Children with short lives
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Marc Bloomfield
Jess Anstey and Luke Clements examine the underreported impact of ombudsmen’s responses to the COVID-19 pandemic on disabled children and their carers.
Social justice has been one of the neglected victims of the current crisis. Councils and the NHS were given the green light to ‘pause’ their complaints investigations and the ombudsmen followed suit. The Local Government and Social Care Ombudsman (LGSCO) and the Parliamentary and Health Service Ombudsman (PHSO) effectively shut up shop for three months, without any plausible explanation as to why such a drastic step had to be taken: saying ‘pandemic’ is not a substitute for rational analysis. Just as the government was mandating the hospital discharge of untested patients into institutional settings and the restriction of family visits, the Care Quality Commission and Ofsted suspended routine inspections. Not all institutional settings are benign, and the loss of such visits left all residents ‘unprotected from any form of abuse or neglect’.1Catalina Devandas, UN special rapporteur on the rights of persons with disabilities, ‘COVID-19: who is protecting the people with disabilities?’, OHCHR news release, 17 March 2020. See also Oliver Lewis, ‘Disability, coronavirus and international human rights’, Doughty Street Chambers, 21 March 2020; last updated 1 June 2020.
The harm caused by the collective hibernation of the regulators has arguably been most severe for disabled children. They cannot put their childhood on hold and delaying justice for a child with a short life is something that should never happen without the most compelling of reasons. The consequences of this disregard for justice are powerfully conveyed by Emily’s story.2Names and other identifying details in this article have been changed.
The harm caused by the collective hibernation of the regulators has arguably been most severe for disabled children. They cannot put their childhood on hold and delaying justice for a child with a short life is something that should never happen without the most compelling of reasons.
Emily is a young child with a serious genetic disorder. Her condition is progressive and it is unlikely she will reach adulthood. At a very young age, she went to live with her grandmother (Cathy) and her partner (Jo), who became her special guardians. The council omitted to tell them of the extent of Emily’s impairment, so the guardianship order only provided for modest support. When Emily’s special needs became clear (and, in particular, her need for specialist equipment and additional personal care), the council was asked for extra support but took no action (in fact, it provided less support than specified in the original order). Due to the increasing stress caused by the lack of support, Cathy and Jo split up, and Cathy continued alone, struggling with the demanding cycle of caring for Emily and financially with the costs of purchasing equipment and extra care.
Lack of adequate state support for disabled children and local authority failures to honour agreements with special guardians are routine3Firm foundations: complaints about council support and advice for special guardians, LGSCO, May 2018. and often result in extreme hardship and breakdowns of this kind. After more than two years of not being heard, Cathy sought legal advice from LawWorks and a formal complaint was made. By this time, although no additional support was being provided, the council and the NHS had agreed to share the costs of Emily’s care (but not to provide the care she needed).
Four months after the complaint was made, a formal response was received that failed to refer to the relevant facts and to recommend the additional care considered necessary by Emily’s consultant. Cathy was told she would have to wait for a decision by a funding panel at some unspecified future date. By this time, she was truly exhausted, worn down by stress and suffering from sleep disruption. Further delay occurred, with the complaints department suggesting that it could not deal with operational matters. After seven months of prevarication, it then said that all its complaints had been suspended ‘due to coronavirus’. It went on to say: ‘Please do not reply to this email or submit any new complaints as these will not be dealt with.’
Cathy’s advisers challenged this decision, for the fundamental reason that the duty to investigate complaints in the Local Authority Social Services and National Health Service Complaints (England) Regulations 2009 SI No 309 had not been amended by the Coronavirus Act 2020. The response to the challenge was just a second copy of the same standard ‘due to coronavirus’ email.
In addition to the complaint to the council, Cathy’s advisers also challenged the NHS’s failure to provide adequate support. This, too, was ignored for a prolonged period, until eventually the NHS blamed the local authority for the delay but said nothing could now be done ‘until the COVID-19 restrictions are lifted’.
This is just one of a dozen similar complaints with which one charity, LawWorks, has been dealing, and probably indicative of many hundreds of others that are pending. Families were told that, because of COVID-19, no complaints could be opened or progressed, no personal budgets could be initiated or processed, all agreements that a child was eligible for NHS Continuing Healthcare funding had been ‘discounted’ (ie, annulled), and so on.
It was pointless trying to escalate these complaints to the LGSCO or the PHSO because they had both shut up shop. It is difficult to understand why their investigating officers couldn’t look at papers ‘because of COVID-19’ or ask questions of council or NHS administrative staff as to why a complaint had been ignored or a budget not paid or a decision of entitlement rescinded.
It is now approaching the autumn. Cathy is exhausted – she is receiving only a quarter of the night-time support that Emily’s lead consultant considers necessary. Complaints made by her solicitors for months have achieved nothing, sidelined while the council and the NHS argue about which of them should provide the support. Although the regulators and the ombudsmen have reopened, for Cathy this is too little and too late. She is no longer able to cope and can no longer wait for the machinations of the complaints processes – processes that are supposed to be accessible, cost-free, informal and reasonably fast. Cathy is now considering whether she can afford to make an urgent application to the High Court in the hope of obtaining an interim injunction so she can get the vital support that Emily needs. Why should a grandmother who has taken parental responsibility for her granddaughter be treated so appallingly?
Although the COVID-19 crisis has shone a light on decades of neglect of social care, the focus has tended to be on older people in care homes. It is important to realise that this is not the only group for whom lack of support is a national scandal, not the only group for whom there is an absence of effective remedies when there is a health and social care systems failure, when the ‘system’ responds by doing nothing – by spinning it out/kicking the can down the long road – and fails a child with a short life.
 
1     Catalina Devandas, UN special rapporteur on the rights of persons with disabilities, ‘COVID-19: who is protecting the people with disabilities?’, OHCHR news release, 17 March 2020. See also Oliver Lewis, ‘Disability, coronavirus and international human rights’, Doughty Street Chambers, 21 March 2020; last updated 1 June 2020. »
2     Names and other identifying details in this article have been changed. »

About the author(s)

Description: Jess Anstey - author
Jess Anstey is a solicitor at LawWorks.
Description: Luke Clements - author
Luke Clements is the Cerebra Professor of Law & Social Justice at Leeds University and a solicitor.