This summer I’ve been working on an academic article about parental experiences of the transition of adults with autism and intellectual disability to residential care. While reading the literature I was struck by one parent’s observation that ‘Parents don’t see themselves as carers, not at all, not until they got to an adults’ service’ (Unwin et al, 2008, p. 24).
Although parents of disabled children and adults are also caregivers, the terms are not equivalent even if used interchangeably. ‘Carer’ seems to emphasise a relationship which is practical and prescribed, rather than emotional and intuitive, a set of behaviours rather than feelings.
Parents whose sons and daughters are disabled need to be parents, even though their role may also involve care-giving. And children and adults with disabilities need their mothers and fathers to respond to them as parents, not just as providers of care. I’ve been reflecting on these multiple identities recently as my role in Dylan‘s life has changed.
When Dylan turned 19 I noticed a shift in language overnight. When completing paperwork on Dylan’s behalf, or acting for him at meetings, I was described as ‘carer’ rather than parent. I learned about the ‘carer’s allowance’ (which I wasn’t eligible for) and the ‘carer’s assessment’ (which I was). Publications aimed at families supporting disabled adults referred to me as a ‘carer’. Support and online discussion groups also tended to use the term ‘carer’. In time, I adopted the language and applied it to myself without question.
When Dylan moved to residential care two years later I had to redefine my role. I found I could reclaim my identity as Dylan’s mother (at least during the week) as he was now cared for by professionals. When Dylan came for home visits at weekends, however, I was his ‘carer’. I was still his mother, of course, but my responsibility for supporting Dylan to bathe, dress, eat and access the community safely, and to respond appropriately if he became anxious or distressed, meant that my primary identity was as ‘Dylan’s carer’.
This shift in identity which parents undergo as their adult child moves to residential care is at the heart of the article I am working on at the moment. One of the key themes in the paper is that it is through partnership with the residential setting that parents are able to reconstruct their identity in relation to their adult child. An effective partnership with a residential setting , the literature suggests, is built on a range of factors including sharing of expertise, dialogue and participation in decision-making.
Losing My Identity
Although my experience of Dylan moving to residential care was generally positive, a couple of years into Dylan’s placement something happened which undermined my confidence in my role and identity. At what I assumed would be a routine meeting to review his care, the panel member representing Dylan’s funding body asked on what grounds I was attending the meeting. As Dylan’s mother, I replied. But what was my official role, she asked? She passed me a form and asked me to indicate which of the descriptions applied to me. Did I have Power of Attorney, for example.
What transpired from that meeting shocked me. After a disabled child moves to adult services, parents no longer have a voice in decisions affecting their life. While this is perfectly reasonable in cases where disabled people are able to represent themselves, adults with a learning disability may need someone to support and to represent them. However, Dylan’s disability is severe enough for him to be assessed as lacking capacity under the Mental Health Act (2005) which means he is unable to appoint another person to represent his interests. I therefore had no legal grounds or basis for involvement in decisions about Dylan’s life.
While it is good practice for funding bodies, residential settings and professionals to involve family members in these processes, the views of families don’t have to be accommodated. I was allowed to remain in the meeting but the panel member who had questioned my role in proceedings made it clear my voice did not carry the weight of others. I listened helplessly to discussions about which number to assign Dylan within each of the domains by which adults with disabilities are assessed. Were Dylan’s communication needs low, moderate, high or severe? I didn’t agree with the suggestion made and tried to challenge it with evidence from my life with Dylan. The panel member stopped making notes while I spoke. There was space at the end of the form for parents to express their views, I was told.
The review meeting lasted nearly three hours. I drove home afterwards with mounting anxiety. If a disabled adult has the capacity to appoint a parent (or someone else) to represent them then they can get their voice heard. But if an adult lacks the capacity to appoint a representative – well, then they have no representative. Dylan had no voice. No advocate. No one whose main concern was his interests. The funding body were juggling budgets to meet the needs of hundreds of adults. The care provider had other residents to consider as well as their own business interests. Professionals attending a meeting may never have met the person about whom decisions are being made. After years of advocating for Dylan I no longer had a role in his life. I had let Dylan down. And I had lost my identity.
I found this experience difficult to process. I was embarrassed that I’d been erroneously referring to myself as Dylan’s Power of Attorney. I was aghast that it had taken me over two years to realise. I was surprised that no one at Dylan’s residential setting had alerted me to the situation. Mostly, however, I was alarmed by the implications for Dylan. Presumably this is how authorities can withdraw funding to disabled adults without challenge? Presumably this is how a disabled adult can be moved hundreds of miles away from home, against the family’s wishes? Presumably this explains the media interviews I had seen with distraught family members, unhappy about their adult son or daughter’s care? I knew that I had to do something. That unless I did, Dylan would be constantly vulnerable to decisions being made about his care by people who didn’t know him or who didn’t have the capacity to put his interests first.
In the aftermath of that meeting I embarked on a long and difficult process to be appointed Dylan’s deputy in relation to Property and Affairs and Personal Welfare. These are two separate roles, both requiring a Court of Protection (COP) Order. The application to the COP to be appointed deputy is a two-stage process. Initially, you have to demonstrate that the adult for whom the application is being made requires a deputy. If you are able to demonstrate this then you receive permission to proceed. The second stage of the process concerns the suitability of the applicant to fulfil the role of deputy.
This might not sound difficult on paper but in practice there are some significant barriers. Perhaps foremost is that the deputy system has not traditionally been applied to people with learning disabilities. More commonly, it has been used for adults who have lost capacity (rather than who never had it) or who require decisions to be made in relation to medical interventions. As such, it can be difficult for families to demonstrate that a learning- disabled adult requires a deputy. Recently, the families of three young people challenged the current welfare deputyship law through a test case in which lawyers argued that the Code of Practice which guides the courts’ interpretation of the Mental Capacity Act should be amended. Justice Hayden subsequently ruled (June 25, 2019) that the wording of the Code of Practice should be revisited but suggested that in the majority of cases a welfare deputy would not be necessary. Would that verdict support or undermine the case I would make in relation to Dylan? It was hard to tell.
The current welfare deputyship law was not the only barrier. The legal costs associated with an application to the COP to be appointed as a deputy are high. I spoke with a number of families who had already made deputy applications. Some had been successful and some not. One family who had been rejected initially but who made a second successful application reported total legal fees of £18, 000. More commonly I heard from families who had spent between £3, 000 and £6, 000 on the process. I would have to prepare and submit the application myself, I decided, without the help of a lawyer. Even then, the cost of lodging property and affairs and personal welfare deputy applications with the COP would be close to £1,000.
Although court fees can be reimbursed, payment is upfront. This makes the system out of reach for some families. Access to a representative should not be dependent on the ability to pay. And what about disabled adults who don’t have anyone to apply to be deputy for them? I would argue that every person deemed to lack capacity should have a deputy appointed on reaching adulthood – not necessarily a family member (as not every parent or sibling would be able or willing to take on the role) but someone to represent a person who is not able to self-advocate. Otherwise, those making decisions about the lives of adults who lack capacity are the funders and providers of care.
I felt reasonably confident that I had the skills I would need to undertake the process myself. I quickly discovered, however, that it was not going to be easy. Little information was available to parents about the deputy system. Dylan’s residential setting could not advise me (although they put me in touch with someone who could). The National Autistic Society were no help (I found more information via MENCAP). Internet searches left me confused and despairing. Luckily, a friend who was slightly ahead of me in the process was generous with his experience. Michael is a long-standing activist for families of autistic children and adults, having been instrumental in founding the National Autistic Society as a parents’ organisation when his own son was diagnosed as autistic in childhood. The advice and encouragement I received from him kept me going many times over what turned out to be a two-year journey.
I found the multiple forms that had to be completed not so much difficult as time- consuming and cumbersome. It was hard to figure out which forms to complete and to learn the language; I frequently started over or changed my mind about what was needed. Some of the information I needed took time to gather. Sometimes I put the forms aside while I waited to see what would happen to in a court case. Mostly, I struggled to find the time to give to the process while working full-time, caring for Dylan at weekends and trying to finish a long-overdue book. So, I worked at the forms slowly, occasionally being swept into frantic action by a new alarm or worrying development.
Finally, at the end of last summer, I submitted the forms. My application to be Property and Affairs deputy proceeded without a hitch but the forms for Personal Welfare deputy were returned with a request for additional information. I had failed to convince the Judge that Dylan required such a deputy. On the one hand I was glad to not be turned down outright. On the other hand, I was downhearted. What else could I say? The Judge had given me a specific deadline of 4pm on a particular day to return the papers. Determined to get it right, I worked on my revised statement up to the 11th hour. In a farcical final act, when I needed to take the forms to the Post Office I found I couldn’t open the door of my house. It had rained heavily and (I discovered later) my wooden front door had swollen in its frame. When I finally managed to tug it open, it wouldn’t close behind me. I couldn’t leave a house door open in a city street so I heaved my shoulder against the door to force it closed, splintering the frame. Never mind that. I had to get to the Post Office.
Lockdown and Identity
When I received the Court Orders to say I had been appointed Dylan’s Property and Affairs and Personal Welfare deputy I could have cried. Blessings on the Judge, I chanted. It felt like a weight had been lifted from my shoulders. Almost immediately, however, I found myself carrying the weight of being Dylan’s deputy in the time of Coronavirus.
There have been a number of decisions that have needed to be made on Dylan’s behalf and I have tried to work through the balance of risk for each one and make decisions in his best interests. Fortunately, I have been helped in this by fantastic support from everyone involved in Dylan’s care. I’m pleased to say that my earlier negative experience of a panel review has not been repeated. Representatives of Dylan’s funding body have been particularly understanding during lockdown and have certainly exemplified the three key factors in partnership mentioned earlier; decisions about Dylan’s care have genuinely felt like an exchange of expertise and a participatory dialogue. Perhaps this would have been the case with or without the deputyship, but I’ve been glad to have it.
I have found myself wondering whether I would have come to different decisions about Dylan’s care as his mother, rather than his deputy. Maybe. I would say that I have thought more about Dylan’s needs and less about my own, since I was appointed. Certainly, our relationship has felt different, recently. I’m not sure that’s because I have a new role in Dylan’s life, however; I suspect the change is due to the Covid-19 pandemic.
In lockdown, we have had time to reflect on the things we appreciate about our lives as well as the things we have lost. When I had to reschedule a holiday that I had planned for Dylan at Easter I realised that I would also miss the steam train, the sea, the walks and the picnics. ‘Will we ever enjoy those together again, Dylan and I?’ I wrote in my diary. The entry goes on to reflect on the nature of my relationship with Dylan and my role in his life:
What I realised this morning is how much I love my life. That although it’s possible to think of my responsibility to Dylan as that of ‘carer’, in actual fact we thoroughly enjoy our weekends and holidays together. We go to lovely places and we have found a way of being together that is joyous and fulfilling. This goes beyond my duty or his need.
‘Identity’ is a slippery concept and we slip between the categories that describe our lives. During lockdown, rather than thinking of myself as Dylan’s mother, carer or deputy, I have considered myself his friend.
Unwin, G., LeMesurier, N, Bathia, N & Shoumitro, D. (2008). Transition for adolescents and young adults with learning disabilities and mental health problems/challenging behaviours: the parent carers’ views. Advances in Mental Health and Learning Disabilities. 2:1, 22-28
The photos were taken earlier this month during a short break on the Yorkshire coast.