I have a disability

Views from a disabled parent about getting help and support

You may also be interested in our post about parents with a learning disability.

Visit Disability, Pregnancy and Parenthood, a national information charity or the Disabled Parents Network. They have a helpline on 07817 300103. See also Best Beginnings, a charity dedicated to ending child health inequalities. 

  • Being disabled doesn’t make you a bad parent. You may feel very worried, or a failure or scared that children’s services will think you are a bad parent BUT anyone who says you are by definition a bad/ neglectful parent because you are disabled is discriminating against you. It’s not legal to say this.
  • Ask for an assessment from Adult Social Care before anything else takes place. You can self refer or ask your GP to refer (GPs can sometimes progress urgent referrals and get you seen quicker).
  • Adult Social Care will send an assessor out to your home to do a thorough assessment of your needs social care needs. It’s important to find out your council’s criteria and levels for providing help. Many councils now only provide services to people who meet the ‘Fair Access To Care’ criteria at the substantial level or above.
  • It is important that as part of this assessment you are clear about the needs you have as a parent with a disability. Local Authorities have a duty to provide services to adults with disabilities who are unable to meet their parenting role because of their disability, and give them support to do so.
  • After your needs have been assessed Adult Social Care will decide whether you’re entitled to any help. If you are then they will probably offer you a ‘personal budget’ and give you the opportunity to decide how your needs will be met.
  • Its IS Adult Social Care’s responsibility to meet your needs as a disabled person in all your roles (personal care, as a parent etc). This could be through direct help (providing council or agency carers), or via direct payments (where you have a budget to spend on your care). Sometimes they may refer you on to other services such as charities and home start organisations
  • The budget for your care should come from Adult Social Care but in some circumstances they may ask Children’s Services or Health Services to top this amount up.
  • The theory is that if your needs are being met as a disabled parent, your child should have no remaining needs unmet.
  • Do find out very clearly on what grounds you are receiving help. Do not agree that your child is at risk of neglect just because of your disability. Any suggestion of this is more likely to come from Children’s Services than Adult Social Care, as they may have much more limited experience of working with parents with disabilities. In scenarios such as this make sure that your Social Worker from Adult Social Care is invited to any Children In Need or Team Around the Child meetings so that they can tell children’s services what support they are able to offer you.

This post was edited by ‘ruralsocialworker’ a Social Worker working with parents with disabilities. 

Case Law

There is an interesting article here about the experience of solicitors working for parents with learning disabilities. 

Read the Top Ten Tips for helping people with learning disabilities in court. 

The court has issued guidance on dealing with cases where a parent has a learning disability in Re A [2013]

(a) There is duty on those acting for the parent(s) to identify their client’s need for assistance in responding to questions and giving instructions, which must be considered by representatives at the outset of their instruction.  Any need for support must be addressed at the earliest opportunity.

(b) When this is known prior to the outset of proceedings, on issuing, local authorities should draw the issue of competence and capacity to the court’s attention. In turn, on the day following issue, the court will give directions for the appointment of a litigation friend.  The new PLO envisages that in those circumstances the court should give directions for special measures at the case management hearing to take place by day 12 of the proceedings.

(c) When the issue of capacity and competence is not identified at the outset, it should be addressed fully at the case management hearing.  At that hearing, those representing the parents should apply for special measures, where the case for such measures can be made out without any expert advice. Alternatively, where expert advice is necessary to identify the existence or extent of the learning difficulties, they should make an application in accordance with Part 25 of the FPR for an expert to carry out an immediate assessment of the capacity and competence of the party.

(d) The legal representatives should normally by the date of the case management hearing identify an agency to assist their client to give evidence through an intermediary or otherwise if the court concludes that such measures are required.  If the court is satisfied that an expert report is necessary to determine whether the party lacks capacity or competence and/or as to the extent of any special measures required, it may direct a further case management hearing to take place once the expert has reported so that detailed directions can then be given for the instruction of an intermediary and/or such other assistance as may be necessary.

(e) So far as funding is concerned, there is a distinction between the cost of obtaining a report from an expert as to capacity and competence, and the cost of providing services from an intermediary.  The former will, subject to the approval of the legal aid agency,whereas the latter, as a type of interpretation service, will be borne by the Court Service.  Those representing the relevant party should address these funding issues at the earliest opportunity.  They should obtain prior approval from the legal aid agency for the instruction of the expert and, as soon as possible, give notice to Her Majesty’s Courts and Tribunal Service that the services of an intermediary are likely to be required.

 

The Court of Appeal has published guidelines on dealing with cases where the parents have a hearing disability in Re C [2014]. The court commented:

It is crucial for professionals and those involved in the court system, in particular judges, to understand one profound difference between the ordinary need in cases where parties to the proceedings may speak a different language for there to be “translation”, and the need for a different character of professional intervention in these cases.  This need is not solely or even largely one of “translation” as would be the case in the straightforward translation of one verbal language to another; the exercise is one of “interpretation” rather than translation.  Communication between a profoundly deaf individual and professionals for the purpose of assessment and court proceedings involves a sophisticated, and to a degree bespoke, understanding of both the process of such communication and the level and character of the deaf person’s comprehension of the issues which those in the hearing population simply take as commonplace.  For a profoundly deaf person, the “commonplace” may not be readily understood or accessible simply because of their inability to be exposed to ordinary communication in the course of their everyday life.  What is required is expert and insightful analysis and support from a suitably qualified professional, and the advice this court has in the reports we have, a suitably qualified professional who is themselves deaf, at the very earliest stage.

23 thoughts on “I have a disability

  1. Matt Harding

    Somewhat off-topic, have you thought of making a partner site that covers the other half that being the Court of Protection? I think it might be a good resource for families having to go through CoP. What they should know and what their rights are in relation to the family member’s treatment.

    Reply
    1. phillimoresarah

      There are big problems in the mental health field, which certainly impact on child protection issues. Hopefully we will soon get some more information about these issues up on the site.

      Reply
  2. Eeyore Incognito

    That is a fascinating piece of research.

    Here’s the abstract and conclusion for anyone who might miss the link.

    Abstract
    There is a recognised risk of parents with learning disabilities having their children removed. Little research has investigated the impact of this on these parents. This article looks at the perceptions of nine mothers with mild learning disabilities and their experiences having had their children removed. Interview data were analysed using Interpretative Phenomenological Analysis (IPA). Findings reveal the struggles mothers with learning disabilities faced being ‘suitable mother’ – including presumed incompetence and scrutiny of parenting. Participants’ responses to having had their children removed are looked at and support reviewed. Finally issues of power were highlighted throughout Participants’ accounts and the impact of this is discussed. Clinical implications indicate areas for service improvement.

    Conclusion
    There appears to be an overwhelming influence of ‘powerful others’ upon the lives of mothers with learning disabilities. Before they even have a child, society seems to suggest they should not. When they do have their child, however, they appear to have to be better than ‘good enough parents’ and seem set up to fail by the standards of those monitoring them (Chinn, 1996 cited in Edmonds 2000). When the mothers do ‘fail’, powerful others remove the child. There seems little negotiation in this process. Few mothers appear to have advocates and the child is often then adopted –a decision sometimes not even made through court. To the mothers, the decision appears a foregone conclusion over which they have little control or choice.

    What then do the mothers do? How do they cope? They are left feeling helpless and bereft. They could turn to others for help but past experience has taught them that this may not be beneficial. Moreover, for many mothers it might mean turning to those who removed their child in the first place. Should mothers reveal their true feelings it might only serve to prove it was right to remove their children. Worse still, it could support the removal of yet more of her children. The mothers’ voices and feelings therefore seem to remain hidden and they attempt to block out upsetting thoughts and reminders. It appears their only solace is that one day their child might return. Meanwhile any contact will suffice. However, all this once again appears to rest in the hands of powerful others.

    Reply
  3. Eeyore Incognito

    Please do I think it is really important. I’m responding now because I am minded to do so and may not be able to later.

    There are so many relevant points in that research. I find it quite upsetting and depressing that we are in 2014, and it appears these kinds of issues are only just being raised and listened to.

    And while I do not wish to detract from the focus on parents with learning disabilities in any way because the issues seem so prevalent for these mothers, I think it is fair to say that many of the issues can also be experienced by mothers who experience mental ill health, and whose child has not experienced any harm.

    I often wonder just how many children are removed from loving parents through these kinds of circumstances, who then later discover that the very same system has mistreated their often loving birth parents, by not supporting them properly or acknowledging their suffering, an outcome of which may well lead to suicide. But actually the number is irrelevant. That this can happen at all is failing the children who were removed, particularly those found to benefit from continued contact, and becomes emotional harm inflicted by the state. Sorry if that seems a disproportional reaction, but on re-reading it, it makes me feel very angry.

    Reply
    1. Matt Harding

      It is completely understandable. I had a lot of the same thoughts reading the article. I have noticed that many health professionals are starting to treat the mentally ill with a little more respect, yet they still as a whole have a long way to go.

      Reply
  4. phillimoresarah

    I don’t think it is a disproportionate reaction at all. What depresses me is the apparent lack of any kind of debate about what society we want to have, what we think the vulnerable need or deserve. If we don’t think its worth putting money into supporting people to be good enough parents, fine, just say so. But what seems to be happening is destruction of essential services by removing funds with no thought as to what happens next. It is short termist lack of thinking at its most alarming. The consequences for ALL of us are potentially very serious.

    Reply
  5. Eeyore Incognito

    This is interesting:

    http://www.hsj.co.uk/comment/the-duty-of-candour-is-a-giant-leap-in-patients-rights/5066378.article#.Uwymhfl_t1Y

    “Potentially the biggest thing for patients to come from the Mid Staffordshire public inquiry is the government’s plan to introduce a statutory duty of candour (also known as “Robbie’s law”) − a legal duty on healthcare organisations to be open and honest with patients or their families when mistakes have been made which cause harm.”

    And here: http://www.avma.org.uk/pages/legal_duty_of_candour_-_robbies_law.html

    Here’s hoping Jeremy Hunt will do the right thing in setting an appropriate threshold.

    Does anyone know more about this? I wonder how far the principle should extend – should it be limited to medical practice or will it encompass mental health and social care?

    Will it apply only physical harm or should emotional harm be considered too?

    Reply
    1. phillimoresarah

      That is interesting, didn’t know anything about that. How depressing that it has to be a statutory duty when it should be basic human decency. But I guess that is a legacy of being sued for medical negligence etc. If health professionals get a statutory duty it is difficult to see how social care professionals could escape. I think it should just be a reasonable expectation of all human interactions that we treat each other with courtesy and respect and if we make a mistake we acknowledge it, apologise and try to remedy it whether or not it has caused some kind of quantifiable harm.

      Reply
  6. Eeyore Incognito

    Yes I remember feeling exceptionally naive when I realised medical authorities only reveal the truth when pushed to do so – the onus being on the victim.

    I am also saddened to learn that only 50% of medical students swear some kind of Hippocratic Oath on graduating: http://en.wikipedia.org/wiki/Hippocratic_Oath. I’m not surprised that some would not wish to swear to Gods etc, but to take some kind of formal vow I would have thought to be more common.

    I am beginning to think this issue (of a missing legal requirement to be honest and open) is really what is behind and fuels the conspiracy fears.

    Reply
  7. phillimoresarah

    But if we are only open and honest because we are legally compelled to be then as a species we are in trouble. Perhaps I am naive but I would hope that we should be open and honest because it is the right thing to do.

    I think that many things fuel conspiracy fears; I don’t think it is restricted to this issue but I agree it is one of them.

    Reply
  8. phillimoresarah

    I agree. I think we are in a very bad place if we have to have detailed guidelines to say ‘don’t be daunted by telling the truth’! this is very sad.

    But it will be interesting to look at this in context of a post about investigations/complaints etc.

    Reply
  9. Eeyore Incognito

    And sorry, I wasn’t intending to infer you were being naive. I really have had the utmost and almost blind faith in many professionals and sadly had that dashed on many occasions. It was quite a shock to discover that you have to fight really very hard to challenge anything. Even now, any communication we have from the LA is clear that it is very carefully crafted “legal” speak which aims to show due procedure is followed. There is rarely anything on a human to human level which offers anything more, that maybe procedure is wrong or ineffective, or that it will be looked at properly.

    I am glad that is not everyone’s experience, but I had hoped something like this might be the kind of proactive action that might make a difference.

    Reply
  10. phillimoresarah

    And I didn’t mean you to think I thought you had accused me of naivety!

    I agree that the ‘human to human’ level of communication is becoming endangered. My clients look at me with shock if I use ‘earthy’ language, and then they laugh and are relieved because they know they can talk to me; I am just another human being after all. I think there is real risk that some professionals hide behind jargon and this causes distance, which leads to distrust etc, etc. I don’t know what the reasons are. insecurity? Professional pride?

    Sadly, I think calcifying this essential human interaction into a ‘statutory duty’ may have an effect very different to that which is intended.

    Reply

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