INTERVIEW: The government should not overlook the importance of care PAs at this time

Personal assistants (PAs) provide valuable care and support to thousands of disabled people in our society, with news that local councils can declare themselves in a state of ‘emergency’ and change care provided, what is the reality of this decision?

Martyn Sibley and dog, Sunny

Martyn Sibley has authored books, runs Disability Horizons and lives with spinal muscular atrophy (SMA). Living with SMA, Martyn employs a team of care PAs to assist him with daily tasks.

Now self-isolating, Martyn’s care has continued, although from the comfort of his own home. Support Martyn receives ranges from turning at night, bathing and dressing to cleaning his home and, prior to self-isolation, attending Martyn to work and social meetings.

The care Martyn receives allows him to live independently. However, with news announced earlier in the week that a bill would be passed that could allow councils to prioritise who and what type of needs will be met, the care could be paused.

As of yesterday evening (31 March) the Coronavirus Act 2020 saw amendments to the Care Act 2014.

DUTY OF CARE

Writing to his local MP, Jonathan Djonogly, Martyn was assured that during the COVID-19 situation, the council still has a duty of care.

“The worst-case scenario is they cut my funding leaving me without vital care,” explains Martyn. 

“I think the reality is people needing care for the first time may be hit harder by this change. 

“I also understand there is a central government funding pot to discharge patients from hospital quicker without local authority assessments. It’s all new and unknown. It’s actually the uncertainty that causes the most stress and fear,” adds Martyn.

The introduction of the Coronavirus Act 2020 allows individual councils to declare they are in an ‘emergency period’.

And councils have to contact you directly if your care is to be altered in any way, however, for many – like Martyn – who use Direct Payments to receive support, more information is yet to be introduced.

DIRECT PAYMENTS

Providing more control over help from social services, Direct Payments allow users to buy the specific services you feel you need. In the current uncertain climate, this means that there is an option to turn to a pool of PAs if one were to fall ill.

Martyn explains: “Accessed through websites like PA Pool. Plus, some people will use services like those of Revitalise, whereby you can use their self-catered accommodation and care support. 

“However, there’s a chance finding a suitable replacement in this current climate would be very difficult.”

And this is an aspect that many disabled people may find daunting and confusing. After all, safe care and shielding are important aspects of personal care that need to now be considered in higher regard than ever before.

SAFE CARE

The understanding that the current COVID-19 coronavirus is spread person to person is an aspect that we are all aware of; for those receiving care there is worry on the potential of a care team member falling ill.

“Without care I’d be stuck in bed, unable to eat or drink or go to the toilet. It’s absolutely that simple,” emphasises Martyn. 

Now, with added concerns to the changes in care that councils can provide, the disabled voice needs to be heard louder than ever before.

Martyn continues: “I think to some we’re just invisible and not thought of at all. To others there’s a view of charity and pity. Occasionally there’s the superhero triumphing over tragedy.

“Disabled people simply want to be seen as citizens and consumers, with the right to live the life we choose. With an investment in our health and independent living, with societal flexibility; we have so much value and talent to give.”

SPOTLIGHT

More than ever before, it is clear this is a key time for the UK Government to show exactly their commitment to the disabled community and implement strategies and Acts that will allow people living with disabilities and their carers to receive the right funding, support, and awareness of specific needs.

“Just by seeing us as humans that, given the opportunity, can contribute so much to society,” Martyn emphasises.

“[The government should] invest in us, as we are the largest minority, most people end up with some form of disability in life, and a better society is an inclusive one.”

There are uncertain times that we all find ourselves in, but together we can campaign to ensure everyone receives the care they are entitled to. 

“I would say know your rights,” advises Martyn. “Stay connected with other disabled people to get advice and support; use your voice through organisational feedback procedures and on social media; and most of all: trust everything will be OK and the COVID-19 crisis will pass.”

Join in the conversation with the #EnableCommunity on TwitterInstagram and Facebook.