Very inclusive support for newborns and their families
The Rooney Family Foundation awarded a grant of £3,000 to enable Very Inclusive Play to establish a new baby sensory group to support families with newborns.
Very Inclusive Play (VIP) Club was informally established in 2017 by an Edinburgh based family who lost access to a key service for young people with additional needs due to local funding cuts. There was a huge void left in the lives of the children and families who had depended and thrived upon a structured learning environment.
VIP was formed to offer children with a range of needs, a safe space to learn, play and grow. The children have a range of additional needs, including Autism, Downs Syndrome, visual and hearing loss and complex behavioural issues. VIP offers a space for parents to share their experiences, thereby creating an additional support network for families.
The Project
In October 2024, The Rooney Family Foundation awarded a grant of £3,000 to enable VIP to establish a new baby sensory group to support families with newborns as young as 3 weeks old, to address the lack of services for this age group. The group is exclusively for babies, ensuring a safe, nurturing, environment without older toddlers. It aims to provide a supportive space where parents can bond with their babies, especially those navigating early diagnoses, in a non-judgmental setting. Parents can connect with others in similar situations for mutual support. The 1-hour sessions focus on stimulating the babies' visual, auditory, olfactory, tactile, vestibular, and proprioceptive systems, aiding early brain development. The grant enabled VIP to purchase specific resources for the sensory room including storytelling materials, musical instruments, toys, and natural sensory.
The Impact
The new baby sensory group has seven children, fourteen parents, eight grandparents, four Support Workers and two siblings attending weekly, and it now has all the new equipment needed to fully resource this group. Although fewer people than anticipated, the families that come along are often excluded from other mainstream groups because of their child’s serious health issues, the dangers of infection in larger groups, and complex and life limiting conditions, and some families have to attend with nurses or support workers. The group also needs a higher staff ratio to ensure each child is given individual attention.
A grandfather, after one session, said he "felt enlightened and now had some understanding of how to engage and communicate with his grandson". This statement clearly demonstrates the significant impact of the work.
The group supports children aged between 6 months and 3 years and includes children with a wide range of needs and diagnoses. These include Down syndrome, cerebral palsy and CHARGE syndrome, a rare genetic condition affecting around 1 in 15,000 children and associated with a life expectancy of up to five years. A child with spondyloepimetaphyseal dysplasia, an extremely rare genetic condition affecting around 1 in a million children also attends.
One child has spent his first two years entirely in hospital, with no access to groups, community activities or contact with other children. He now attends weekly sessions, where he can interact with his peers for the first time. He is supported by a parent and a member of the NHS staff team, enabling him and his family to take part, enjoy the experience and feel more connected to others.
The VIP club recently presented to the NHS Occupational Therpaist teams across the city and now have new families joining the VIP community with more complex needs. They were also able to share learning with all of the support workers and nurses who come along to accompany families. This learning will extend their reach ensuring more families are aware of this new group.
This new work with younger children and babies has helped improve the mental health and well being of families with children with complex and additional needs, and their siblings, through reducing isolation and giving them tools to use at home to encourage and stimulate their child's early learning. The Groups that VIP run provide a circle of support around a newly diagnosed family, who may be feeling lost and alone. Espeically with the loss of services in Edinburgh and the Lothians for under 6's with additional needs, it is very frustrating for families to get a diagnosis and then be told there is no help available until their child goes to school.
"My son has developed in all possible ways by attending the VIP Club. There have been improvements in eye tracking and coordination and social skills; not just the ability to buy to want to directly interact with other children and adults. His speech has certainly developed as he has been given the time and space to respond verbally. His non-verbal communication has also developed due to an intense interest shown in all forms of communication. His behaviour and coping strategies have developed over time due to the consistent strategies used and the understanding given."
Parents share experiences and provide practical advice about other services, offering peer support that helps families cope with a new diagnosis and feel less isolated. Many families also experience a sudden loss of income when one or both parents are unable to work due to their child’s complex needs, with single parents often unable to work at all. While some benefits may be available, the reduction in income can be significant and increase stress and vulnerability. Additional support includes welfare rights advice and access to shared meals, such as Soup Sundays and Tuesday family meals, giving families the opportunity to spend time together outside the home, which is often difficult due to their child’s needs.
VIP intends to continue applying for funding to sustain the project, as there is a long waiting list of families. Referrals come directly from families through leaflets in GP clinics and waiting rooms, as well as from health and social work professionals who are familiar with the service or have invited the organisation to present on how it supports young families to thrive.
Lesley Clemenson, Parent Volunteer Fundraiser says
"Your funding has directly ensured our essential service continues to support babies with additional support needs and their families by contributing to the costs associated with running a group for very young children who need different resources and equipment than toddlers. We have been able to support 7 vulnerable families within your funding period. This includes not only mums and dads but also several grandparents. We have also had 1-1 workers from nurseries who have been able to come and observe and learn the strategies and skills to support the babies and young in the nursery settings. The legacy of your funding has meant that we have been able to start a new group of families and meet the needs of an extremely disadvantaged and underprivileged group of families of children, many of who have life limiting conditions.