Very early into our existence, we realised that educating the family members is not only our biggest hurdle but also the biggest step in integrating our associates with the mainstream. Very often a parent burdened with grief, sadness and guilt, cannot fulfil the need of an intellectually disabled child. The needs can range from physical assistance to emotional nurturing.
To begin with, we help the family accept and understand the nature of the disability, its impact on the person as well on the other family members. Our counsellors are available every Thursday, with prior appointment, to sit with families and address their concerns and queries. We facilitate the process of obtaining disability certificate, legal guardianship and other benefits of the government schemes. Our counsellors also join the medical staff at AIIMS to help parents avail disability certificates and provide guidance and counselling.
Another endeavour which helps parents are support groups, where they meet other families and learn that their problems are not unique. We help them to develop an appropriate social life to fulfil a psychological and emotional need and at the same time make our students aware of their responsibilities and rights, as it is easy for others to take advantage of them. We work with families to build communication skills, decision making abilities, emotional well-being and utilising leisure time and self-care.
The role of a family is extremely important. A child with intellectual disability will shine if the family focuses on strengths and successes and effort is made to work on ‘difficulties’. Some areas like self-care, appropriate social life, decision making, and awareness of their duties, do need more attention than others but that can be provided over time with love.
An effective partnership between parents and teachers means both have realistic demands and expectations from each other. It is a must for the parents of our work associates to join a short training programme. IGNOU had chosen Muskaan as a study centre for this programme.
When a child is diagnosed with intellectual disability, the entire family feels the stress and burden, not only because they have to meet special needs of the child, but also because it creates lot of emotional complexes and pessimism. Meeting other parents facing similar challenges makes them realise that their problems aren’t unique. They learn that together they can create better opportunities benefitting their children.
Under Muskaan’s aegis, some of these parent organisations have become active lobbyists and are fighting for educational, recreational, and vocational services. Undoubtedly, their mission was difficult and they faced many challenges but united they have power and hope.
At Muskaan the parents’ organisation eases the way to procure various certificates from the government, for the benefit of people with intellectual disability.
All of us depend on others for our various psychological, emotional and financial needs. A very important aspect of our adult lives is to be able to build and maintain a relationship. Our work associates are no different, they have the same needs and demands. So, we help them develop skills to lead a smooth life. They need to feel a sense of achievement and competence to relate with people and build friendship. For adults, working out responsible roles, dealing with sexuality and building relationships becomes more challenging.
f the family does not make them aware of their rights and duties, no one will. To enforce and exercise our rights and perform all our duties, we need to be aware of the rights and duties. It is no different for persons with intellectual disabilities. They have the same rights and duties as everybody else, but because they need support, other adults often take even the smallest of decisions for them.
Muskaan, therefore raises awareness among people with intellectual disability and among the public at large regarding the rights and duties of adults with intellectual disability. It is important that the people around them (family members, legal representatives, friends, co-workers, etc.) respect their will and take it into account. Crucially, therefore, persons with intellectual disabilities must have a chance to convey what they want, how they feel and what they believe to be important.
Major emphasis is laid on this, especially, for persons using non-verbal mode of communication and people with unclear speech. They have to be given a system of communication which is easily understood by majority. Simultaneously, future guardians have to be trained.
Whatever may be the form or extent of dependence on others, our work associates are equipped with the skill to take, at least some, of the decisions themselves. It starts with small things like asking them their likes and dislikes in food and what clothes they would like to wear. Then it goes on to more complex decisions – would they like to meet certain people or take part in some activities.
The family has to work as unit to eliminate certain widespread misconceptions like people with intellectual disabilities always remain children, they are stubborn, aggressive, cannot understand what we are telling them, cannot control their impulses or be self-disciplined and self-regulated.
Like any adult, unconditional love and acceptance, approval and appreciation is critical for people with intellectual disability. A constant reminder of their failures not only kills their initiative for learning but also builds resistance towards learning. In some cases where parents have non-accepting attitudes or there is a lack of positive experiences, the student’s self-image suffers a severe blow, causing many emotional and behavioural difficulties.
They also have to be taught how to recognise their emotions and mental state and how to relate good and bad with one’s feelings as well as others’ feelings. When we take the time to explain, they understand the “why” of expected behaviours and consequence of “bad” behaviour.
If working is an important outlet of self-expression then an opportunity to unwind is equally important. Active involvement in recreational activities like physical fitness, creative mediums, and movies etc. enhance their interpersonal skills which leads to a well-rounded individual. Therefore, appropriate skills need to be imparted for managing free time otherwise it can lead to disruptive behaviour.
It is our aim, as far as possible, that our work associates look after their daily needs including proper hygiene. The starting point is identification of the body and its parts. It progresses to appropriate and structured training and then looking after their needs without help. They have to know how to protect themselves not only from physical dangers like fire, electricity, road traffic etc. but also from abuse by other human beings. This can be encouraged by developing a sense of privacy once they start identifying family, home, institute, teacher, room, one’s belongings etc.