‘I feel embarrassed about the delays getting care packages signed off’

A social worker discusses the obstacles she faces in securing specialist care for people with autism and the importance of advocating for their needs

By Lucy Scanlon

The main room is too loud. The lighting is too bright.

She cannot tolerate the taxi driver putting her seatbelt on.

These are the difficulties that one of my clients is experiencing when she attends a local day service. The service is primarily for adults with learning disabilities, but she doesn’t have a learning disability herself. She has autism.

I’ve had a meeting with the manager of the service about pursuing some adjustments, and these have been made. But I continue to feel this person’s needs are falling between the cracks and there should be more suitable options available.

‘Embarrassing delays’

A lack of local, autism-specific services is just one of the obstacles I come up against in my role as a social worker. I work specifically with people who have autism, to carry out social care interventions, and support people to create and implement self-directed care packages.

My role is also the only one of its kind in the council, so some of my time is dedicated to responding to phone calls and emails from health and social care professionals, who may wish to discuss autism cases and seek advice. I have developed my knowledge of autism through involvement in the diagnostic process, and this helps me to understand the difficulties my clients face, particularly when trying to access services in the local area.

Another issue I face is a delay in getting care packages signed off. These delays are happening because of the time pressures on local mental health professionals, who are responsible for authorising the care. In mental health, higher risk issues have to take priority.

One client, who simply needed an extra hour of support to maintain his flat, has been waiting several months. I feel embarrassed about the delay and frequently apologise. I have to explain that it may be weeks, if not months, before there is progress.

‘An ongoing battle’

A key part of my role is to improve access to GP surgeries, something that all my clients find challenging and anxiety provoking. I use a graded approach to help reduce anxiety around change, as well as motivational interviewing to enable clients to recognise the long-term benefits of being able to independently access their surgery.

Recently one of my clients agreed to make the journey to her surgery independently, on the proviso that I would be there to meet her and support her to communicate with the GP. On my arrival, she informed me that she’d been called in to see the GP early. She’d communicated the issue to the GP and received a prescription. This was an incredible achievement for the client, who finds unexpected changes difficult to cope with.

I also try and support clients to access GP services online where possible, as this can alleviate the difficulties in making appointments over the phone. But requesting reasonable adjustments for people with communication difficulties is an ongoing battle. When I succeed in acquiring adjustments, they are often forgotten by the next receptionist on duty.

Supporting clients to use online systems can be an intensive piece of work in itself: a new process, passwords to remember and a minefield of options. But I have had some success – and empowering clients to access their GP independently can reduce the amount of ongoing support they need from care agencies.

‘Hopes for the future’

It is positive that my position exists within the council and I really hope that in the future specialist intervention work for people with autism is allowed to continue. This has become a rarity in adult social work, where assessments are often quickly followed by a care package, and mental health teams only have time to respond to crises.

I will continue to advocate for the needs of autistic people to be prioritised equally to those of people with learning disabilities or mental health conditions – and reasonable adjustments made to prevent them from slipping through the cracks in social care provision.




More from Community Care

9 Responses to ‘I feel embarrassed about the delays getting care packages signed off’

  1. londonboy August 8, 2017 at 10:15 pm #

    So who carries out this role for autistic children in Care?

    Let me guess who it is’int..The Disability/Transitions Team ..but no answers on who does – but that is OK because autistic children in Care are invisible when it comes to policy and provision within and beyond Care.

    For anyone interested in the numbers involved ( clearly not the DfE) this is a good study

    • Steve August 16, 2017 at 6:31 am #

      The transition team do in Stoke.

      • londonboy August 20, 2017 at 9:41 pm #

        Thanks Steve
        My experience (albeit limited) is that the a disability team will not take on a looked-after-young person’s case unless they have profound multiple impairments. If a looked-after yp ‘only’ is autistic, then the virtual school head takes on the role of giving oversight/support via EHC’s in the school setting. It is good to know that in Stoke the disability team are proving holistic support to autistic looked-after-children including support around health and care needs.

  2. Finola Moss August 9, 2017 at 10:28 pm #

    Years were spent campaigning, drafting and lobbying by charities for an Autism Act 2008 but this has proved useless in obtaining specialist autism services if indeed these exist.

    As enforcement against LAs and other organisations, is by way of judicial review by individual families and there is no legal aid, and the system of judicial review is almost, in any event, legally impossible to obtain, and an applicant will be faced with bankrupting costs of LA/NHS if as is likely they lose.

    So the Act is ignored, yet, when the autistic are removed at 18 from their family, as they are being, the LA/NHS pay out on the severity of their condition, often as much as £13,000 per week to secure private mental wards, to rapidly tranquilise the autistic, and then they are being placed in ‘community living’ for life under the MCA, at an average cost of £6,000 per week.

    Yet despite this amount being spent, rarely is autism specialist care and the homes are mixed disability groups. Google finola moss for details.

    • Tom J August 10, 2017 at 3:24 pm #

      Thank you for this response and the link. Very interesting.

    • Steve August 16, 2017 at 6:34 am #

      While I would agree with your initial comments regarding no specialist services for people who have autism, you financial figures are way off in my experience.

  3. Hellena Kambadza August 10, 2017 at 3:58 pm #

    I want to believe there is a solution for this special group of people. If the powers that be can spend so much money to place them in wrong places, surely that money can be used to start bespoke services that will ensure individuality and proper care. I had the opportunity to manage such a service and the outcomes were amazing to say the least. Unfortunately, it boils down to power and resources. The government should seriously look into this and acknowledge that there is a need to support people living with autism. The vision to build teams around people and work together with families works but it requires support in terms of money.

  4. Jackie August 12, 2017 at 2:54 pm #

    Would love there to be specific roles to work with people with Autism these group of people are not receiving the services they should.

  5. Steve August 16, 2017 at 6:47 am #

    Why would you place someone in a learning disability day service who has Autism but no associated learning disability. This wil only perpetuate the belief that Autism is a learning disability and current services are suitable and appropriate to meet need, when they are clearly not. If specialist services aren’t out there, and your LA is not commissioning them, then why not promote the use of a direct payment to offer something more bespoke. I would be pretty sure that there are people with Autism (and their families) that could start a local group to identify the issues and start to identify appropriate support.

    The delays in sign off that you speak off are also very unacceptable and I’m pretty sure not legal. Look up Luke Clements thoughts on funding panels. If you have identified a unmet eligible need, there is a duty to meet that need. Any delay is unacceptable and should be challenged on a legal basis.