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Holiday childcare crisis for parents of disabled children
Friday 21 October 2011
New report shows disabled children are denied access to childcare over the summer holidays
One in three parents of disabled children received no holiday childcare during the summer holidays, according to a survey conducted by disabled children’s charity KIDS, in partnership with Mencap.
The survey of 1,192 parents in England shows that families with disabled children face a lack of appropriate holiday childcare, high childcare costs and even discrimination, as local authorities fail in their duty to provide childcare.
It reveals that two in three families found it ‘difficult’ or ‘very difficult’ to find appropriate childcare for their disabled child this summer. One in 10 were refused a place in childcare provision because of their child's disability. When parents of disabled children do get childcare, it is estimated that 19% face costs of up to £11,700 per year, compared to the national average of £5,028 (according to the Day Care Trust).
The survey also highlights the struggle that parents of disabled children face in maintaining employment. While 19% of those surveyed were able to work full-time while caring for their disabled child, nearly half (41%) stated that they need childcare to be able to work.
As Parents’ Week ends and half-term begins, KIDS and Mencap are calling on local authorities to improve their childcare provision for families with disabled children, who have been among the hardest hit by cuts to local authority budgets. They urge local authorities to make reasonable adjustments, so that all children can access good quality childcare.
“Local authorities have a duty to provide sufficient childcare, which should be a universal service,” said David Congdon, Mencap’s head of campaigns and policy. “Too often, families of disabled children are let down during the holidays, because of the inability of local authorities to provide suitable childcare for a fair price. We hope that the recently announced additional funding for childcare will reach disabled children and their families as a priority.”
Kevin Williams, chief executive of KIDS, said: “Caring for disabled children without the right support can have significant consequences for a whole family, not just a disabled child. The effect can be profound – disabled children lose out on opportunities to socialise with peers, relationships between parents can become strained or even break, and siblings or other family members may take on additional caring responsibilities.”
Read the findings of the survey
Read Mencap’s advice on accessing childcare services
Find out more about KIDS
Comments
I agree with Clare Thomas's well illustrated comment. My daughter is now 30 and in supported living, but I well remember the anxiety of school holidays, the struggle to see that the other children were also able to take advantage of their opportunities, and for general family cohesion. Something always gives, and in our case, it was I who never returned to a career so that someone was always available for the bus, endless meetings and appointments. Assessments for children's direct payments should reflect the actual level of need in order for a family to function as close to "normal" as possible 52 weeks a year. Where appropriate for children with high support needs, the LA should make family placement support available as many families struggle to arrange PA support themselves. The problems are not confined to childhood. At transition, and into adulthood, there are similar problems to fund and find support. My daughter is now settled in her own home with support funded by the LA and ILF. Even now, it only works financially because she spends 4 weeks a year with us. I would suggest that many families are put off giving their children additional opportunities because of the bureaucracy surrounding many schemes, including responsibilities as an employer, or, because of the upset it can cause to an already difficult lifestyle, of having someone else come into the family home in order to help with the support.
Thank you for addressing this seemingly largely ignored issue of childcare for disabled children in school holidays.
I work five days a week (although only 25 hours as I have to be available for when my son, who is currently 11, and has physical disabilities and complex needs/challenging behaviour, gets home from school on the school bus). I have to start planning my summer childcare for my son around March-April time in order to have anything like enough desperately-cobbled-together provision to get me through the 6 - 7 weeks.
An example of how I do this is as follows:
Weeks 1 - 2: KIDS club. (This is by no means a sure thing as social services funding for this services varies from year to year and you are not likely to get the whole 2 weeks even if you put in for it. In 2010 we were allocated days, half of which were then withdrawn a week before the holidays due to lack of funds. Also, although at £12.50 a day (for parents to pay) they are very good value for money, it is still hard to find for many of us.)
Week 3. My son usually goes away for a few days with 1 or 2 of his PA carers. He is 2:1 ratio but I have a carer who not only will take him on alone (not advisable due to his violent episodes) she will also work unpaid. I get 16 hours a week in Direct Payments (which is 8 hours, 2:1) and I have to save some of these hours towards the summer (they are intended for weekend use so I can do a little housework/spend some time with my other children) thus losing our short weekend breathing space in the run up to the summer, However without my PA working unpaid I would not have this week covered.
Week 4: I get a week of annual leave and plan fun things for my son. "Dun activities" are becoming harder and harder for both me and his carers as he is becoming more violent with a tendency to attack the public. He is also hyper active and a wheelchair user (for any distance) and so this takes careful planning.
Week 5: I use 4 - 5 days of my allocated 24 nights a year at Respite Centre. However I can only request dates; it is never a sure thing that I will get them on the dates I need.
Week 6: Usually a combination of more of my annual leave and his father, my ex husband, having him during my working hours (he does not have him overnight.)
I get 28 days a year annual leave from which I must also book bank holidays. I can't take too much in the summer as I have Easter, Christmas and half terms to consider as well, all of which present similar problems to summer and have to be planned in advance, sometimes with my main PA giving me "free hours". No other PA would do this; I would be in trouble without this lady. Christmas I absolutely DREAD, those days stuck indoors with a violent, hyperactive child, the weather cold and nowhere open to take him. Family do not visit anymore (their Christmas would be ruined by the violence) and I have been unable to take my son into the homes of others for some years now so we get no invitations. if we got any, I could not accept. Staying anywhere overnight is out; he can only sleep in his own room (or the respite centre) due to his non-sleeping and security issues (he is an "escapologist". The joy went out of Christmas years ago and I try to arrange little snatches of time away from home for the other children (obviously without me; I am home with my disabled son ) so they get a bit of the Christmas spirit elsewhere.
This is my experience of schools holidays. It is hopeless and exhausting and be the end of every summer break (six to seven weeks is a VERY LONG TIME), relationships in the family are fraught; everyone is at breaking point. It gets worse each year. My marriage in fact, broke down at the end of the summer holidays, a few years ago. Since that time (before which my husband and I used to work as a "team", albeit an exhausted one) I have had to somehow juggle alone with help where I can get it from other people who are not obliged to put themselves in the "line of fire" to help me get from week to week.
You might think.. "Why work? It only gives you childcare dilemmas.. and certainly you must not be much better off, due to loss of working tax credits etc, carers allowance etc?"
Here's why. No I am no better of financially at all. But for the first 9 years of my live, I lived and breathed my son.. (I would say slept but we all went 7 straight years without sleeping through the night until we were granted an overnight respite package. Obviously we're still exhuasted and sleep deprived). I didn't see how I could work. All the appointments (several a week, many weeks). All the therapies, the special diet, the needing to be around before and after school. Eventually, following the breakdown of my marriage when I found I no longer had any identity but "Alex's mum", I found the ideal job as a secretary in a unit for disabled young adults. The job gave me another identify, a reason to get up in the morning other than just to be a brutalised unpaid carer of my child, a child who I adore but who shows he loves for me by physically fighting me at every opportunity. I work for wonderful employers who bend my hours around my son's appointments, allow me "carer's days" when. inevitably, my annual leave is all gone, and who tell me what I need to know, the latest news in the world of disability, much sooner that I would have known otherwise. They even allowed my PAs (and me!) to do Physical Intervention training, when I found they were having to use physical restraint (sometimes it is unavoidable with Alex) in an unauthorised manner because they weren't trained and social services said they could not help with either funding or provision. The only knowledge I have of Movement and Handling training - me who lifts and manouveres an unco-operative 5 stone and growing heavier child, every day of my life - came from my employers. It is apparently not considered necessary for parents and carers of disabled people to have this training. (I ran a Downing Street Petition and got hundreds of signatures in support of this issue. Downing Street's response? "It is the responsibility of individual health authorities...").
I may have digressed from the main issue somewhat, but, in a nut shell, my job preserves a little sanity in my otherwise completely insane world. It gives me a little self respect and makes me feel valuable because in my eyes, carers are quite unfairly, the most necessary but undervalued and yes, underpaid, workers in the country. And yes, childcare provision for parents of disabled children during holiday times IS an issue. a HUGE one. Some of us are desperate and screaming for help but there is noone, it seems to hear our voices.