Understanding Disability
Persons with disabilities include those who have long term physical, mental, intellectual and sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with the others. It is important to put forth that such people, when given equal opportunities and guidance, not only become effective contributory members of society but also provide encouragement for others to move forward towards a better future.
 
Let us tell you about two such people
Ms Sharmila Divatia, a member of the national trust board, is an extensive reader. She has degrees in mathematics and business administration. She loves to trek, cycle and swim. Sharmila has cerebral palsy but she has never let it come in her way to progress. She works for Essar and is a senior information technology professional.
 
Mr Achyutanal Guha is trained in TV repairing and electrical wiring and multimedia applications. Mr Guha has Autism. He manages accounts and administrative responsibilities in action for Autism, New Delhi. He is happily married.
 
You must also have heard about the famous scientist Stephen Hawking, who is a paraplegic and Bill Gates the ex-CEO of Microsoft corporation who has Asperger’s syndrome (a part of the autistic spectrum disorder)
 
2. Medical Issues
 
2.1. Symptoms
There is no single symptom that can be associated with the diagnosis of autism, cerebral palsy, mental retardation or multiple disabilities. Two or more symptoms, in many cases, have been known to occur together. This information may, therefore, be considered as a mere pointer towards the cause and not a diagnosis. It is actively suggested that the opinion of a doctor or medical specialist be sought for further guidance.
 
2.1.1. Locomotor
Locomotor difficulties are very closely associated with cerebral palsy. These difficulties, however, may or may not be associated with autism, mental retardation and multiple disabilities. In autism, locomotor difficulties are associated with balance and clumsy movements and unusual postures. In multiple disabilities, where cerebral palsy is an associated condition locomotor difficulties are observed.
 
2.1.2. Behaviour
Unusual behavioural are a frequent occurrence in autism and are considered a hallmark of the condition along with communication and socialization issues. These unusual behaviours may or may not occur in mental retardation and cerebral palsy. In multiple disabilities where autism is a related condition behavioural issues are frequently seen.
 
2.1.3. Sensory
Sensitivity – increased or decreased to any one or more stimuli is seen in autism. It could be a mild or extreme reaction to varying sound levels, light, textures or touch, smell, temperature variations and certain tastes. Similarly, in multiple disabilities where autism is an associated condition sensory issues are likely to arise. These, however, may or may not occur in cases with mental retardation and cerebral palsy.
 
2.1.4. Speech
Speech or the use of language is a known and accepted means of communication, but not the only one. A lot of communication does occur using gestures, signs and facial expressions – known as non-verbal communication. A whole spectrum exists as far as speech development is concerned. In autism, the range begins with well-developed language skills to only need-based communication, to a situation where there is a complete lack of speech-but exchange of ideas do occur using non-verbal means. It would be necessary to mention that in many cases speech development does occur with prolonged therapy. Similar situations could occur in multiple disabilities. Similar occurrences may or may not be observed in mental retardation and cerebral palsy.
 
2.1.5. Cognitive and Intellectual Issues
Various stages of intellectual or cognitive development are observed in autism, cerebral palsy, mental retardation and multiple disabilities. Intellectual development, however, is not limited to academics alone but is extended to acquiring technical skills too. Abilities to learn vary across autism, cerebral palsy, mental retardation and multiple disabilities. In the autism spectrum, individuals with high learning abilities are known. Such abilities are also found in people with cerebral palsy and multiple disabilities. Also included are people with learning difficulties or lowered abilities who can be trained for a productive life. Lowered intellectual abilities are almost always associated with mental retardation but with timely intervention and therapies, these people can be trained in skills leading to a vocation and thus economic independence.
 
2.1.6. Call ABILINE for counsellor assistance.
2.2. Medical Tests and Assessments
As far as the diagnosis of autism, cerebral palsy, mental retardation and multiple disabilities is concerned, there is no single medical test or assessment tool available. Often several such medical tests and observational sessions have to be undertaken before any definite conclusion can be reached. These tests and assessment sessions may be spread over some time and not confined to a single seating. It would therefore help if the parents/guardians were to prepare the child for these sessions, to minimize the possibilities of any trauma.
 
2.2.1. Why are these medical tests and assessments important?
These are necessary to confirm a diagnosis as well as to ascertain the current status. They are further useful in charting the course of future treatment and interventional procedures. Most of these procedures are non-surgical and do not require hospital stay unless it is related to postoperative monitoring after corrective surgery. While the medical tests can be conducted in laboratories in govt. hospitals, there are also some recognized and authorized medical institutions, private laboratories and hospitals where they can be carried out. The assessments may however be done by special educators and therapists at their place of work. These can also be done in some non-govt organizations which have the required facilities.
 
2.2.2. Where can these tests and assessments be carried out?
These tests can be done after consultation with a doctor or medical specialist who then puts in a request and referral. These tests may be carried out in govt hospitals and laboratories or recognized and authorized medical institutions including some private hospitals and pathological clinics. The assessments may be carried out in govt hospitals or authorized medical institutions or by special educators and therapists independently. Assessments may also be carried out in some non-govt.al organizations with appropriate facilities to do so.
 
3.1.3. For children above 14 years
There are broadly two avenues open for older children. Children who can and would like to follow a formal academic stream can continue with college and higher education.
 
There is also the option of pursuing a vocational or skill development course. There are professional courses in computers etc offered by institutes. These can open many employment opportunities for the person. There are vocational rehabilitation centres in many states that offer training courses to persons with disabilities. Vocational training is also offered by government-run and other recognised institutes.
 
There is a 3% reservation for persons with disabilities in all Government educational institutes and other institutes receiving aid from the government.
 
3.1.4. Are there any special facilities that are available for the educational needs of children with disabilities?
Yes, there are many special books, available teaching-learning materials. Different materials in various formats have been developed keeping in mind the needs of the child. For instance, there are books with enlarged print or with a tactile input for children with vision difficulties.
 
Many audio-visual aids are available. Talking books and interactive Cds can make learning fun for the child.
NGOs can be contacted for information on where and how to source this material.
 
3.2. Professional courses and training available
 
3.2.1. For rehabilitation and career development in the area of disability
The National Trust conducts a caregivers course that equips people with skills required to work with persons with disabilities. These enable them to be better and trained caregivers.
 
There are many professional courses available that train people in the areas of special education, physiotherapists, psychologists etc. Parents of children with disabilities can also train in these areas. Many of the courses are being conducted by organisations recognised by the Rehabilitation Council of India.
 
3.2.2. Are there any pieces of training/courses available for other stakeholders?
The National Trust conducts training for parents, lawyers and other stakeholders regularly. This helps sensitize them towards disability concerns.
The Rehabilitation Council of India conducts training courses for primary health centre doctors and other stakeholders across the country. The aim is to enable them to diagnose conditions and effect better and timely referrals.
 
3.3. Are there any rights & provisions in education for children with disabilities?
3.3.1. Under the National Trust Act
 
3.3.2. Under the persons with disabilities Act
 
3.3.3. Facilities by the Government
 
3.3.1. Under the National Trust Act
The National Trust Act has scholarship schemes like Gyan Prabha.
This is a scholarship scheme wherein rs.700 per month is given for pursuing post-schooling professional courses, vocational training and other creative activities from recognized institutions for employment or self-employment. Post schooling here is meant to define persons who are 14 years and above. It does not lay down any minimum educational qualification.
The form can be downloaded from the National Trust website.
 
3.3.2. Under the Persons with disabilities act:
The persons with disabilities act provide free education to every child below the age of 18.
Government schools and schools receiving government aid are required to reserve 3% seats for children with disabilities.
There is also a 3% reservation in all educational institutes for persons with blindness, low vision, leprosy cured, hearing impairment, locomotor disability, mental retardation and mental illness.
 
3.3.3. Facilities by the Government
There are special infrastructural provisions in schools. All government schools are to have ramps and accessible toilets. There are also scholarships offered by government schools. Different states have their policies. You would need to check with the state education department or the school about this.
School boards also offer concessions and facilities to children with disabilities. CBSE allows the person to have a writer or a scribe for exams. Extra time and an option of subjects are also offered. Other state school boards have their policies.
 
4. Legal Issues
Persons with disabilities have rights as citizens of the country. They are protected by the constitution of India and all other laws that are meant for everyone. Keeping in mind some of their specific needs however four laws are meant specifically for them. There is also a convention on the rights of persons with disabilities that India is a signatory to.
Children with disabilities are also covered under the Convention on the rights of children.
 
4.1. What are the four laws for persons with disabilities?
The four laws are
- National Trust for the welfare of persons with autism, cerebral palsy, mental retardation & multiple disabilities act 1999.
- Persons with disabilities equal opportunities, protection of rights and full participation act 1995.
- The Rehabilitation Council of India Act, 1992.
- The Mental Health Act, 1987.
 
4.1.1. The National Trust for the welfare of persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act 1999
The National Trust Act covers persons with four disabilities. These are mental retardation or intellectual disability, Autism, Cerebral Palsy and Multiple disabilities.
The act gives due importance and recognition to persons with disabilities. It enables and empowers them to live independently and fully through its various schemes
The act focuses on strengthening facilities and providing support for individuals to live within their own families. For persons with disabilities who require care-taking facilities, there is a provision for the appointment of a guardian.
Both persons with disabilities and their parents and guardians have been invested with decision making powers. They can be a part of the local level committee that has the power to appoint a guardian. Parents and parent associations can also be appointed to the board of the National Trust.
Registered parent associations can apply for funding for setting up facilities for persons with disabilities.
 
4.1.2. Persons with disabilities equal opportunities, protection of rights and full participation act 1995
The Persons with Disabilities Act covers persons with seven disabilities. These are blindness, low vision, leprosy cured, hearing impairment, locomotor disability, mental retardation and mental illness.
The act incorporates facilities that persons with disabilities are entitled to and the responsibilities and obligations placed on the government, public and private sector enterprises.
The persons with disabilities act provide for: –
- Free education for children with disabilities up to the age of 18.
- 3% reservation in employment in the Government sector for persons with a physical disability, hearing impairment and vision impairment.
- Creation of barrier-free environment- social security and unemployment allowance.
- It talks about prevention and early identification of disabilities.
 
4.1.3. The Rehabilitation Council of India Act, 1992 or the RCI Act
The Rehabilitation Council of India Act governs professionals working in the field of disability and organisations that train professionals. It regulates the training of rehabilitation professionals. All professionals working in the field of disability have to register with the RCI. The RCI also recognises institutes and courses for the training of professionals.
 
4.1.4. The Mental Health Act, 1987
The Mental Health Act covers persons with mental illness. It lays down guidelines for:
- Protection of rights of persons with mental illness during treatment.
- For admission to psychiatric hospitals for treatment
- Legal aid
- Guardianship and custody.
 
4.2. Legal Guardianship
 
4.2.1. What is Legal Guardianship under the National Trust Act?
Legal guardianship is a system where a person is appointed for the care of another person or to look after the property and finances of the person. A guardian under the national trust can be appointed for the care of a person with a disability and his property or solely for the maintenance of the person. There can be different guardians for these purposes.
 
4.2.2. Why is it needed?
Till the age of 18, parents are the natural guardians of their children. After that even parents are required to be appointed legal guardians of their child. Guardianship may be required especially for persons with mental retardation [intellectual disability] because even after the age of 18, the law does not recognise their ability to make decisions. Guardianship may be required to access many schemes such as availing loans. Hence there is a need for another person to be appointed to take care of their financial and other interests. The guardian can take all legal decisions on behalf of the person that is in the best interest of the person.
 
4.2.3. Who grants Guardianship?
Guardianship is granted by a local level committee. These local-level committees are set up in each district of the country. The National Trust or an NGO registered with the National Trust can be contacted for details.
 
4.2.4. Does the guardian have any property rights?
No, a guardian does not have any property rights. A guardian is appointed to manage a property and does not own it.
 
4.2.5. What is the role and responsibility of the guardian?
A legal guardian appointed under the national trust act has to ensure that the person and /or property in his care is cared for and is safe. She/he is required to submit audited accounts to the local level committee regularly. A guardian not found doing his duty can be removed by the local level committee after an enquiry.
 
4.3. Local Level Committees
 
4.3.1. What is a local level committee?
A local-level committee is a quasi-judicial body appointed by the board of the national trust act. the local level committee is required to be constituted in every district of the country. it comprises three members, the district magistrate or deputy commissioner of the district, one representative from a national trust registered organization and one person with a disability.
 
4.3.2. Who constitutes the local level committee?
A local-level committee is a quasi-judicial body appointed under the National Trust act. It is constituted by the board of the National Trust.
 
4.3.3. What does the local level committee do? What are their role and responsibility?
The local level committees are formed for the main purposes of granting and monitoring legal guardianship.
 
4.3.4. How can you contact your local level committee?
To find out about the local level committee in your district you can contact the national trust or look for information on the National Trust website. An organisation registered with the National Trust in your state will also be able to guide you.
 
4.4. Disability Certificate
 
4.4.1. What is a disability certificate?
The disability certificate is a very important document for all persons with disabilities to avail many of the provisions of the laws and to access any scheme of the Government, the person with a disability must have a disability certificate.
 
4.4.2. Who can get a disability certificate?
A person who has any of the seven disability conditions recognized by the persons with disability act can get a disability certificate. These seven disabilities are – Blindness, Low Vision, Leprosy cured, Hearing Impairment, Locomotor Disability, Mental Retardation and Mental Illness.
Besides this persons with autism can also get a disability certificate.
 
4.4.3. Where are disability certificates issued from?
A person with a disability has to go to a Government hospital authorized to issue a disability certificate. A medical board issues a disability certificate to persons who have 40% or more disability based on an assessment conducted there.
 
4.4.4. What is the procedure for getting a disability certificate?
The procedure for issuing the disability certificate varies from hospital to hospital. It is advisable to call the hospital and find out the procedure and the documents that are required to make the disability certificate. Generally, the hospital social worker or the rehabilitation department will have this information.
 
4.4.5. What are documents required for the disability certificate?
Generally, hospitals ask for proof of residence of the child or person with a disability. Identification papers of the parent or guardian are also required. A ration card or voters’ id card and up to 4 photographs are generally required. Different hospitals may have different requirements. Please call the hospital and speak with the social worker or someone in the rehabilitation department about documents that are required.
 
4.5. Redressal of Complaints
 
4.5.1. What can you do if you have a complaint?
If a person with a disability does not get his rights extended by the act, she/ he has a right to seek redressal. The person or someone on his/ her behalf can approach various forums to seek redressal. Each law also has its inbuilt systems for addressing these needs.
 
4.5.2. What should you do to seek redressal of a complaint against the National Trust?
Under the National Trust Act, the local level committee is the forum to go to in case of any complaints regarding guardianship. For redressal of other complaints, the office of the National Trust should be contacted.
 
4.5.3. Whom to go to for redressal of complaints under the persons with disabilities Act?
A complaint can be addressed to the state commissioner persons with disabilities. They are appointed in each state. You need to contact your state commissioner for persons with disabilities. Generally, the secretary of social welfare is the commissioner of disabilities. In case there is no solution you can contact the chief commissioner for persons with disabilities, in Delhi. For further information, you could access the website of the chief commissioner persons with disabilities.
 
4.5.4. Can a person with disabilities whose rights are being denied approach the courts?
Yes, as a citizen of the country a person with a disability has an equal right to file a case in the courts. Many cases have been filed by or on behalf of persons with disabilities. Many have won their cases in various courts across the country setting a precedent and ensuring the implementation of many rights and facilities.
 
4.6. What are the other provisions that are available for persons with disabilities?
 
4.6.1. Can a guardian under the national trust open a bank account? Reserve Bank of India guidelines:
The Reserve Bank of India has issued guidelines to all banks asking them to recognise the Guardianship Certificate issued by the local level committees as a basis of opening and operation of bank account by the guardian.
 
4.6.2. Does an employee with a disability get any special/extra leave?
Department of personnel and training has granted 10 days per year, special casual leave to differently-abled central government employees. This has been sanctioned for attending seminars/ conferences/ training programmes on disability.
 
5. Schemes and Services
 
5.1. Schemes offered by the National Trust
Many schemes are extended by the National Trust for persons with Cerebral Palsy, Autism, Mental Retardation or intellectual disability and those with multiple disabilities.
 
5.1.1. Niramaya – A health Insurance Scheme
Niramaya has an insurance cover up to Rs one lakh for one year for persons with autism, mental retardation, cerebral palsy and multiple disabilities. It is free for people with a monthly income of less than Rs 15,000 per month. Others have to pay an annual fee of Rs 250. the insurance cover is for regular medical checks up, hospitalization, therapy and even corrective surgery. You can download the form from the national trust website or contact an organisation registered with the national trust for details.
 
5.1.2. Uddyam Prabha (Incentive) Scheme
This is a scheme that provides loans to persons with disabilities for promoting income-generating economic activities for self-employment. Applications can be downloaded from the national trust website.
 
5.1.3. Gyan Prabha (Scholarship) Scheme
This is a scholarship scheme given for pursuing post-schooling professional courses, vocational training and other creative activities from recognized institutions for employment or self-employment. Post schooling here is meant to define persons who are 14 years and above. It does not lay down any minimum educational qualification. Up to Rs.700 per month per person is given under this scheme.
The form can be downloaded from the National Trust website.
 
5.1.4. ARUNIM – Association for Rehabilitation under National Trust Initiative of Marketing
ARUNIM is a marketing initiative for products made by persons with disabilities. Persons can also be trained to manufacture products selected by the ARUNIM board.
Any individual above the age of 18 years, associations, corporate bodies/group of persons can apply to become members. There is a membership charge of Rs 500/-. The details can be sought on the website of the National Trust.
 
5.1.5. Aspiration
Under this scheme, daycare centres are set up for children with disabilities in the 0 to 6 years age group. The aim is to build school readiness skills and prepare the ground for inclusion.
 
5.1.6. Samarth
Under this scheme of the National Trust, funding is being provided to organisations to set up residential centres. These centres are for persons with disabilities above 18 years and those whose parents are not there. They provide both short term [respite care] and long term [prolonged care]. Other facilities include early intervention, special education or integrated school, open school, pre-vocational, vocational training etc.
 
5.2. The Services offered by the National Trust
The National Trust offers various services & schemes for organisations and persons with disabilities. Such services & schemes are generally implemented through SNAC, SNAP and other registered non-Governmental organisations.
 
5.2.1. What is State Nodal Agency Centres or SNACs
State Nodal Agency Centres or SNACs are set up in each state across the country. Their main role is to conduct awareness and sensitisation programmes. They also facilitate the formation of parent associations and disabled people’s organisations. A SNAC can be contacted for information about the National Trust schemes and for mentoring of smaller NGOs.
 
5.2.2. What is a State Nodal Agency Partner (SNAP)?
SNAPs are set up in larger states to work as partners of the SNACs. They assist the SNACs in spreading awareness and implementing schemes of the National Trust.
 
5.2.3. How can an organization register with the National Trust:
There are over 750 organisations across the country that are working in the 4 National Trust disabilities and are registered with them.
For details on how to register with the National Trust, you can contact the National Trust office or website.
 
5.3. What are the other Government Schemes for persons with disabilities? Schemes of the Central Government
 
5.3.1. Rail Travel Concession
For persons with a physical disability, mental retardation, total vision loss [blindness]. 50% concession is given for both the person & the for persons with speech & hearing impairment 50% concession is given for the person with a disability but not for the escort.
 
5.3.2. Air Travel Concession: (Indian Airlines)
50% concession is given on normal (full) economy class fare for persons with locomotor disability – where disability is 80% or more and for persons with total vision loss [blind]. It is valid for all domestic flights only.
For details contact the Indian airlines’ office as the procedure keeps changing.
 
5.3.3. Assistance for purchase of Aids and appliances (ADIP Scheme)
Persons with disabilities are provided aids and appliances at minimum costs under the ADIP scheme. There are different lists of aids and appliances for persons with different disabilities, depending upon their needs. Social workers in hospitals and NGOs will be able to provide information about organisations that make and distribute these aids and appliances in your city.
 
5.3.4. Income Tax Concessions:
Parents of persons with disabilities are entitled to a tax exemption of Rs. 50,000 on their total income. A deduction of Rs 75,000 is available in case of severe disability i.e. 80% or more of one or more disabilities. A disability certificate is required for this purpose. A deduction of Rs 40,000 or the actual sum paid whichever is lesser is also given on expenditure incurred on medical treatment of the person with a disability. A certificate from a doctor in a Government hospital is required.
 
5.3.5. The National Handicapped Finance and Development Corporation (NHFDC)
The NHFDC provides loans for self-employment of disabled persons; for higher studies or professional training,- for agricultural activities and for promoting the production of assistive devices for the disabled. They also assist disabled entrepreneurs. Besides these schemes, each state has its own set of schemes for a scholarship, disability pension, unemployment allowance etc. for specific information. You may require a check with the state welfare department or an organisation working in the state.
 
6. Employment
Introduction
Every person with a disability has a right to all kinds of work on an equal basis with others. There is a continuum where people have the right to work in the open market to working in sheltered workplaces meant specifically for persons with disabilities. Many opportunities are open to persons with disabilities these days at all levels. What is important is to match the abilities, skills and opportunities.
 
6.1. How do you decide what kind of work to train for?
OR
What would be the basis for identifying what work to do and train towards?
When you look at what work to do it is important to take into account certain things like the interests and abilities of the person and the opportunities for training that are available or could be made available. It is important to also look at the skills required for the work area identified. A combination of early skill identification and vocational training could help chalk out a course with the person leading towards suitable employment opportunities. Work need not always be linked solely to the amount earned. Many people who work in sheltered workplaces may not earn that much but may find a lot of work satisfaction. It is important to look at work from the perspective of it being a person’s right and the dignity it affords. Going to work also offers many opportunities to the person in terms of a routine, to be with other people, to learn from others and just be part of society. Remember there is space for everyone; we just need to find the right space where we find happiness.
 
6.2. Training and Employment facilities:
What are the facilities available for training and employment?
Few Government, non Government and private organisations are involved in imparting vocational training leading to employment opportunities. There are vocational training centres [vrcs] that are run by the Government that offer a range of training courses designed for different skill levels. They offer recognised courses ranging from carpentry to computers. There are sheltered workplaces that are exclusively for persons with disabilities. Many of these have been started by NGOs and parent associations. Private organisations and service industries also offer training courses that may eventually lead to employment there itself. Persons with disabilities can acquire skills and be trained in an area they choose. They could start something of their own and be self-employed. Besides this, there are many employment opportunities available in Government and private sector enterprises. Many call centres and hotels are also employing people with disabilities.
 
6.3. Legal Provisions
Are there any legal provisions for the employment of persons with disabilities?
The persons with disabilities act provide for a 3% reservation for persons with a physical disability, vision impairment and hearing impairment.
 
6.4. Special Facilities
Are there any special facilities available for the employment of persons with disabilities?
The National Trust offers Uddyam Prabha (incentive) scheme. This is a scheme that provides loans to persons with disabilities for promoting income-generating economic activities for self-employment.
Applications can be downloaded from the National Trust website.
The National Trust also organises job fairs and ability melas. These provide an interface between employers and persons with disabilities leading to placements. It also provides an opportunity for both sets of people to look at emerging trends and needs. There are special employment exchanges in every state where you can register for posts in the Government sector. The person is informed whenever there is a vacancy. Many posts are also advertised in the employment news and other newspapers and the person can apply directly. Please call the counsellor for further information.