CQC Quality Statements

Theme 1 – Working with people: Equity in experiences and outcomes

We statement

We actively seek out and listen to information about people who are most likely to experience inequality in experience or outcomes. We tailor the care, support and treatment in response to this.

What people expect

I have care and support that enables me to live as I want to, seeing me as a unique person with skills, strengths and goals.

1. Introduction

Not all disabilities can be seen from a person’s outward appearance. Hidden disabilities are sometimes also called invisible disabilities and include, for example, mental and physical health problems and developmental disabilities.

Following their investigation of three complaints against London Councils, the Local Government and Social Care Ombudsman stated local authorities should check their procedures to avoid disadvantaging people with hidden disabilities.

In each of the three cases the local authorities did not do enough to help people use their services. This included not making reasonable adjustments to help a woman with autism to repay overpaid housing benefit, and not helping a man with severe dyslexia to deal with parking tickets and permits.

Whilst the focus of this chapter is local authorities, the information is relevant to all those working with adults with care and support needs. It outlines different types of hidden disabilities and how staff should be aware of and respond to such issues.

2. Types of Hidden Disability

Whilst there is now a better understanding of some of the conditions that constitute hidden disabilities, it is vital that all interactions with adults, including assessments, are conducted with hidden disabilities in mind. This is to ensure all relevant care and support issues that the adult has are identified, to ensure they receive the appropriate services relevant to their individual needs. This process is vital to ensure they are not discriminated against, as a result of a hidden disability being missed or reasonable adjustments not being made.

The lists below are not exhaustive; there will be other physical and mental health problems and other conditions that result in hidden disabilities.

2.1 Mental health

For many adults who suffer with mental health problems, their issues may not be immediately obvious and can be misunderstood. Without good working relationships and without a member of staff undertaking a comprehensive assessment with the adult, key aspects of the care and support that they require may be missed and their problems, therefore, could be compounded. Such issues may include depression, stress, bipolar disorder, psychotic and neurotic thought processes and suicidal thoughts.

2.2 Developmental disabilities

Other conditions which can be hidden include:

  • Dyslexia (development of literacy and language related skills affected);
  • Dyspraxia (perception, language and thought processes affected);
  • Attention Deficit Hyperactivity Disorder – ADHD (inattentiveness and hyperactivity-impulsivity);
  • Autistic spectrum disorder (communication, relationships with others affected);
  • Asperger’s syndrome (an autistic spectrum disorder).

Adults with such conditions have often developed ways of coping which may make it more difficult for staff to identify them as disabled. Even when someone can function well in many situations, this does not mean they are not disabled.

Issues to be aware of include:

  • communication issues (verbal and non-verbal);
  • understanding instructions;
  • the speed at which they process things; and
  • interpretation of social situations.

Some of these conditions may also co-exist with other hidden disabilities.

See Autism UK: What is Autism and Related Conditions for more information.

Adults with a learning disability or autism may have needs for care and support (within section 9 of the Care Act 2014 – the duty to assess – see Assessment chapter).

The Autism Act 2009 came into force in January 2010. Under the Act the Government has to publish and keep under review an Autism Strategy, as well as guidance for implementing the strategy which requires local authorities and NHS bodies to act (see Adult Autism Strategy: Supporting its Use (Department of Health and Social Care).

2.3 Physical health issues

Not all physical health problems are clearly visible. There are many conditions which can be hidden to include hearing and sight impairments, chronic fatigue syndrome / myalgic encephalomyelitis (ME), chronic pain and chronic illnesses such as fibromyalgia, epilepsy, diabetes, kidney failure and sleep disorders.

Such conditions should also be taken into consideration as a hidden disability.

2.4 Other issues for consideration

2.4.1 Mental capacity

See also Mental Capacity and Code of Practice chapter

Adult social care staff and other staff working with adults should be particularly mindful in considering mental capacity issues for adults with hidden disabilities when:

  • assessing needs and make care planning decisions;
  • conducting safeguarding enquiries;
  • when there is a dispute over ordinary residence.

2.4.2 Human rights

See also Equality, Diversity and Human Rights chapter

Article 3 of the Human Rights Act 1998 imposes a duty to take reasonable steps to provide effective protection to children and other vulnerable persons whom the state knows or ought reasonably to know, are being subject to inhuman or degrading treatment (see also Z v United Kingdom Application No 29392/95, (2001) CCLR 310, ECHR).

3. Equality Act 2010

See also Equality, Diversity and Human Rights chapter

It is essential that people with hidden disabilities are not either directly or indirectly discriminated against, that is they should have the same level of assessment, care and support planning, care and support services and other opportunities as those who do not have a disability.

“The Equality Act 2010 requires councils to anticipate the needs of people who may need to access their services. This means when councils are alerted to the fact someone might need to be treated in a different way, they should ask that person what adjustments are needed, and consider whether these are reasonable…. We recognise the significant challenges faced by public service providers in adapting their processes to the needs of people who may require adjustments, particularly where the services have been automated. But this is a duty councils must meet and needs they must anticipate.” Local Government and Social Care Ombudsman

4. Working with Adults who may have Hidden Disabilities

See also Information and Advice chapter and Assessment chapter.

Staff working with adults should be aware that they, or their carer, may have hidden disabilities, particularly those who are having contact with the service for the first time. It is important to not make quick judgements about a person based on initial communication. This is particularly relevant for staff in information and assessment and “front door” services.

Where there are communication issues or other factors are present that are not otherwise easily explained, staff should consider whether hidden disability / disabilities may be the cause and carry out further investigations as appropriate.

When a hidden disability is discussed with an adult and / or their carer, the member of staff should record both the discussion and the hidden disability in the adult’s case records (see Case Recording Standards and Information Sharing). Where the adult already has a care and support plan, this may mean a review is required (see Review of Care and Support Plans) and adjustments to the plan may be required to respond to the newly disclosed / diagnosed disability which may change the person’s eligible care needs within the care and support plan.

See Appendix 1: Case Study

5. Blue Badge Scheme

See also Hidden Disabilities

The Blue Badge scheme has been extended to include people with hidden disabilities, such as autism and mental health conditions, for example.

The criteria have been extended so that people are eligible who:

  • cannot undertake a journey without there being a risk of serious harm to their health or safety or that of any other person;
  • cannot undertake a journey without it causing them very considerable psychological distress;
  • have very considerable difficulty when walking (both the physical act and experience of walking).

This is particularly important for adults who find leaving their house a challenge. This may involve detailed preparations and sometimes overwhelming anxiety about plans going wrong or not being able to find parking spaces. Some autistic people might be unaware of road safety issues or become overwhelmed by busy or loud environments.

For further information see: Running a Blue Badge parking scheme: Guidance for local authorities (UK Government) 

6. Training and Awareness

Local authorities and other service providers should ensure they have a disability policy, ensure that staff are aware of hidden disabilities and know how to respond appropriately.  It should be addressed as part of general equal opportunities training.

7. Further Reading

7.1 Relevant chapters

Equality, Diversity and Human Rights

Assessment

Mental Capacity and Code of Practice

7.2 Relevant information

Councils need to check how they help People with Hidden Disabilities (Local Government and Social Care Ombudsman)

Appendix 1: Case Study

This case study refers to a situation in which the police restrained a young autistic man and failed to take special care: Commissioner of Police for the Metropolis -v-ZH [2013] EWCA Civ 69, 2013 16 CCLR 109

ZH suffered from severe autism and learning disabilities and became obsessed by the water at a local swimming pool. His carers knew if they attempted to touch to remove him that he would jump into the pool fully clothed. The police were called and informed that ZH was autistic but despite the warning they touched him whereupon he jumped into the pool. The police pulled ZH from the pool, restrained him before taking an agitated ZH to the police station. ZH sued the police.

The Court of Appeal held that the police had breached ZH’s human rights and were guilty of assault and false imprisonment and had breached the Disability Discrimination Act 1995. The police argued under the Mental Capacity Act 2005 that they were permitted to perform acts in relation to the care and treatment of persons lacking capacity where it was in their best interests. Their defence failed because their actions lacked reasonableness, practicability and appropriateness. The police should have consulted with the carers on how best to manage ZH’s behaviour and could not have held a reasonable belief that their actions were in ZH’s best interests.

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