Siblings of disabled people know them best. Let’s use their insight

A disabled person’s care is hugely improved if their family and providers collaborate effectively. My charity’s guides help.

Twins David (left) and Luke Bridle, 11, pictured after Luke heroically saved David from drowning in the bath. Discovery

Monica McCaffrey, The Guardian 7 August 2018

Almost six years ago, a government report stressed how crucial family involvement is in the support of people with learning disabilities and autism.

Transforming Care: a National Response to Winterbourne View hospital was sparked by abuse at an NHS-funded inpatient unit in Gloucestershire. It stated that the “individual and her/his family must be at the centre of all support”, and added that if people complain about their relative’s care, they must be listened to and get the “advice they need to make that complaint”.

Organisations that recognise and value siblings aim to involve them in their disabled brother or sister’s support

Despite this recommendation, my organisation, Sibs, the only UK charity representing the needs of siblings of disabled children and adults, regularly receives requests for advice from people wanting more involvement in their brother or sister’s care. Siblings often have untapped expertise about their relative’s needs and preferences, but lack the confidence to act on that. Care providers, meanwhile, do not always seek out family knowledge. Recent inquests into the deaths of people with learning disabilities, such as those of Richard Handley and Danny Tozer, and the report into the death of Nico Reed, have highlighted the need for better communication between care staff and families.

Sibs has launched a series of practical guides that outline how care staff and families can collaborate better to improve care. Organisations that recognise and value siblings, we believe, should aim to involve them in their disabled brother or sister’s support. Providers can demonstrate their commitment to communicating with, listening to and involving relatives by signing a statement of intent, (Sibs has created a template for this).

Although the guides aim specifically to empower siblings to act on behalf of their brother or sister, they are relevant to other family members or carers. So how should providers and relatives collaborate? A provider’s approach should start from the assumption that siblings simply want the best for their brother or sister. Good practice includes listening to siblings, recognising their expertise about medical or behavioural needs and being aware of the legal permissions that families may have to make decisions about their brother or sister’s finances and health. Providers must involve families in best interest meetings when someone lacks mental capacity to make certain decisions. The Mental Capacity Act code of practice [pdf] sets out how staff should involve family members.

Collaboration can mean inviting siblings to meetings and liaising when completing updates of their brother or sister’s summary of care needs. Other steps include providing a copy of all relevant policies and procedures, such as those on complaints and safeguarding.

Siblings, meanwhile, will enjoy a more positive relationship with staff if they feel confident in their expertise about their brother or sister’s needs. They must be able to communicate clearly and assertively with managers and staff about what is working well and what is not. Our new resources include information on topics to help siblings be better informed, with subjects including making complaints and managing finances.

It is important for siblings to understand mental capacity legislation. Families often wrongly assume that being next of kin gives someone legal rights, but when a learning disabled or autistic person becomes an adult, siblings and parents cannot continue to make decisions for them. If a sibling disagrees with a care provider’s decision, they can ask for a best interests meeting to discuss it.

If a sibling is concerned that the quality of care is poor, the first step is to try to resolve it informally with the member of staff most closely connected to the issue. If this fails to resolve matters, the complaint must be formalised in writing. Care providers should have a formal complaints procedure and a duty to respond within a certain timeframe. A culture of neglect will not be resolved by the complaints route alone, so if siblings are still unhappy with a response, they should take it to an ombudsman.

If the concern is about neglect or abuse this must be reported as a safeguarding issue – and if there is immediate danger, it should be reported it to the police straight away.

As a simple example of successful collaboration, Tessa* liaises with care staff to oversee her sister Emma’s* care in supported accommodation. Emma, who has learning disabilities, autism, a heart condition and diabetes, started buying ice cream twice a day from the corner shop. Staff wanted to support Emma’s choice to treat herself. However, Tessa worried about her sister’s diabetes so asked for a best interests meeting. Staff discussed the importance of personal choice, but agreed that Emma does not have the mental capacity to understand the consequences of high blood sugar levels. An honest discussion followed between Tessa and staff, which led to the drafting of a new care plan. This enabled staff to support Emma to restrict her sugar intake.

The best care providers recognise the value in embracing a family’s involvement and understand that including relatives in the life of a person with learning disabilities or autism is key to improving their quality of life.

* Names have been changed

Monica McCaffrey is chief executive of the charity Sibs

Source The Guardian


Also see
Charity highlights role of siblings in supporting adults with a disability The Guardian
Luke rescues his twin brother from drowning at home Dsicovery
The government must not force me and other disabled people out of our homes The Guardian
Winterbourne View care home staff jailed for abusing residents The Guardian

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