AIM: The main aim of project ENRICH is to empower the families who care for Individuals with Development Disabilities (IDD) by focusing on improving their quality of life, supporting the families by educating, training them with skills and information as and when required.
To achieve this aim-implement 10 self-care activities and Emotional and practical support to families with IDD.
Everywhere around the World, much research focuses mainly on the care and diagnosis of the persons with IDD. Slowly a shift has been observed in addressing the family care givers’ burden in the clinical settings but there is not much research on showing the ways for the caregivers to help themselves to improve their mental and physical health. Materials available focus on the burden of caring can be reduced mainly by understanding and managing the PwD. But to do that, the family members who the caregivers must also be equipped to take care of their mental & physical health themselves.
The training involved understanding and practicing these 10 self-care activities.
Thinking differently – the aim was to help the participants see the power of mind and their thoughts.
Finding the purpose in life (spirituality)- Spirituality was explored as a way of helping to think differently and to try & explore connection with the Divine. Attempt to understand the depth in which the caregivers are involved in their spiritual/religious practices and how these practices has influenced on their journey of caregiving.
Training Sessions held in small batches of 10 parents per batch, giving the time and space to the parents to express their journey with time.
These 2 books published under the ENRICH project-In English and Kannada. Also available in Gujarati.
The book is a compilation of 25 stories of unique live in experiences of the caregivers of persons with Intellectual and Developmental Disabilities (IDD). The stories are based on the interviews held with the caregivers and families of persons with IDD. The content of this book is for informational purposes only and is not intended to diagnose, treat, cure, or prevent any conditions or disease.
The book includes caregiver guidance and health practices recommended by international bodies such as UNICEF and WHO. The content of this book is for informational purposes only and is not intended to diagnose, treat, cure, or prevent any conditions or disease. This publication is meant as a source of valuable information for the reader, however, it is not meant as a substitute for direct expert assistance.
MPOWERING families to fulfil their NEEDS and REBUILD families through INFORMATION, and SKILLS of CAREGIVING towards HOLISTIC DEVELOPMENT OF THE FAMILIES.
The project members connected with the parents/caregivers of the children with special needs over telephones to understand that caring for a child with special needs is challenging. The parents not just experience the burden but also go through a series of changes in their everyday life, from understanding what special child means to them, to have financial issue, family un-involvement, less knowledge on the availability of government support, developing health conditions in a very young age and relationship issues due to less understanding between the parents.
This understanding led to addressing the Needs of Special Families in 5 levels:
Both parents accepted the child early as they recognized that they were children with special needs & their biggest support was their family and doctors who taught them all the skills and still hand hold them in their challenges. Even well-planned families there are need of some support as and when new challenges arise.
The families have accepted the special needs child and have found adequate support in the community, government and their families. But the caregivers are worried and tensed about the future of their children after them. This worry hugely impacts the physical & emotional health of the caregiver. There needs to be a shift to focus on the emotional health and understand the needs to take care of self by the caregivers.
The families have understood the condition of their children and accepted them. But the families are left alone to look after the special needs child intentionally or unintentionally. Families where the ‘mother’ has been burdened with the caregiving of the child with special needs while the spouse takes care of the needs of the house; mothers left by the spouses to fend the world alone with a child that needs extra care, attention and love; fathers leaving as being unable to accept that their child will not be leading a regular life; Parents experiencing discrimination in society for having a child with special needs in one way or another making the families exclude themselves from social interactions. The parents developing health issues and the need to address and empower the families.
Families still struggling to make sense of having a child with special needs and accept the child. Some parents still searching for a cure or a miracle. With still trying to figure out how to cope with the new change parents face, financial issue, families & neighbour’s reactions, stigma from society, handling tantrum of the children, sharing responsibilities within themselves, lack of support from the families and finding difficulty in accessing schemes from the government. The parents need to be supported through psychoeducation and training with caregiver skills to have better understanding and acceptance of the child and they also need to be taught self-care.
The red alert level. Trying to understand and bring out a better way to holistically support these families. Every parent needs a different level of support throughout the lifespan of the child with Special Needs.
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