Jack McNiffe with his companion dog
Kildare parents of children with special needs who have been full-time carers since the lockdown are deeply concerned that the Government’s two weeks notice to schools about beginning July Provision is just adequate.
July Provision, which takes place every year, provides about 40 hours of care, over two weeks, in the home or at school, and will this year include many more children with complex or moderate needs.
Up until now, the Department funded the scheme only for children with autism and spectrum disorders. This year, the scheme will also include others with severe or moderate disabilities, including those with Down Syndrome.
However, with just two weeks notice, a significant increase in children to provide for, and no specific details, on how it will be implemented, concerns are mounting that every child will not get a place this summer.
Chris Hannon, is mother of Mary (14), who has Kabuki Syndrome, requiring round the clock care. Her daughter is a student at St Raphael’s, Celbridge. She is peg fed and requires nappy changing. Her mother has been her primary carer since the lockdown.
Ms Hannon had to ask her sister for assistance during the lockdown, as she was getting ‘burned out’. Since last week, the HSE has given her a her one-day-a-week visit. She said: “I would absolutely love if Mary got the July Provision, but it is all up in the air.”
Going from having Mary attend St Raphael’s from 9am to 3pm, on a full-time basis, to being left with no help when the lockdown hit, left Ms Hannon ‘burned out.’
She said: “For the first eight to nine weeks, I had no help. I was getting burned out, so I had to ring my sister for help.”
From last week, she has also received one day a week assistance in the home from the HSE.
Ms Hannon said: “We are in limbo, I was getting down about it. We did not go outside the door, except bringing her somewhere in the car, and just sitting there. It is not natural. I would love to know that there is help on the way.”
Aisling McNiffe has been the primary carer for her son Jack at their home in Ardclough, Straffan. For three months, it was her, Jack and her teenage daughter Molly, at home.
Jack has Down Syndrome, is in a wheelchair and has a rare auto-inflammatory disease. Because Jack gets acute pneumonia every year, and last winter had rhino virus and para virus, along with being in Intensive Care in February to treat pneumonia, she is nervous about him catching the coronavirus. She wants to keep him cocooning for longer, so won’t be seeking July provision.
However, she feels that parents throughout Kildare and Ireland, left without any assistance, during the lockdown especially, should be given an increase in Carers Allowance.
She said: “The hardest part is the lack of support, loneliness is a huge factor”
Ms McNiffe says she knows of a couple in their eighties who are caring for their 51-year-old son who has special needs.
She said: “There are no plans being announced for adults over 18 with special needs, it seems like they have no rights. I wish that the Government would recognise carers and stop putting us last. I don’t think that the Carers Allowance should be means tested.”
Many parents of children with special needs are now dreading the winter already as their children’s medical appointments have been put on hold due to the coronavirus. There are fears that they will not get their necessary treatments on time. Some children with special needs are now waiting six to eight months for vital life saving surgery, that is, essentially, a non-Covid 19 medical need.
Mark O’Connor, of Inclusion Ireland, says that occupational therapists, physiotherapists and speech therapists being redeployed to do Covid 19 testing is leaving many waiting for services.
He says that, long-term, the system of online learning for children with special needs is not viable and during the lockdown, in a survey, 70% reportd that online learning is not suitable for people with special needs.
Regarding the July Provision announcement, he anticipates that it will be a ‘logistical nightmare’ for schools.
He said: “It is all down to the wire. People want certainty, we urge all families to apply online.”
Last year the July Provision scheme catered for 10,500 students. Now opening it up to children with needs other than autism or Aspergers spectrum, there will be places for 20,000 children nationwide.
July Provision is always a controversial issue with long waiting lists and difficulty accessing teachers, but this year with double the number of students, disability campaigners are not too confident that it will be delivered on time and for parents who badly need the break, say Inclusion Ireland.
Anyone who is interested is urged to go to gov.ie and apply online as quickly as possible. There has been no specific mention of social distancing in the guidelines, says Inclusion Ireland.