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Abstract

Intellectual disability (ID) can be caused by various environmental and genetic factors and can lead to significant disability. There are numerous challenges in the field in terms of diagnosis and management. In this article, we have reviewed the literature in this field. A dependable estimate of the prevalence in India still remains to be made. Preventive measures and screening play an important role. The country could greatly benefit from a national newborn screening program, presence of more trained professionals, and public awareness measures. Drug treatments spanning beyond the usual drug classes have not yet found a breakthrough. Persons with ID face many challenges in the field of education, disability certification, access to government schemes, job placements, and living arrangements. We must take cognizance of these challenges at the earliest and work toward rectifying them.

Keywords

Intellectual disability challenges in diagnosis challenges in management prevention rehabilitation

Introduction

Intellectual disability (ID) is a neurodevelopment disorder characterized by deficits in intellectual functioning and adaptive behavior. Intellectual functioning is defined as a set of mental activities such as logical reasoning, problem-solving skills, learning ability, language skills, and so on. Adaptive behaviors include various social, conceptual, and practical skills. Both of these allow an individual to understand, interact with, and successfully navigate the world around them.¹ Common etiologies include genetic abnormalities and environmental factors. Known genetic abnormalities include Down syndrome, Fragile X syndrome, phenylketonuria, Lesch-Nyhan syndrome, neurofibromatosis 1, Rett syndrome, and so on. Environmental factors include maternal intake of alcohol and other substances, maternal infections such as rubella and HIV, maternal medical conditions like hypertension, diabetes, infections; obstetrical complications like abruption, placenta previa, cord prolapse; and childhood causes like infections, head trauma, intracranial lesions, and so on. As per the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5), the prevalence of ID in the general population is 1%.² Other sources quote a 2.5% prevalence in the general population.^{3, 4}

ID presents a plethora of challenges, from its diagnosis to various management options. This article reviews the available literature, and highlights the visible and invisible gaps in information and challenges faced in the diagnosis and management of ID in the areas of epidemiological estimation, screening and prevention, diagnosis, and various interventions.

Epidemiological Estimation

The burden of ID on health services is significant. The system can take constructive steps toward managing this burden only when armed with sufficient information on the actual prevalence of ID. This would be able to improve policymaking, advocacy, and use of resources.

Most data available is from narrative reviews and individual studies limited to certain communities. Narrative reviews provide a prevalence of 1% to 3.2%, depending on various parameters such as study design and population.⁵ Individual studies have provided results varying from 0.28% to as high as 20%.^{6, 7} A 2022 meta-analysis established the summary prevalence of ID in India as 2%.⁸ It is obvious that the paucity of data on the prevalence of ID in the country must be addressed at the earliest.

Screening and Prevention

Although most cases of ID may not have a readily identifiable specific cause, some conditions causing ID are amenable to preventive measures. Common prenatal factors include poor general health, iron and folic acid deficiency, and infectious diseases. These can be prevented through grassroots level initiatives such as health promotion among women of reproductive age group, maternal immunization, child spacing, iron-folic acid supplementation, and so on. Perinatal factors such as birth asphyxia, jaundice, birth injury, and neonatal infections can be minimized by adequate fetal monitoring, timely decisions for Caesarean section, neonatal resuscitation, management of Rh incompatibility, and so on. Postnatal factors like improper feeding, poor immunization, exposure to environmental toxins, medical disorders, trauma, and so on, can be managed through maternal and family education, promotion of breastfeeding, adequate sanitation, and newborn screening.⁹

Many of these initiatives seem quite simple to undertake through a proper maternal and child health program. Despite the massive efforts on the part of the Indian public health system and numerous programs rolled out by the government, there is still a sizeable proportion of Indian women going without adequate antenatal monitoring, and delivering at home possibly in unhygienic conditions without the assistance of trained professionals, and of newborns not receiving screening and other healthcare and immunization facilities.¹⁰ This contributes to the burden of preventable cases of ID.

Identification of certain etiologies can help with potential treatments and thus prevent development of ID. Newborn screening can identify inborn errors of metabolism. Phenylketonuria is an excellent example of the usefulness of newborn screening. Untreated cases can develop severe-to-profound ID, but identification and timely treatment of PKU can help prevent this. This makes a strong case for newborn screening initiatives. Such programs are being implemented in certain parts of India, like Goa, Kerala, and Chandigarh.¹¹ The first newborn screening program was undertaken in Bengaluru and found that inborn errors of metabolism such as hyperphenylalaninemia, tyrosinemia, glycinemia, and maple syrup urine disease were common causes of ID.¹² The Genetic Centre at Government Medical College and Hospital, Chandigarh was the first public hospital to start antenatal and newborn screening program.¹³ However, India still lacks a national newborn screening program. This can be attributed to various factors such as lack of awareness, insufficient budget, high number of home births, and others.^{14, 15} A pilot newborn screening program in Udupi district of South India concluded that the overall expenditure of screening, diagnosis, and treatment is lower than the financial burden of these preventable/treatable conditions.¹⁶ A national newborn screening program is the need of the hour, but is not without its pitfalls and challenges. Attaining 100% coverage of newborns is a Herculean task, and would require a large scale effort to educate the public, train professionals, and secure infrastructure. Additionally, many of these disorders require dietary treatment. These special diets are very expensive and not easily available.¹⁷

Diagnosis

Most cases of ID may not have a readily identifiable cause, and hence may not be picked up in routine screening.¹⁸ Significant birth and developmental history such as delayed cry at birth, asphyxia, poor APGAR score, neonatal jaundice, congenital anomalies, feeding difficulties, infections during neonatal and infancy period, and delayed developmental milestones can all alert a clinician to the possibility of ID. However, as discussed in the previous section, many births may not be institutional and the newborn might not have been assessed and provided adequate care. This would lead to delay in diagnosis. Additionally, many parents may not approach healthcare facilities with complaints pertaining to poor intellectual and adaptive functioning. Various myths and misinformation abound in context of ID. They may attribute the child’s condition to some personal failings. Many people operate under the misconception that the child will become better with time, and also tend to seek religious and faith healing. People are highly influenced by such cultural and religious beliefs, which may preclude them from seeking a medical opinion.¹⁹ Additionally, clinical services are not adequate and easily accessible. There are limited facilities for evaluation, testing, counselling, and treatment. Moreover, it is not practically possible to carry out neuroimaging in all patients presenting with ID.²⁰

Intervention

Educational Interventions

Educational interventions for persons with ID (PIDs) would typically include 2 kinds of curricula: academic based and life-skills based. Academic curriculum would focus on providing standard education with certain accommodations for PIDs, including reading, writing, mathematics, and sciences.²¹ A life-skills curriculum includes skills required to carry out daily activities and function in society, such as communications, finances, social skills, use of transportation, and so on.²²

Timely identification and early intervention would help the child better acquire skills and knowledge, leading to improved social functioning.²³ Unfortunately, evidence in this area is severely lacking from low- and middle-income counties like ours, and hence is not sufficient to guide policymaking and implementation.²⁴

Inclusive education, despite being in keeping with the tenets of the United Nations Convention on Rights of Persons with Disability (UNCRPD),²⁵ has been criticized due to lack of experienced teachers and teaching aides in classrooms, high student-to-teacher ratio, and inadequate financing, leading to PIDs not quite benefitting from this inclusion.²⁶ Special education may prove to be more useful, but the picture isn’t very rosy either. The challenges in providing education to children with ID in India are massive. These range from teachers’ and parents’ attitudes, accessibility of infrastructure, lack of assistive technologies, and availability of trained teachers. India still severely lacks special educators, with nearly two-thirds post lying vacant. While the policy on the paper is strong, implementation is an entirely different issue.²⁷

Drug Treatments

There is a well-established basis for use of many pharmacological agents for psychiatric comorbidities as well as cooccurring problematic behaviors. Antipsychotics, antidepressants, stimulants, mood stabilizers, alpha agonists, and beta blockers are all commonly used drug classes.²⁸ These treatments do not help with the actual underlying defects, and research has been going on to improve cognition. Interesting drugs that are being researched in recent times include Arbaclofen and minocycline for Fragile X, everolimus for Tuberous sclerosis, NNZ-2566 and IGF-1 for Rett syndrome, and memantine and epigallocatechin gallate (EGCG) for Down syndrome.²⁹ However, not all these studies are showing promising results. A double-blind placebo-controlled trial of everolimus in tuberous sclerosis found no improvement in IQ.³⁰

Drugs such as estrogen, minocycline, memantine, GABA-A antagonists, and so on, showed potential improvements in a mouse model of Down syndrome.³¹ However, a placebo-controlled trial of memantine found no cognitive- enhancing effects in persons with Down syndrome.³² Various drugs such as mGluR5 antagonists, riluzole, acamprosate, minocycline, and so on, are being tested for Fragile X syndrome, but have not found much success beyond preclinical models.³³

It is apparent that drug treatments to improve cognition in ID are not showing much promise as yet, though the search for a breakthrough continues.

Identification and Management of Comorbidities

Common comorbidities of ID include epilepsy, cerebral palsy, locomotor disabilities, attention deficit hyperactivity disorder (ADHD), and autism spectrum disorder.^34–36 However, most of these studies have been carried out in children and adolescents. The population of adults with ID has increased significantly owing to improvement in medical facilities and public health.³⁷ Older PIDs are bound to have different health issues when compared to the younger population. They would also have lesser social support due to ageing parents and family members. However, not much literature is available on the special needs of PIDs now that they have higher life expectancy.³⁸ This poses an enormous challenge for physicians and mental health professionals dealing with older PIDs, since the practice is not informed by robust scientific evidence.

Substance-use disorders (SUDs) in PIDs is an important yet often ignored aspect. Many studies have found higher prevalence of SUDs among PIDs as compared to general population.^{39, 40} Commonly used substances include alcohol, tobacco, and cannabis.⁴¹ The absence of any reports of estimation of SUD among ID from India presents a huge gap in the literature. Also, screening and diagnostic methods and treatment strategies for SUDs should be evaluated among PIDs, which is hardly the case. Modalities generally used may not be applicable to this specific population.⁴² Further research is needed in types of SUD in different categories of ID, manner of initiation, and access, diagnosis, and management strategies.⁴³

Certification and Various Schemes

Disability certification allows persons with disability to avail various provisions such as reservations in jobs, tax rebates, concessions in railway and bus travel, scholarship schemes, and so on.⁴⁴ Government of India has made provision for a single-card UDID for availing all schemes. The card is to be applied for online. However, not all districts and states have the facility for disability assessments and certification. States also should have District Disability Rehabilitation Centre in few districts to facilitate all the provisions for disabilities starting from disability assessment to rehabilitation. However, DDRC is not functional in many of the 325 identified districts. There is very poor awareness for various schemes by national trust in caregivers of PIDs. Legal guardianship is issued by local-level committee constituted at district level under chairpersonship of the district collector. However, many persons including lawyers are not aware of this provision and caregivers approach courts for issuing guardianship certificate. The procedure for certification has often been considered cumbersome. Additionally, many mental health professionals may pay more attention to clinical issues rather than making patients and their families aware about the disability certification process and its benefits.⁴⁵

Rehabilitation

When it comes to PIDs, the paradigm has gradually shifted from charity to a rights-based model. Nosology has also been replaced with less-stigmatizing terminology.⁴⁶ The UNCRPD talks about rehabilitation of persons with disability, which would entail supporting persons with disabilities to gain maximum independence and participation in society. In the context of ID, this process would be better called “habilitation,” since it would involve developing and maintaining skills that have not been previously acquired.²⁵

Skill acquisition for rehabilitation would begin with educational interventions, the challenges of which have been highlighted in an earlier section. The Central Board of Secondary Education has provisions for various exemptions for candidates with disability, such as extra time in exams, appointment of scribe, subject exemptions, and alternative question papers. PIDs also have the option of open schooling instead of attending school physically. The National Institute of Open Schooling provides academic courses along with vocational and community-oriented courses. It also has provisions such as extra time, amanuensis, and so on. However, the curriculum can be criticized for not being suitable for PIDs, and focusing more instead on other disabilities. Even the exemptions by all these organizations seem to be more focused on locomotor disabilities, visual, and hearing impairment.

Various avenues for employment for PIDs include government jobs, family-based employment, competitive/mainstream employment, supported employment, sheltered employment, self-employment, group employment, and so on. Despite these numerous possibilities, there are many challenges in implementing these employment models. Employment rates for persons with disabilities have been known to be significantly lower than for general population.⁴⁷ However, this data is for all PWDs and not specifically those with ID, for whom specific data is not available.⁴⁸ This makes it difficult to assess the success of these programs for PIDs.

In terms of government jobs, there are definite logistical as well as attitudinal barriers to placing PIDs. Separate posts have not been notified for ID as they have been for autism and learning disabilities. PIDs are often clubbed with persons with other disabilities, who may have widely different skills and potential. As a result, they may be unable to compete. The vocational training and employment services run by the Ministry of Labour and Employment are not proactive in placing PIDs.⁴⁹

Familial employment can provide a safe and supervised environment, but family members may hesitate to employ them at lower-level jobs.⁵⁰ Open or competitive employment is an invaluable tool to build the PID’s self-esteem and social experience, and may also pay better, but has various challenges such as unstable market conditions, discrimination, and difficulty in retaining jobs.⁵¹ Sheltered employment provides a safe workplace, but can lead to segregation, under- utilization of potential, lower wages, and poor job satisfaction.⁵² With self-employment, problems such as irregular income and loss of income due to sick days are common.⁵³

Community-based rehabilitation is a comprehensive approach to re/habilitation which seeks to provide skill development at a primary healthcare level. This would involve coordination among various resource centers and organizations. However, lack of intersectoral coordination plagues this model, apart from limited decentralization, poor community-level strategy, lacunae in monitoring of service delivery, poor knowledge dissemination, and lack of access to rural populations.⁵⁴

PIDs may require support, especially in adolescence and adulthood, as caregivers grow older and may be unable to care for them. The National Trust Act, 1999 provides the PWD the right to move out of the family home and for their chosen legal guardian to provide support. It also has provisions for respite care homes and group homes for adults. However, the National Trust provides grants to registered organizations for running day care centers, respite homes, and long stay homes only after they providing services for PWDs for a minimum of 2 years, 1 year of which should be with one of the disabilities listed under the National Trust. Such provisions are also available through various nongovernmental organizations and other bodies, but are plagued by issues such as insufficient funding, poor support from society, and limited space. India does not have a policy on independent living for PIDs. Additionally, no significant research is available on evaluation of schemes of the National Trust.⁵⁵

Future Directions

A lot of work remains to be done in the field of ID. Despite the advancement in legislation, we are still working on archaic principles in many areas. The real work begins with simple measures: better reproductive health, antenatal care, and assisted deliveries. Nationwide epidemiological studies would help us in accurately estimating the burden and required resource allocation. Awareness among the general public must be raised for timely diagnosis and interventions. A national newborn screening program is the need of the hour. Health centers must be equipped with trained specialists and requisite infrastructure.

Strengthening of interventions is a major requirement. Promising substantial research is still awaited in the field of drug treatments. Education for all remains an unrealized dream. We must work on training teachers and special educators to cater to the needs of children with ID. PIDs and their family must be made aware of the disability certification and its benefits. There is a need for uniformity and ease in the logistical aspects. Organizations working in the field of disability must have greater ease in applying for grants and support. Policymaking in terms of education and habilitation measures should focus more on the specific needs of PIDs rather than indiscriminately clubbing them with other PWDs for all purposes.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

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Addressing the Visible and Invisible Gaps and Challenges in the Diagnosis and Management of Intellectual Disability