Direct Payments were meant to deliver independence. For too many families, they now deliver stress.

That vision remains embedded within the Care Act 2014 and statutory guidance, which states that Direct Payments should promote "independence, choice and control" and should not be administered in ways that place undue burdens on people or restrict innovation.

Yet for many families today, the reality looks very different.

Across the country, Direct Payment packages are increasingly being costed at rates that bear little resemblance to the true cost of employing staff. Families are expected to take on the responsibilities of an employer while receiving funding that often fails to account adequately for:

• Holiday pay

• Pension contributions

• Employer National Insurance

• Payroll services

• Training costs

• Recruitment costs

• Insurance

• Sickness cover

• Mileage and travel expenses

• Cover arrangements when a Personal Assistant is absent

In some cases, families supporting children with significant physical disabilities report that essential manual handling training is not included within their package, despite being necessary to deliver care safely.

Prepaid debit card systems, introduced in many areas as a monitoring tool, have further reduced flexibility and broken trust. Families report difficulties paying staff after a significant break down of the platform that hit the national press recently. Additionally being unable to pay legitimate employment-related costs adding additional administrative burdens that were never envisaged when Direct Payments were created.

The result is that many packages are technically available but practically unusable. A Direct Payment that cannot fund the actual cost of delivering care is like providing a car without wheels. It exists on paper but cannot take someone where they need to go.

What is particularly concerning is the apparent focus within some local authorities on reclaiming unspent funds. Reclaimed balances are often presented as evidence of financial efficiency. But how often do we ask whether those funds remained unspent because the package was so poorly designed that families could not use it effectively?

If a Direct Payment package is consistently underspent because it does not cover the real costs of care, that should be a warning sign, not a success measure.

Families are also reporting increased auditing and monitoring requirements, while payroll providers and support organisations have observed a decline in new Direct Payment packages being established. At the same time, existing recipients face growing scrutiny and administration despite receiving little practical support.

We know of cases where the cost of faxing a timesheet as part of employment administration has been treated as though it were misuse of public funds, despite being a legitimate cost of employing staff.

We know of families who are expected to manage complex employment responsibilities without adequate funding.

We know of disabled people whose opportunities for independence are being limited by packages that simply do not reflect the realities of the labour market.

This is not an argument against accountability. Public money should always be spent appropriately.

It is an argument for proper oversight of how Direct Payments are costed, monitored and reviewed.

When funded properly, Direct Payments save money, reduce reliance on traditional services, improve wellbeing and enable disabled people to live fuller, more independent lives.

When underfunded and over-regulated, they become a source of stress, conflict and unmet need.

The original ethos of Direct Payments was empowerment. We need to ask whether the current system is still delivering that promise.

If not, improvement and national oversight are urgently needed.

Families have shared their experiences.

"I totally agree , my 37 year old daughter was part of In Control pilot scheme for DP in Wigan . It was around 2004 she was 16 this is where it all started . We had a big package 2:1 support it gave her the Choice and Control she needed to live a good life . The hourly rate was good and we got lots of Support and had DP for 10/12 years . It was a lot of money to manage as an employer and huge responsibility . 

My daughter lives in her own home now with a commissioned package of care , it works great for her . 

I would not go back to a DP it’s changed so much little help given to run it and rates of pay not acceptable . Our hourly rate was more then than it is now ? ".

"In the midst of the prepaid card crisis when I couldn't pay my son's p.a.'s, I was also referred to the pension regulator and fined £400 because my payroll service hadn't paid the pension money into Nest! Also a problem with the bank. Did get it sorted but hugely stressful!"

"Omg. this is myself and my son right now!. 

I've had to just park it right now and not use the funds as I'm dealing with the aftermath of the death of my Mother. Its just adding so much pressure and  stress. It's not helping at all....and we are paying out of our savings to be able to keep him having some kind of essential care."

"Totally agree. I stopped using our pa 6 years ago when i became ill with cfs/me. Not because we didn't need them, but because I could no longer do the paperwork, cope with phone calls or cope with organising anything. Now it has been removed. Added to that, adult social care is like stepping back in time compared to children's. Very sad"