Unable to complete his education after contracting polio as a child, Aminu was determined not to become a beggar on the streets of Kano in north-west Nigeria. His solution was to design a bike that restored his mobility. Now he produces dozens of them, employing fellow polio survivors and helping to transform lives
I have Down’s syndrome and I live in supported housing. Today a parliamentary select committee has put out a report on the government’s planned changes for supported housing that could force people such as me with a learning disability out of our homes.
Last year the government said it wanted to make changes to funding for supported housing that would limit payments to the local housing allowance rate and let local councils have control over the extra money needed to give people supported housing. This would mean people such as me could lose our right to have our housing paid for and that there could be a lot less supported housing available.
Both these changes would obviously be really bad. Thankfully today’s report agrees, which is good to hear as it is what me and other people in supported housing have been saying for a long time. But I’m still very scared the changes could happen.
In March I gave evidence for this report. It was a historic event as I was the first person with Down’s syndrome ever to give evidence to a select committee. I was very proud to be taking such a big step for people with a learning disability, especially as I know these changes could mean that thousands of people like me lose their homes and independence. As a society, we’d be going backwards.
Before supported housing, people with a learning disability had to live with their families or live in institutions. Most care professionals think institutions are not the best place for people with a learning disability; in some cases people end up having to live far away from everyone they know, and sometimes too, without proper support, people can even be in danger of abuse and neglect. I don’t think that’s a life anyone would choose.
I moved into supported housing when I was 30. Before then I had lived with my parents. I love them but I wanted to be independent. Nobody wants to still be living with their parents at 30! After a lot of talking, my parents agreed and I now live in a house run by Golden Lane Housing, with Elizabeth and Katie, two other ladies who have a learning disability. I love living with them – we’re like family.
I couldn’t live on my own without support, but I don’t want full-time care, because I’m not a child. Supported housing means I can be independent but have day-to-day support from Mencap. My support worker Jeanette helps me get out and do the things I love, which include volunteering at Oxfam, my local bookshop and the Cancer Trust. I make my own choices and I get to live the life I want, something everyone has the right to do.
But this will all change if the government’s planned changes happen. A cut could mean that I couldn’t afford to pay my rent any more. I wouldn’t be able to live with Katie and Elizabeth and I might lose my day-to-day support. It makes me scared for my future because I’d have to move away from my home, my friends and my voluntary jobs and go and live with family. It could change my whole life in a way that I don’t want.
But I’m lucky. A lot of people with a learning disability don’t have family who can support them, so they could be forced to live in an institution, where the support and accommodation might not be right for them. They could away from everything they know and they would lose all their independence. This would be a huge step back for everyone with a learning disability.
I make my own choices and I get to live the life I want, something everyone has the right to do
It is a scary thought and I think it’s clear the government isn’t thinking about all the people who use supported housing. So I’m glad that the select committee report has said that these changes could lead to a really bad situation. This is also what a lot of supported housing providers and Mencap have said and it’s what I think as well. But I don’t know if the government will listen to this new report.
I think things would be very different if people such as me had more of a voice, more power. I don’t think changes like this would be happening. That’s why it’s important that the government listens to us.
I would say to the government: “Stop and think about what you are doing!” It’s good to save money; I am not against changes. But things have to be fair for everyone, and until you can guarantee that changes won’t take away people’s homes, independence and happiness, then these are changes that the government can’t afford to make.
On Monday, disabled representatives from disability organisations across England, Scotland and Wales presented reports to the UN Committee on the Rights of Persons with Disabilities in Geneva. It is now eight years since the UK ratified the UNCRPD with cross-party support and this is the committee’s first full examination of the UK’s performance.
So how are we doing? The government is fond of claiming that the UK is a “world leader” on disability rights. Superficially, this claim remains fairly accurate. We have the most comprehensive and proactive equality law anywhere in the world; social care legislation and practice that embodies the principle of choice and control; a social security system that claims to recognise the extra costs of disability; and law and regulations to advance accessibility. It is important to remind ourselves of what disabled people have achieved over the past 30-40 years of disability rights activism, as we have charted our journey from objects of care and charity to becoming active, contributing citizens. But any assessment of progress cannot be confined solely to what we now have, or where we were in the past. And judging by the UK’s direction of travel, the government’s claim of world leadership quickly unravels: we are seeing big cuts to services and watering down of rights and opportunities of disabled people.
Last year, I served on the House of Lords select committee, reviewing the impact of the Equality Act on disabled people. We found that this government’s deregulatory zeal and spending cuts significantly undermined the intended effect of the act. Employment tribunal fees, legal aid cuts and loss of advice services have put the act’s protection beyond the reach of most disabled people. And colossal cuts to the Equality and Human Rights Commission’s budget have left the act under-promoted and unenforced.
The UK’s mental health and mental capacity laws fail to comply with the CRPD, which stipulates that disability cannot be grounds for denying people equal recognition before the law or for depriving people of their liberty. Yet in England, there has been a 10% rise in detention each year for the past two years. More than half of these cases related to people with dementia, and a significant minority to adults with learning disabilities. The sanctioned use of restraint, seclusion and anti-psychotic medication remains commonplaceon mental health and learning disabilty wards, violating people’s rights to physical and mental integrity and to live free from torture, inhuman or degrading treatment. NHS benchmarking data revealed that there were 9,600 uses of restraint during August 2015 in mental health wards in England, while the Learning Disability Census 2015 found that one-third of patients with a learning disability were subject to the use of restraint in 2015-16.
Unexpected deaths of mental health in-patients, or those cared for at home in England, are up by 21% yet, unlike deaths in police, prison or immigration detention, there is no system of independent investigation. Since 2011, hospitals in England have investigated just 222 out of 1,638 deaths of patients with learning disabilities. Among deaths they classed as unexpected, hospitals inquired into just over a third.
The Care Act fails to ensure disabled people’s right to independent living, and swingeing cuts in health, social care and benefits are eroding the availability of support and people’s right to exercise choice and control. Disabled people are confronting the spectre of re-institutionalisation as councils and clinical commissioning groups limit the amount they spend on individual packages of support.
The UN disability rights committee has already reported on the negative impact of the UK’s measures to cut social security spending. Yet further disability benefit cuts continue to be implemented and the extension of punitive sanctions to those hitherto assessed as unable to work is being proposed on the back of declining investment in employment support.
“Nothing about us without us” is the international motto of the disability rights movement, but there is little evidence of disabled people being involved in policy development. The last 10 years have seen the proportion of public appointees with a self-declared disability halve in number, while helpful measures to support more disabled people into politics, such as the Access to Elected Office Fund, have been suspended in England.
Advancing the rights of disabled people requires good leadership to establish coherence and coordination in Whitehall, and in devolved and local government. The Office for Disability Issues was set up for this very task, but has become a shadow of its former self. But in Wales and Scotland, things are more positive, with the convention firmly embedded in policy and strategy.
If the UK wants to maintain the mantle of world leader on disability rights, it must see the forthcoming examination as an opportunity to listen and take stock. If it fails to do so, current and future generations of disabled people face the slow, inexorable slide back towards social death once again.
For decades, disabled children and adults living in institutions worldwide have suffered abuse of all kinds – from deprivation and solitary confinement in miniature cells, to sexual abuse and forced sterilisation.
Now a charity which has documented this abuse for more than 20 years is bringing a landmark legal case against the Mexican government, with the intention of laying down a new line in international law.
Throughout their years of research, Disability Rights International (DRI) has found sickening abuse in donor, state-funded and private institutions for people with disabilities across the world. A three-year investigation in Ukraine revealed that children detained in institutions without “adequate government oversight” were at risk of being trafficked for sex, pornography, or organs. At a psychiatric asylum in Argentina in the early 2000s, DRI (then known as Mental Disability Rights International) documented patients locked naked in tiny isolation cells. When people with psychosocial disabilities are subjected to social and sensory isolation like this, it is classed as degrading treatment or torture, according to the UN special rapporteur on torture.
They’re not protecting the women from getting raped by sterilising them, they’re protecting them from getting pregnant
The institutions that house children and adults in Mexico have been one of DRI’s principal focuses since 2000. Their first groundbreaking report documenting abuse in the Samuel Ramirez hospital in Mexico City contributed to the landmark 2006 UN convention on the rights of persons with disabilities.
In 2014, a two-year investigation into the state of facilities for people with disabilities in Mexico City found residents were sexually abused, locked in cages, left permanently in cribs, and overall detained in “dehumanising conditions”, as the charity described it. “People with disabilities have the right to stay in society and not be locked up,” said Eric Rosenthal, executive director of DRI. In Mexico he witnessed “effectively no community services; a total system of segregation”.
The case that DRI is now bringing centres on children and adults detained at Casa Esperanza institution in Mexico City. Casa Esperanza featured on a list compiled by Mexico City authorities of facilities for people with disabilities that were particularly abusive that was passed to DRI in May 2014 by an anonymous source.
In repeated visits to Casa Esperanza in 2014 and 2015 carried out by representatives from DRI, who were open about their intentions to investigate the facility, 37 people were found to be held in “dangerous, violent, degrading and unhygienic conditions”.
In one interview with the director of the institution in 2014, which is recorded on video, he states that the forced sterilisation of some of the women in the home is standard policy as a precautionary measure against pregnancy, in reference to the risk of sexual abuse (a resident told DRI that a repairman had raped her). “They’re not protecting them from getting raped, they’re protecting them from getting pregnant,” said Rosenthal.
Interviews conducted by DRI with patients at Casa Esperanza who were able to communicate disclosed harrowing tales of assault. Five women revealed they were being sexually abused by a relative of a senior staff member, and a workman.
DRI met with the Mexico City System for Integral Family Development (DIF-DF) in June 2014 to make them aware of the abuses, including forced sterilisation and isolation, and later sent a formal letter with photographic evidence, but it was not until September 2015 that Casa Esperanza was closed.
In the timeline of events which DRI outlines in their legal petition, DIF-DF visited Casa Esperanza in January 2015 and witnessed the same abuses DRI had recorded. “The facility was known to be abusive and allowed to continue as such,” said Rosenthal.
Once Casa Esperanza was shut down by Mexico City authorities, many of the residents were moved to different facilities. The charity followed up with some of the young people after they left Casa Esperanza. “We know that at least two people have died [since moving from Casa Esperanza]; we know that one woman was systematically raped, and I read the testimonies from the rape she suffered in the new institution, and it was even worse,” said Priscila Rodríguez, DRI’s associate director.
The case which DRI is bringing against the Mexican government under international law seeks reparation for the residents who were detained in these conditions. It calls for Mexico to provide full community integration for not only the survivors of Casa Esperanza, but for all people with disabilities who are institutionalised. To do this, Mexico must provide housing and other support services for disabled people to live in the community. The Inter-American Court has granted financial reparations to victims of torture in some previous cases, so there may be a possibility of compensation.
The charity claims the Mexican government had knowledge of the abuses taking place at the institution. They argue that the abuses constitute torture, contrary to Mexico’s obligations under international human rights law. Accordingly, in January this year DRI and the O’Neill Institute for National and Global Health Law filed a case at the Inter-American Commission on Human Rights, and are calling for deinstitutionalisation across the country. They aim to get recognition under international law that disabled people have the right to live in the community. If the commission decides that they have a case, it will go before the Inter-American court. The government is legally bound to accept the court’s decision.
The Olmstead case was a historic breakthrough throughout the world and drove a lot of deinstitutionalisation in the US
The Mexico City authorities say that after learning about the matter in 2014, they “undertook various inter-institutional actions to address the issues… initiating supervision and follow-up work… A series of joint operations were carried out between the Human Rights Commission of Mexico City, DRI, and the DIF of Mexico City, aimed at protecting the rights of the disabled population that were in [Casa Esperanza], with the aim of taking them out of that home and placing them in the care of other social organisations that provide alternative care, follow up and accompaniment to persons with disabilities.”
They state that the state authorities took the necessary steps in order to make sure that the institution was closed down, and to this day continue to work on behalf of of the persons that were removed from [Casa Esperanza], “in order to guarantee the enjoyment and exercise of their human rights, as well as to promote the development of their autonomy. These are fundamental for the strengthening of the agenda of Persons with Disabilities deprived of family care, in which the main objective is to promote their inclusion in the community”.
“Survivors of Casa Esperanza committed no crime, yet they are serving a life sentence in Mexico’s mental health institutions,” says Rosenthal. “The case presents a new legal claim that has never been before established under international law; that is the idea of a right to community integration.”
It is based on the case of Olmstead v LC in 1999, which is seen as one of the most important civil rights cases for people with disabilities in the US. A lawsuit was filed on behalf of two women with mental health conditions and intellectual disabilities in Georgia for support to be provided in the community, after they had spent their lives continuously moving in and out of state psychiatric hospitals. The lawsuit went to the supreme court, which held that people with disabilities have a right to receive state-funded support and services in the community, rather than institutions.
“The Olmstead decision had crystal clarity in terms of inappropriate institutionalisation amounting to discrimination. It was a huge historic breakthrough throughout the world; it has had really huge impact, [and] it has been driving a lot of deinstitutionalisation in the US,” said Prof Gerard Quinn who specialises in disability law at NUI Galway, “[The Mexico case] has the potential for having an impact in Latin America if it goes further.”
“Historically, disability rights have been ignored,” said Rodríguez. “Segregation is a practice that’s been systematically used for people with disabilities, and it’s important to change that mindset. We are saying that to segregate a person on the basis of their disability is one of the most aggressive forms of discrimination.”
“[This] will be the first case about community integration in Latin America, and we are very keen to have that precedent established not only in Mexico, but in the whole continent,” Rodríguez said. “We do hope that similar action can take place somewhere else. For instance, the European Human Rights System and the Inter-American Human Rights system rely on each other for standard-setting, a case before the European Court can be used as an international standard before the Inter-American Court and vice-versa. This case could thus also be used as a standard in other human rights system, such as the European and also at the International level, such as before UN Committees.”
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The inescapable logic of austerity is looking likely, once again, to reduce people with disabilities to objects – and in doing so to reduce their independence, options and enjoyment of life. According to the Health Service Journal, Freedom of Information (FOI) requests from campaign group Disability United found that 37 NHS clinical commissioning groups (CCGs) in England were introducing rules about ongoing care that could force up to 13,000 people with health conditions into care homes. The CCGs will essentially begin saying to people with disabilities and long-term health needs: if you haven’t got the cash for homecare, then it’s off to a care home for you.
As a country we have been brutalised into accepting that each year the porridge pot gets smaller and our belts tighter
Imagine you have been living in your home for years. It might be where your kids were born. Being at home, having your stuff around you, having the greatest possible measure of independence, obviously means a lot to everyone, whether you’re well, ill or disabled. Then one day someone comes and tells you, “Nope, you’re too expensive here. We’re moving you to a care home unless you cough up the money to pay for what you need.”
This sounds innocuous to many people. Disabled people and care homes go together in the public mind as easily as “peak-time train service” and “cancellation”. The FOI requests found CCGs were setting limits on how much they were prepared to pay for supporting people in their homes compared to an “alternative option”, which is usually a care home. They were willing to pay between 10% and 40% above the care home option, which will often not be enough to keep someone in their own home.
Anita Bellows, a member of campaigning group Disabled People Against the Cuts is emphatic about what this means: “Institutionalisation is the logical conclusion of cutting the funds for maintaining people at home.”
As Fleur Perry of Disability United says: “Somebody who has never met the person in question can sign a bit of paper and change everything about a person’s way of life.”
One person told me that when discharged from hospital recently, they narrowly avoided being moved to a care home only because their sibling stepped in to organise an appropriate care package.
Disabled people have long fought against the phenomenon of “warehousing” – storing people with care needs under one roof as a way to reduce the costs of providing them with the support they require. The word warehousing captures the full horror people feel about being forced into institutional care, losing privacy and autonomy. Historically, out-of-town institutions like deaf and blind schools and mental asylums were huge storage vessels for disabled people who needed help and care. This segregation continued into the 1970s and 1980s in the UK, when the battle for independent living was finally won and disabled people gained rights to all of the things non-disabled people take for granted; essentially the right to live their lives however they see fit.
Disability campaigner and retired consultant and trainer in disability and abuse Merry Cross tells me this oncoming change is a recipe for abuse. She remembers hearing about incidents in care homes in the late 1970s and early 1980s of sexual, physical and emotional abuse, theft of money and belongings and staff deciding what clothes people would wear. Abuse is not only historic. It was only in 2011 that the treatment of disabled people at Winterbourne View care home shocked the country.
The tendency to see disabled people as objects rather than complete people leads to the view that they are less than human. That obviously affects the way disabled people are spoken about – the “stick ’em in a home” attitude – and treated. This is why disabled people have benefited greatly from the legal protections provided by legislation such as the Equality Act and the Human Rights Act 1998, which incorporates the European Convention on Human Rights (ECHR).
But saving money apparently trumps all. The CCGs know they are considering something that is at the very least highly contentious. Two CCGs acknowledged in their documents that their policy might contravene an individual’s right to respect for his or her private and family life under the Human Rights Act but felt they could justify it on grounds of cost. One had its policy checked by lawyers to ensure it would not be subject to legal challenge. Our current prime minister would like to pull out of the ECHR and scrap the Human Rights Act.
The government’s never-ending and ideological quest for savings has given NHS CCGs an almost impossible task: to make efficiency savings at a time of increasing demand. It feels like we’ve been talking about “the cuts” forever. As a country we have been brutalised and traumatised into accepting that the only reality is one where each year the porridge pot gets smaller and our belts tighter. It seems that 2017 is the year when the spoon starts to scrape the bottom.
Warehousing returns whenever the idea of reducing the cost of supporting people with disabilities and ongoing health conditions arises. The economic argument for concentrating people into institutions – though of course they wouldn’t be called institutions this time around – is just that it would be cheaper. Nothing more than that. We should all be livid.
The safety of elderly and disabled people is being put at risk as care homes in England close, according to the Care Quality Commission (CQC) – with the watchdog concerned about what this means for the future of social care services.
In September 2010 there were 18,068 care homes in England, but in July this year the number fell to 16,614, according to figures released by the CQC. The closures are mainly due to the fact providers are struggling financially, with costs having increased by up to 30% in the past year while their profit margins have fallen by more than 40%. The CQC puts this – in part – down to cash-strapped councils unable to pay higher fees for these services.
It comes at a time of growing need linked to the ageing population. The regulator is worried that more and more home closures could leave needy, vulnerable older and disabled people with nowhere to go, putting more pressure on already struggling services.
What are your experiences of social care services in England? Do you have an older or disabled relative who is struggling, or have you had difficulties? Do you work in the NHS or social services? Are you worried about care home closures? Have you become a carer for a relative? Do you have concerns about state of the service?
Share your stories with us – anonymously or otherwise – and we will use a selection in our reporting.
“Do you ever hang on to the sink to help you get up off the toilet?” Not necessarily a conventional conversation piece, but occasionally a question I ask in a personal independence payment (PIP) appeal tribunal.
I’m one of a three-person tribunal that hears appeals from disabled people who have been refused either PIP, disability living allowance or attendance allowance; three benefits that are designed to help meet the extra costs of living with a disability or long-term condition.
I sit on tribunals an average of two to three times a month, and am the so-called disability-qualified panel member. The other two are a lawyer and doctor, and between us we decide whether someone meets the criteria for a benefit award and will have their appeal upheld.
When deliberating the case above (let’s be original and call him Mr Smith, a middle-aged man with a musculoskeletal disorder), the doctor mildly chided me for asking such a direct question, suggesting that I had perhaps led the claimant to a “yes” answer, and pointing out that the claimant had said nothing on his form about needing help to get off the toilet.
As panel members, we have to be impartial. I reminded him that many people don’t understand how they should fill in the form and struggle to follow the logic of how the decisions are made about who gets benefit. Many people who come before us haven’t even thought about, let alone got, advice from a benefits expert (which they should always do, if they possibly can). Any half-decent adviser would have found Mr Smith needed help getting off the loo.
It’s part of my job to look at a claim from a disabled person’s perspective. I can ask questions about how someone has filled in the form and get an understanding of the implications of what they have (or haven’t) said.
My personal experience of disability gives me some insight into the kinds of questions to ask to get relevant information about people’s conditions that make their day-to-day life difficult.
Most appellants who come to the tribunal are nervous. Tears and distress are common, even though tribunals are pretty informal. Having someone on the panel who isn’t a doctor or a lawyer does make things easier for many claimants and they are more likely to open up.
I help increase the general knowledge base of a tribunal. It’s not a “jury of their peers”, because there are not 12 of us, but it does at least nod to that principle by having a disability expert on the panel.
Although the vast majority of panel members I’ve sat with over the years are good people, everyone can have bad days, doctors and lawyers included. Three-person tribunals add checks and balances to the benefit appeal process, with room to challenge and probe decision-making and reasoning.
Sometimes we can’t give an award because the rules don’t let us, and that can be frustrating. Often we are genuinely shocked because the quality of assessments are so incredibly bad that we can’t believe that someone has been forced to appeal to get a benefit they clearly qualify for. Some assessments would be laughable if the consequences weren’t so serious.
Mr Smith got his benefit, unanimously agreed by the panel, because of my question. Was the decision the right one? Yes, of course. Would he have got it if I hadn’t been there? I don’t think so.
Ben Davis, 20, was sectioned and admitted to an assessment and treatment unit (ATU) miles from his family home in south-west England. After eight months in the NHS-run unit in the south-east, Davis, who has autism and complex needs, was moved to a newly built flat near to his family following a campaign to get him out by his mother. He and his family hoped it would be a fresh start.
But, last week, after less than two months in his new one-bedroom flat, the support he was receiving broke down. The autistic young man, for whom stability and routine are vital, will now have to move again, this time into temporary accommodation while NHS and local authority care commissioners organise the next option.
Related: Why did Connor Sparrowhawk die in a specialist NHS unit? | Saba Salman
His mother, Catherine Davis, says one problem with the flat was that it was more like hospital than home, as reflected in her son’s initial reaction to the property. “He said, ‘it looks just like the unit’,” she says. On social media, she offers a stark summary of the situation: “They fail him, send him miles away, drug him, send him back damaged after eight months, to a mini-institution with pretty curtains”.
Davis, whose campaign to release her son from the assessment and treatment unit included a petition of more than 15,000 signatures, warns of “a steep learning curve” for care commissioners organising support for people after discharge from such units.
In her son’s case, she says, commissioners rejected his wish for a move back to his family home, deeming it unsustainable. She describes poor transition between the unit and flat, no recognition of the trauma caused by being locked away and the presence of fire alarms in the flat that sparked unsettling memories of the secure hospital unit. New-build glitches meant the alarms sounded frequently at night, fuelling the young man’s distress and panic-stricken calls home.
The government promised four years ago to move people from treatment and assessment units following BBC Panorama’s exposure of abuse at the privately run Winterbourne View. The preventable death of 18-year-old Connor Sparrowhawk, who drowned in a Southern Health trust unit in Oxfordshire three years ago, and the subsequent Justice for LB campaign, further fuelled demands for action and accountability over the treatment of learning disabled people. In October, NHS England and council leaders set out a £45m plan to close England’s last NHS hospital for people with learning disabilities, plus up to half the 2,600 beds in the units. But according to the latest government figures, in June more than 2,500 people were still languishing in such units. Family-led research published today highlights the problems for people, like Davis, who are leaving these facilities. The report, Avoiding Crisis – A Parent Survey on Support Needed, is published by parent-led network Bringing Us Together and support charity Respond. It includes the views of 29 families whose sons or daughters are in or have recently left ATUs and is part-funded by NHS England,and also involves family-led campaigners Seven Days of Action, who raise awareness of people stuck in these institutional settings.
It acknowledges “the success stories of young people coming back into their communities and being close to home”. But it adds: “It has become increasingly apparent that this desirable outcome is often very difficult to achieve.” And it warns that the precarious state of social care funding could affect the development of new, community-based support.
An accompanying but separate survey of 88 families in 54 areas across England that accompanies the report reveals inconsistencies in advice for people during crises, such as being sectioned. Nearly half the families say they were not given advice on where to get help. This is despite the Care Act in 2014 obliging councils to provide information so people can make decisions on care.
Other problems include hostile relationships between families and the “responsible clinician” – psychiatrists authorising admission and discharge. In addition, parents feel sidelined by professionals. They worry that there is no recognition of possible post-traumatic stress disorder after time in units. One relative suggests: “They go in with autism and come out with personality changes, mental health issues, poor physical health issues, weight issues, no education and with post-traumatic stress disorder.”
The report underlines how people are often discharged without the person-centred planning designed to boost choice in support. Also, as in Davis’s case, their new accommodation feels eerily similar to the hospital. A parent comments: “Individuals returning to the community are given a flat which is often impersonal, with little thought given to their sensory needs. Bare walls, windows you can’t see out of.”
Katie Clarke, the executive director of Bringing Us Together, says: “There’s no pathway for parents and families, there’s a lack of support immediately on discharge … people are desperate for information and advice.”
Solutions in the report include ensuring that transition plans are thorough, that independent advocates are available to support the family at meetings, and that there are properly pooled health and council budgets to enable quicker discharge from health-funded units into council-funded community-based housing.
Related: People with learning disabilities are still not recognised as fully human | Sara Ryan
Mark Griffiths, who has Asperger’s, moved back to his family home in the north-east after a mental health crisis in 2010 led to several months in a unit 200 miles away. His experience, although arduous, seems like a comparative success story. Care commissioners proposed transferring Griffiths to residential care but his mother, Hazel, with the help of two specialist solicitors, won the argument that he should be moved back home. Initial support from a home-based care provider failed as staff changes undermined Griffiths’ need for routine.
Hazel Griffiths is now her 31-year-old son’s full-time carer, with a charity offering four hours support a week. She says: “We managed to find professionals who were sincere – it took a long time to trust again.” Griffiths works with her local NHS trust, Tees, Esk and Wear Valleys, encouraging people, families and professionals to collaborate in care. She acknowledges this is unusual. “The system seems so disintegrated,” she says.
Closer working between health and councils is vital, says Gary Bourlet, founder of self-advocacy group Learning Disability England. “It’s not just health and social care but also social housing, [and money should go] into one pot.” He adds of professionals: “They’re not listening to people and not giving them choices.” Bourlet suggests that funding from closed units be spent on specialist learning disability nurses.
An advocacy-led approach would create emotional and practical support for people leaving units, says Respond chief executive Noelle Blackman, who worked on the research.
Bringing us Together and Respond run Justice Together, a project uniting parents and professionals wanting decent support for families in crisis. Blackman suggests a helpline where specialist advisers offer advice on discharge and transfer and offer counselling sessions. Advisers can suggest human rights solicitors, local advocates or independent specialists to create person-centred plans for an active life in people’s home areas. Families can, says Blackman, dip in and out of this “justice circle” as needed: “We’d give them a path to follow when everything feels so overwhelming.”
While Blackman welcomes the national plan to close assessment and treatment facilities, she warns: “There’s good stuff being written … but the reality – translating it on to the ground – is miles away.”
Dominic Slowie, NHS England’s national clinical director for learning disability, says the momentum on transfer is growing. He anticipates change “over the coming months and years” as areas implement plans for community-based housing, care and advocacy. Slowie adds: “It is crucial that the views of patients and families with lived experience of services are central to the continued development of these plans by councils and local NHS bodies, and of course we will continue to engage nationally with organisations like Bringing Us Together to ensure this is the case.”
Back in the south-west, Ben Davis is in limbo. Such words offer little reassurance for Catherine Davis, who desperately worries about her son’s future. As she says, “just getting someone out of an assessment and treatment unit is not where it ends”.
Some names and details have been changed
Removing patients from primary health care (Report, July 20) could breach the public sector equality duty, for some people with disabilities. We know many people resident in the community have difficulty initiating access to general practice if they have intellectual disabilities, and it is possible that some people with sensory or communication disabilities would also find the removals directly discriminated against them.
Sometimes our patients with learning disabilities would not open letters from the GP and if they set foot in the surgery it was only when accompanied by a parent. Over time, parents they had relied on to make contact for them could become incapacitated or pass away, and then GPs would “forget” that family and its relationship with the NHS.
To remove isolated, disabled patients from the practice population would remove their one point of contact with the NHS until eventually a medical emergency led them to A&E, and we know from Mencap’s report Death by Indifference what can happen to unfamiliar, disabled patients without any advocacy, in acute hospital settings. The observation that some persons do not book GP appointments for themselves should not make them non-persons.
Woody Caan
Cambridge
• I was pleased to hear the recommendation by a House of Lords select committee that restaurants, pubs and clubs that do not provide facilities for disabled customers should be shut down. This continues the Lords’ support for disability issues, and we are grateful in particular to Lord Hunt and Lord Prior for their continued support of the British Polio Fellowship and its members on issues relating to post-polio syndrome (PPS). Although the idea of non-compliant business closure was first floated in March, we are yet to hear of any legislation that ensures this happens.
While almost all venues pay lip service to accessibility, it is all too common to see authorities failing to follow through on disability compliance issues.
Given that the value of the “purple pound” is estimated at £212bn, restaurants, pubs and clubs are not only discriminating, but perversely harming their own business too. We must commend the thousands of venues throughout the country who do follow through on their obligations to those with accessibility needs.
Sadly, in the absence of voluntary adoption of best practice in accessibility across the board, we may need both the carrot and the stick approach to deliver real change.
Ted Hill
CEO, British Polio Fellowship
• Join the debate – email guardian.letters@theguardian.com
Against the backdrop of this month’s jubilant A-level and GCSE final results, 17-year-previous Sanjeev Singh gives a various image of what it is to be younger in Conservative Britain.
In several methods, Sanjeev is a younger individual “doing the right thing”. He lives at house with his mum and 3 siblings and, because leaving school a year in the past, he has persisted in seeking for function. But Sanjeev, 17, is deaf and as soon as prospective employers know he has a disability, they really don’t get in touch with him once more. He keeps making an attempt to get interviews but, unable to travel securely alone on public transport, he has no way of receiving to them.
This is where the welfare state’s security net is meant to kick in. Disability living allowance (DLA), for instance – a benefit Sanjeev has obtained since he was 6 years previous – could pay for a taxi on the days he demands get to an interview and has no one to support him communicate with the crowds on a bus. But the government chose to change DLA with personal independence payment (PIP) and following currently being tested for the new, tougher evaluation in December, Sanjeev had his advantages stopped, soon after much more than a decade
Related: We must assist the disabled men and women dealing with imprisonment at property | Frances Ryan
Even unemployment advantage is out of his attain. There is no specific entitlement for jobseeker’s allowance for anybody below 18, in accordance to the Division for Operate and Pensions (DWP). As an alternative, it is left to regional jobcentres to arbitrarily judge if an individual is in “hardship”. Neither is Sanjeev eligible for the disability “unfit for work” benefit, employment and help allowance (ESA). As a DWP spokesperson confirmed to me this week, that advantage is only available to beneath-18s if they have not only left school but also are residing “independently”. So a teenager coping with chronic sickness or disability is expected to move out of their loved ones residence ahead of the government will take into account them for unemployment help.
Perversely, as a younger disabled jobseeker, Sanjeev has no way of knowing if he is even classed as “fit for work”. He can’t be assessed for ESA right up until he is 18 but in the meantime, have to commit yet another 12 months attempting to uncover a job no employer so far desires to give him.
This is unwinnable Britain. Where you can be outdated enough to have left college but be classed as too youthful for out-of-operate rewards. Where you can have a disability that stops you acquiring to a task interview but are not disabled sufficient to get living allowance.
What is occurring to Sanjeev sits within a wider landscape of the state’s abandonment of youthful individuals: housing benefit cuts for beneath-21s, unemployed 18- to 21-12 months-olds to be sent on instruction “bootcamps”, and the servicing grants for students from bad backgrounds abolished. Each and every policy is based mostly on the exact same assumption that each mother or father can afford to feed, clothe and residence their children into adulthood.
Latest government ideas to eliminate 18- to 22-12 months-olds’ in-perform rewards – that is tax credits to youngster advantage – will only hit disabled younger individuals and youthful dad and mom (any other below 25-12 months-outdated is not eligible). As Sam Royston, policy director at the Children’s Society, put it to me: remove assist this kind of as tax credits, and youthful disabled men and women who are moving into adulthood and needing added help will locate it significantly more difficult to get into function and to reside independently. It factors to how far fears of so-referred to as “welfare dependency” are detached from actuality. The advantage technique is not a crutch of dependency but – for any person born outside of the protection of income – often the launchpad to independence. To stamp out younger people’s housing, wages, training, unemployment, and disability assistance is to lock a entire generation – bar the wealthy – into stagnated opportunity, low incomes, and insecure work.
Sanjeev tells me he’s going to maintain hunting for function even though beginning the appeal approach to try out and get his disability advantage back. He asks if I know how to fill out the types. “I’m not receiving any assist,” he explains. “I’ll need to have to tell my mum to ring them.”
Disabled teenagers are easily lost in a welfare state lower to the bone. To be younger whilst bad or disabled is more and more to view your existence chances be pulled away.
I tried to commit suicide when I was 19. How tragic, you might say, so younger and so unhappy. But if I tell you I’ve had a continual illness since early childhood that is recognized for excruciating soreness, for triggering immobility and secondary – at times daily life-threatening – problems, does that change your view of my suicide try?
I was unhappy and badly essential mental wellness help to treat depression. Sad to say that the standard response was to link my illness and disability automatically to my depression – and my “understandable” suicide attempt. There is a hyperlink, but not the one perceived by mainstream imagined, medical or otherwise. I was caught in an isolated dead-finish existence inside of the family property, and as I wrote in the Guardian recently my mom was my only carer.
It felt like there was no opportunity of escape from a pointless existence frustration dragged my depression into a downward spiral and I attempted suicide. I was in despair with barriers, with limits on private freedom, and lack of independence – problems that can be alleviated by suitable social care and the adaptation of physical boundaries.
Pain was, and is, a continual. But for the rest of my life I want to experience, to really feel and to produce as a lot as I can. I believe I am as worthwhile, with all my flaws and contradictions, as any other regular human becoming. Nevertheless the bill to legalise assisted dying – to be debated in the Lords on Friday – puts us on a unsafe street of devaluing disabled people. It frightens several it frightens me.
Probably I’m overreacting. Right after all, a lot is manufactured of the reality that Lord Falconer’s bill is only concerned with relieving the suffering of the terminally ill, individuals with much less than 6 months to live – making it possible for physicians to assist in the individual’s death: an act of compassion to carry a comfortable death. Yet the media is already muddling the situation. In 10 many years not a single particular person fronting the campaign for assisted suicide has been terminally sick with six months to live – but they have all been disabled.
We all want a comfortable death, don’t we? The velvet pillow moment, loved ones current at our bedside as we slip away peacefully. Nevertheless absolutely it cannot be that the only comfy death is a medically assisted suicide? I say assisted suicide, due to the fact that is what it is: a medic supporting an person to take their very own lifestyle.
Since the Death with Dignity Act in 1997 in Oregon, doctors have been capable to legally assist individuals with suicide. But it is fascinating to note the final results of a poll on the act: the primary causes for people making use of medical professional-supported assisted suicide pan out as loss of autonomy (93%) reducing potential to participate in pursuits that made daily life pleasant (88.7%) and reduction of dignity (73.two%). Ache and struggling are minimal on the responses.
Numerous disabled individuals – with daily life-limiting conditions or otherwise – are terrified of dropping their social care and turning out to be “burdens” as soon as a lot more. Cuts to social care are drastic and the independent residing fund, which allows severely disabled individuals (such as me) to live in the neighborhood is closing in 2016. The underlining of our worthlessness as a drain on the taxpayer seems omnipresent the link is plain.
How would the enactment of the Falconer bill operate if brought to our harassed NHS? The possibility for abuse threatens to be monstrous. I’ve been in the overall health and social care method for most of my life. As much as there are good and marvellous men and women, there are repellent ones: much less than best households, carers with hidden agendas. The involvement of physicians to support you to kill your self would make the policing of the act untenable. The leap of health care involvement crosses a line that several of us say is unacceptable and hazardous.
The bill also states that help to die will be given when it is witnessed “that the individual … has a clear and settled intention to finish their very own life which has been reached voluntarily, on an informed basis and with out coercion or duress”. With out coercion and duress. Can the two medical doctors as decreed in the bill – typically strangers we see only once for ten minutes if we’re fortunate – actually make this kind of a judgment, unravelling household dynamics that could hide subtle intimidation?
Suicide is legal, and so it ought to be. No one particular has been prosecuted for going to Dignitas – and although it remains unlawful to assist suicide, legal tips permit discretion to safeguard loved ones involved in offering help. These concepts enable for a safety net, and assisted suicide cases are looked at on a case-by-case basis.
We can’t deliver difficult-pressed NHS doctors into this equation, where the matter will never ever be examined independently. Considerably of the United kingdom healthcare occupation does not help this kind of involvement. The British Medical Association is against it, along with the Royal Society of Standard Practitioners, who say this kind of involvement would “be detrimental to the medical professional-patient relationship”.
As an activist I want to rage, rage towards the dying of the light, with every beat of my heart. I want support to dwell now I want respectable social care, left alone by government and not topic to cuts and I want palliative care from physicians carrying out what the greatest of them do to the highest degree – helping me to reside properly.
• The Samaritans’ 24-hour helpline is 08457 909090
Last yr, when I was waiting for a double lung transplant, my existence felt terrifyingly unpredictable. My lungs were failing, and it was challenging to cope emotionally, but a single factor that created factors slightly less difficult was the fast approach to secure disability residing allowance (DLA). This allowed me to make immediate decisions about getting carers to assist at home, getting the heating on far more, and taking taxis to appointments. It made a extremely hard time that tiny bit a lot more bearable.
Evaluate my encounter to that of Malcolm Graham, a 56-12 months-old from Romford. He was diagnosed with oesophageal cancer in September 2013 and applied for private independence payments (PIPs) on advice from Macmillan Cancer help and his nearby Citizens Suggestions. Pips are changing DLA and are supposed to assist individuals, regardless of whether in or out of work, to meet the added fees their disability triggers.
Graham says he has called the suitable department almost every single day in the eight months considering that he applied, and is nevertheless awaiting a last choice. Throughout that period he has endured 10 weeks of chemotherapy and a 10-hour operation in which big portions of his stomach and oesophagus were removed. He has had to rely on family and friends for monetary help, but is now in arrears on his electricity payments and has lately been visited by a debt recovery firm. With out the PIP mobility help he has utilized for, he is struggling to get out and about and says the wait has manufactured him feel ineffective and worthless. Following working for a lot more than 40 many years, he can not understand why the help he wants has been so far unattainable.
Graham is not alone in his wait for a selection. Last week, the public accounts committee report on the disastrous implementation of PIP however once more showed the cold-hearted contempt of the Division for Work and Pensions towards disabled folks. This has permitted us to be treated like guinea pigs, with an unwell-regarded and poorly trialed policy unleashed with tiny concern for the consequences.
PIPs had been at first trialed in the north of England in April 2013 just before currently being rolled out nationally just two months later on. In a very vital report on PIPs, published in February 2014, the Nationwide Audit Office mentioned this rush to implementation meant the DWP “did not allow ample time to test whether or not the assessment procedure could deal with big numbers of claims. As a result of this poor early operational efficiency, claimants face long and uncertain delays.”
By October 2013 only sixteen% of expected PIP choices had been created, partly because assessments by Atos and Capita, the private companies contracted by the government to approach these claims, have been only in a position to meet the anticipated 30 working-day turnaround of applications in 55% and 67% of situations respectively. The DWP had projected that 25% of assessments would avoid encounter-to-face consultations and be carried out solely on paper in actuality this figure is three%.
What is the result of this departmental failure? Terminally unwell folks, defined as those with less than 6 months to dwell, have waited for up to a month – 180% longer than expected – for a response as to regardless of whether they are entitled to government support in the final months of their lives. Beneath DLA the wait was 7 days. Ministers disingenuously protest that PIPs are a various benefit to DLA, when in fact the concepts for giving help to the terminally ill are the identical. What kind of government would make advantage changes that make terminally unwell people’s lives that bit harder anyway?
Mike Penning, minister for disabled individuals, protests that these delays have now been diminished to ten days, but there is no reply for those who are entitled to help but are not terminally ill. Last week’s report states that as a end result of delays of up to six months (despite the fact that charities have found that many candidates wait far longer), “some claimants have been forced to turn to meals banks, loans and charitable donations” although they wait for the rewards they are entitled to.
The DWP is lurching from 1 crisis to an additional, with genuine folks suffering genuine discomfort as a end result. David Cameron needs to urgently get to grips with what is taking place inside of that division. That procedure must start off these days, with a demand to Iain Duncan Smith that he publicly accepts accountability for the struggling that Graham, and the thousands of others like him, have gone through due to his department’s incompetence. Graham says he will get choked up just pondering about his predicament. He demands a determination – and an apology.
Prof Field stated a single young patient informed him she had stopped making use of adult providers as she felt the attitude towards her was ‘poor and patronising’. Photograph: Alamy
The NHS is failing disabled and seriously sick teens by depriving them of essential companies this kind of as ache relief when they grow to be adults, the service’s watchdog warns right now.
In a highly vital report published on Monday the Care Quality Commission (CQC) castigates doctors and hospitals for leaving vulnerable young folks baffled and stressed when they begin becoming cared for as grownups by different wellness professionals.
Too numerous of the 40,000 beneath-18s in England with complicated and tough well being wants end up dropping access to key solutions they have relied on considering that childhood – this kind of as help with their mobility, breathing and swallowing – as they undergo what can be a quite challenging “transition” to becoming handled as grownups, the CQC says.
They contain younger individuals with often profound bodily disabilities, continual situations this kind of as diabetes and existence-threatening illnesses this kind of as cystic fibrosis.
Prof Steve Field, the CQC’s chief inspector of main health-related solutions and integrated care, said: “This report describes a wellness and social-care technique that is not functioning, that is letting down desperately unwell youngsters at a critical time in their lives. We have put the interests of a method that is no longer match for function above the interests of the men and women it is supposed to serve.
“In an age exactly where individuals can obtain organ transplants, keyhole surgeries and targeted cancer therapies, it really is actually disappointing that the standard care needs of many young folks with physical disabilities and other prolonged-phrase well being requirements are not currently being met,” added Area, a GP and ex-chair of the Royal University of GPs.
The CQC’s evaluation of care for this kind of younger men and women prior to, during and following the switch to grownup companies identified a host of troubles. They incorporated that “Some children’s health or treatment companies stopped at sixteen but there was no grownup support available right up until they had been 18. This resulted in crucial care getting efficiently withdrawn,” the report says.
The overview, based on the knowledge of 180 young individuals aged 14 to 25 or their dad and mom, identified that “from the standpoint of a lot of households we spoke to, transition by means of health was un-coordinated and often sudden. For some, it caused excellent tension and nervousness.”
In addition, current national advice on how to assistance them is typically ignored or medical professionals are unaware of it. Discipline also found “inconsistent and often poor details and planning from children’s services for younger individuals and their dad and mom about the changes they can expect as they move into grownup solutions. This led to a lack of comprehending of the method of transition.”
One particular parent summed up their child’s transfer to adult health care companies by saying: “From the pond, you are picked up and put in the sea.”
Area explained that a single youthful girl he had spoken to had felt so badly handled by adult providers that she stopped using them. “As a youngster she was being taken care of as a human getting whereas when she was transferred to grownup providers she felt the frame of mind in direction of her was poor and patronising,” he stated. As well many hospital doctors’ attitudes towards younger people who had transferred into their care was “outdated and paternalistic”, he explained.
Anna Bird, head of policy and research at Scope, the disability charity, explained: “Several young disabled people uncover that their good quality of lifestyle can ‘nose-dive’ when they move from childhood solutions into the adult world. They struggle to get their health demands met but also to find perform, to proceed their training and to discover a ideal place to live.”
Prof Gillian Leng, the deputy chief executive of the Nationwide Institute for Overall health and Care Excellence (Good), stated that “for a lot of young people on the cusp of adulthood, moving among overall health and social-care solutions can be a tumultuous and nerve-racking time. A poor transition between youngster and adult solutions can have a profound and prolonged-lasting unfavorable influence on a person’s existence.
“The last thing we want is for young people to fall between the gap in little one and grownup services and not get the support or care they require.” Her organisation is drawing up new advice to assist remedy the issues identified.
Area stressed that the CQC had uncovered some examples of excellent care. Even so, the NHS needed to undertake urgent technique-broad change, with GPs taking part in a essential part in smoothing the transition process, he stated.
But in a separate intervention, 1 of Britain’s prime psychiatrists, argues nowadays that due to the fact of the troubles of determining people’s state of mind, there are “no achievable safeguards” which could adequately safeguard the vulnerable if the law is transformed.
Baroness Hollins, a former president of both the British Medical Association and the Royal University of Psychiatrists, explained the strategy would amount not only a significant modify to the law but to the “principles that underpin health-related practice” itself.
Below the 1961 Suicide Act, it is at present a crime carrying up to 14 years in jail, to support a person to get their very own life.
But prosecution tips now make clear that individuals who allow loved-ones to travel abroad, such as to Switzerland, to end their lives are probably to escape costs, in specified conditions, if they are obviously acting out of compassion.
Supporters of Lord Falconer say a adjust in the law is urgently necessary to finish uncertainty and enable people to die in dignity at a time and spot of their deciding on.
But opponents declare that safeguards written into the bill could be swept away in practice.
The letter – also signed by Baroness Campbell of Surbiton, who suffers from a degenerative illness, Dr Alice Maynard, chair of the disability charity Scope, and the actors Liz Carr and Mik Scarlet between other people – argues that the bill would reinforce inequality towards disabled and older individuals.
It argues: “Why is it that when people who are not disabled want to commit suicide, we consider to talk them out of it, but when a disabled individual needs to commit suicide, we emphasis on how we can make that attainable?
“We think that the campaign to legalise assisted suicide reinforces deep-seated beliefs that the lives of sick and disabled folks are not well worth as a lot as other people’s that if you are disabled or terminally sick, it is not well worth being alive.
“Disabled individuals want assist to live – not to die.”
The bill was published last yr but did not go by way of the Parliamentary procedure for timetabling reasons. Right after currently being launched in the Lords it is anticipated to have its first complete debate prior to the summer recess.
If it clears the Lords it would then pass to the Commons the place MPs say support has grown in current years.
David Cameron and Nick Clegg, who each personally oppose the adjust, have nonetheless promised MPs and peers a free vote and some ministers have signalled they would do so.
In an article on telegraph.co.united kingdom, baroness Hollins asks: “How robust is the idea of a settled intent?
“I suggest that this is rather a fluid notion. And how can it be established by a doctor who has been launched to the patient solely for the purpose of supplying lethal drugs?
“People do change their thoughts.
“This took place to a pal dying of motor neurone ailment who advised me 6 months prior to his death, that he would gladly consider a lethal prescribed drug if it was available. A lot closer to his death, when he was very frail and incapacitated, he confided that it had been a treasured journey and he had so valued the closeness and closure that this time had brought him.
“He died gently and peacefully getting learnt to allow go.”
The seismic shock of his early birth, followed by the grinding actuality of 24-hour caring with no support, led me in the end into a state of suicidal depression. I escaped simply because I had a comprehensive breakdown. Recognising that I couldn’t carry on, I used my expertise as a former lawyer to consider the council to court to get James into a residential school.
When the information broke final week that Tania Clarence, a good, middle-class mother in New Malden, south London, appeared to have killed her three disabled kids, I heard interviews with shocked neighbours saying how she had seemed so great, she had appeared to be so pleased and in control. We do not know what has occurred in Mrs Clarence’s case – that is for the courts to choose – but the feedback from the neighbours did make me believe about my circumstance. There was a disparity among the coping face I had presented to the globe and the awful reality I was living with at house.
It had probably been much more insidious due to the fact at very first we could cope. When James was discharged right after four months in the neonatal unit, we have been just grateful that he was alive. He was simply portable and particularly cute, with a ready smile and no clear motion problems.
Then he grew to become larger and heavier, and my back began to ache from carrying him up the stairs. He grew out of the nappies I could get at the supermarket and we had to have unique incontinence pads. The pushchair was replaced with a wheelchair, and a lift-hoist and ramps had been installed in our house.
Knowing James may never stroll was one factor. Obtaining his initial blue badge in the publish gave me the first of numerous days of searing emotional ache. James began to have seizures always at night, and mostly silently. I would locate him in the morning, often blue-tinged and staring vacantly, obtaining been sick. My sleep became restless with anxiety. I woke at every murmur, and would get up each time to check he was Okay. Once his stiff arm got caught in the bars of his cot and I raced in to find him in agony.
Then the nights took on a sinister new turn, as his autistic behaviour became far more pronounced. He would frequently move his bowels in the night and play with the consequence, generating what we came to call “poo-fests”. It took hours to shower him from head to foot to change the bed and disinfect the walls.
By the time James was 5, I had given up all thought of operate and was a full-time carer. In order for Andrew to function at his occupation, I had taken above most of the evening duty.
Andrew and I were residing in parallel universes. I was juggling numerous hospital appointments a week along with medicine charts and a cohort of visiting therapists. The therapists gave me jobs to do such as standing James in a particular frame, or stretching his stiff arm.
All the time I was stupefied by a lack of rest. Meanwhile, Andrew was attempting to come to terms with days that began with him calling an ambulance due to the fact James had stopped breathing, then continued with him putting on a suit and advising clientele.
Tom, our other son, had turn into silent and withdrawn, right up until one day he burst out that he must be the loneliest boy in the world. We realised that we had been so hectic caring for James that we hadn’t even had time to teach Tom to trip a bike. After that we took turns to get Tom out for a pizza or a movie. We couldn’t get James since he was, by then, so terrified of alter that he would assault us if we took him out of the home. The family was split and I, in distinct, was below residence arrest.
When James was 5, Andrew and I attended an appointment with James’s local community consultant, who manufactured the error of asking how we were. We the two broke down and wept. She asked us if we had any respite and we did not know what she meant. We discovered, then, that James was a “child in need” under legislation and that the neighborhood authority had been beneath a statutory duty to help him from birth. 5 years as well late, we had been appointed our very first social worker. It was then that we discovered the globe of cash-strapped councils, and inefficient social-companies departments.
It took a yr – and an appeal – to get two nights of respite a month, when James would stay at a specialist centre. At very first, to have even these minor breaks was akin to a survivor in a desert being offered a handful of drops of water. It saved our lives, and despite the tiny quantity, was intoxicating. We now had a baby daughter, Elizabeth, and we managed to give her and Tom trips out of the house, like normal households.
It wasn’t ample, although, and the inexorable downward spiral continued. I stopped currently being able to cope but, when asked how I was, I would nonetheless give a smile and say “fine”. The sense of unreality among the self I was presenting outdoors and the way I was feeling inside intensified.
I didn’t dare drop handle, because my outward composure was the only thing that made sense to me and enabled me to deal with other folks. What would we all do if I allow out the emotions of panic and hopelessness that had taken more than my lifestyle and just disintegrated?
But then I began to have photographs flash into my thoughts of drowning myself in our neighborhood reservoir. I did not prepare the ideas, they just popped up. I would all of a sudden be dreaming that I was at the edge of the water, with a ball and chain close to my ankle. I would be about to wade in to the amazing water right up until it closed above my head and shut out the chaos above. I never thought of hurting James or the other young children, and the suicidal thoughts remained just that: thoughts.
I watched Rosa Monckton’s documentary, When a Mother’s Love is Not Adequate, about mothers in my predicament who had contemplated killing themselves and their children (Monckton herself has a daughter with Down’s syndrome). I understood their logic that if they couldn’t carry on, they would take their children with them in buy to safeguard them. They didn’t want to leave them behind, being so vulnerable.
I have in no way wished James had died as a infant. Loving him has enriched my existence immeasurably and he is the bravest, funniest particular person I know. He has an iPad now for evenings, which is locked in a protected outside his bedroom at college. Following watching the workers open it a couple of times, he cracked the code, crawled more than and fetched it out himself.
He now lives a total and pleased lifestyle at Dame Hannah Rogers’ Trust in Devon, in which he is checked each 15 minutes at evening for his epilepsy, by nurses who perform shifts, not 24 hrs a day. We pay a visit to him each and every college vacation, and since of the expert psychological input he has had, we can take him out on trips. We have a wheelchair-adapted van, and he will come out with us to spots this kind of as the seashore, which we couldn’t have contemplated when he lived at property.
Some folks have even now found it difficult to accept how I could “let go” of the care of my son if I genuinely loved him. The reply is that I haven’t truly allow him go. I am nevertheless in charge of his daily life, and deal with his carers, medical professionals, social employees and teachers. We Skype him on his iPad and I send him letters and chocolate buttons every single week. To the extent that he cannot reside with us any a lot more, the solution is straightforward. If he had been nonetheless at house, I wouldn’t be right here now.
Jane Raca is the author of ‘Standing Up for James’ www.standingupforjames.co.united kingdom. For assistance on autism, go to www.autism.org.united kingdom
‘We truly have a program for accurate co-production with sick and disabled folks, a reformed test that appears at the true globe of operate.’ Photograph: Image Supply/Rex Features
The Labour shadow function and pensions staff of Rachel Reeves and Kate Green have this week taken their very first measures in defining how employment and help allowance (ESA) and the now infamous Atos “match for perform” tests may possibly be reformed beneath a Labour government.
It has been a extended and torturous approach to get to this level. For far as well extended, policymakers from all events refused to see the inherent flaws in a tick-box technique designed to generalise, punish and restrict. Despite mind-boggling evidence that the exams had been failing, the very concern of welfare reforms is so politically charged that no one had any want to admit it was incorrect.
But as I read through the article by Reeves and Green in the Independent, I was tremendously disappointed. Possessing waited so extended, campaigners like me could be forgiven for expecting a detailed plan, packed complete of recommendations and recommendations. Instead, as is so typically the case, Labour appear wary of their own message, neither saying 1 factor nor an additional in a bid to placate that ever dominant middle ground.
Nevertheless, if we overlook about the message for a second and actually seem at the content, factors never appear almost as bad. Lurking beneath the caution is a total assortment of tips that sick and disabled men and women have been calling for. For instance:
• Labour says it would transform the way the perform capability assessment is designed to make it more powerful at helping disabled people into employment. The recent technique is a crude assessment of people’s impairment, with small info about how this has an effect on their potential to perform.
• Labour would redesign the check, which is presently based mostly on a computerised factors program, to incorporate a comprehensive examination of jobs that men and women could truly carry out.
• Beneath new ideas, disabled individuals would receive a copy of the assessor’s report of how their health situation may possibly influence their potential to operate, and data about the support accessible in their neighborhood location to help them.
• Sick and disabled individuals would be given a central position in monitoring the way the exams are run, providing them a statutory role in monitoring the operation of the exams and drawing up tips for improvements.
• New contracts to run the fitness-to-operate tests would be a lot far more closely tied to the accuracy of assessments, measured by the quantity of occasions that selections are overturned, with clear penalties for bad efficiency.
So we really have a strategy for correct co-production with sick and disabled folks, a reformed test that looks at the actual globe of work, punishments for failing contractors and involvement in the assessment itself.
Maybe most importantly, Kate Green says that:
“We want the evaluation to be element of the approach of guaranteeing disabled people who can function get the support they require to do so, not to threaten or punish them. The check need to be a gateway to identifying and assembling that assistance. We also recognise not every person can perform and we’re committed to guaranteeing the support’s in spot for these who cannot.”
It really is tough not to be annoyed that we’re so far from the place we must be. Every day, far more lives are ruined, and it’s clear from Wednesday’s write-up that any actual reform will be by child measures. There will be no “large bang”, no moment of cathartic triumph. But if we seem back at a Labour celebration who three many years in the past had been defining the dilemma as one of “shirkers” who could function but didn’t, the path of travel is clear.
It seems that Labour has lastly accepted that the employment and assistance allowance need to modify. That alone is result in for celebration. Nonetheless, we even now appear to be a really long way from realizing how or when.
