Tuesday, 26 July 2016

My Research Study: Autoethnography of Parenting a Daughter whose Complex Disability was Diagnosed in her Adulthood

I completed an MSc, The Applied Psychology of Intellectual Disabilities, at Portsmouth University last year. My dissertation is an autoethnography on my experiences of parenting Chrissy. It received a Distinction and has now been published by the Centre for Welfare Reform http://www.centreforwelfarereform.org/library/by-az/an-autoethnography-of-parenting.html

The 2nd link in the large box looks like an error but it takes you to an easy-read PDF version.

Here is the abstract:

This autoethnography explores my journey as a mother of a woman with intellectual disabilities whose complex needs and behaviour has presented significant challenges to services. My biographical accounts include the experiences of receiving my daughter’s diagnoses of a rare chromosome disorder and autism in her adulthood. The former allowed a unique story which emerged from phenomena that is being swept in by the tide of the technological revolution in the detection of gene mutations and structural genomic variations causing learning disability. Within the theoretical frameworks of critical disability studies, social constructionism and family systems approaches, I weave 31 years of autobiographical accounts with cultural and structural factors that influence the experiences of parents of children with learning disabilities. Included in the investigations were the uncovering of new knowledge about the culture of intellectual disability and an examination of the events leading up to my daughter’s four-year incarceration in an institution. Evidence of oppressive, dehumanising social policies and practices intersect with new themes, including the journey from asking ‘why?’ to knowing, and chasing new ‘fixes’ to the liberating possibilities of policy changes and transformative validation.

Wednesday, 9 March 2016

Moving Chrissy into Suitable Housing: How we Overcame the Barriers

Our update on overcoming the barriers we faced in finding suitable housing for Chrissy when she was discharged from the assessment & treatment unit was published by The Centre for Welfare Reform

The Government’s personalisation agenda offers people with a learning disability greater choice and control over their lives, which include more opportunities for community-based living but Jane Gregory had to overcome many barriers to achieving this for her daughter Chrissy.

Chrissy, who is 31, has moderate-severe learning disabilities, autism and complex needs caused by a rare chromosome disorder. For most of her adult life, she had been expected to fit in with the group home services that were available. In January 2010, she was admitted into an inpatient unit due to an escalation in her challenging behaviours, which can be extreme and unpredictable. Four years later, when she was ready for discharge, it was agreed that she needed a ‘bespoke’ supported living package in the community… but whose community?

Chrissy’s local community proved too expensive to be viable for the home ownership schemes that were left after Government cuts in benefits, grants and services, which Simon Duffy suggests cost people with severe disabilities 19 times dearer than most other citizens (Duffy, 2013). Government cuts have further reduced the already limited housing options of people with intellectual disabilities.

Moreover, the Primary Care Trust (now a clinical commissioning group) which was funding Chrissy’s care ‘without prejudice’ while she was an inpatient, suggested that she needed to move into an unfamiliar urban community, because housing is cheaper than in the small rural community where her family live. There, the close bonds she has with her family and community links formed by regular visits to her parents’ home could have been built on to improve her quality of life; they would also be on hand to provide back-up in emergencies. We feared that Chrissy would struggle to form community relationships in an unfamiliar area, even with the best of carers.

The PCT raised cost as a potential barrier with every local housing option we suggested. A further barrier was a five-year funding dispute over Chrissy’s eligibility for continuing healthcare, which delayed discharge planning. The PCT reasoned that, if it turned out not to be the responsible commissioner, it was potentially open to a challenge that it had fettered the relevant responsible commissioner’s discretion by agreeing to a placement that was outside that body’s policies and/or resources.

While the main barrier is cost, Chrissy’s experiences demonstrate that the infrastructure isn’t there to enable people like her to move into successful community placements. The various housing options are incredibly complicated and family carers have to become experts as they’re left to do most of the research. We looked at raising the funds to buy Chrissy a house ourselves and renting it out to her but new, confusing rule changes preclude renting to relatives. We also looked into shared ownership schemes but there weren’t any in our area.

Nor does Housing Benefit cover the cost of rents in Chrissy’s local area and the Housing Benefit caps made renting through Registered Social Landlords unaffordable. Chrissy’s claim should have been ‘exempt’ or excluded from the ordinary rules that cap Housing Benefit but this is discretionary and it isn’t made clear whether someone is eligible for an exemption until they apply for the benefit – which is only possible once they’ve secured a property. Mencap suggested that the PCT should underwrite the risks because they are responsible for the whole care package, but the PCT wouldn’t agree to this. Instead they offered one of their own two-bedroomed properties, which Chrissy would have to share with another vulnerable adult. In the past, Chrissy’s behavioural challenges have had a huge impact on others she has lived with, and resulted in traumatic placement breakdowns. Chrissy’s verbal abilities are limited and she frequently expresses herself in severe challenging behaviours; she may disrobe, self-injure, thrash about violently and scream for long periods.

The need for Chrissy to live on her own was supported by a person-centred plan (PCP) that an independent advocacy service helped her and her family to develop. In all its rich, pictorial and anecdotal detail it gave Chrissy a ‘voice.’ The PCP informed decisions to be made in Chrissy’s best interests that, due to the inter-related complexities of her mental and physical health, she needed to live on her own.

Social housing via the local council was Chrissy’s last hope. We registered Chrissy on the waiting list but she wasn’t considered to have a priority housing need, unlike most people who are leaving hospital and need housing. A housing officer said Chrissy was “hardly going to end up on the streets”.

I spearheaded a campaign, lobbying MPs and contacting learning disability charities, to highlight Chrissy’s need for accessible housing to allow her discharge from hospital. In 2010 Raising our sights (Department of Health) Mansell states that only by the efforts of their pioneering families, who had to overcome discrimination, prejudice, and low expectation, did we start to hear about how people with more complex and severe disabilities manage to make the most of the opportunities presented by the government’s personalisation agenda.

The breakthrough came when a local MP I had contacted highlighted Chrissy’s case to someone at a high level in the housing department. Chrissy’s housing category was re-assessed to top priority banding because she required urgent hospital discharge as the accommodation in the assessment and treatment unit had become unsuitable for her needs. (The unit has since been permanently closed down after the Care Quality Commission reported multiple, serious safeguarding concerns).

I checked the social housing list every week and in November 2013, a two-bedroomed bungalow in a location near Chrissy’s family came up. My bid, on Chrissy’s behalf, was successful.

Thanks to the campaigning efforts of Chrissy’s family, stakeholders finally shelved their funding differences long enough to act in Chrissy’s best interests to plan her discharge.

I was invited to take part in the tendering process to appoint a domiciliary care agency and the selection of care-workers who would support Chrissy. In March 2014, Chrissy moved into her new bungalow, where she now lives alone with full-time support.

Moving into her own home has allowed Chrissy more autonomy and self-determination. Moreover, she receives important benefits from living alone in that, for the first time in her life, her support is completely personalised. She can have all her own things around her and any autism-related needs can be met, i.e., the need for her own space. Crucially, given her history of residential placement breakdowns, she has the long-term security of her own tenancy. I have peace of mind because there is no reason why she shouldn’t be there for life now.

It hasn’t all been smooth-sailing. Probably as a reaction to another upheaval in her life, Chrissy destroyed many of her new furniture and belongings soon after she moved in and they had to be replaced. However, the destructive behaviours gradually reduced as she got used to her new environment.

Our struggles to empower Chrissy to lead as settled a life as possible have been worthwhile. She now receives pro-active, personalised, collaborative and strength-based approaches that fit with her needs. When she is feeling well and gets the right care and support, Chrissy can be a delight – funny, joyful and loving, with a great sense of the ridiculous.

The Government is very clear that people with a learning disability should be supported to live in their own communities; it is difficult to understand why there were so many barriers in place and Chrissy’s family had to do so much fighting to overcome them. Mencap and the Challenging Behaviour Foundation included Chrissy’s story in their Out of Sight report (Mencap, 2012).

Read more about the family’s experiences on Jane Gregory’s Sharing Stories blog.


Duffy S (2013, January). A fair society. How the cuts target disabled people. Sheffield: The Centre for Welfare Reform. Retrieved from http://www.centreforwelfarereform.org/uploads/attachment/354/a-fair-society.pdf Duffy 2013

Mansell J (2010) Raising our sights: Services for adults with profound intellectual and multiple disabilities. London: Department of Health.

Mencap & The Challenging Behaviour Foundation (2012) Out of Sight. Mencap, London. Retrieved from http://www.mencap.org.uk/outofsight

The publisher is The Centre for Welfare Reform.

The Search for Suitable Housing © Jane Gregory 2016

Tuesday, 25 March 2014

Update on Winterbourne View Out of Sight Campaign

Last week I went to Westminster with other families whose loved ones with learning disabilities & challenging behaviour have been supported by Mencap and the Challenging Behaviour Foundation. We told our stories to Norman Lamb MP, Minister for Care.

Another parent has kindly agreed for me to share her blog about the meeting. Please read & support us.


Monday, 3 March 2014

Chrissy's New Home

We've been very busy getting Chrissy's new bungalow ready for her.

She is on her way there now. Very excited!

Long-time readers of this blog will know what a fight we've had to get to this stage in her life. She spent over four years in an assessment & treatment unit, & now she's ready to face the world again.

Let's hope the world is ready for Chrissy!

Fingers crossed that she will fall in love with her lovely new bungalow on the outskirts of Winchester city centre. It's going to be a huge change from living on a locked ward. She will have two carers with her at all times, which will enable her to live as independently as she can.

Watch this space....

Saturday, 12 October 2013

A brief update on Chrissy.

Lots of progress since I last posted.

Seizures and behaviours are now more stable than they've been in years. We finally got there! Chrissy has been able to go out and about, and is really enjoying life.

She now has the continuing healthcare funding that we fought for over such a long period. This should mean that she will get a better quality of care in the community.

She has a bungalow in Winchester through social housing and last week we selected a care provider, so it's all systems go. We hope to complete the transition by Christmas.

I'll post again when Chrissy has moved in.

Saturday, 17 August 2013

Genetics Advances and Learning Disability: A Parent's Perspective

My book Bringing Up a Challenging Child.....http://www.jkp.com/catalogue/book/9781853028748 was published in 2000 and takes the reader through Chrissy's life up to the age of 14.

A decade later my chapter 'A Parent's Perspective' was published in the New England Journal of Medicine. Dr Samantha Knight, who was on the research team that discovered Chrissy's chromosome disorder, was editing the journal and, as you can imagine, it was a huge honour to be invited to contribute. The book, which was published in Feb 2010, had the fabulously un-pc title 'Genetics of Mental Retardation' (a term that is still used in the US) http://www.amazon.co.uk/Genetics-Mental-Retardation-Encompassing-Intellectual/dp/3805592809 My chapter encompasses Chrissy's life up to the age of 26, and lies behind reviews on the remarkable advances in modern technologies that have resulted in newly identified syndromes and the importance of genetics in learning disability. The best way I could think of to add my chapter was in a series of images that can be opened up and read individually. The 14 pages can be clicked on and scrolled through at the bottom of the screen.

In between the two books I also wrote a piece for the Daily Mail about the groundbreaking genetic breakthrough that ended our 22 year search for answers in 2006.

I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger

Saturday, 10 August 2013

Progress & Mum Meltdowns

The roller-coaster ride continues! I'm feeling more optimistic again as there's been progress on all fronts.

Chrissy made it home yesterday! It's been a real struggle to get her up, bathed, dressed and out so all credit to the ward staff for getting her here.

Last week I had what Chrissy's social worker called a 'mum meltdown' when I saw the wretched state Chrissy was in, & the only solution I could think of was to keep her at home until suitable housing was found. Now we've had another discharge planning meeting and seen the neurologist, I'm able to take a step back and make a more considered judgement. The neurologist has attributed the changes in Chrissy to Zonisamide, so it's being withdrawn but we're likely to see clusters of seizures. I'm not sure how well I could manage these at home and if I, alone, had decided to bring her home, it could all blow up in my face if I put her at risk. At least in the assessment & treatment unit there are always medical staff somewhere on the site.

The urge to kidnap Chrissy & protect her from harm at all costs grips me every so often. It's an irrational, but all-consuming impulse that made me sympathise with Sally Roberts, who ran away with her son to stop him receiving life-saving radiotherapy because she feared it could do him more harm than good. http://www.telegraph.co.uk/health/healthnews/9733803/Sally-Roberts-runaway-mother-will-allow-radiotherapy-if-sons-cancer-is-back.html Also, if Chrissy came home her place on the ward would still have to be paid for by the NHS so we need to do this properly and plan each step with her multi-disciplinary team.

So now I've had the opportunity to air my concerns to the neurologist and other professionals involved in supporting Chrissy I can see light at the end of the tunnel again. Zonisamide is slowly being withdrawn. Chrissy's had two seizures, but one of those was on 1 August when she was on the full dose of Zonisamide. She had the other seizure here in the early hours of this morning. Both seizures were one-offs & lasted around 30 seconds. I am concerned about what next with her epilepsy meds. In the past her seizures haven't been managed by Epilim alone but the neurologist said there is scope to increase it. Overall, on balance, would it do her more harm to increase her regular epilepsy meds - or add secondary antiepileptics - or allow her to have runs of seizures & use rescue meds? These runs of seizures used to only occur around twice a month but they've been suppressed by meds so I'm not sure what her natural pattern is anymore. I don't know anything about the long-term side-effects of using rescue meds at the frequency Chrissy would need. The assessment & treatment unit still use PRN Diazepam, but care providers I've spoken to use buccal midazolam, which is given into the buccal cavity (the side of the mouth between the gum & cheek). I wonder why the latter has never been tried for Chrissy & which would work best? These are questions I need to ask the neurologist at her next appointment.

Progress too on moving into the community - yesterday we met with someone from a specialist housing association for people with disabilities and mental health problems and a potential care provider. We were very impressed with each of their approaches and the obvious passion they showed for supporting vulnerable adults to live as full a life as possible. With the aid of grants, the not-for-profit housing association would purchase a share in a property of our choice, given various conditions are met. The other part of the property would be mortgaged with a specialist mortgage company. As I said in my previous blog post, the budget covers a house we've seen in the local area.

The tendering process for providing the care package is now well underway. The plan is for decisions to be made early in September. The more I learn about supported living the more I realise it will be very different to any other service that Chrissy's lived in. It will be a huge challenge and a steep learning curve. Chrissy has no idea of what's in store as she wouldn't understand the concept - but I'm really excited! Bring it on....:)

I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger