What People want in PB/PHB
This is a list put together via an online national group when questioned how they wish the Personal budget/Personal health budget scheme could be improved:
To be acknowledged once a year with an achievement award for being an employer. Just a simple we recognise your hard work you put in to gaining your own .
Clear and consistent information. At the moment if I ask three people the same question I get three different answers. Social worker speak is difficult to understand. How am I supposed to know that "younger adults" means younger than 65.
Adequate and appropriate support. When I've had difficulty recruiting and asked for help I've been told it's my responsibility because I chose to have Direct Payments.
Reviews that are actually reviews, asking how it's working and how it isn't rather than interrogations with the sole intention of reducing your budget.
An adequate budget that allows you to pay your staff a living wage.
A basic understanding of health conditions and how those conditions can be variable, such as being able to do a task one day does not necessarily mean you can always do the task independently.
Yearly reviews
An appeal system that works like one proposed in care Act. Free at point of delivery and DLA and PIP to be disregarded
Higher Minimum income guarantee
A recognition that being an employer can leave some of us overwhelmingly exhausted
More transparency on what they will allow as DRE. They should be helping us, not trying to prevent us claiming our rightful DRE
Simplification of reviews and financial monitoring
What the SW writes I’d taken as complete truth but they mishear it misunderstand sometimes. Ive tried to point this out and had s half correction but still some factual stuff is wrong on my records. I mean I’m the one who knows when my illness started but SW gets it wrong. I’m the one who knows stuff like how often I can or can’t do something. I’m talking here of genuine mistakes from kind social workers. I can only imagine what ends up on our files from antagonistic SWs
Being recognised as an employer is a good one. We put in an awful lot of work for free, recruiting, training, administration, managing, disciplining etc. It would be nice to have these costs covered as well as the cost of admin supplies such as paper, printer ink, stamps, envelopes, phone calls.
I often feel like Direct Payments are more for the benefit of the local authority than for the service users. It's always sold as being a way for us to choose the care we want when we want it but that puts all the responsibility on us so the council don't have to pay for managing our care. My local authority is now pushing pre-payment cards. I don't think this is a good thing for us, it has less functionality than a current account, we are limited in how we can use it. It's only a benefit to the local authority as they can snoop on our finances in real time. I'm not against financial transparency but I feel incorrect assumptions could be made about spending which could lead to cuts in support. I've already experienced that when my local authority cut my budget because they incorrectly assumed I'd accrued £6,000 in 12 months when it was actually accrued over three years.
The thing I would change is a consistent approach to the care act which provides the guidance...a personal budget should be used by the recipients as a means to decide how their care needs are best met without dictatorship of a LA. If the person decided that they would prefer a friend to meet a specific care need such as bathing but that person doesn’t want paying the budget could be used to take that person out for dinner or a social activity...theatre etc...it would actually be a cheaper alternative than a career whilst meeting other needs however the La want to have a breakdown of your budget into hours and that is it when it should be about creativity and maximising your care
To be given the amount of money and left to budget it to meet my needs without having to spend the full amount each week. So save some for poorly weeks.
the fact some councils don't charge some do and some charge way too much, the London councils don't allow extra for London living cost when working out how much individuals can afford to contribute and the fact they are taking away the rights of disabled people to choose how they use their budgets by making pre-payment cards compulsory rather than another option which is how they were introduced.
Timely responses. Bring back 28 day rule where councils had to assess and get it done in 28 days
Knowledgeable staff and mangers.
Copies given to you or emailed to you at the point of assessment not after when they're changed.
Calls returned within 48 hours
Written responses in a week
Involvement in financial agreement - looks at all aspects including disability regards.
Advise on disability regards
Advice on additional benefits and services
If goes to panel have a chance to attend and argue your case.
Quick complaints process 30 days
Proper advice service not just advocacy - how can you argue your case if you don't know law.
Light touch assessment after initial one.
A budget to pay for managing your own care.
Proper career scheme for carers
National agreed rate for all, not based on post code with salary at living wage for carers.
Carers ( family/friends) can be paid using budgets.
A proper stepped joint budget which moves from social services across to health as your disability progresses or changes.
One proper joined system not to two health and services.
Proper involvement and co production
Self assessment based on keeping a diary before the assessment.
Wellbeing actually measured against needs
Proper joined up mobility assessment which takes a whole approach from walking aids to transport.
Emergency cover provided by a commissioned service.
People with disabilities involved in commissioning and running services
People with disabilities involved in council/or and panels and have a vote on decisions.
Commissioned services are taken to task on issues and can loose they're contracts if they don't deliver on services.
To be acknowledged once a year with an achievement award for being an employer. Just a simple we recognise your hard work you put in to gaining your own .
Clear and consistent information. At the moment if I ask three people the same question I get three different answers. Social worker speak is difficult to understand. How am I supposed to know that "younger adults" means younger than 65.
Adequate and appropriate support. When I've had difficulty recruiting and asked for help I've been told it's my responsibility because I chose to have Direct Payments.
Reviews that are actually reviews, asking how it's working and how it isn't rather than interrogations with the sole intention of reducing your budget.
An adequate budget that allows you to pay your staff a living wage.
A basic understanding of health conditions and how those conditions can be variable, such as being able to do a task one day does not necessarily mean you can always do the task independently.
Yearly reviews
An appeal system that works like one proposed in care Act. Free at point of delivery and DLA and PIP to be disregarded
Higher Minimum income guarantee
A recognition that being an employer can leave some of us overwhelmingly exhausted
More transparency on what they will allow as DRE. They should be helping us, not trying to prevent us claiming our rightful DRE
Simplification of reviews and financial monitoring
What the SW writes I’d taken as complete truth but they mishear it misunderstand sometimes. Ive tried to point this out and had s half correction but still some factual stuff is wrong on my records. I mean I’m the one who knows when my illness started but SW gets it wrong. I’m the one who knows stuff like how often I can or can’t do something. I’m talking here of genuine mistakes from kind social workers. I can only imagine what ends up on our files from antagonistic SWs
Being recognised as an employer is a good one. We put in an awful lot of work for free, recruiting, training, administration, managing, disciplining etc. It would be nice to have these costs covered as well as the cost of admin supplies such as paper, printer ink, stamps, envelopes, phone calls.
I often feel like Direct Payments are more for the benefit of the local authority than for the service users. It's always sold as being a way for us to choose the care we want when we want it but that puts all the responsibility on us so the council don't have to pay for managing our care. My local authority is now pushing pre-payment cards. I don't think this is a good thing for us, it has less functionality than a current account, we are limited in how we can use it. It's only a benefit to the local authority as they can snoop on our finances in real time. I'm not against financial transparency but I feel incorrect assumptions could be made about spending which could lead to cuts in support. I've already experienced that when my local authority cut my budget because they incorrectly assumed I'd accrued £6,000 in 12 months when it was actually accrued over three years.
The thing I would change is a consistent approach to the care act which provides the guidance...a personal budget should be used by the recipients as a means to decide how their care needs are best met without dictatorship of a LA. If the person decided that they would prefer a friend to meet a specific care need such as bathing but that person doesn’t want paying the budget could be used to take that person out for dinner or a social activity...theatre etc...it would actually be a cheaper alternative than a career whilst meeting other needs however the La want to have a breakdown of your budget into hours and that is it when it should be about creativity and maximising your care
To be given the amount of money and left to budget it to meet my needs without having to spend the full amount each week. So save some for poorly weeks.
the fact some councils don't charge some do and some charge way too much, the London councils don't allow extra for London living cost when working out how much individuals can afford to contribute and the fact they are taking away the rights of disabled people to choose how they use their budgets by making pre-payment cards compulsory rather than another option which is how they were introduced.
Timely responses. Bring back 28 day rule where councils had to assess and get it done in 28 days
Knowledgeable staff and mangers.
Copies given to you or emailed to you at the point of assessment not after when they're changed.
Calls returned within 48 hours
Written responses in a week
Involvement in financial agreement - looks at all aspects including disability regards.
Advise on disability regards
Advice on additional benefits and services
If goes to panel have a chance to attend and argue your case.
Quick complaints process 30 days
Proper advice service not just advocacy - how can you argue your case if you don't know law.
Light touch assessment after initial one.
A budget to pay for managing your own care.
Proper career scheme for carers
National agreed rate for all, not based on post code with salary at living wage for carers.
Carers ( family/friends) can be paid using budgets.
A proper stepped joint budget which moves from social services across to health as your disability progresses or changes.
One proper joined system not to two health and services.
Proper involvement and co production
Self assessment based on keeping a diary before the assessment.
Wellbeing actually measured against needs
Proper joined up mobility assessment which takes a whole approach from walking aids to transport.
Emergency cover provided by a commissioned service.
People with disabilities involved in commissioning and running services
People with disabilities involved in council/or and panels and have a vote on decisions.
Commissioned services are taken to task on issues and can loose they're contracts if they don't deliver on services.
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