Just 5 weeks today my daughter Kirsty came home after a long hospital stay. Readers of my blogs would know Kirsty has been in hospital on and off from August 2020; 10 weeks in total. My husband and I took turns to look after her while in hospital. She is 19 years old. Under normal circumstance, she is an independant teenager but sadly was not able to care for herself due to the severity of her illness. Kirsty has Down Syndrome and was diagnosed with leukaemia 5 months ago.
Kirsty is now starting to experience ‘normality’ in her life by being able to attend various college lessons and creative lessons via Zoom. She isn’t able to attend face to face lessons at the moment as she is shielding.
I am Kirsty’s main carer. However my husband is also involved in her care. We take turns to give each other respite.
Just recently I read the government guidance on direct payments that was published in November 2020. It’s guidance for individuals, regardless of age, who receive direct payments and how they are able to use this money in the pandemic. It’s a document that is not only useful to the individuals but also to others who support them and their Personal Assistants. Please click on both links below for the updated information.
For those who want to know what direct payments are and want to check if you are entitled to it, this is the link on how to apply for Direct Payments.
Direct payments refers to money given by the government to individuals to help them pay for their own care.You will need an assessment by a social worker before you can apply for direct payments.
Kirsty, who has a learning disability, had a Personal Assistant (PA) in the past who kept her company after school or on the weekends. Kirsty enjoyed meeting up with her Personal Assistant who became a friend. They used to go out to cafes, visit the cinema and bowling alley, or sing together at home on the karaoke machine. It was an opportunity to go out safely with someone other than her parents. It made her feel more independent.
Due to this coronavirus pandemic, she hasn’t had a Personal Assistant visit her for almost a year. This is because Kirsty has been shielding for most of the year and we chose to limit contact with people in general. PAs can still look after those who are shielding if they take the necessary steps to ensure their clients are well protected.
Kirsty misses the company of her Personal Assistants, just like she misses seeing her friends and socialising. The new guidance will be of benefit to Kirsty and those who have direct payments; whether their current provision has changed or not. The document quotes several ways direct payments can be used by families and local authorities should be supportive of this.
There are many changes introduced by the government on how individuals can use their direct payments.
Your direct payments should continue as before. These remain as important as other types of provision, and LAs and CCGs must make every effort to ensure that your budget and payment are maintained and supported.
‘Flexibility’ is a key change. It also mentions the availability of free Personal Protective Equipment (PPE) for Personal Assistants and how to obtain them.
There is a detailed description on what PPE is suitable, how to use them and how to dispose of them. There is a video to provide visual and written information.
PAs are considered key workers by the government and are entitled to the annual winter flu vaccination.
Another important point this document makes is that family members caring for those receiving direct payments can also be paid. This wasn’t the case prior to the pandemic. Families at the moment may not get the respite they used to have and therefore are probably finding themselves juggling their time as carers, parents and workers, while trying to look after other children and their own health. If you are in this position please refer to the document to see if this is a helpful way to use your direct payments.
Even if you do have a PA but for some reason they are unable to work for you, eg needing to isolate or they are vulnerable themselves, it is possible to use this money to pay a family member to temporarily provide help.
If someone is admitted into hospital and needing their PA’s to help support them in hospital, the money can be used to pay the PA. This however needs to be discussed with the relevant people in the hospital as there may be extra restrictions to allowing external help for inpatients due to Covid 19.
This document highlights various case scenarios that give good and clear examples on how direct payments can be used. These scenarious are highlighted in boxes throughout the document.
Scenario 2 describes a couple who usually enjoy a meal out at a local restaurant and are currently missing out on this. With their direct payments, they are able to use the money to pay the restaurant owner his fuel money so he can deliver their food to their doorstep.
There is also the young person who cannot physically attend a community class and so is currently doing Zoom sessions using a laptop that was purchased with money from direct payments. This was helpful for her mental health and feeling of isolation.This is a great example for school aged children too who are currently home schooling and might be sharing a computer at home with parents and other siblings who are working from home.
Our needs are all different. Reading the document might just give you ideas on how you can use your direct payment money to help support you physically and mentally during this pandemic.
Whatever changes you make with your payments, it is important to discuss them with your social worker or the local authority. It is important to take note of these changes and to keep proof of use eg receipts of items purchased. This is so you can show that the payments were used in accordance to guidance.
The guidance also reminds us that it is also possible to apply for emergency funding during the pandemic if extra cost is needed in providing suitable care for an individual.
The guidance highlights the impact on PPE and communication between a PA, carer and the client. There is advice on how to overcome this barrier.
My criticism of the guidance is it is dated 18th November 2020. It therefore does not mention the new Coronavirus strains and its implications. It does not mention the vaccines and who might be elligible. I think this is a major thing to leave out as several people using direct payment will be in the extremely vulnerable category whether due to age or medical conditions.
The document refers to shielding as if it has ended. We have been in lockdown twice since the guidance was written. There needs to be a section advising the vulnerable to keep themselves updated by referring to government guidance below.
This is a brief summary of some of the information you can find in the guidance. I recommend reading the full guidance to get all the relevant and useful information in it.
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