Today’s article was not written by me, but by guest blogger Jane Hughes (my Mum!) Recently we have been struggling to find the right services for my autism, and this lack of support has taken its toll on my mental health, my self-esteem and my relationship with my family. I don’t want Mum and Dad to provide the kind of support I should be getting from social workers and therapists. I don’t want Mum and Dad to view themselves as my Primary Carers. I just want them to carry on loving me- and I don’t want my sisters needs to be overlooked, simply because they cannot be attributed to a specific disability. I was touched by what my Mum has written, and reminded just how lucky I am to have her support. The following is her words on the support available for autistic adults, and what could be changed to improve our overall quality of life…
My daughter is a bright, caring, beautiful and articulate young woman with Autism Spectrum Disorder (ASD). She has high functioning Asperger’s Syndrome, and a normal IQ. She is neither an IT geek nor a mathematical genius, and has no interest in memorising train timetables. She eats, sleeps, shits, and has the same emotions, frustrations, hopes and dreams as you and I. Although I can’t write as eloquently, I thought it might add something to bring a Mum’s perspective to her blog on autism.
I have recently been spending many hours on the phone and online, trying to access the services that could support Gwen and encourage her to live independently. I have worked in our local Council, and as an Advice Worker. I like to think understand the system. I also like to think I’m a compassionate person who can see the impact of cuts to care budgets. But I’m a Mum first and foremost, immensely proud of my daughter and determined to fight for whatever she needs to live the life the rest of us take for granted. I’m that stroppy middle-class woman Health and Care Professionals dread to encounter, and I wouldn’t change that. After all, we’re hardly asking for the moon!
Roll back eighteen months and our first encounter with adult services. I was about to enter hospital for a major operation, followed by several weeks of recuperation with possible follow-up treatment. I knew I was going to miss Gwen and my treatment would be unsettling for her. I wanted to make sure something was in place for Gwen, so that I could focus on keeping well whilst her Dad was at work.
With one exception, the assessments were grim. Elderly men sat behind desks and probed her with awkward questions about her sex life- something that was completely irrelevant to Gwen’s support needs. Other assessments were conducted by two professionals with clip-boards and lengthy proformas. In each case, the assessment focused on all the things Gwen couldn’t do and areas she struggled with, the “deficit assessment model”. Judgements were made, statements of need followed, but no services were provided. The only exception was a few visits from an organisation providing support for Gwen to access volunteering and employment, a fantastic service that clearly considered Gwen’s needs as an individual. I could see Gwen’s confidence being eroded on a daily basis, and felt helpless as I watched the shine go out of her eyes.
The assessments alone must have cost various organisations and authorities £1000’s. We muddled through a major operation (including a scary post op infection due to my depleted reserves), but it was a tough time all round, especially for Gwen. Without the help of friends and family, we simply wouldn’t have been able to cope. Over three months after the assessment, a phone call came through offering a service. Too little too late.
Roll forward a year and Gwen is back home. She came through her final year at university shining, with an excellent package of support provided through the university and funded by the now almost defunct Disabled Students Support Allowance. With my health deteriorating, we made a further request for support and more strangers arrived in our home for more assessments. Gwen’s needs were assessed and deemed eligible for a support service. Two months later, we’re still waiting. A complaint has been made with (so far) no response.
I sent a copy of the complaint to the officers in our local council responsible for commissioning care services. A phone call from a well-intentioned council officer followed. I was reminded that cutbacks were a major issue, and that the organisation concerned usually responded quickly and thoroughly to complaints. It was also suggested that I should ‘direct my anger accordingly’ ( to those responsible for the cutbacks rather than the support services that were suffering). Finally a suggestion was made for Gwen to have a further assessment, this time for a statutory service so her access to services would be protected in event of further cuts. No-one had ever made us aware that her previous assessments had not considered a statutory service. I came off the phone and wept with frustration.
Yes, times are tough, and budgets are tight. But the various assessments Gwen has undergone have cost £1000s. In our warped world, it costs more to assess need than it does to provide a service. Staff in our local care support agency are paid only marginally above the minimum wage, and less than the “living wage”, a paltry £7.20 an hour. Tight budgets are only part of the story. I could colour this story with more detail of my own health situation and other factors that might make us more deserving of support, but I don’t want to go down that road. This is Gwen’s life, and in a humane society everyone should have a right to basic support. Having tried to work with the system and hearing the harrowing experience of so many people trying to access support, there has to be a better way:
- The assessment model should be reviewed and overhauled immediately. Budget constraints should not stand in the way here. Better assessment might save money in the long run. The starting point should be “what would you like to do and what support do you need to get there?” Assessments should be built on a relationship of trust with local services, added to as relationships develop and needs are identified. An assessment should start with a conversation, not a clip-board. The only service provided (mentioned earlier) came out of this type of assessment, so it does work.
- Support packages should have sufficient flexibility so staff can step back when things are going well, but provide an adequate safety net to cover times of change and crisis. It is Important to encourage young adults towards independence. Whilst some would argue that the logistics of this are too tricky, surely there is scope for balancing needs across a large enough population?
- There are particular issues affecting young adults with high functioning autism that need to be taken account. It’s so often assumed that those with ASD don’t experience emotion, and have limited awareness / understanding of the needs of others. This is not true. Often their awareness is greater, but their means of communicating their thoughts and feelings, (in a way us neurotypicals can understand) is affected. It’s our world and our rules that causes problems for young people with autism, not the other way around.
- The bottom line, keep us in touch, be honest about budgets and don’t do complex assessments of need then deliver nothing at the end. This can only have an adverse impact self-esteem, setting vulnerable people back further.
Health Care Professionals, Politicians, if this was your son or daughter, what would you do in my shoes?
End note: shortly after this article was written, and following intervention by Gwen’s social worker, the care agency has made contact and will now be providing a service. They have also acknowledged our complaint.