Neuropsychological Disability: A Hidden Epidemic of Neurological Conditions
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0028-3886.279709
Source of Support: None, Conflict of Interest: None
Keywords: Chronic neurological conditions, disability, gazette, health care, India, neuropsychological disabilityKey Messages: There is an urgent need for immediate interdisciplinary collaboration to prepare integrated uniform guidelines for holistic disability assessment in ‘chronic neurological conditions' with a special focus on “neuropsychological aspects of disability as a part of the continuum of healthcare”.
Neuropsychological disability: A hidden epidemic of neurological conditions
A systematic understanding of disability assessment trends over time at the national level for India shows that several neurological conditions may result in long-term disability. (Das et al. 2012). The measures of prevalence and mortality vastly understate the disability they cause. In the Persons with Disabilities Act (1995) (Equal Opportunities, Protection of Rights and Full Participation), neurological conditions have been ignored. Psychological disability assessment experience since 1997 at Postgraduate Institute of Medical Education and Research (PGIMER), Chandigarh, shows that, as per World Health Organization's (WHO) Disability Assessment Guidelines 1981, psychological disability is to be assessed using IQ assessment by a clinical psychologist. These patients are also subjected for the assessment of disability of hearing impaired, speech impaired, and neurological/neurosurgical conditions, etc.
We started assessing disability in patients with neurological conditions from 2009 onwards. While this assessment seemed appropriate for those patients who were genetically impaired in their ability to perform there seemed to be some shortcomings in the assessment while evaluating patients with neurological conditions because most of these conditions were acquired after gaining normalcy for some time, before having a neurological disability. Hence, a team comprising of experts in neurology along with a neuropsychologist started working on these lacunae. As per the definition of disability in India, a “person with a disability” means a person suffering from not less than 40% of any disability as certified by a medical authority (any hospital or institution, specified for the purposes of this Act by notification by the appropriate government).
As per the Act, “Disability” means blindness, low vision, leprosy-cured, hearing impairment, locomotor disability, mental retardation, and mental illness. A review shows most of the neurological disorders result in long-term disability and many have an early age of onset. The measures of prevalence and mortality vastly understate the disability, while 33% of years lived with neurological disability and 13% of disability-adjusted life years (DALYs) are due to neurological disorders. This accounts for four out of the six leading causes of years lived with disability (Mathers and Leonardi, 2003).
We attributed this cause of underestimation due to lacunae in the neuropsychological assessment procedure, causing limited identification of neuropsychological problems in neurological conditions. Hence, we started working in this direction with the need to serve and thrive for good-quality health care services. While we continued to provide the standard of care as per the guidelines, we worked towards identifying problems in the neurological disability assessment format. As a part of an interdisciplinary team, we worked on uniform assessment procedures which can be used in India. To achieve these, neurology experts looked at the neurological conditions, for example, stroke, dementia, traumatic brain injuries, epilepsy, headache disorders, multiple sclerosis, neuro infections, neurological disorders associated with malnutrition, pain associated with neurological disorders, and Parkinson's disease, etc. We reviewed the incidence, prevalence, and burden of neurological conditions, prepared lists in the order of priority, prevalence, incidence, and entered this information in the draft form of the proposed bill. We are happy that the term “Chronic Neurological Conditions” finally got recognition and its place in the Act 2016, and now it is one of the specified disabilities in the rights of persons with Disabilities Act, 2016.
We are sure that persons with various “chronic neurological conditions,” that is, stroke, epilepsy, multiple scleroses, dementia, peripheral neuropathy, muscular dystrophy, cerebral palsy, Parkinson's disease and others would become eligible to be evaluated for disability certification and benefits, although all of these conditions were missed in the Gazette 2018.
Moving toward the next problem; our review showed that there were different criteria present for the assessment of disability/impairment including GCS 1974; GOS 1975; WHO 1981; Verma 1998; WHODAS II 2000; Snoyman and Aicken 2011, Gazette 2001; IDEAS 2002; Gazette 2018. Furthermore, the final outcome of the assessment differed as wel [Table 1].
Since different institutes were following their own disability assessment protocols using their own criteria, it was left to the patients to get assessed from any institute as the outcome of the assessment, and the final percentage of disability would have been different. Also, as stated above, the present assessment format of carrying out a neuropsychological assessment in neurological conditions was absent as evident from the table showing different outcomes for psychological disability as per the review. Although as per WHO, 1981 criteria [Table 1], there is a mention of neurological conditions which include central upper motor neuron lesions but it does not mention any neuropsychological assessments. Thus, the only available procedure to assess psychological disability was to use IQ testing which again seemed to show assessment bias (as per Gazette 2001, 2011 and this problem continued even in 2018), since the integral part of the assessment of chronic neurological condition is neuropsychological assessment to ascertain disability is missing, although other aspects have been covered including physical, verbal, visual, etc. Hence, with interdisciplinary collaboration, we took up an initiative for formulating a committee in July 2013. The initiative was named (I-STAND), that is, Indian-standard track for assessing neurological disability.
This was done with the following plan:
The first meeting was planned for 2nd December, 2013 which was to coincide with the World Disability Day. Heads of the different institutes of national importance were invited. This was done to plan and finalize the standard assessing parameter/agreement of neuropsychological disability for finalizing neurological disability including, physical, verbal, and visual disability. During the meeting, certain subgroups depending upon the specialty of different experts were to be identified to give them the responsibility of ascertaining the assigned job and present the same at the meeting. Unfortunately, the same had to be canceled because many invited members communicated their inability to attend the meeting since they were busy with World Disability Day events. A project was written to have I-STAND in neuropsychological assessment for “Chronic Neurological Conditions.” But despite our efforts, we were not able to gather financial support. Unfortunately, even before we could voice the list of problems in neuropsychological assessment for disability for “Chronic Neurological Conditions” which is leading to a hidden epidemic of neurological conditions, Gazette 2018 was published.
As per Gazette 2018, there is no clarity on neuropsychological disability assessment for neurological conditions which is one of the most important parameters of disability assessment for psycho-diagnostic purposes (Verma and Nehra 1997) (e.g., neurological disability including neuropsychological, physical, verbal, visual, etc.). Although WHODAS II 2000 (Hindi) gives a measure of health and disability however, as per this Gazette 2018, an individual can be assessed using the Indian Disability Evaluation and Assessment Scale (IDEAS) despite IQ, where IQ is not representative of neuropsychological status. A study was carried out at the Post Graduate Institute (PGI), Chandigarh by the department of psychiatry. In this study, Grover et al. (2014) reviewed IDEAS which was recommended for the assessment and certification of disability by the Government of India (GOI). However, according to Grover et al. the psychometric properties of IDEAS as adopted by GOI remain understudied. He studied the same and reported that the GOI-modified IDEAS had good internal consistency and construct validity as tested in patients with residual schizophrenia which is a psychiatric condition. Another study published by Basavarajappa et al., in 2017 from National Institute of Mental Health and Neurosciences (NIMHANS) shows that there is a shift from IDEAS, which is unduly influenced by duration of illness (DOI), to WHODAS would have reduced the number of persons classified as disabled from 27 to 22 (a reduction of 10%). This shift would better identify patients, whose disability status is influenced by the degree of disability rather than by DOI: these patients would have been labeled as “not disabled” as per IDEAS, even when their disability was above the cutoff, as per WHODAS (cell B). With the use of WHODAS, these also would get certified. As a corollary, this shift would deny benefits to the patients, whose disability status is influenced more by DOI rather than by the degree of disability: seven patients would have been labeled as “disabled” as per IDEAS, even when their disability was below the cutoff as per WHODAS (cell C). Basavarajappa et al. also stated that with the use of WHODAS, these would lose their disability status, as this shift would remove the undue influence of DOI on certification. They highlight important issues through their letter: WHODAS is an instrument that can be used to assess disability across various medical conditions including psychiatric illnesses. Since there is a discrepancy in the present study, we urge for a larger field trial across all disabilities. Also Basavarajappa et al. states that DOI would not be a direct measurement of a person's disability. The initial proposal of IDEAS had “months of illness in the last 2 years” in place of DOI (The Rehabilitation Committee, 2002). But, the duration of disability was thought to be ideal. The timeframe for measuring disability would also be required as planned by the Department of Psychiatry, 2016, which seemed to be more for psychiatric conditions rather than neurological conditions.
Following a neurological condition, there could be various neuropsychological issues that might restrict a person from performing a job. To assess the same objective, unbiased assessment is needed for neuropsychological assessment which is important. Psycho-diagnostic parameter (Verma and Nehra, 1997) is considered important because if the individual has limited participation in society or at work (gain meaningful employment) he would not be able to earn as per his educational status. Presently, we are using Gazette 2018 as an assessment format for establishing disability. This is done on the basis of an IQ and the total percentage of disability (global disability percent) on IDEAS (which is a very subjective estimation), which gives us a range of percentages which seems to be ambiguous. This range ignores the importance of “Chronic Neurological Conditions” where a specific percentage of disability should be considered. Although, as mentioned earlier, IDEAS'02 includes dementia (as one of the neurodegenerative conditions), which assesses psychiatric conditions. According to the global burden of disease report, 33% of years lived with neurological disability and 13% of DALYs are due to neurological and psychiatric disorders. In 2011, the WHO established a new definition of disability, declaring it an umbrella term with three major components, that is, 1) impairments: a problem in body function or structure, 2) activity limitations: a difficulty encountered by a person in executing a task or action, 3) participation restrictions: a problem experienced by a person in involvement in life situations. Thus, we at the Neurosciences Centre and Trauma Center at AIIMS, New Delhi, India are again facing a serious problem in terms of the range of disability, using the same Gazette 2018 for assessing neurological disability, where only a few of the neurological conditions are mentioned and not the rest. There is an immediate need for I-STAND not only for neuropsychological assessment but also for updating all other parameters for which we identified the need for immediate collaboration and support. We think that a comprehensive format of neurological disability assessment is needed which should include an objective neuropsychological assessment. After all, WHO identifies the need and importance of Continuum of Health Care (Nehra, 2019), which is a right of each individual. The importance of these needful changes and a multidisciplinary teamwork were discussed in the National Congress on “Developing a Model Curriculum on Disability Studies for Higher Education in Indian Universities” which will further help in evidence-based practice for policies, management/neurocognitive remediation/rehabilitation, and disability assessment.
Neuropsychology acknowledges the support of the premier institute of national importance, the seniors, the colleagues, the professors of neurology, Neurosciences Center (NS) Center, especially the co-authors of this work. Without their honest effort, the term “Chronic Neurological Conditions” would not have been a part of the Act 2016. We appreciate their attention and understanding of the actual problem which will eventually benefit the patients.
We acknowledge the financial support of Department of Sciences and Technology for holding the meeting. Of course the same meeting had to be cancelled as mentioned earlier.
We appreciate the guidance to the Professors of Physical Medicine and Rehabilitation, AIIMS, New Delhi.
We are grateful of the guidance of Mr. T.D. Dhariyal State Commissioner for Persons with Disabilities, Govt. of Delhi; Former Chief Commissioner, for persons with Disability Govt. of India for his support to enter the term “Chronic Neurological Conditions” in the Act 2016.
We acknowledge the support of the directors of AIIMS, Chiefs of NS Center who have always attempted to bring the best of our abilities to the forefront for the sake of the patients. Acknowledgment is also due to the Chiefs of Trauma Center, Medical Superintendent and all the faculty members of NS Center, Trauma Center, for giving us this opportunity.
We appreciate the hard work of the students of Neuropsychology, NS Center, AIIMS for their support in this endeavor.
Without the input of patients with neurological conditions and their caregivers, we would have never understood their problems.
Lastly, we acknowledge the support of Late Dr. Gajendra Karna (Convenor—National Congress and Member, NHRC Core Group on Disability/Govt. of India and Member, Working Group, Global Research Network on Disability (Syracuse University, USA) and Honorary President, Society for Disability and Rehabilitation Studies) for giving us this opportunity for sharing our concern and making us part of the National Congress on “Developing a Model Curriculum on Disability Studies for Higher Education in Indian Universities” meeting. This meeting is now showing us a ray of hope for these patients.