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

1. Yes childcare is more expensive. In our rural area where there are no nurseries I used a childminder. DS2's needs meant she really couldn't take on other preschool children if caring for ds2. Practical limitations mostly, for example, she couldn't push a wheelchair and a baby/toddler in another pushchair. So by accepting ds2 the childminder was limiting their income as school age children don't require all day care.

DS would take over an hour to take a bottle and require careful monitoring of breathing etc.. So childcare really needed to be on a one to one.... hence the increased cost.

1. It doesn't, when I was unable to find a childminder the only childcare I was able to find was family or friends willing to come to my home. BUT as they were not registered I was not able to list them as a childcare provider so we had to pay them ourselves. In the case of our friend, she underwent specialist medical training but because she hadn't undergone a standard childminder course & registered with the council we couldn't get help. A rigid system that offered no flexibility for our unusual circumstances.

1. I would be happy for the funding to be paid directly to the childcare provider but the system must allow for flexibility to chose other than those listed on the LA website.

1. There are basic problems across the board that apply to everyone - Disabled children require a higher ratio of care & this makes it less economical for the provider to offer services to families with disabled children. There should be some enhanced funding available from birth upwards. To encourage providers to accommodate disabled children.

Now my son is older and we live in a rural area we struggle with holiday and after school care, our nearest specialist afterschool care is an hour away.

1. As a child gets older activites and the level of supervision at holiday care for the childs peers is often unsuitable for the disabled child.

1. Don't try and make a one size fits all system, when a child ahs complex needs it may be that the provision needs to be tailored. Work with the family, they usually know what would work!

1. The child needs to be seen as an individual and not a list of diagnosis and disabilities. All too often budget and profit stands in the way of a truly inclusive environment. Training and awareness, no matter how much money you invest unless people are educated and believe they can provide the best environment its not going to happen.

1. Education, experience, fear and flexibility

1. Some special schools offer fantastic after school and holiday clubs. IME children in MS education with complex needs fall are not always able to access the MS clubs as their support finishes when school ends but they don't qualify for the SS clubs if not a pupil

10. I have always found teachers, childminders well intentioned and really want to provide the best care. In many cases its beaurocracy and budgets that stand in the way.

11. Midwives, health visitors, GP to be better informed and able to point new parents to the specialist support, even if it is just other SN parents... after all they are the most knowledgeable of them all.

Sorry for the War & Peace

Yes. My thoughts is that less than half the amount of childcare would ever been needed if children and their families weren't being so spectacularly failed elsewhere.

No worries mymatemax, it's a rather thorough questionnaire isn't it

Anyone who doesn't fancy responding to the detailed qs can always take the shorter survey for parents.

Can you expand on that Starlight? Sorry, not sure my comprehension skills are fully working yet

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?

a) Disabled children sometimes need a higher adult to child ratio and so someone has to pay for the additional adults. There may also be extra training requirements that someone needs to pay for. As this is not a cost to the various childcare providers without a child with a disability they feel justified in expecting the parents of the child with a disability to cover that cost. Sometimes specialist equipment needs to be bought.

b) SN is an industry. People like to charge more for SN under the assumption that the taxpayer will fund it. Many commissioned services from Local Authorities for children with SEN are more expensive per child than they would be if the parents commissioned services themselves.

c) Many providers will only take children in holiday clubs or activities privately or on a 1:1 basis regardless of parental insistence they can cope as the confidence and experience isn't there.

d) For children with social and communication difficulties, most childcare is stressful for them and whilst other children spend that time learning and socially developing, children with these disorders spend their time progressing towards an anxiety disorder. During these times, these children need educating, facilitating in order to get as much out of the sessions as those without disabilities. Even if it were affordable, it is unlikely the expertise would be there as it isn't even available in most schools.

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?

a) There is no support at all. DLA is sometimes awarded to parents but the expectations for that mean it is long gone before any childcare consideration, and it wouldn't cover much if it was ALL spent on childcare. We spend DLA on council tax and hugely increased cost of living basically, as we had to move to an expensive council tax area in order to move to an area that would fund ds' specialist school placement.

b) The voucher scheme is inconsistent and problematic and not all providers accept them. Also often they simply can't do because they don't have the generic accreditation which is irrelevant to the children's needs, even if they are say a trained nurse so able to deal with the medical side of disabilities easily. The system is inflexible.

c) The system doesn't support parents with children with disabilities to meet the additional costs of living, i.e. eating, heating, travelling, education etc. Unless childcare was completely free, it is unlikely that many jobs will improve that.

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?

a) As mentioned, LAs seem to find it difficult to get a sensible deal. If parents commissioned services they'd be able to better and more accurately get the provision that their child needed individually rather than a something agreed in a block contract. Having said that, it seems rather unfair expecting LAs to ensure that provision is available to meet need if they have absolutely no control over it. Perhaps the LA can be a service provider carefully targeted to meet need, either directly or by commissioning and parents can be able to choose their service or another to spend their child's funding on.

Dla is increasingly being used to plug the gaps in the NHS/education by many families.

Ahem! Well, for the first time ever I am posting with full Judgy Pants:

Sadly, all childcare for children with disabilities is a lottery and very much dependent on the individual provider. For families seeking childminder vacancies, it's quite scarce for young children and for those of high school or above, it's pretty much non-existent whatever the cost. Local Authorities don't have the extensive budgets that they once had and so are increasingly encouraging families to access "mainstream" services rather than specialist services.

It's an admirable consultation in theory but makes no recognition of the existence of the Equality Act which requires all providers, both public and private, to make reasonable adjustments, without additional charge above that of able service users; something which the current government seems to be attempting to drive home to University students with the aim to reduce education support grants for disabled students. Laws in this country have come a long way over the past decade; from anti-discrimination all the way through inclusion (on the outskirts) right up to Equality. Pity that they don't make it any easier for these to be enforced or for the children to access legal representation.

Where does the consultation ask about awareness of the Equality Act or experiences of attempting to access equality in society for children? Or legal representation in fighting for these basic rights?

My thought and a key reason I havent returned to work is sleep deprivation.many of us with children with disabilities struggle with this for years . I haven't had a child with medical issues but I know they can add hugely to sleep
Less ness . Dd is too young now but in the future for me to work it would be good if she could attend overnight respite child care.

OK, So here's a more considered response by each point:

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?

Individual providers tend to operate in a free market and can therefore charge whatever they like. Equality laws remain vague generally about additional charges or costs to those with disabilities. Improvements could be made by capping charges or clearly defining where this is appropriate. The Government could help Disabled people and their families generally if it were to undertake a review of generally of what is commonly viewed as "Disability Tax".

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

There are no obvious aspects that help with additional costs of childcare. But then again, childcare for disabled children, particularly older children, is pretty much non-existent.

3. 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?

An obvious approach would be to extend the use of Direct Budgets or Personal Budgets to allow use for childcare, a basic necessity which isn't currently included in this scheme. Additional funding might also be paid directly to the child rather than the parent, making it non-taxable, possibly via DLA payments and regardless of whether or not the parent works outside of the home in addition to caring. A realistic number of hours funded at rates according to Care and Mobility components might be a starting point.

^4. 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? ^

Training, awareness and inclusion driven approaches are needed nationally and should be free to access for all providers who should then be recognised for its efforts by OFSTED or similar.

-Are the reasons the same/different for older disabled children (eg 14 plus)

There is an assumption that high school children generally do not need childminders etc. A younger child with disabilities may well be not so obviously different from non-disabled peers, but older children are undeniably different and may be alienated and stigmatised as such.

-Are they the same/different for disabled children from BME communities? Class and race both seem to make a difference to accessing any services for disabled children, but the Government really don't need yet another report confirming this before they ought to take action.

-Are they the same/different for disabled children living in rural areas

Public transport across urban areas is difficult enough to access. I would assume that rural areas would be more so.

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

5. 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?

Generally a lack of training, awareness, inclusion and, often willingness.
Also, a clear lack of adequate compliance with Equality Act and a lack of robust complaints procedure which represents the interests of the child.

6. 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
Robust policies, monitoring, reporting to parents, ombudsman that is actually effective and unbiased and ultimately access to FREE legal representation for the child regardless of household income.

•Local authorities and their health partners
Other than ensuring that ALL LA provisions are accessible and inclusive with appropriately trained staff? Then it would be; Regulation, monitoring and robust complaints procedures without fear of being labelled a problem family for raising concerns.

•Early years providers, including childminders

•Schools (mainstream and special)
Enforceable right to access to and be supported in all extra curricular activities and all school trips, including residentials.

7. What can be done to ensure that inclusive childcare becomes the norm for disabled children going into the future?
Possibly an issue for OFSTED to ensure this is the norm?
Also, as repeatedly stated, full access to QUALITY legal assistance for children which is free of charge regardless of household income.

8. 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?
Providers may understandably feel awkward and lack confidence or just lack training, facilities and funds to take on the necessary number of staff. Also the term "Disability" is such a spectrum, a provider may be confident in only some types of disability. Training and ongoing support that is free to access may help.

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

In reality, there is no provision at all at the moment. All families with disabled children, regardless of age or race, are unable to access any form of reliable AND long-term childcare.

^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?
ALL Local Authorities currently have a legal duty to publish their "Local Offer" this should include details of childcare and shortbreaks for disabled children of all ages. CAF Assessments (Common Assessment Framework) ought to be an opportunity to ensure that families are given full information. CAF is however, not always effective or even available. Neither is the obligation for LA's to provide a carers assessment. Local Authorities used to also have a legal duty to maintain a full register of all children with disabilities living within their area but this was lost in subsequent legislation rather than enforced.

NOTE: Most parent/carers give up work due to the increasing demands on their time for appointments, meetings and therapies which need to be done during a normal working week. All remain an issue regardless of access to childcare or to family support as all require parental attendance far beyond what might be accepted by employers as Carers Leave.

There is also the psychological, emotional, physical demands on them that has been well documented. Also the additional costs or more and more frequent "Disability Taxes" involved that can no longer be anticipated and are so numerous that none of the current levels of DLA or Carers Allowance can cover this. It is also an absolute insult to all carers to expect them to carry on relentlessly providing loving care for an amount which is far below minimum wage and then CAP their capacity to earn additional income, particularly in a society where "Disability Tax" is increasingly complicating demands on family finances.

Three ESSENTIAL changes that would make a hugely significant difference to families would be:

1. Offer of medical, school and therapy appointments outside of working hours, e.g. Saturdays. Plus FREE Parking at these as a bare minimum.

1. Increase in the minimum number of hours allocated for short breaks nationally and these should be free and inline with the minimum number of nursery hours currently available to many mainstream pre-school children, regardless of age of disabled child. (To relieve pressure on family life and to allow older children a social life outside of the family).

1. Recognition that the current legislation, though admirable, isn't easily enforceable in reality, that families need more robust and dependable recourse nationally and that they should not have to pay out of family income (incur further levels of financial deprivation) as a result of having to take action to ensure fair access to services and to support and social inclusion. Legal support should be free and seen as available to the CHILD to ensure their legal rights rather than financially penalise parents and SIBLINGS to ensure this is done. Note a lack of consideration of the part played by siblings and the impact this has on them and their futures too.

RowanMumsnet: Wow, a really long post. Hadn't realised how many questions there were and slightly embarrassed at my long drawn-out reply. So sorry! Just hope it helps a little.

My son can attend playschemes and afterschool clubs if I am there to shadow him. Otherwise he cannot access them at all as no 1:1 provision is available. This concerns me as if DS were to have siblings, he would effectively be excluded from participating in any community activities.

Even if 1:1 support were to be provided, it would need to be appropriately trained 1:1. This trained supervision is not available in schools, so I cannot see it suddenly becoming available in other settings.

Current childcare/play leader training is not adequate for children with sensory issues or social communication disorders. A child is often better left with close family or friends who have often done the relevant training, or had sufficient supervision under beady parental eyes etc to understand the child's difficulties without resorting to inappropriate stereotypes or potentially harmful behavioral management techniques designed for NT children.

There is no childcare provision for children like my son, educational provision is not adequate either. This means I cannot work. This is not a situation I am happy about by any means. Disability in the family seems to be a direct route to poverty and this cannot be right.

No respite or short breaks are available, to be honest I think these are just an urban myth for children without severe medical needs.

Whoop, thanks so much for the brilliant responses.

We'll have a look at the blog and the linky JadedAngel - is it part of the MN Blog Network do you know?

Upand totally agree with you about the reciprocal care and the groups

Yes, I'm held hostage in the home because if anything happened where Ds needed picking up/helping there is no-one available to 'just collect him and keep him for 10 mins, I'm on my way'. No-one.

Another quick thought a lot of us on here have more than one child with special needs . I have two with autism , trying to get child are for the both of them is a mind boggling thougt

Thinking again about siblings, another point to raise might be the recognition that the huge amount of appointments or hospital stays that parents are required to attend may also result in an increased need for childcare for the possibly siblings. Could there be an increased allowance of free childcare for families to use flexibly for these occasions?

Thinking again about siblings, another point to raise might be the recognition that the huge amount of appointments or hospital stays that parents are required to attend may also result in an increased need for childcare for the possibly siblings. Could there be an increased allowance of free childcare for families to use flexibly for these occasions?