Caring for Vulnerable Adults with Learning Disabilities

A learning disability is a common lifelong condition which is neither an illness nor a disease. The significant improvement in healthcare has meant that survival rates of people with disabilities has increased meaning there is going to be more adults with learning disabilities in the future. The department of health has also attributed the increase to better diagnosis. The term is used in relation to individuals who have the following characteristics:

• Low levels of intelligence
• Impairment of adaptive functioning
• Inability to learn new skills
• Inability to cope independently. (BPS 2000)

The most commonly diagnosed learning disabilities are autism, asperges syndrome, Down’s syndrome, Cerebral palsy, dyslexia and many others. Learning disabilities are either caused by heredity factors or environmental factors which can either be prenatal or postnatal. (Joseph 1997)

If you turn on the news or search the internet there are countless stories about how adults with learning disabilities have been shamelessly treated by either carers family and various other institutions. I consider this group to be at risk and vulnerable in the community in the UK.

In the last 40 years care of adults with learning disabilities has moved from institutional based to more community based. This has led to a greater concentration of vulnerable adults with learning disabilities in our community. Whilst care is now mostly community based most of the institutions and agencies that support this have not adequately adapted. This has led adults with learning disabilities to be at risk and vulnerable in two main ways: Healthcare and abuse.

Healthcare

An inquiry by the department of health reveals the following inadequacies in the healthcare of adults in learning disabilities:

• Employees in the NHS have limited knowledge of learning disabilities
• Insufficient attention or no reasonable adjustments are made for them
• Compliance of legislation such as disability discrimination is not effectively monitored

All these factors have led to adults with learning disabilities are 58 times more likely to die at the age of 50 than the general population. (Hollins et al 1998). This is also supported by a recent confidential inquiry into the premature death of people with learning disabilities (Heslop et al 2013) catalogued that many die because of a delay or problem with treatment. Adults with learning disabilities are more susceptible to other illnesses such as visual and cognitive impairment, obesity, schizophrenia, epilepsy, osteoporosis and gastrointestinal problems. This group of vulnerable adults is also subject to diagnostic overshadowing which is a tendency by health staff to attribute symptoms of an illness to learning disabilities whilst overlooking the actual illness.

This is why adults with learning disabilities are less likely to receive pain relief and receive palliative care (Tuffrey- wijne 2007) and if you are from an ethnic minority the percentage is higher. (Ahmed et al 2004) All this evidence is supported by an audit by NICE (National Institute for Clinical Excellence) in 2002 that said 40% of deaths in adults with learning disabilities were potentially preventable.

Abuse

Abuse can be physical, psychological or verbal but it is basically an act of neglect or an omission to act or it can occur to a vulnerable person who is coerced into doing something they have not consented to or cannot consent to. (Department of health 2000) Although victims of abuse are found across the whole age spectrum, irrespective of social class, gender or ethnicity evidence suggest it disproportionately higher in adults. Below are the main types of abuse:

• Physical abuse
• Psychological/ emotional abuse
• Financial abuse
• Sexual abuse
• Discriminatory abuse
• Institutional abuse
• Neglect abuse

Abuse is normally carried out by a person known by the victim so there tends to be some grooming that will take place before the abuse actually takes place. Adults with learning disabilities are at risk and vulnerable to abuse because some have been brought up in a setting they get told what to do and there is little independence.

The legal and the policy framework in the UK is different in each of the four countries. This has been brought about because of devolution of power. Whilst the legal and policy framework may differ slightly it is all aimed at:

• Promoting dignity
• social inclusion
• citizenship
• equal rights and opportunities
• empowerment

Currently the equality act 2010 and the care act 2014 are the main legal frameworks that protect adults with learning disabilities from discrimination in the UK. This is where you find the “no secrets” which is the current department of health guidance on dealing with abuse and discrimination in vulnerable adults.

The disclosure and barring service which was formed in 2012 is a service that was designed to avoid harm or risk of harm by preventing persons with prior criminal history from working with persons affected by learning disabilities. Also under the mental capacity act there is the protection of vulnerable adults (POVA) This enables health workers and carers to be reported of any misconduct in relation vulnerable adults.

Advocacy is another part of the policy framework that relates to adults with learning disabilities. In contrast to empowerment advocacy does not give power but gives the right to make representation to those in positions of power.

The principles of advocacy are nurturing, witnessing, supporting, translating, protesting, listening, informing, liaising, negotiating and encouraging all aimed at improving the wellbeing of the individual. There are different types of advocacy:

• citizen advocacy
• self advocacy
• group advocacy (Payne 1995)
• professional advocacy

In the Uk there are plenty of organisations and opportunities for advocacy such as the care quality commission, various charities which specialize in helping adults with learning disabilities.

References

1. Bartlett, A. and Hassell, Y. (2001) Do women need special secure services? Advances in Psychiatric Treatment, 7, 302±309.
2. Mental health services for adults with intellectual disability: Strategies and solutions, Edited by Nick Bouras and Geraldine holt 2010 psychology press.
3. Morgan C, Ahmed Z, Kerr M. Health care provision for people with a learning disability: record-linkage study of epidemiology and factors contributing to hospital care uptake. British Journal of Psychiatry. 2006; (176): 37-41.
4. Tuffrey-Wijne I, Hogg J, Curfs L. End of life and palliative care for people with intellectual disabilities who have cancer or other life-limiting illness: a review of the literature and available resources. Journal of Applied Research in Intellectual Disabilities. 2007; 20(4): 331-344.

Internet References

1. www.bild.org.uk/disability
2. www.gov.uk/theadultsocialcareoutcomesframework2013/14
3. www.nhs.uk/livewellwhatislearningdisability
4. www.rcn.org.uk/learningdisability
5. www.scie.org.uk/dignityincare