Project Enrich

AIM of Project ENRICH

AIM: The main aim of project ENRICH is to empower families and care-givers of IDD by focusing on initiatives to improve their mental health, quality of life, capability as care-givers, and by providing to enhance their livelihoods.

To achieve this aim, Project Enrich implemented self-care activities and emotional and practical support to caregiver families.

Why Is This Necessary in the Mental Health Sector?

Care-giving for children with Intellectual and Developmental Disabilities involves a lot of time and effort, as the children may need assistance for even basic everyday tasks, like personal hygiene and eating. If they are attending an institution, they may need to be dropped and picked up. Someone has to be there with them at all times of the day. This also reduces the earning ability of parents, as at least one of them will have to be at home all day. This also reduces the avenues for learning and earning ability of parents, as at least one of them will have to be at home all day.

Parents of such children live under constant worry about the future: Who will look after the child after they are gone? How to financially provide for them? Will their child be cared for, safe and loved after them?

These day-to-day challenges and long-term worries put an enormous pressure on the parents. Worldwide studies have shown that such caregivers suffer more from chronic diseases as well as stress, anxiety and depression. They also neglect their own care.

This is not a well-recognized problem and there are very few initiatives to support such families.

Empowering Special Families

It was in this context that Dr. Srinivasa Murthy – Retired Professor of Psychiatry, NIMHANS along with The Association for Mentally Challenged (AMC) Bangalore, conceived Project ENRICH, to understand challenges of caregivers and to come out with a strategic plan to address the issues.

Project Enrich members connected with the parents/caregivers of the children with special needs over telephone to understand their problems and anxieties. The team found that parents face several challenges in their everyday life, from understanding what the special child means to them, to financial issues, family apathy, lack of knowledge on the availability of government support, associated health conditions of the child at a very young age, and relationship issues between the parents.

This led to an understanding that different families are at different levels, viz:

Well accepted and well-adjusted and adequate support. No specific needs to be addressed.

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.

Well accepted and well-adjusted and adequate support. Minor needs to be addressed: Emotional health care/Family plans for future.

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.

Well accepted and well-adjusted but inadequate support. Single parent, multiple children with IDD, Illness of parents, non-involvement of father, financial problems.

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.

Not well accepted and child has many behavioural needs. Specific needs like access to government schemes need to be addressed.

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.

Functioning at a marginal level with many needs calling for urgent attention. The red alert level. Trying to understand and bring out a better way to holistically support these families is critical.

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.

The major learning of ENRICH was that every parent needs a different level of support throughout the lifespan of the child with Special Needs.

Key components of ENRICH

Based on the extensive research with parents and caregivers the major outputs are:

Training for the parents

The training involves helping them understand and practice 10 self-care activities, namely

Thinking Differently – the aim was to help the participants see the power of mind and their thoughts.

Spirituality – Finding purpose in life Exploring spirituality as a way to think differently and connect with the Divine Understanding caregivers’ involvement in spiritual/religious practices How spirituality influences their caregiving journey Enhancing supports and connectedness Sharing of feelings Journaling: Learning to use journaling as a tool during times of distress Relaxation and leisure through breathing exercises, yoga, and meditation Music: Understanding the importance of relaxation and pleasurable activities during stressful situations Exercise: Recognizing the importance of exercising every day for 15-20 minutes Understanding the importance of sleep Importance of proper nutrition Training sessions are held in small batches of 10 parents per batch, providing time and space to express their caregiving journeys.

Enhancing supports-Connectedness and Sharing of feelings
Journaling- Learning to use journaling as a tool at a time of distress
Relaxation & Pleasure-breathing, yoga, meditation
Music- To help understand the importance of relaxation and pleasure activity when faced by any difficulty or thoughts in stressful situations.
Modifying daily activities-Exercise- Understand the importance of practicing exercises every day for 15-20 minutes
Sleep- sleeping for 6-8 hours
Health Insurance
Nutrition- adding fruits and vegetables in good to improve physical wellbeing.

Publications

Self-Empowerment Activities for Emotional Health-Guide for caregivers of persons with Special Needs

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.

Loss, Love & Growth- Stories of Families Caring for a Person with Special Needs:

The book is a compilation of 25 stories of unique lived experiences of the caregivers of persons with Intellectual and Developmental Disabilities (IDD). The stories are based on the interviews held with these caregivers and families .

AMC looks to collaborate with like-minded individuals, organizations and corporates to share the processes, knowhow and products of Project ENRICH across the country.

Skill-training for caregivers

One of the key findings of ENRICH was the financial difficulties and sustainability among caregiver families. Their major anxieties were – how to enhance their earnings to take better care of their children and save for their future, especially with their own poor educational qualifications.

Thus was born the idea of developing a skill center, which would help train family members of AMC children as well as parents of any other special children to earn a livelihood.

The 2600 sq.feet state-of-the-art Matheen Irfan Centre for Skills Development, inaugurated in July 2024 is now fully functional – providing family members (mothers, fathers and siblings) of special children with skill training – leading them towards entrepreneurship or employment.

Courses include tailoring, candle-making, carpentry, gardening and landscaping, computer and financial literacy, etc. A monthly stipend is also provided to those enrolled here

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