“Unlocking Potential: Understanding Intellectual and Developmental Disabilities”

What are Intellectual and developmental disabilities and Why is it important to work on this?

Intellectual and developmental disabilities (IDD) are a group of conditions characterized by limitations in cognitive functioning and adaptive behavior. These disabilities typically manifest during childhood and persist throughout a person’s life. People with IDD may experience difficulties in areas such as communication, learning, self-care, and social interaction. It’s important to note that the severity of these disabilities can vary widely from person to person.

Some common examples of intellectual and developmental disabilities include:

Intellectual Disabilities (ID): Formerly known as mental retardation, ID refers to limitations in intellectual functioning and adaptive behavior. People with ID often have difficulties with reasoning, problem-solving, learning, and understanding complex concepts. This can impact their ability to communicate effectively, manage daily tasks, and participate in social activities.

Autism Spectrum Disorder (ASD): ASD is a complex developmental disorder that affects communication, behavior, and social interaction. Individuals with ASD may have challenges with social skills, repetitive behaviors, and sensory sensitivities. The spectrum is wide, with some individuals having significant impairments while others may have mild difficulties.

Cerebral Palsy: Cerebral palsy is a group of disorders that affect movement, muscle tone, and coordination. It is caused by damage to the developing brain, often occurring before or shortly after birth. Individuals with cerebral palsy may have difficulty with motor skills, speech, and other physical activities.

Down syndrome: Down syndrome is a genetic disorder caused by an extra copy of chromosome 21, known as trisomy 21. It leads to distinct physical features, mild to moderate intellectual disability, and a higher likelihood of certain medical conditions such as congenital heart defects and respiratory issues. Developmental delays in speech and motor skills are common. With early intervention, education, and therapies, individuals with Down syndrome can lead fulfilling lives and actively participate in their communities.

Individuals with IDD often face significant challenges in their daily lives, such as communication difficulties, limited independence, and social isolation. Individuals with IDD  deserve the same rights and opportunities as anyone else. Advocating for and working on IDD issues helps create a more inclusive and just society where everyone is treated with dignity and respect.

Working on intellectual and developmental disabilities is essential for promoting equality, inclusion, and the overall well-being of individuals with IDD and their families. It reflects our commitment to human rights, social justice, and the belief that everyone deserves the opportunity to lead a fulfilling and meaningful life.

Support for individuals with intellectual and developmental disabilities often involves a multidisciplinary approach, including special education, speech and language therapy, occupational therapy, behavioral interventions, and sometimes medical treatments. It’s important for society to promote inclusion, understanding, and support for individuals with IDD to help them lead fulfilling lives to the best of their abilities.

Statistics on a national, state, and district level.

Disabled Population in India as per census 2011 (2016 updated) – In India out of the 121 Cr population, 2.68 Cr persons are disabled which is 2.21% of the total population. Among the disabled population, 56% (1.5 Cr) are males and 44% (1.18 Cr ) are females. In the total population, the male and female populations are 51% and 49% respectively.

The majority (69%) of the disabled population resided in rural areas (1.86 Cr disabled persons in rural areas and 0.81 Cr in urban areas). In the case of the total population, 69% are from rural areas while the remaining 31% reside in urban areas.

Intellectual  Disabilities (MR)

870898 (Male)

635066 (Female)

1505964

According to the Census of India, 2011 data shows that the total number of ID population in Maharashtra  is – 

Intellectual  Disabilities  (MR)

90408 (Male)

69801 (Female)

160209

According to the Census of India, 2011 data shows that the total number of ID population in District-Raigarh(Maharashtra)  is – 

Intellectual  Disabilities  (MR)

1830 (Male)

1457 (Female)

3287

According to the Census of India, 2011 data shows that the total number of ID population in Rural Raigarh (Maharashtra)  is – 

Intellectual  Disabilities  (MR)

1231 (Male)

962 (Female)

2193

Some important insights

Prevalence and Awareness: Intellectual and developmental disabilities are a significant concern in India due to its large population. According to the World Health Organization (WHO), India has a substantial number of individuals with intellectual and developmental disabilities. Despite this, awareness and understanding of these disabilities remain limited in many parts of the country.

Challenges in Diagnosis and Early Intervention: Diagnosing intellectual and developmental disabilities can be a complex process, especially in resource-constrained settings. Many cases go undiagnosed or are misdiagnosed, leading to delayed interventions. Early intervention is crucial for addressing developmental delays and improving the overall quality of life for individuals with intellectual and developmental disabilities.

Education and Inclusion: Inclusive education for individuals with intellectual and developmental disabilities is an area that has been gaining attention. Efforts have been made to integrate these individuals into mainstream schools, but there are challenges related to infrastructure, teacher training, and social acceptance. Specialized schools and vocational training programs also play a role in providing education and skills to people with intellectual and developmental disabilities.

Employment and Livelihood: Finding suitable employment opportunities for individuals with intellectual and developmental disabilities remains a challenge. There is a need for more inclusive workplaces and vocational training programs that focus on the strengths and abilities of these individuals.

Healthcare and Access to Services: Access to quality healthcare and support services for individuals with intellectual and developmental disabilities is often limited. This includes access to mental health services, therapies, and assistive devices.

Family and Community Support: Families of individuals with intellectual and developmental disabilities often face societal stigma and may lack access to appropriate support systems. Community-based initiatives, support groups, and advocacy efforts are helping to address this issue.

Legal and Policy Framework: India has various laws and policies that aim to protect the rights of individuals with disabilities, including the Rights of Persons with Disabilities Act (RPWD), 2016. These legal frameworks emphasize equal opportunities, non-discrimination, and accessibility.

Awareness and Advocacy: Blogs, articles, and organizations in India are working to raise awareness about intellectual and developmental disabilities, challenge stereotypes, and promote inclusivity. These platforms play a crucial role in disseminating information and sharing personal stories.

The Indian government has implemented several government initiatives aimed at addressing the needs and rights of people with disabilities. Some of these initiatives include:

• The Rights of Persons with Disabilities Act, 2016
• Accessible India Campaign (Sugamya Bharat Abhiyan 2015)
• National Action Plan for Skill Training of Persons with Disabilities (NAPSTPWD 2015)
• Assistance to Disabled Persons for Purchase/Fitting of Aids and Appliances (ADIP)
• Inclusive Education
• Swavlamban Health Insurance Scheme
• Reservation in Government Jobs and Educational Institutions
• Deendayal Disabled Rehabilitation Scheme (DDRS)

There are 9 National Institutes and 21 Composite Regional Centre for Skill Development, Rehabilitation and Employment of Persons with Disabilities(CRCs) Department has approved.

These Institutes are primarily engaged in Human Resources Development in the field of disability by conducting various courses, providing rehabilitation services to persons with disabilities (PwDs), and promoting Research and Development efforts in the field.

The basic objective of CRCs is to provide rehabilitation services to all categories of Persons with Disabilities (PwDs), train rehabilitation professionals, workers, and functionaries, undertake programs of education and skill development for PwDs, and create awareness among parents and the community regarding needs and rights of PwDs.

Major grassroots insights

My goal is to create a supportive community with information, tools, and support for parents to help their children with intellectual and developmental disabilities thrive.

– Community Outreach

– Community Counseling (AAA approach, A- Awareness, A- Advocacy, and A – Action )

– Connected to cost-effective rehabilitation services.

– Empowering caregiver

– Finding Challenges and gaps and working on them.

So far, we have completed outreach activities in about 14 Group Gram Panchayats of Pen and Alibag Tehsil, and we have also included some more villages of Pen and Alibag Tehsil, as part of our observation to assess the impact of distance from the rehabilitation center.

From outreach activity, Reached nearly 124 families of persons/children with intellectual and developmental disabilities. Got to know about their challenges and needs.

There are 44 children with IDD who now have access to rehabilitation services. Caregiver counseling has been initiated, and awareness of government schemes has started. A WhatsApp parent support group has been created. Caregiver skills training has been provided to empower parents to handle their children in a home setting

According to our outreach data, the total number of children (under 18) with IDD (including ASD, CP, DS and ID) in 14 Group Gram Panchayats and some additional villages of Pen and Alibag Tehsil is –

Intellectual and developmental disabilities (IDD)

25(Male)

19(Female)

44

In the course of my routine work, I get a chance to visit many such villages, which I reach on foot. Walking gives me a sense of geographical diversity, and by talking to family members with intellectual and developmental disabilities get to know about their situation and their understanding of disability, and also how far they are from resources. Diagnosing intellectual and developmental disabilities can be a complex process, especially in resource-constrained settings. Stigma and attitudinal barrier related to this is the biggest concern. Many cases go undiagnosed or are misdiagnosed, leading to delayed interventions. Awareness and understanding of these disabilities remain limited. The families I’ve visited and met so far most of them were persons/children with CP, ID, and ASD-like conditions. I have also seen that most persons/children with, CP, ID, DS and ASD-like conditions, had disability certificates but the diagnosis on disability certificates was ID. Livelihood issues, geographical diversity, far from resources, and lack of awareness of the child’s condition and services were the biggest challenges.