Breda O’Brien: State failing children with Down syndrome
Government kicks legs out from under parents working on early-intervention scheme
Early intervention is vital for children with special needs. With funding cuts, children with Down syndrome fall further and further behind with lifelong repercussions for levels of independence.
Irish people are generally warm and open to people with disabilities. Our State? Not so much.
Recently, I was contacted by the Louth/Meath branch of Down Syndrome Ireland about a mean-spirited, short-sighted 60 per cent cut in funding to a vital, innovative, early-intervention programme that parents have run for their children since 1982.
The programme costs €75,000 a year for more than 50 children. Some €50,000 of that is already raised by parents who do everything from bag-packing in supermarkets to running marathons to fund it. In January, the Health Service Executive (HSE) cut the grant, funded by lottery money, from €25,000 to €10,000.
There is a very real danger that the parents will have to discontinue or cut back on this service. As they so often do, the HSE is saving a few cent that will result in spending thousands later on. Early intervention is absolutely vital for children with special needs.
Without it, children with Down syndrome fall further and further behind with lifelong repercussions for levels of independence.
The HSE is saving a few cent that will result in spending thousands later on. Early intervention is absolutely vital for children with special needs
There are no administrative or organisational costs for this programme because the parents do all of it voluntarily.
The branch employs early-intervention specialists who build up a relationship with a child and the family from the age of one. Visits happen twice a month during the academic year until the child goes to school, usually around age six.
The parents who organise all of this should be getting medals. Instead, they are getting grief.
Heather O’Connor has been one of the early-intervention specialists for the last 10 years. For her, supporting the parents is central to her work, because it is the parents who ultimately enable children with Down syndrome to achieve their full potential.
She currently has about 15 children she visits. She focuses on developing speech and language, and fine motor and cognitive skills.
The parents who organise all of this should be getting medals. Instead, they are getting grief
She says she has a smile on her face every day going to work because it is so satisfying to see real progress.
Speech and language and fine motor skills all sound very abstract, but it means that a toddler with Down syndrome can socialise better with peers in a playschool and can also open a pencil case, identify a colour of crayon and use it, all by herself, instead of waiting for someone’s help.
When they go to primary school, many of them are able to keep up with their peers with minimal assistance.
O’Connor did not tell me this further piece of information, but Susan Sludds did. Sludds is the mother of three-year-old Sarah, one of the children O’Connor visits.
Sarah developed acute myeloid leukaemia aged one, and O’Connor did everything possible to facilitate the family, working around hospital stays and appointments. She even visited Sarah twice in Our Lady’s Children’s Hospital, Crumlin.
Several other children in the Louth/Meath branch were also battling leukaemia at the time and O’Connor was equally good to them. (Children with Down syndrome are prone to acute myeloid leukaemia but the survival rates are excellent and adults with Down syndrome are less prone to cancer than the general population.)
Leukaemia is a very isolating illness because the treatment means that the child’s immunity is severely compromised and so they cannot socialise in the same way. But Sarah is hitting her developmental goals despite months and months of treatment.
Prospering under programme
Sludds raves about the difference the early-intervention programme makes to her little three-year-old daughter. She firmly believes that it is why, despite illness, Sarah has done so well in her local playschool.
Sarah is able to take part in circle time, fetching her own book (and occasionally a book for an absent-minded playmate who does not have Down syndrome), is able to paint and to focus well and listen.
Children with special needs in Co Meath receive State-provided early-intervention services from Enable Ireland until age six.
Enable Ireland was praised for its efforts but there are long waiting lists, especially for vital speech therapy.
Sludds told me that people believe she is lucky to live in her area in Meath because the services there are better for people with intellectual disability. Sludds even knows of two families who moved to her area for that reason. It is deeply worrying that a service with long waiting lists and severe shortages is seen as better.
The cut to the parent-organised early-intervention programme is not the only such cut. There used to be an overage exemption for the Early Childhood Care and Education scheme because children with Down syndrome do better if they go later to school and therefore needed to avail of the ECCE scheme for longer.
Minister for Children Katherine Zappone cut this overage exemption without consultation but has instituted a review due to intensive lobbying by parents and Down Syndrome Ireland.
The ECCE scheme restoration is another needless battle, sapping parents’ energy. If this other cut to the Louth/Meath early intervention stands, some 50 children will be even more dependent on already-rationed and scarce State-provided services.
The State should provide this fortnightly home-based service to every child with special needs: instead it is kicking the legs out from parents who have struggled to help their children.