The chief executive of special needs charity Kisharon has voiced concern that many of the growing number of severely disabled children in the Jewish community are not receiving specialised help early enough.
Beverly Jacobson said that with advances in modern medicine, "a premature baby or a child with a complex brain injury has a much higher chance of surviving, which is brilliant. But we need more resources for children with special needs."
Kisharon provides education and care for both children and adults - from a nursery and Kisharon day school to supported living, an adult care home and a day centre.
She believes that many families consider Kisharon a "last resort", meaning that in some instances, children with difficulties like severe autism are left to struggle in mainstream schools.
"There is an impetus to get your child into a normal school," she acknowledged. "We get a lot of children coming here aged eight or nine with battered egos because they've been left behind.
"If parents are brave enough to send their children here when they are very young, we give them solid foundations and we can advise on whatever we believe is best for the child. Many children can now go to mainstream schools one or two days a week."
Last year, Kisharon's budget was just over £4 million, with more than half coming from government and local authority funding, leaving the charity to raise £1.4 million from the community.
Now Kisharon is expanding, investing in helping severely disabled pupils which it had previously found difficult to accommodate at the day school in Golders Green. A new unit will cater exclusively for children with multiple and severe disabilities.
The charity's Rosh Hashanah appeal is focused on the specialist unit with a £100,000 target. And with anticipated cuts in government support of up to 40 per cent, the charity must rely more than ever on donations. "Even though people are tightening their belts, they still make room for Kisharon. But it's not easy and we have to fight for every penny."
In the new unit, children in wheelchairs will be able to move from a standing position with the aid of ceiling hoists. The emphasis will be on sensory learning - touching, smelling and feeling - but also on practical therapy, for example, communications skills.
Mrs Jacobson believes the strict Orthodox ethos of the school forges an important sense of identity.
"We've always been seen as a Charedi organisation. We do run a very Orthodox environment. But we are very open to having anyone who needs our service.
"And we also find that giving people strict rules to live by, like kashrut, creates a much needed structure in their lives. Judaism gives people a strong sense of identity and they need help to develop that, even if they don't come from an Orthodox background.
"In a special needs state school, almost everything tends to be linked to the Christian calendar. That can be very confusing for a Jewish special needs child."
Some parents balk at the idea that their child may need Kisharon services for the rest of their lives - the oldest service user is 64. But others find it comforting.
However, adult services could face the worst of the cuts. "We need to take out every overhead we can."
As part of its lifelong education policy, the charity runs a bike shop and a print shop to give users meaningful employment. "We have also asked Jewish businesses for repetitive, easy jobs which can be done in an hour or two. There's been a very positive and generous response. It starts off as a bit of chesed, but every time I visit a business, they tell me what a positive difference someone from Kisharon has made to their workplace."
‘JUDAISM IS SO IMPORTANT’ TO A DISABLED YOUNG PERSON
VMichele Michaelson, a special educational needs solicitor, lives with her husband Alan in Swiss Cottage. One of her 22-year-old twin daughters, Joanne, has profound autism and attended Kisharon. She now lives in supported housing with friends and attends the Kisharon day centre.
“I had never heard anything about autism before,” Mrs Michaelson recalls. “It has now become quite trendy with films made about it. But nothing when Joanne was diagnosed. I just thought I had a very strange daughter.”
Joanne was three when diagnosed and a friend suggested Mrs Michaelson should contact Kisharon. “It was quite a shock when I took her there. Your instinctive reaction is to think that your child is nothing like the other disabled children.
“But very quickly I stopped seeing the disabilities of the others and seeing what wonderful children they were.”
A Jewish education was very important to the Michaelsons. “The local education authority were very unsympathetic about this. But the Judaism was so important; it gives you a sense of awe and an identity and a belief system.”
Joanne now attends the Kisharon day centre and Mrs Michaelson says her daughter’s life has been transformed: “She has friends and they go shopping together. She learns to cook. She learns more every day and there are no barriers. She isn’t at the stage where she can work but it’s never off the agenda.”
A commercial lawyer for most of her career, Mrs Michaelson said that she changed her speciality “in Joanne’s honour. I want to help parents fight for the rights of their disabled children. They need so much support to get everything they need.”
"When you first get the diagnosis it feels like the world is ending"
Six-year-old Elias is the eldest of the three children of Emma and Adam Castleton from Stanmore. He was born with the extremely rare Mowat-Wilson syndrome and cannot walk or speak.
Mrs Castleton says that at birth, “Elias was our perfect little boy. And the more it became apparent that he wasn’t, the more you try and explain it to yourself because you don’t want it to be the reality.”
The diagnosis meant emotional and physical upheaval for the family. They moved from Hammersmith to Stanmore to be close to the Jewish community and to Kisharon’s Tuffkid nursery.
“It’s the most amazing, loving place. And there’s therapy for him all the time — they help him to be more agile. When we were looking round nurseries for Pearl [their middle child], I couldn’t find anywhere better, so I sent her there too.” In September Elias will go into the new unit for children with multiple and serious disabilities.
Although not the “typical Kisharon family”, Mrs Castleton had no qualms about sending her son to a strictly Orthodox school. “I’ve never felt in any way looked down on. And although Elias can’t talk, whenever he hears Hebrew prayers and songs he just loves it. He is a very happy, smiley, sociable little boy.
“When you first get the diagnosis, it feels like the world is ending. But now I would never swap him. If someone said I could have Elias without the disabilities I would say no immediately. That’s part of him.”