Summary: Mrs Y complains about the Council’s and Trust’s actions when providing care and support for her adult daughter Miss X. There was fault by the Council and the Trust in the way it assessed Miss X and this has caused some uncertainty about her care planning. I recommend a re-assessment with a specialist autism assessor to remedy the injustice. I also found fault with the delayed complaints handling by both bodies and their failure to consider a ‘joint response’ which caused injustice to Mrs Y. I have made recommendations to remedy the injustice.

The complaint

1. Mrs Y complains on behalf of her adult daughter Miss X about Hertfordshire County Council (the Council) and Hertfordshire Partnership University NHS Foundation Trust’s (the Trust) actions in the provision of care and support for Miss X.
2. Specifically, Mrs Y says:
1. the Council and Trust both failed to provide appropriate services;
2. that explicit consent was not sought from them for referrals to other services;
3. the Trust offered cognitive behaviour therapy (CBT) for Miss X’s anxiety and Mrs Y says she has never been diagnosed with this;
4. the Trust discriminated against Miss X by not making reasonable adjustments and providing appropriate paperwork; and
5. that both bodies ignored her complaints until November 2017.

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The Ombudsmen’s role and powers

3. The Ombudsmen have the power to jointly consider complaints about health and social care. Since April 2015, these complaints have been considered by a single team acting on behalf of both Ombudsmen. (Local Government Act 1974, section 33ZA,as amended, and Health Service Commissioners Act 1993, section 18ZA)
4. The Ombudsmen cannot decide what level of care is appropriate and adequate for any individual. This is a matter of professional judgement and a decision that the relevant responsible body has to make. Therefore, my investigation has focused on the way that the body made its decision.
5. The Ombudsmen investigate complaints about ‘maladministration’ and ‘service failure’. We use the word ‘fault’ to refer to these. If there has been fault, the Ombudsmen consider whether it has caused injustice or hardship (Health Service Commissioners Act 1993, section 3(1) and Local Government Act 1974, sections 26(1) and 26A(1), as amended).
6. The Ombudsmen provide a free service but must use public money carefully. They may decide not to start or continue with an investigation if they believe the injustice is not significant enough to justify their involvement. (Health Service Commissioners Act 1993, section 3(2) and Local Government Act 1974, section 24A(6), as amended)
7. If it has, they may suggest a remedy. Our recommendations might include asking the organisation to apologise or to pay a financial remedy, for example, for inconvenience or worry caused.  We might also recommend the organisation takes action to stop the same mistakes happening again.
8. If the Ombudsmen are satisfied with the actions or proposed actions of the bodies that are the subject of the complaint, they can complete their investigation and issue a decision statement. (Health Service Commissioners Act 1993, section 18ZA and Local Government Act 1974, section 30(1B) and 34H(i), as amended)

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How I considered this complaint

9. I have spoken with Mrs Y and considered the complaint information she has provided. I have made enquiries of the Council and Trust and considered their responses. I sent Mrs Y, the Council and the Trust my draft decision and read their responses.

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What I found

Relevant guidance

Assessment

10. The Care Act 2014 require local authorities to carry out an assessment for any adult with an appearance of need for care and support. The assessment must be of the adult’s needs and how they impact on their wellbeing and the results they want to achieve. It must also involve the individual and where suitable their carer or any other person they might want involved. The Council must carry out the assessment over a suitable and reasonable timescale considering the urgency of needs and any variation in those needs.

Eligibility

11. The Care and Support (Eligibility Criteria) Regulations 2014 sets out the eligibility threshold for adults with care and support needs and their carers. The threshold is based on identifying how a person’s needs affect their ability to achieve relevant outcomes, and how these impacts on their wellbeing. To have needs which are eligible for support, the following must apply:
1. The needs must arise from or be related to a physical or mental impairment or illness.
2. Because of the needs, the adult must be unable to achieve two or more of the following:
• Managing and maintaining nutrition;
• Maintaining personal hygiene;
• Managing toilet needs;
• Being appropriately clothed;
• Being able to make use of the adult’s home safely;
• Maintaining a habitable home environment;
• Developing and maintaining family or other personal relationships;
• Accessing and engaging in work, training, education or volunteering;
• Making use of necessary facilities or services in the local community including public transport, and recreational facilities or services; and
• Carrying out any caring responsibilities the adult has for a child.
1. Because of not achieving these outcomes, there is likely to be, a significant impact on the adult’s well-being.
2. Where local authorities have determined that a person has any eligible needs, they must meet these needs. When a local authority has decided a person is or is not eligible for support it must provide the person to whom the determination relates (the adult or carer) with a copy of its decision.

Autism

12. The Autism Act 2009 requires publication of an Autism Strategy. ‘Think Autism’ was published in 2014 and updated in 2015. This provides guidance to local authorities and NHS bodies on their functions for people with autism. The Guidance says autism training should be available to all staff working in health and social care. It also talks about preventative support, to help autistic people cope with everyday life but also specifically stressful events such as moving home.
13. From April 2015 the Care and Support (Assessment) Regulations 2014 require the person carrying out the assessment to have ‘suitable skills, knowledge and competence in the assessment they are undertaking’.
14. The National Institute of Clinical Excellence (NICE) Quality Standard on Autism (2014) sets out the minimum standards for the delivery of services to those with autism. It says, ‘All health and social care practitioners involved in working with, assessing, caring for and treating people with autism should have sufficient and appropriate training and competencies to deliver the actions and interventions described in the quality standard’.
15. Hertfordshire County Council and the local CCGs (East and North Hertfordshire Clinical Commissioning Group and Herts Valleys Clinical Commissioning Group) run the ‘All Age Autism Partnership Board’ comprising autistic people, their families, external groups and other organisations. It has produced an Autism Strategy which says:

“Autism is a lifelong, complex spectrum of conditions that affects how a person communicates with and relates to other people and the world around them; it affects every individual differently and co-occurring conditions are very common. ...There are 4-5 times as many males diagnosed as females, but it is well recognised that girls and women often present differently and so may be missed altogether or misdiagnosed with anxiety, depression, OCD or eating disorders”.

Complaint regulations

16. The Local Authority and Social Services and National Health Service Complaints (England) Regulations 2009 set out how local authorities and NHS bodies should consider complaints made about social services and health functions. S9 says bodies involved in complaints about their actions must co-operate in handling the complaint and ensuring the complainant receives a co-ordinated response to the complaint. They must agree who will lead on these actions and provide the other body with all necessary information relevant to consideration of the complaint.

Key events leading to the complaint

17. Miss X is a young adult who lives with her parents. She has been diagnosed with “highly complex needs”. She has Atypical Autism, Epilepsy, learning disabilities, dyslexia, dyspraxia, dyscalculia, asthma and Ehlers Danlos Syndrome. She was also diagnosed with a “communication disorder affecting both her receptive and expressive language skills”.
18. Since 2012 Miss X has received 4 hours a week in direct payments to help her take part in community activities and increase her confidence to develop friendships.
19. In 2017 Mrs Y asked the Council to assess Miss X. She pointed out Miss X was due to finish her education in June of that year. She said the Council needed to explore Miss X’s needs and wishes with a view to supporting her future independence and employment (paid or voluntary).
20. In March 2017 a social worker and a learning disability nurse from the Council’s ‘0-25 together service’ assessed Miss X.
21. The 0-25 together service is the Council service for children and young people with disabilities. Its definition of disability includes people with a mental impairment, and it says this covers a range of conditions including learning disability, autism and developmental delay. It says the services it provides include assessments, direct payments, nursing input, preparing for adulthood and signposting to services.
22. The Council staff discussed Miss X’s needs for independent living skills, occupational therapy and speech and language therapy. They found Miss X met the eligibility criteria under the Care Act and was eligible for services.
23. In summary, the completed assessment said:
• Miss X wanted to be more independent, including exploring independent living and employment options;
• Miss X was able to speak and express herself. But she used ‘repetitive learnt language’ and previous assessments had recorded Miss X responded in a way she thinks others want her to behave.
• Miss X has trouble processing language and communication.
• Miss X did not have any mental health needs. However, she became anxious if in the community alone. It said if Miss X’s anxiety became worse, she could be referred to the mental health team.
• Miss X said she struggled with processing sounds. The nurse said she would make a referral to the speech and language team.
• It is also recorded that Miss X needed support for managing and maintaining her nutrition. As Miss X struggled with peeling, chopping foods and opening cans the nurse said she would make a referral to Occupational Therapy.
• The statement also ‘signposted’ Miss X to various organisation for advocacy support and employment assistance.
24. Following the assessment, the nurse referred Miss X to the Single Point of Access Service for further support with independent living skills and auditory processing.
25. The Trust reports that a clinician in the Single Point of Access assessment team received the referral and sent this to another part of its service: the Wellbeing Service.
26. The Council’s website says the Wellbeing Service provides therapy and practical support for residents experiencing mental problems such as worry, low mood and stress. It explains one of the therapies it uses is cognitive behavioural therapy (CBT) which is a talking therapy.
27. In July the 0-25 Together Service wrote to Mrs Y to say Miss X does not meet the criteria for learning disability services as she was studying Inclusive Performance Arts Theatre.
28. In July Mrs Y complained stating the response was discriminatory and not based on an individual assessed need.

The Council’s complaints response

29. The Council responded to Mrs Y’s complaints in August, November and December 2017.
30. In summary it said the assessment carried out in March found a need for speech and language therapy so a referral for this had been made. It said the officers had (in March) told them referrals would be made to the Community Access and Treatment team. This was so that it could arrange to carry out the assessment into the Miss X’s independent and daily living skills.
31. The Council said the nurse had written to Miss X to confirm she had made the referral to occupational therapy (OT). It said staff visited Miss X again in April when further information and advice was provided and visited her in July to discuss progress.
32. In answer to Mrs Y’s concerns - that referrals had been made without their consent - the Council wrote that its officers had checked this with them when discussing the need for the referral during the assessment visit.
33. Due to the Trust’s decision to forward the referral to a different service, the Council advised this part of their complaint had been sent to the Trust.

The Trust’s complaints response

34. The Trust responded in December 2017 to Mrs Y’s complaint that the Wellbeing Service had not made reasonable adjustments for Miss X to access its services. And that the risk assessment had asked distressing questions. The Trust acknowledged receiving several complaint letters from Mrs Y and apologised for its delay in responding.
35. The Trust’s Wellbeing Service provides the Improving Access to Psychological Therapies (IAPT) provision. It said the referral it received requested support for Miss X on managing anxiety connected to seizures and unfamiliar life situations. As a first step, it needed to carry out a risk assessment which required direct questions to be answered on self-harm and suicide.
36. The Trust accepted it had not dealt properly with the referral and assessment. It said how it asked personal questions should have been adapted and adjusted to Miss X’s needs. It apologised for this and for Miss X not being offered assessment sheets to be completed separately. It also apologised for the Trust’s failure to discuss the onward referral with the family. It said there were no specialist workers for autism employed in the Wellbeing Service and that it was ‘working towards’ helping people with special needs.
37. In terms of learning from Mrs Y’s complaint it said it would adapt the referral forms to ensure information about autism, learning disabilities and language issues was collected at first contact. It apologised for the errors and said staff should listen to the views of carers and parents. It said this would be reinforced with the clinician who carried out the assessment and would also be shared with the whole team.
38. In answer to Mrs Y’s specific question it said autism training was not mandatory for all staff.

Key events in 2018

39. In January 2018 Mrs Y complained to the Ombudsmen. Around the same time Mrs Y had another meeting with the Council. The Council wrote to confirm this discussion. It apologised for the 14 weeks it took to complete the care needs assessment. It went on to say it would make another referral to a different health worker when the referring (council) officer returned to work (which it anticipated would be in about a month). It added it had no power over decision-making in the NHS and it was for NHS staff to decide whether Miss X met their criteria for services.

Council response to our Enquiries

40. The Council’s position is that assessment outcomes were discussed and agreed with both Miss X and Mrs Y. It says it provided information and advice about contacting a voluntary service to explore opportunities such as working in a library. It says Miss X took up the option to work at the library.
41. The Council says it has offered other information on community facilities which had been discussed during the assessment. It says these turned out to be unsuitable for Miss X.
42. The Council reports that, in August 2017, it referred Miss X to a project to help her with travel training, budget management, gaining employment and developing her confidence. It said there was a problem with the project not being able to appoint a mentor until December. To remedy this the Council says it arranged extra payments via the Direct Payment account to allow Miss X to secure a service that she had requested.
43. The Council says it accepts there have been some delays in ‘connecting’ Miss X to community services. It says it understands Miss X’s and her family’s frustration. It considers it was ‘assured’ that Miss X remained connected with activities to build her confidence and independence due to the Direct Payment that remained in place throughout.
44. The Council also says the family can contact their GP with a referral for ‘speech and language therapy’.
45. It has confirmed that Miss X is currently receiving 11 hours a week in direct payments comprising of 4 hours for community activities and 7 hours for Miss X to develop her independent living skills.

Trust response to our Enquiries

46. In response to my enquiries the Trust has told me it has now arranged for specialist autism training for Trust staff.
47. It also says it has adapted its assessments to ensure service users who need reasonable adjustments can effectively participate in an assessment. This includes visual prompts and easy read versions and new guidance for staff.
48. It explains the eligibility criteria for the Specialist Learning Disability Services (SLDS). It says eligible adults must have impaired intelligence and impaired social functioning. It could include adults with autism who have learning disabilities but not those with a “higher level autistic spectrum condition who may be of average or even above average intelligence”.
49. In terms of governing guidance and staff specialisms it says the Specialist Learning Disability Service is aware of the NICE Quality Standard on Autism (2014, updated 2015) which sets out the minimum standards for the delivery of services to those with autism. It provides advice and support to ‘non- specialist’ colleagues as and when needed.
50. It says it did not appear that the clinician in the assessment team passed the case to SLDS. However, it would now carry out a ‘joint’ assessment now if Miss X and Mrs Y wanted this.

My analysis

51. Mrs Y specifically complains the Council and Trust:
52. a) failed to provide appropriate services; The Council says the needs assessment was started on 27 March and actions were agreed with Mrs Y and Miss X on 26 April. There is evidence of some fault in the delay in connecting Miss X to services. The Council’s referral to the service providing independent living skills did not take place until August and this service did not have a mentor free until December. But I also note the Council says Miss X did not confirm until July she would not be pursuing further studies so employment support would be needed. And the Council says it provided additional direct payments for Miss X to purchase services from another provider instead to cover August to December. The injustice arising appears to be that Miss X and Mrs Y’s expectations were raised by the referral to the Trust in April for services. Unfortunately for Miss X, the Trust decided Miss X did not meet its criteria for Specialist Learning Disability Services. I shall address this injustice further in my recommendations.
53. b) that explicit consent was not sought for referrals to other services; I have not seen information indicating the Council or the Trust are at fault here. The care assessment document includes a standard disclaimer stating, ‘this information may be shared with other professionals/agencies which, where relevant includes the Police, in order to provide the support you need’. The referral document to the Trust also asks staff to tick to say if they have reminded service users their information will be shared with the Trust. It has been ticked.
54. c) The Trust offered CBT for a condition Miss X has never been diagnosed with; The Trust advised Mrs Y and Miss X the care assessment documents were clear that Miss X suffered anxiety around managing unfamiliar situations and not knowing if a seizure might occur. It says the decision to refer to the Wellbeing Service and not the Specialist Learning Disability Service was a professional judgement made by a clinician. I do not see evidence of fault here.
55. d) The Trust discriminated against Miss X by not making reasonable adjustments and providing appropriate paperwork; The Trust has explained that it has now arranged for staff to undergo specialist autism training which will cover making reasonable adjustments for autistic people. It also says the questionnaires have been adapted and new guidance will be provided to both staff and service users. The Trust was at fault in not making reasonable adjustments for Miss X to access CBT. However, I do not consider the injustice was significant as Mrs Y and Miss X decided CBT was not appropriate and did not continue with the CBT assessment process.
56. e) that both bodies ignored her complaints until November 2017; It does seem that both bodies delayed in responding to Mrs Y’s complaints until the Council responded in November 2017 and the Trust in December 2017. The Council has told me that Mrs Y did not complain to it about the Trust. This is not correct as the Council’s response in November says it has sent Mrs Y’s complaint (about being referred to Wellbeing Services instead of Specialist Learning Disability Services) to the Trust. With respect to the Trust, it apologised in December for its delay in responding to Mrs Y’s complaints made back in July and October. I consider the Trust has acted with fault here too in its failure to consider if a joint response was appropriate. I consider both bodies acted with fault in not according with the duty on health and council bodies to coordinate a complaint response. The injustice caused to Mrs Y was inconvenience and uncertainty.

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Recommendations

57. I recommend the Council and the Trust send Mrs Y an apology for the failure to send a timely and joint response to her complaint within one month of my final decision.
58. I also consider both bodies should review their complaints procedures and provide staff training on the requirements for joint working in the complaint regulations. They should provide evidence of this happening within three months of the final decision.
59. While I welcome the Trust’s offer to now assess Miss X, I recommend the Council and Trust commission a specialist autism assessor experienced in assessing girls and women with autism to reassess Miss X’s care and support needs. This assessment should have started within one month of my final decision with an aim to complete within two months.

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Final decision

60. There was fault by the Council and the Trust, in the way they assessed Miss X, and this caused uncertainty over her care planning. The Council’s and Trust’s offer to assess Miss X by a specialist autism assessor remedies this injustice.
61. I also found fault with both bodies delayed complaints handling and failure to consider a ‘joint response’ which caused injustice to Mrs Y. I have made recommendations to remedy the injustice.
62. I have completed my investigation.

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Investigator's decision on behalf of the Ombudsman