut diagnostic criteria of the diseases that comprise disorders of that biological system,
(b) the functional status of the different organs constituting the involved biological system must be precisely measurable and
(c) the social /psychological and physical impact of the disorder measurable and documentable by a definite score.

Disorders of the balance system can be very accurately diagnosed and the degree of handicap very precisely measured and documented by the contemporary vestibular function tests. The impact of the vestibular disorder on the patient’s social, professional or private life can be scored by the Dizziness Handicap Inventory (7).  The diagnosis of a vestibular disorder requires a comprehensive neuro-otologic examination with a detailed description of the vertiginous episodes, including notation of frequency, severity, and duration of the attacks which are analysed in the light of the findings of the vestibular function tests.  Vestibular function is accessed very objectively by clinical tests and by some very standardized computerized investigations. The balance organ called the vestibular labyrinth which is situated deep inside the ear is a very special organ which comprises of three semicircular canals and two  otolith organs called utricle and saccule to detect any form of movement. After these organs have sensed any change in the position of the body, the central nervous system restores balance by different neural reflexes called the vestibulo-ocular and the vestibulo-spinal reflexes. We now have a full battery of very sophisticated vestibular function tests available at our disposal which can pinpoint the site of lesion in the vestibular labyrinth and can document the exact extent of functional impairment. The tests are so very precise that the degree of functional impairment of the different organs that comprise the system can be expressed as a percentage of the normal function of that organ. These tests (called vestibular function tests) include the Videonystagmography / Electronystagmography that can very precisely document the functional status of the oculomotor system and the lateral semicircular canal; the Cervical & Ocular Vestibular Evoked Myogenic Potentials (cVEMP & oVEMP) for the otolith organs namely the Saccule and Utricle respectively; the Video Head Impulse Test (VHIT) for the three semicircular canals. The perception of visual vertical plays important role in maintaining balance and keeping a person erect which can be assessed by the Subjective Visual Vertical test. Similarly the  functional integrity of the Vestibulo Spinal reflex system can be checked by various tests like Craniocorporography (CCG); Static Posturography – Stabilometry, Dynamic Posturography etc . The Vestibulo Ocular Reflex is accurately assessed by some of the tests above and can be re-confirmed by Dynamic Visual Acuity (DVA). Even the functional status of the nerves that constitute the reflexes can be tested by the nerve conduction studies; hence each and every part of the balance system can be tested and the functional and structural integrity of each part can be very precisely documented. The correctly performed tests interpreted by doctors with an insight  and knowledge of the vestibular system in reference to the history and clinical can help us to accurately  measure and  score the disability caused by impairment of Vestibular function.  The net functional impairment and the quality of life of a balance disorder patient can be very well  measured and documented by the time-tested Dizziness Handicap Inventory (DHI) (7) and by it the extent of functional disability as well as the psychological impact of the balance disorder on the patient can be very precisely scored (7) .Hence the extent of impairment induced by the balance disorder can be very precisely documented by thetests available today and there is no reason to suggest that the damage induced by the balance disorder is intangible or that it cannot be measured.  Since it can be measured we can definitely have parameters to grade the disability and hence provide disability benefits on the basis of the exact grade of disability.

In the countries like USA, UK some severe cases of Vertigo especially Meniere’s disease are recognized as a cause of disability. (3) (4) (5) (6). The reason why Meniere’s disease is mentioned everywhere in describing balance disorders is because in the past, Meniere’s disease was one of the very few causes of vertigo that could be easily diagnosed and the incapacity caused by it  could be easily documented, but with the advent of all modern investigations in neurotology,  today most, if not all, diseases causing balance disorders are easily diagnosable and the induced impairment measurable and documentable. The Social Security Administration (SSA) of The United States of America (USA) recognizes vestibular /balance disorder as a disability that in some cases qualifies for benefits. (3). In Disability Evaluation under Social Security Administration (SSA-USA), section 2.00 deals with disabilities related to Special Senses and Speech in Adult.  Of this, 2.07 is related to Disturbance of labyrinthine-vestibular function (Including Ménière’s disease).

In USA various benefits available of Vestibular Disability through Employer, Government and Private Insurance Firms is as follows (4)

1. Short-term disability insurance benefits through the employer (these usually last for 6 months).
2. Long-term disability insurance benefits through the employer (these usually start after 6 months and can last until retirement age).
3. Private disability insurance plans (insurance purchased for self that can last through retirement age or beyond).
4. State disability insurance (usually lasts for a year, such as through California’s Employee Development Department “EDD”).
5. Social Security Disability benefits (available after being disabled for 6 months and lasting through retirement age).
6. Workers’ Compensation benefits (only if the disability is due to a work-related injury).

Various studies suggest that early referral to a specialist balance unit for patients with persistent dizziness are associated with better outcome in terms of limiting the disability(8).  But if the balance disorder has occurred and the balance organ(s)  has been damaged, the patient is invariably in poor shape and is severely disabled if not totally crippled. The vestibular labyrinth which is the special sense-organ for  balance  (like the retina is for vision and the cochlea is for hearing),  is non-mitotic which means that  the constituent cells if damaged are damaged for life and cannot be regenerated. Hence the disability cannot be corrected by medical /surgical treatment which means that the condition is irreversible. Hence disorders of the balance system definitely calls for disability benefits and  all stake-holders be they health care-givers like neurotologists, public health workers, health adminstrators and vestibular disorder  patient bodies need to work hand in hand to ensure that balance disorder is recognised as a disability  and such patients are not deprived of disability benefits in all countries.

References:

1. Organization, World Health. International Classification of Impairments, Disabilities, and Handicaps. A manual of classification relating to the consequences of disease. Geneva : WHO in accordance with resolution WHA29. 35 of the Twenty-ninth World Health Assembly,May 1976, 1993.
2. Hain, Timothy. http://www.dizziness-and-balance.com/disorders/psych/psych.htm. http://www.dizziness-and-balance.com. [Online]
3. SSA, The Social Security Adminstration of USA. https://www.ssa.gov/disability/professionals/bluebook/2.00-SpecialSensesandSpeech-Adult.htm#Top. [Online]
4. VEDA. http://vestibular.org/living-vestibular-disorder/tips-and-tools/financial-and-legal-advice . [Online]
5. http://www.ehow.co.uk/facts_5850182_vertigo-considered-disability_.html. [Online]
6. Center, Disability Benefits. http://www.disabilitybenefitscenter.org/disability-work/menieresdisease. [Online]
7. The development of the Dizziness Handicap Inventory. Jacobson, G P and Newman, C W. 1990, Arch Otolaryngol Head Neck Surg, Vol. 116, pp. 424-427.
8. Symptoms, disability and handicap in unilateral peripheral vestibular disorders. Effects of early presentation and initiation of balance exercises. Bamiou, Doris-Eva, et al. 4, Feb 2000, Scandinavian Audiology, Vol. 29, pp. 238-244.

Dr. Anirban Biswas,
consultant neurotologist,
Vertigo and Deafness Clinic,
BJ-252, Salt Lake, Sector 2,
Kolkata-91, PIN-700091, INDIA

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Below is a policy document prepared by Dr Anirban Biswas and Dr Pushkar Kasat of VERTIGO and DEAFNESS CLINIC, KOLKATA, on the need of recognising balance disorders as a DISABILITY. Readers  may free download this document to pursue with the health care authorities and ministries of Social Justice in different Governments to pursue the cause of the hapless balance disorder patients such that BALANCE DISORDERS is accepted as a DISABILITY and balance disorder patients are not deprived of disability benefits which is available to other handicapped persons like the hearing impaired and the vision impaired as balance impairment is no less a handicap than any of the other impairments for which disability benefits are available

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ADVOCACY for RECOGNISING VESTIBULAR DISORDERS AS A DISABILITY

 Contents

Introduction………………………………………………………………………………………………………………… …………………………………………. 2

Definition and scope…………………………………………………………………………………………………………………………………………………. 3

Disorders causing balance/ vestibular dysfunction as encountered in clinical practice in the Indian subcontinent ……………. 4

Symptoms and impairments caused by balance disorders…………………………………………………………………………………… 5

Prevalence of vestibular disability………………………………………………………………………………………………………………….. 5

Impact of vestibular /balance disorders on day-to-day life and long-term effects…………………………………………………………………………. 6

Difficulty in attaining balance and spatial orientation…………………………………………………………………………………………………………….. 6

Problems with vision. …………………………………………………………………………………………………………………………………………………….7

Some such patients also have problems with hearing…………………………………………………………………………………………………………… 7

Cognitive issues. …………………………………………………………………………………………………………………………………………………………..7

Psychological issues. …………………………………………………………………………………………………………………………………………………….7

Other issues. ………………………………………………………………………………………………………………………………………………………………..7

Problems with working at heights. …………………………………………………………………………………………………………………………………….8

Measurement and Documentation of Vestibular impairments and quality of life issues…………………………………………………………………….. 8

Policy in the West…………………………………………………………………………………………………………………………………………………………. 10

United States of America and Europe………………………………………………………………………………………………………………………………….. 10

Relevant framework for India. ………………………………………………………………………………………………………………………………………………11

Summary. …………………………………………………………………………………………………………………………………………………………………………11

References…………………………………………………………………………………………………………………………………………………………………….. 12

Further reading. …………………………………………………………………………………………………………………………………………………………………14

Vestibular Disability
Introduction

Balance disorders also referred to as vestibular disorders which include instability, dizziness, and head spinning or vertigo are a subjective disorder that causes physical, functional, psychological and social impairment that is not compatible with normal life and imposes severe restrictions on the patient. Most balance disorder patients have a very poor quality of life with restricted mobility, persistent fear of losing balance and falling and a constant apprehension of impending vertigo. Many of them get sudden unprovoked attacks of very incapacitating head spinning with nausea and vomiting. Even when they are not getting the vertigo attacks most of them cannot walk about freely, need support or the help of a care-giver to move about, cannot sit at a place for a long time and are often unable to mentally concentrate on the work they do as they always feel insecure. The handicap that includes psychological impairment induced by dizziness is tremendous and many balance disorder patients are so very much incapacitated that they cannot earn their livelihood; many such patients are forced to stay indoors and cannot lead a normal productive life. Many studies suggest that about 50% of persons who present to clinics for dizziness have psychological disorder too as a result of the disease(1). Balance disorders can make a subject unable to perform any physical labour. Even light work as defined by the Social  Security Administration  of USA (SSA)’s guidelines for Social Security Disability applicants requires walking,  a function that can become nearly impossible for those suffering with vertigo / imbalance. Sedentary work, defined by the SSA as work that requires sitting for up to six hours a day may be very challenging in patients who suffer from many types of vestibular disorders like Meniere’s disease, Vertiginous Migraine etc. Vertigo causes dizziness and confusion; conditions that prevents the patient from mentally concentrating, and jeopardise the faculty of responding, thinking and acting quickly. For patients suffering from common vestibular disorders like Meniere’s disease, Vestibular neuritis, Vertiginous Migraine etc.  even getting in and out of a chair can be dangerous, and communicating on the phone and with others can be difficult due to impaired hearing esp. in conditions like Meniere’s disease and labyrinthitis. This prevents them from living a normal life and earning a livelihood. Quite often they become social outcasts and professionally castrated.  Hence vestibular disorders should be recognized as a cause of disability and such patients should be entitled to disability benefits. The functional or psychological impairment and the impairment in quality of life induced by the balance disorders is tangible, is measurable and is documentable. Since balance disorders are subjective sensations, it is difficult for others to  figure out how much inconvenience such patients are experiencing and how much the patient is incapacitated and hence it often goes unnoticed and the physical and psychological impact  unrecognised  but there is no doubt that balance disorder patients are crippled and are severely handicapped physically, socially and psychologically.

Vestibular disability jeopardise day-to-day tasks of the patient leading to unsteadiness , increased risk of fall ,decreased independence, social isolation, diminished self-confidence, low self-esteem along with socioeconomic and employment handicaps. In the West, particularly in the United States of America and Europe, vestibular disability is covered by laws that govern handicap and disability just as that of hearing impairment, and gets covered under several social security schemes (2)(3) to promote equality and prohibit discrimination against vestibular disabled people(4)(5)(6)(7). India, on the other hand, does list hearing impairment as a disability but does not include vestibular disability in the Persons with Disability (PwD) Act, 1995(8). The impact on the day-to-day life on account of the latter are far more negative than the former (i.e., hearing disorders) and this policy paper advocates on why it should be listed under the PwD.

Definition and scope

As per the WHO International Classification of Impairments, Disabilities, and Handicaps publication (9), in the context of health, an ‘impairment’ is any loss or abnormality of psychological, physiological, or anatomical structure or function and a ‘disability’ is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.

Disorders of the vestibular system lead to vestibular disability. Vestibular system is responsible for controlling human balance. The balance / vestibular system provides us the faculties of what in medical parlance is described as gaze stabilisation (due to which the visual surroundings appear stable and in defects of which the surroundings appear to be moving and the subject feels vertiginous), postural stabilisation (due to which the subject can stand stable and erect without falling and in defects of which the subject cannot stand erect and tends to fall) and a sense of verticality (by which we perceive in our minds what is vertical). This sense of verticality has to be identical with the gravitational vertical and if this does not occur the visual field appears tilted which is psychologically very traumatic for the patient. Patients of vestibular disorders have one or more of the sensations of head spinning/ instability and the visual surroundings appearing tilted. All of them singly or combined together is very traumatic and very unpleasant for the sufferer and most if not all of them are incapable of carrying out important functions required for normal execution of day-to-day tasks (10)   and consequently have a very poor quality of life and fear to go outdoors and as already mentioned hence are unable to earn their livelihood.  A balance disorder can profoundly impact daily activities and cause psychological and emotional hardship.

Disorders causing balance / vestibular dysfunction as encountered in clinical practice in the Indian subcontinent (in alphabetical order)

• Acoustic Neuroma
• Alzheimer’s disease (AD)
• Autoimmune Inner Ear Disease (AIED)
• Benign Paroxysmal Positional Vertigo (BPPV)
• Benign Paroxysmal Vertigo of Childhood(BPVC)
• Bilateral vestibulopathy from Ototoxicity and other causes
• CANVAS syndrome
• Cerebellar stroke
• Cervicogenic Vertigo
• Enlarged Vestibular Aqueduct Syndrome
• Labyrinthitis and Vestibular Neuronitis
• Mal de Débarquement Syndrome(MdDS)
• Ménière’s disease
• Migrainous Vertigo
• Multiple Sclerosis (MS)
• Muscular Dystrophies
• Neurotoxic Vestibulopathy from quinolines (antimalarials) / heavy metals
• Parkinson’s disease (PD)
• Perilymph Fistula (PLF)
• Persistent Perceptive Postural Dizziness(PPPD)
• Phobic Postural Vertigo(PPV)
• Post Concussion Syndrome
• Presbyataxia
• Psychomotor disadaptation syndrome
• Secondary Endolymphatic Hydrops
• Sensorimotor Neuropathy
• Spinocerebellar Ataxia (SCA)
• Superior Semicircular Canal Dehiscence (SSCD)
• Vestibular Paroxysmia
• Vestibular-ocular Reflex (VOR) dysfunction
• Wallenburg’s syndrome

Symptoms and impairments caused by balance disorders

• Vertigo and dizziness – Sensation of spinning, imbalance or unsteadiness, falls
• Spatial disorientation or imbalance – Poor postural control, clumsiness, poor coordination, problem in gait., difficulty in walking
• Psychological changes – Depression, anxiety, feeling of insecurity, loss of self-confidence.
• Visual impairment – Focusing on objects becomes difficult, difficulty seeing in the dark, difficulty in focussing on moving the head.
• Hearing impairment – Decreased hearing, buzzing/ ringing noise in ear, sensitivity to loud noises, trouble focusing on sounds may accompany vertigo or imbalance.
• Cognitive changes – Difficulty in remembering, processing information and concentrating on tasks. Most balance disorder patients are now known to have cognitive impairments also

Prevalence of vestibular disability

Unlike today when balance disorders can be very easily identified and documented  by the modern vestibulometric tests, in the past there were problems in accurately diagnosing and reporting vestibular disorders and hence worldwide statistics are scant. But based on some epidemiological studies, the high prevalence in the US and some other nations gives an idea of its extent through rest of the developed and developing world. An epidemiological study from the US reveals that the country has approximately 69 million people affected by vestibular dysfunction at any given point in time (11). That forms 35 percent of adults more than 40 years of age. A report from the National Institute on Deafness and Other Communication Disorders (NIDCD), nearly 8 million Americans have chronic problem balancing themselves and an additional 2.4 million have dizziness alone. Surveys in the US show that as many as 80 percent of people above 65 years of age have experienced dizziness. Furthermore vestibular vertigo is more common in elderly (up to 3 percent) and nearly three-fold in females (12)(13). Incidence is the number of new cases / persons without disease at baseline. The overall incidence of dizziness is 5-7% of the population and is as high as 35% in patients older than 40 years (14). Hence this indicates that 5-10% of the population presents to the doctor with vertigo / imbalance as a new case every year. The incidence of falls is 25% in subjects older than 65 years (14). Falls in the elderly are a major cause of morbidity. Vertigo and dizziness accounted for 2.5% of presentations in emergency rooms in US (15). The estimated number of visits to the emergency dept of hospitals in the year 2011 for dizziness or vertigo was 3.9 million in the US (16).

Prevalence is the number of people who have the disease at one particular point of time and is calculated as follows:-

Prevalence % = no. of people with the disease / total population X100

Many studies regarding prevalence of dizziness have been carried out in the Western world giving different figures. As a rough estimate by analysis of different studies, the figure from Wiltink (17) of 15% prevalence (not incidence) of dizziness in middle aged adults seems reasonably likely to be correct (18). Indian statistics are not available but averages of published studies of prevalence of vertigo in different countries shows that 15% of the general population suffer from balance disorders. Prevalence is 1.8% in young adults and more than 30% in the elderly (19)(20). 65% of individuals (older than 60 years of age) experience dizziness or loss of balance; often on a daily basis (20)(21). In the US, the estimated cost of medical care for patients with balance disorders exceeds $1 billion annually (20)(22).   All these facts and figures related to incidence and prevalence does show the enormity of the problem and that this requires a special attention of health care providers.

Impact of vestibular /balance disorders on day-to-day life and long-term effects

Vestibular disability has a negative impact on the quality of life. The impact can be summarized as the following (23):

• Recurrent falls  and a statistically significant increased risk of falls
• Whirling or spinning sensation off and on sometimes persistent also and /or swaying sensation even while sitting and lying down
• Light-headedness
• Feeling of getting pulled or pushed to one direction and recurrently requiring to hold on to some support