There is a huge pent up demand for the role out of personal budgets within the disability sector. Presently, there are approximately 1.5M personal assistant hours funded by the HSE across around 2,500 people with disabilities.
This is just a drop in the ocean in the overall disability budget, however one of the Government’s stated objectives, is to provide people with disabilities, with services and supports which will empower them to live independent lives, provide them with greater independence in accessing the services they choose, and enhance their ability to tailor the supports required to meet their needs and plan their lives.
The Personal Budget’s Taskforce Report has advocated for the increased roll out of personal budgets in Ireland and we are delighted to say that Home Care Direct are involved with the pilot project that came from the report.
Under the Home Care Direct model, one of the principle barriers to the roll out of personal budgets, the need for the person needing support to become an employer and the attendant administration, is removed, making the move to a personal budget much less daunting, complex and expensive than heretofore.
Since our involvement with the Personal Budgets Pilot Project, we have been privileged to see first-hand, the huge difference a personal budget, well-conceived, can make to a person with disabilities, enabling them to live the independent life they want to live.
As an illustration, take one of the people we support, Mary (not her real name). Mary had a complex condition that meant she was confined to a wheelchair and needed 24-hour support. Mary for the last few years had been supported by various different organisations but with little success. She went through 3 different organisations, with none of them providing the support she needed. The main reasons for their failure were

  • High turnover of staff because of poor employment conditions meaning very poor continuity and leading to weak relationships

  • Inflexibility with Mary having to fit into corporate structures and processes rather than the other way around

  • High costs of provision leading to limited hours of support

  • Corporate transactional approach to support rather than a personal and human approach to Mary’s support

  • Lack of clear outcomes as desired by Mary

The failure to provide Mary with the support she wanted, also had a huge knock effect for the local HSE Community Health Organisation (CHO) by augmenting their workload dealing with phone calls, complaints, queries and quality issues.
As a result of these issues, Mary applied to be part of the Pilot Programme and we were approached to take on the case. We meet with Mary and discussed what she wanted and how she saw her support looking like.
Mary’s main aims were to have more control over who was delivering her support, what that support looked like and using that support to live a normal life. To borrow a quote from ABCD guru, Cormac Russell, “Mary wanted a life not a service”.
The first thing to do, was confirm the budget available to Mary with her CHO, which was based on what her support was currently costing. It was a significant 6 figure amount, which we were confident would enable her to put in place the level and type of support she wanted to achieve her goals. Importantly, Mary wasn’t penalised in moving to a personal budget and contracting directly with PAs, by having her budget reduced. This was important, because it meant that by contracting directly with her PAs, she could get more hours of support for her budget than going through a corporate provider, as well as building up a small monthly surplus.
Secondly, we checked with Mary what profile of personal assistant (PA) she was looking for and looked at how many she would need to cover her needs. While we had various suitable PAs on the platform that she would be able to contact and interview, we also asked her if she would be keen on incorporating any of her existing or past carers into her team.
She identified 2 past carers she was keen on using and fortunately, they were open to coming on board and working directly with Mary as PAs. They were attracted by the significantly better conditions Mary would be able to offer them and also by the direct relationship they would have with Mary rather than being once removed through a corporate provider. We on boarded them onto the Home Care Direct platform by interviewing, reference checking them and Garda vetting them.
We also presented Mary with further PAs from the Home Care Direct platform whom she interviewed in conjunction with an advocate and subsequently choose a further 3 of them to work on her team.
Importantly, we advised Mary to appoint a lead PA to help her with scheduling, general administration and overall co-ordination. This would ease considerably the management burden on her.
Once the team was selected, we arranged for a meet up and training day, so that the team got to know each other and got further insight into Mary’s needs and desires. It was also important for Mary to fully understand her role in managing her team and her responsibilities in making the arrangement work. We believe firmly that responsibility lies on both sides to make any Leader / PA relationship work.
The beauty of the relationship we were building, was that it was mutually advantageous. The PAs were getting the respect and rewards they deserved, while Mary was getting a proactive and motivated team under her control and dedicated to ensuring she could live the life she wanted to live.
The aim was that normal human relationships would develop that would give Mary the life she wanted, not a professional service. We wanted the PAs to think as citizens rather than as professionals. The Home Care Direct model, by removing unnecessary organisational and management layers, allows human and personal relationships to flourish.
One of the important things the Home Care Direct model does, is allow Mary to contract directly with self-employed PAs but avoid having to become an employer. At the same time, the platform makes it easy for PAs to work for themselves, by handling all their invoicing, administration, payments and tax returns. The platform also delivers full financial transparency and over sight to the HSE, saving them time and cost, by removing their need to control and administer the budget.
In addition, our platform provides full insurance cover to the levels required by the HSE.
Once Mary had picked her team, she agreed an appropriate level of remuneration with her PAs. This was at a level lower than what the corporate providers had been charging the HSE but which gave her PAs a level of pay significantly above what they would get with an agency. Our platform also allows for the ability to pay PAs travel and other expenses. This point of PAs getting a level of remuneration they are satisfied with, is vital to the Home Care Direct model.
It was agreed that Mary was able to manage her budget so that she could bank any savings for use at times like holidays, when the support she needed might be higher or to use the savings for additional costs such as assistive technology, training courses or counselling. These agreements further added to Mary’s sense of controlling her own future and gave her a real sense of proprietorship over the arrangement.
From the PA side, their reaction to being given more responsibility, fair remuneration and ownership of their work, has meant a level of dedication, continuity and commitment, that would have been impossible with carers earning barely above the minimum wage as employees with an agency.
What it also demonstrated to us, is the capability that exists in many PAs if given the right structure and support but also the importance of ensuring scarce funds go to where they have the most effect, directly to PAs. Funds diverted to excessive corporate overheads and bottom lines, don’t drive better outcomes for people like Mary.
Trust, meaningful relationships and empathy, are what drives successful personal budgets.
Mary’s situation has now improved immeasurably since she moved to having her own personal budget. Her support systems run smoothly with her PAs working tightly as a proactive team in consultation with Mary. She is happier, feeling in control, achieving outcomes that are important to her and has stability in the people that are involved in her life.
For the HSE, what was previously seen as a complex case, that consumed time and resources without achieving any desirable outcomes, has now freed up management time and become a possible blueprint to further roll out more personal budgets to other people looking to break free from the chains of institutional top down, structured support.
People live their lives not in silos but in the round and personal budgets properly conceived, can help them do that. Personal budgets should be a treasure chest of support rather than a foreboding and constraining set of chains.
In Summary, some practical lessons we have learned from Mary’s experience for the successful roll out of personal budgets are;

  1. Provide personal budget users flexibility in how they spend their funds.
  2. Leaders and PAs respond if shown trust and given responsibilities.
  3. Don’t penalise people adopting personal budgets by reducing their budgets because of savings achieved.
  4. Have trust in the ability of PAs to take ownership of their work and work in teams, delivering great support directly.
  5. Ensure PAs are well rewarded.
  6. Keep things simple. Remove unnecessary layers of management and bureaucracy, leaving PAs and Leaders to get on with it. Less management layers mean more friendly, neighbourly like support.

Personal budgets have an important role to play in how we support people with disabilities and their role out needs to be prioritised by the HSE, by providing funding but also by removing typical barriers such as risk aversion, professional egos and excessive emphasis on governance issues.