Introduction: Empowering Parents

Young child gazing at gold-colored beads
 
Any early intervention programme will only be successful if the Trans-Disciplinary Team works proactively on empowerment of parents and families. This empowerment involves an understanding and belief in the Rights of the Child and knowledge of the policies and resources available through the government for persons with disabilities. As defined by the United Nations Convention on the Rights of Persons with Disabilities, Persons with disabilities include those who have long term, physical, mental, intellectual or sensory impairment which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others (Article 1 UNCRPD). 
 
The government enacts laws and makes policies for the removal of barriers which hinder full and effective participation of persons with disabilities. However, the barriers can be truly removed only when the families, the community and persons with disability, actually address and challenge each barrier and insist that the laws and policies are implemented.  
 
For example, the Right to Education Act, provides for Free and Compulsory Education for every child 6-14 years.  However, for a child with delayed development, there are many steps which will have to be taken, by the school, the Early Intervention Team, parents and the community, to actually make the school admission successful. These steps can range from convincing the family about the importance of schooling of a child with delayed development, to sensitising the school and teacher on how to include the child.  The range of needs and barriers that will need to be addressed may include:
 
  1. Accessibility
  • Transport from home to school and back
  • Barrier-free access to classroom
  • Accessible toilets
  • Communication – especially for non-verbal children
  1. Assistive devices 
  2. Adapted curriculum and assessment
  3. Teacher aid / shadow teacher / supporter
 
Once these needs are addressed, the child with delayed development will get a level playing field and will be able to attend school as is her right. 
 

Parents as Partners

It is essential for all Early Intervention Programme to have parents, as an integral partner in the planning and executing team.  This can only happen if the trans-disciplinary worker spends adequate time explaining to the parents all the dimensions of delayed development and the child’s specific disability.

It is essential for the parents to understand that delayed development in a child needs more than medical intervention. There may be co-existing complex medical issues but along with the medical support, the child will need long-term intervention and training, to be able to achieve her potential. It often takes a long time for parents to understand that doctors cannot cure their child’s condition and it is only through proactive intervention that the child has the potential to become a contributing adult within the family, the community and a contributing citizen of the country.  However, this intervention can be creative and a lot of fun for all involved.  It will also make people’s attitude positive.

Once the parents understand that, the child can progress, though slower in some areas of development. The parents should be encouraged to use all their creativity and wisdom to develop play activities and use resources which are available locally. Early Intervention activities when evolved in the local context by the parents and community themselves, always has a dynamic flavour. These activities then get easily transferred from parents to neighbour, other members in the community, anganwadi workers, teachers etc.  These activities can be local songs, stories, games, using low-cost local materials.

Once parents understand normal development of the child in all the areas, they will be able to appreciate the strengths and weakness of their own child and how to bridge the gap where possible or make an assistive device to help the child perform in that area.  For example (1) locally made rollator or standing frame to help in walking when the child may not have good standing balance or (2) a low technology communication board if a child is not verbal, (3) a low cost toilet aid with bricks where a child may not be able to squat etc.

Parents must be a partner in planning the intervention process for their child. Very often professional teams feel that who cannot read or write may not be able to contribute to planning. However, that is a myth, because all parents understand their children better than anybody else. They know what their priorities for training should be and most importantly, they have very valuable and insightful knowledge. This wisdom unfortunately gets lost, when we, as professionals, depend too heavily on text books.

Parents Networks

It is very important for the Early Intervention team to bring parents together so they can support each other as often as possible.  Even if their children are of different ages and have different needs and barriers, families supporting each other have always been a huge way forward.

One of the goals of our Early Intervention Programme, should be to help form parents groups and late, parent group networks. The most important role of such networks will be to share information, skills and solutions, to inspire each other and to motivate to find fresh strategies which will help their children become true participants in community life and economic activity. Early Intervention Programmes with family and community participation can help take that huge jump of inclusion of persons with disabilities when they are adults.

Parent Groups and Parent Network also have the power of negotiations and advocacy.  It is only when these groups develop and establish themselves that we have a collective voice for the removal of barriers, both environmental and attitudinal. 

 

Poonam Natrajan
Chairperson, National Trust