Empowering Families with Disabled children

The pandemic Covid-19 has wreaked havoc in the lives of many in the past two years. Families of children with special needs have had to face multiple challenges in these trying times.

In the first and second wave of the pandemic, many children lost their parents leaving the child emotionally and financially unprepared. We at Nayi Disha witnessed these children struggling to settle in with their new caregivers.

A special child is usually habituated to a set pattern and has specific needs often only known to their primary caregiver. Not being aware of this information makes it difficult to provide adequate care due to insufficient knowledge about the child’s history or without any roadmap of how the parents would have liked their child to be raised.

More often, lack of financial planning has caused further distress for children with special needs in absence of their parents. While financial planning for a child is crucial to safeguard their future, we also realise the difficulties a parent might have in accessing this information in a simple and easy format.

We also noticed a lack of such resources available in spaces beyond tier 1 cities of India. The Future Readiness Program is an initiative designed to address all these issues.

It is a program to prepare parents and caregivers of children with disabilities for emergency situations. The program delivers bite-sized information over WhatsApp for a period of 30-days. It is a completely free of cost program and provides information on preparing for emergency situations.

Caregivers can subscribe to this program after sending ‘hello’ on the Nayi Disha WhatsApp Helpline number (844-844-8996). To register, the program gathers some basic information about the caregiver and will start sending regular information to its subscribers for a period of one month.

The modules within the program include information on various topics such as covid awareness, vaccination, financial planning, necessary documentation, self-care, etc. It also includes detailed information on processes of making a UDID card, Disability Certificate, a Will, establishing a Trust and appointing a Legal Guardian for the child.

Steps on writing a Letter of Intent is also shared through this information series which helps the caregiver understand the parent’s vision for their child’s future. The messages shared daily over WhatsApp are also linked to articles and podcasts on the Nayi Disha website. This provides further information on the subject matter. It also has interactive sections that helps parents in deciding the kind of information they need and keep track of their progress in being future ready via the Chekometer.

The program also provides the Caregivers Emergency Guide which is an assembly of charts containing specifics of prepared documents, financial documents, medical records, habits, practices of the child, etc. to help smooth transition of responsibilities to next caregiver in-line.

The Future Readiness Program shares information in easy-to-understand language. Due to a dearth of resource and access to information largely existing in the country, the program tries to reach as many parents as possible. Hence, it has been designed in both Hindi and English.

It helps parents in being prepared for any kind of emergency situations in the future. In addition, it also shares information on caregiving and on self-care for the parents. This program is supported by State Bank of India - Mutual Funds and together we hope to reach out to as many parents and families of children with special needs.

Nayi Disha is a not-for-profit organisation dedicated to serve and support children with special needs. If you have questions about Autism, Down Syndrome, ADHD, or other intellectual disabilities, or have concerns about developmental delays in a child, the Nayi Disha team is here to help.

For any questions or queries, please contact our toll-free helpline at 844-844-8996. You can either Call or send us a message on WhatsApp. Our counsellors speak different languages including English, Hindi, Marathi, Malayalam, Gujarati, Telugu and Bengali.

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