Do you have thoughts about childcare for children with additional needs?

[RowanMumsnet]

Hello

It's just been announced that there's going to be a parliamentary inquiry into childcare for disabled children.

It's being organised by long-standing friends of Mumsnet (and supporters of This Is My Child) Every Disabled Child Matters and Contact A Family, together with the Family and Childcare Trust, and Working Families. The inquiry will be co-chaired by Robert Buckland MP, who is another This Is My Child supporter.

We know that lots of MNers who have disabled children say that they struggle to find affordable, appropriate childcare - and that this can sometimes mean that parents aren't able to return to paid work, or to work that is commensurate with their qualifications and experience. Obviously this is a problem with childcare for all children, but it seems to be particularly acute for parents of children with additional needs. According to the inquiry's consultation document (downloadable Word PDF), 66% of parents paid more for childcare for a disabled child than their non-disabled child; families report paying up to £20 per hour for childcare for a disabled child; only 39% of parents of disabled children agreed that providers could cater for their child’s condition in their area; and only 28% of local authorities in England say they have enough childcare for disabled children.

We'd like to submit an official Mumsnet response to the Inquiry based on your thoughts - so if you can let us know what you think about any or all of the following questions, please do so on this thread (or email us at [email protected] if you'd prefer to keep it anonymous). (If you'd rather - or in addition - submit your own personal response, there's an online survey you can take here.)

CONSULTATION QUESTIONS (please see the consultation document (downloadable Word PDF) for further context and background):

1. Why is childcare for a disabled child often more expensive and what can be done to reduce the costs of providing childcare for this group of children?

1. To what extent does the current system of support with childcare costs help parents with disabled children to meet the additional costs of childcare?

1. If there was to be financial support to meet the additional costs of providing childcare for disabled children, how could this be most effectively delivered? What do you think are the pros and cons of offering extra support either directly to parents or the providers, or via local authorities?

1. What are the barriers to extending access to suitable childcare for disabled children and what can be done to address them?

Do you agree that families with disabled children and young people experience fewer early years and childcare options compared to other families? If so, why is this and what can be done to address this? - Are the reasons the same/different for older disabled children (eg 14 plus) - Are they the same/different for disabled children from BME communities? - Are they the same/different for disabled children living in rural areas - Are they the same/ different for children with complex health/medical needs?

1. What are the different challenges in extending access for disabled children for:

• pre-school childcare providers; • wraparound school or holiday childcare providers; • providers of childcare for older children;and • others, i.e. children’s centres?

1. What is the role the following bodies or organisations should play in improving the availability of childcare for disabled children and what is needed to enable them to fulfil this role?

• National and devolved government • Local authorities and their health partners • Early years providers, including childminders • Schools (mainstream and special)

1. What can be done to ensure that inclusive childcare becomes the norm for disabled children going into the future?

1. What are the reasons childcare offered for disabled children can be lacking in quality and what do you think needs to be done to improve this?

1. Are there particular groups of disabled children who are better or less well served by current childcare provision?

10. To what extent is the childcare workforce equipped to provide high quality care for disabled children? What role do the following people/ organisations have in improving the standard of childcare for disabled children?
    • National and devolved government
    • Local authorities
    • Early years providers, including childminders and individual staff
    • Schools
    • Ofsted

11. What more do you think needs to be done to improve the information provision to ensure that families are aware of the provision available in their area?

If we could have your thoughts by Monday June 2 (to give us a week to collate responses) that would be great.

Thank you,
MNHQ

I haven't been able to access any childcare other than 'mainstream' because I don't know of any ASD-specific childminder and 'mainstream' childcare hasn't been an option for many years for my ASD ds. I tried using informal paid childcare in my home but as this wasn't Ofsted registered I wasn't able to claim Childcare Tax Credits and nor was it accounted for when being means-tested for in-work benefits such as housing and council tax benefits. Important and necessary as I am also an LP. Unfortunately I was worse off than before, although the childminder was better off, and I went back to the 'hostage to the home' scenario where I work self-employed in the home - for a pittance with no social interaction. If the neighbours even notice I exist they probably think I'm watching Jeremy Kyle eating toffees.

Most professionals working with disabled children do not expect parents to work. I still get get tutted at for working when DS was nursery age, even now I've been out of the workforce for 3 years anytime I'm asked to give his history. I don't remember any of DS's peers parents being expected to be available at the drop of a hat if they couldn't be immediately available to do an unscheduled school pick up in the middle of the day, nor were they expected to attend constant meetings etc.

There is a massive cultural resistance the parents of disabled children working that permeates right through health, education and social care. I get tutted at for even suggesting the very idea.

Also childcare would cause problems because of the volume of medical/school appointments when a parent generally has to attend as they have the knowledge necessary to work with the education/health professional. Quite often I'll turn up to appointments and give information the professional has not been made aware of. Multiply these appointments x 3 and that's almost a full time job in itself.

'Quite often I'll turn up to appointments and give information the professional has not been made aware of.'

I tried to get round this by making certain the professional had written information. I have never met a professional yet who has read what I have written before I attended the appointment, and usually expect you to verbally explain. What a waste of face-to-face time.

It is also pretty impossible to be taken seriously when you explain how something might need to happen in order to maximise compliance in the child. People are resistant to changing the way they work. If I say that my son will become anxious at the introduction of a 'playworker' to supposedly prepare him for surgery, keep the hell away. Don't start an argument about it in front of him. He was happy enough until you showed up.

It really is. Plus bear in mind that some care options (ie nurseries) would be unable to rake the child to an appointment easily, nor would childminders without making arrangements for their other charges which would work out being impractical.

bochead said "I don't remember any of DS's peers parents being expected to be available at the drop of a hat if they couldn't be immediately available to do an unscheduled school pick up in the middle of the day"

Would that be illegal / stealth exclusions that you are referring to? Happen far too often. Still no visible deterent for school heads to prevent this. Another very genuine obstacle that prevents many parents from working outside of the home.

Stealth exclusions, random need to chats at 11 am about entirely preventable incidents, despite already being available at pick up/drop off /regular weekly meeting/ having to go on EVERY single school trip or random event or DS couldn't go/take part. This is in addition to all the "review meetings" and assessments where the same information is regurgitated and ignored ad nauseum.

The one time in 5 years I said "no" to attending a trip because I had a prior professional appointment booked about DS, I ended being accused of "failing to engage" by 3 uninvited professionals in my living room. That "failing to engage" black mark stays on my permanent parenting record btw to be used by any other professional who thinks it outrageous that I can't always drop everything at the drop of a hat.

The fact that I was a single parent, 3 years out of work and starting to get really worried about the very real possibility of repossession just didn't register by those who expect you to constantly be at their beck and call. I now home school. How I spend my day is now back within my control, which gives me the chance to finally retrain into a role I can do part time from home. I have met several parents in similar situations.

Many disabled children need a high level of support that does not easily fit in to group care settings, even if there was money to pay for a suitably qualified and experienced carer or two. The care needs continue or change only slowly into older age groups. Just asking existing settings to accept additional needs children is only the answer for a few children. Individualised extra funding would be needed for almost all children, and still not be suitable for many. The setting has to be right. My sociable son was able to attend a very small friendly afterschool club on their quietest overstaffed day in his younger years but would not have been able to manage at a bigger busier afterschool setting with the usual staff ratios and expectations. The staff were right and the building was safe for him. It may not have suited another child with different needs.

I have just about managed to work a little (very part time) but as my child has got older and the care needs almost as high it is harder and harder to get that help. Most formal afterschool settings only cater for junior and infant children, but there is nothing for the additional needs teenager who needs constant support and supervision for everything. My son at 14 is very vunerable, because at first glance his needs are not at all obvious. He looks old enough to know how to cross a road for instance, or understand an instruction. He is now taller than I and can run faster than I can, but can bolt off when frightened or alarmed by things that are not always logical or predictable.
Wrap around care for school age children would be a dream for parents of additional needs children. It could be done (and should be)but it would be very costly, and there are several complications beyond cost and the need for the right staff. Many children travel on school transport to school - often some distance away. My son is at school (our nearest correct classification special needs school) nearly 10 miles away, so actually for me and any parent without a car after school care at his school although a lovely idea would have logistical difficulties. In an ideal world a second later school bus would need to run!

Childcare is only one of many difficulties that make working even a little close to impossible. In the early school years I was constantly expected to pick my son up or come in to change his clothes or have him home instead of school trips for which there was no extra staffing to keep him happy and most importantly safe. Technically these exclusions are illegal but it happens - and parents do what is best for their child rather than see them suffer. Add in the medical appointments - often at far off hospitals, the special needs dentist, OT SALT, assessments, courses ( if you are lucky) disturbed nights, increasing parental ill health -and really working full time is an impossible dream.

Magso that is a very heartfelt and true post

Thanks autumnsmum
Do you know I think a whole change of attitude is what is needed- by our whole society!
Upandatem I totally agree. We have settled on me working 1 shortened day a week. On that day DH works flexi although he is often overseas so I am lucky that my employer - and colleagues are very understanding!! But parental ill health (mine) very nearly sank us.

My biggest issue is that, as Starlight said, I have oodles of people (other school/ nursery mums mostly) who I could leave DD or DS2 with if I needed to, or who could bring either of them or both of them home for me from somewhere or other.

With DS1 it's a completely different story, and it has made life sooo difficult at times (and continues to do so!). We have a fantastic Saturday respite centre in our borough, but a) it is very over subscribed so each family gets given very few days b) the days are allocated randomly, so you often don't get the days you really need. Obviously we are very grateful for any help, but if my mum isn't available then I have discovered that our only other option re ds1 is to get a specialist babysitter at £15-20 ph. Maybe I'm ridiculously entitled, but I don't see why we should be charged such a premium for my incredibly placid, easy (at home!) ds when I could get someone to watch my other (more demanding) kids for less than half that.

It's like what happens with weddings...tack 'special needs' onto anything at all and the cost rockets

SisterChristina: That reminded me of the most crucial point; we eventually accept the lack of day-to-day childcare but it's the times when we geniuinely NEED it and can't get it that hurts so much. Family funerals that we miss are the ones that may find particularly difficult and I really don't dare to think what would happen if one of us was admitted to hospital as it's just impossible to be in two places at once and late night childcare isn't even close to possible.

1. Why is childcare for a disabled child often more expensive and what can be done to reduce the costs of providing childcare for this group of children?

I once had to pay an extra £45 per week for just DS1 so that they could pay for an extra person to look after him. that was when i finally found someone who was willing to take him on. The previous childminder lasted about 6 working days before giving up because he kept running away and when he was frustrated would hit her grandbaby or try to bite her cat. the cat always defended herself robustly.

1. To what extent does the current system of support with childcare costs help parents with disabled children to meet the additional costs of childcare?

not much. we get direct payments for a few hours only. we have asked and they have continued to refuse. even after he was found a on the street in winter barefoot and in his pjs and taken to the police station. social services didn't do a thing and we chased them for 3 months to do an assessment and assign more hours of DP. still nothing. There's a centre of sorts for the whole local authority and the different age groups get a saturday per month plus one evening every 3 weeks and you have to book 3-4 weeks in advance because it gets full quite quickly. we always miss out. that's not enough places.

1. If there was to be financial support to meet the additional costs of providing childcare for disabled children, how could this be most effectively delivered? What do you think are the pros and cons of offering extra support either directly to parents or the providers, or via local authorities?

Parental choice is key. let the parents have the option to receive the money unless there are good reasons why they cannot manage to themselves. local authority will probably buy more tea and biscuits in their kitchens for 'hospitality at parent meetings' and claim it's been appropriately targeted

1. What are the barriers to extending access to suitable childcare for disabled children and what can be done to address them?

cost, training, acceptance by the community. Get specialists supporting childcare settings which need them. extend statement of SEN or its successor in title to include childcare settings and specify resources for the after school care

Do you agree that families with disabled children and young people experience fewer early years and childcare options compared to other families? If so, why is this and what can be done to address this?
Yes.

-Are they the same/different for disabled children from BME communities?
to the extent the we are first generation migrants with limited support networks or family funds, it's harder to et support. it's harder to choose to stay at home and rely on grandparents. family back home still want yo to send money, even a quick call to mum for encouragement doesn't come as part of the free minutes so can't happen as often. still having to deal with the superstitions surrounding how he got the disability in the first place (who cursed whom on which side of the family and why) and politely rejecting which potion, prayer or ritual should result in a cure without causing a family feud in the process. suggestions for spiritual cures are incredible - incisions on the child, drinking concoctions (i got typhoid from drinking as a child and never again), ritual baths, fasting, dodgy foods (brain of something with eye of something cooked in the fresh blood of something according to an associate from another country), flagellation, sleep in graveyard with red candle and white candle for seven nights, give all your money to x and fast the child for 7 days, drink 1 bottle of oil over which a certain incantation has been invoked, 7 lashes with 7 brooms over 7 days to the four cardinal points etc. it's a hidden otherworld no one wants to talk about but the pressure can be immense. for some people the consequences of disobedience is steep and they may face ostracism from the communities. Many people in my country of origin still think it's either an evil spirit that can inhabit their kids or it's communicable or it's bad luck in which case they can be cursed by association

• Are they the same/ different for children with complex health/medical needs?

if ds1 had an ng tube or needed oxygen, the staff would probably have less running around to do but there would be significant personal care requirements and the need for such facilities as well as storage of equipment. trips at the holiday club would require even more planning and probably specialist transport. if the child had a life limiting disease, it would be significantly different

1. What is the role the following bodies or organisations should play in improving the availability of childcare for disabled children and what is needed to enable them to fulfil this role?

•National and devolved government •Local authorities and their health partners •Early years providers, including childminders •Schools (mainstream and special)

^national government should allocate enough money and ensure there's some contingency if we or the LA can put forward a business case for extra.
Local and health authorities: appointments out of hours, visits to the childcare setting, adequate staffing. our health authority has apparently bee withdrawing people and because we have been too exhausted to kick up a fuss about 5 year speech therapy waiting lists, have decided that there is no evidence of demand.

my preference for childcare would be a breakfast club and after school club in school. We had a particularly successful stint at a mainstream after school club. As ds1 attends a special school, he got the chance to integrate after school and the space was adequate . The special school were kind enough to invite the after school club in for a day of training, they agreed some social targets and there were frequent visits from the school teacher to the after school club to see how he was getting on and to address any concerns. it was an amazing experience except that it has became too expensive to sustain.
A subsidy to the special school or senco to fund the release of a teacher or therapist to support people willing to agree such childcare arrangements and some help with added cost of the placement if there are increased personal requirements would be good.^

1. What are the reasons childcare offered for disabled children can be lacking in quality and what do you think needs to be done to improve this?

not enough training, awareness and specialist support. Although realistically how much can a childminder learn about every disability going on a 2 hour special needs course? other parents may be uneasy around special needs and may be uncomfortable. we have seen a lot of that although the other kids have been very accommodating and even taught him splay skills.

Thanks again for all of this - we will look at it all in detail on June 2 and share our response with you when we send it in to the inquiry. Do please keep adding your thoughts in the meantime.

Oh I killed the thread

Going to draw a line here

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so that we can collate all your responses. Thanks very much for your thoughts.

Adequate childcare for a child with disabilities is lacking to say the least. Add to that a child with medical problems and there is NO ADEQUATE CHILDCARE unless u are extremely lucky!

We could not access the 15 free hours for our DD as she has seizures, unpredictable and needs to be medicated. Her other medical issues cause her other issues such hypermobility and learning difficulties. Pre school was really poor in training, (they had to be retrained when DD attended.)

DD did on average 1 HOUR A WEEK as staff were so worried DD would have a seizure that I was constantly called in. They had extra funding but often when I was walking in to pick her up DD would not be supervised and would be on her own.

More money, more money and training needs to be implemented. This is not going to happen at a time when this Govt keeps cutting the welfare budget and DLA.

There is no wrap around cover even though DD is at sn school as this is limited to a few children, this means that I cannot get a job. DD has regular appointments and often hospitalised, another reason there is no childcare.

There is no-one to look after DD not even family and so childcare is not something that we have ever had the privilege of and at this stage that is what it feels like, an indulgent privilege that if I was really rich I could afford.

Might be worth reporting your post, Jaded - so that mnhq see it!

Hi JadedAngel,

We've just seen your report

Rowan's not around tonight unfortunately, but we'll make sure she sees your question as soon as possible.

Watch this space!

I can't find anybody who wants to do the childcare. The local childminders are so inundated that they can pick and choose who they take on.

I managed to find somebody after a year of searching but they don't do school holidays/weekends when I need it the most.

In a rural area the cost of agency staff coming from the big cities is not worth their petrol money to come out to you.