Strictly Orthodox parents of severely disabled children are struggling desperately to find the means to
cope, as they feel abandoned by local authorities that fail to meet their religious needs.
A JCinvestigation today reveals that hundreds of Charedi families are having to provide round-the-clock care to their children - but with little or no outside support. The parents' religious needs mean that they are unable to use existing council and charity "respite" care.
This would allow them to recuperate while a child is being looked after for short periods by foster parents or care workers - a lifesaver for many parents in similar situations in the wider community. But a lack of available strictly Orthodox foster parents and care facilities leaves these parents feeling unable to take up
the services currently on offer.
Their religious practice, for instance, prevents parents from leaving their child in a non-kosher home, or in a setting where boys and girls are mixed. They say local authorities are refusing to acknowledge their religious needs, and that there are simply too few strictly Orthodox foster carers.
This is causing some Charedi parents to reach breaking point. Charedi parents with large families
face particular challenges when a severely disabled child is born. But those in affected families claim that
their difficulties are exacerbated by a lack of local authority understanding and assistance.
Some parents are in urgent need of help. Last month, the JC was present at an annual get-together for 85 Charedi mothers from across the country with disabled children. During the threeday respite break in Bournemouth, they opened up in heart-rending detail about the hardships they faced. Almost all talked to the JC on the condition of anonymity, fearing a backlash from their local council for making their concerns public.
One woman spoke about her seven year-old son, the youngest of eight children, with hypertonia (abnormal
increase in muscle tension) and global developmental delay (problems in all areas of development). "It is very stressful, not just for me but for my whole family," she confided. "My son needs constant care and sleeps in the same bedroom as my husband and I. "But our council said we don't meet the criteria for help, without explaining why." The mother and her husband have to pay for care at around £12 an hour.
Another woman recounted approaching Hackney Social Services for care with the 14th of her 15 children,
who has Down's syndrome. She wasalso told her son did not meet the assistance criteria, with no further
explanation. "You have to fight to get any help and you don't always get it," the woman said. "We feel cheap, like we're going to social services with a begging bowl. You're made to feel guilty for asking for help and it's a constant struggle to prove we need it."
Echoing her comments, the mother of a 25-year-old boy with Asperger's syndrome confided: "You have to lower yourself on to your bended knee to get anything." Numerically, the strictly Orthodox community may face greater incidence of child disability than the wider population.
"There is a smaller gene pool within the Charedi community so there will be some instances of genetic illnesses," explains Chaya Spitz, headof services at Interlink, an umbrella organisation for UK Charedi groups based in Stamford Hill, North London. "If the incidence of child disability is higher, possibly the biggest reason may be that people would generally not test for disability. And even if they found out there was a disability, abortion would be extremely rare."
Another factor may be the mother's age at childbirth, having already produced a large number of children.
Bucking the general trend within British Jewry, the Charedi community is growing rapidly, with the average family having 5.9 children, nearly 2.5 times the general average for England and Wales.
Some have as many as 15 children. "There are more disabled children now because medical advances allow people to live who a few years ago Strictly Orthodox parents whose children have heart-rending problems are desperate for respite care - yet say their needs are being ignored. wouldn't have survived - and because of a growing population," Mrs Spitz said.
In urgent need of outside support, many parents have voiced disappointment with the response of their local authorities. In Touch/Kids United, an organisation for mothers of disabled children, is aware of around 330 cases in Hackney, Haringey, Barnet, Manchester and Gateshead.
But co-founder Tzirele Gluck admits: "There must be others scattered around the country that we don't know about." Charedi families face additional problems, such as a dearth of suitable foster care and respite placements.
According to Mrs Spitz: "People from the religious community have a big problem because they can't
send their children to a non-Jewish home." Sue Lachman, the mother of two Down's syndrome children, helps families challenge allegedly unfair care offers and educational statementing. She claims that some local-council employees display discriminatory attitudes towards Charedi parents. "They ask why our husbands are studying and not helping us with our children. Some women have told me social workers have suggested they stop having so many children. They are very rude with it."
All the women interviewed by the JC expressed unwavering devotion to their children. But many were on the
brink of despair, desperately struggling to cope. "We just want the best for our children," said one tearful mother. "It's hard enough that we have these [disabled] children without social services making things harder. Won't someone help us?" Local authorities defended their response to the Charedi parents' plight.
A Hackney Council spokesman highlighted meetings between senior social care officers and Charedi representatives "to facilitate improved mutual understanding and develop ideas about how to improve services, such as recruitment of more fostering, adoptive and respite-care placements."
A Haringey Council spokeswoman promised that "specific allegations" would be investigated: "We do, in fact, provide respite services to a number of Orthodox Jewish families." Repicrocal arrangements were in place with neighbouring boroughs to enable "contact with Orthodox Jewish foster families if necessary.
"We are always keen to recruit more foster families and would welcome applicants from the Jewish Orthodox community." In Barnet, the council said it worked "very closely with Norwood, who provide on our behalf both respite and longer-term foster care for those children who we have assessed as needing it."
Alison Walton, director for children and young people at Gateshead Council, said its aim was "to find the best possible provisions for children and families within Gateshead. We work closely with individual families to meet their cultural needs where this is possible." Eleni Ioannides, executive director of children's services and former director of social services for Bury, said: "We know we could never do
enough. We want our services to be available through specialist organisations such as the Manchester Jewish Federation."