This chapter summarises the main findings from the consultation related to the first of the policy proposals, which sought to establish views on individual supports as a means of providing choice and control. The following vignette was presented to participants and they were asked to give their reactions to the policy idea.
Do you like the idea of having more say in what supports you get and who provides these supports? One idea is to have "the money follow the person". This means the person and their family will have a much bigger say in what supports are provided and who provides them. One example is that you can get your house or flat from a housing provider. Supports you get to live in this house or flat, like a personal assistant, may be provided by a service provider. This means you will have your own place to live but can use different supports and different providers depending on what you need. You can choose if you want a housemate or not, and you can choose who that person might be.
As agreed, the moderator did not seek to explain the detail of the proposal other than presenting the participants with a summary description. Accordingly, the findings summarised in this chapter capture the initial reactions of the stakeholders to the concept.
Many of the participants responded positively to the perceived greater choice and control over funding they felt this proposal would bring. However, some participants also queried the capacity and willingness of the government to deliver on this policy, fearing that they would be the target of budgetary cuts or inadequate provision and follow-up. While some participants were nervous about any change, and the possible loss of services or resources, others were more hopeful and less questioning.
Three groups of service users participated in the consultation: people with physical/sensory disabilities, self-advocates, and people with intellectual disabilities. For the most part, the first two groups were capable of expressing themselves, either personally or with the assistance of a carer, and understanding the underlying concept proposed by individualised supports, as described in the alternative vignette formats. Conversely, those with an intellectual disability had much less comprehension of what the proposal entailed and generally agreed with most things suggested or remained silent.
This group were generally in favour of the proposal. However, they were unsure how it would work in practice. One person was concerned that people with disabilities would be forced to accept the model that currently operates in the UK, whereby people would take on full employer responsibility for their Personal Assistant. Others were concerned with issues, such as what would happen if the money was spent too soon, how the funding would be allocated, and the risk of the government reducing the amount of money available.
"Sounds good if they can pay for it"."That's good"."I like the bit where the money follows the person"."I would like to have it added in that it is not means tested"."The broad outline of that is the way to go but the devil is in the detail e.g. means testing, what actually happens. It is how it rolls out""Good if it gave power back to people, if they had a say about what they wanted and when they wanted it"."It would be ok looking after my own affairs"."I would like to hire my own Occupational Therapist (OT) if I got the payment myself. In some countries the money covers the OT and the equipment"."The idea is good"."Hopefully they will give you enough money to do what they say - buy in services".
"Whoever wrote that is thinking of the intellectual disability side and they are talking about the institutionalisation of people and moving them back into the community and that is ok but it doesn't go far enough. It doesn't mention choice of service provider and control over service and direct payment to contract service provider - not only the self-employed model in the UK. Personal Assistants (PA's) will contract with the service provider. Very few people will want to be employers - better if the Centre for Independent Living (CIL)take responsibility for timesheets, payments, PRSI. The uptake in the UK is so small that something must be wrong somewhere with direct payments"."We need to be very careful. In Sweden, the amount of pay for a Personal Assistant is defined by law and it is indexed linked. In the UK it is minimum wage. We need to avoid the minimum wage model. Otherwise we will be competing with (company name) where people come in to help you one week and then move on somewhere else. If they decide to go that way, there has to be some protection for disabled people, many of whom are vulnerable people. A full-on commercial model will not meet our needs. We need some protection around the training of PA's and training for disabled people to help them become employers and manage the system. Also, people with an intellectual disability (ID) don't necessarily have the capacity to make decisions but supports can be put in place to help them make decisions - family boards, organisations. Time needed to build things up"."I don't understand how this will affect me. I just get disability allowance into my bank account"."It would probably come out cheaper for them if it were run right"."It is not for me. I need care in a residential setting"."Like everything in life, you might be nervous at the start. What would happen if you didn't pick the cheapest service? Would the government come after you? It would have to be evened up and have a contingency fund there in case"."There are a lot of responsibilities for a person. It has nothing to do with your parents and it is up to yourself to speak up for yourself"."There are not enough taxis that are accessible. There are not enough Occupational Therapists and other services before you can buy them"."What happens if you spend your money too soon in the year?""They would probably be tight with the money and strict about what you can do with it"."It would give the government opportunities to reduce the amount of money they give you - a big risk and it would be easier to take it from individuals than a service (provider)".
The self-advocates liked the idea of having greater choice in their lives. They would all like to work in regular employment, the same as everyone else, in order to earn money, but more importantly it would enhance their sense of respect and show others that they are more than their disability. For this group of self-advocates, work means money, self-esteem, normality, and pride.
They would also like to have more choice in their living arrangements, with most people wanting to live outside their family home like other young adults. However, they also recognise that they would need support and that this would cost money. They know they are independent 'up to a point' and that none of them, for example, could travel on public transport without assistance. Most of them are happy to go to their family doctor and had not considered any other option up to this point in their lives.
The reality for this group of people is that they need support if they are to access services. At the moment, this support is provided through their services and families. However, they would like the opportunity to employ support under their terms, such as employing a Personal Assistant for a day-trip or holiday.
This group shared similar views to those expressed by the self-advocates. The younger participants were generally living at home with their parents and for the most part, would welcome more freedom and independence. However, they would like to live close to their parents and in places which were familiar to them. They would all like to work in a 'normal' job which most of them felt capable of doing. A job would enable them to feel more normal, to wear work clothes, and to show people they are able to work. Transport is an issue for most but it is possible with the assistance of family members or carers. Some were capable of travelling alone on routes that were familiar. A few individuals, who are currently living, or seeking to live, more independent lives said that they would like access to direct funding if it enabled them to buy services, which they are currently not allowed to access. One young woman, for example, wanted to use facilities attached to a particular service but was unable to do so because she was not affiliated to the service.
parents The group of parents with older children were most in favour of the proposal, with a number of parents stating that greater choice they associated with individualised supports would be a good thing for their children. Conversely, the of younger children were much more sceptical of the proposal, believing that while it sounded good in theory, their experience with 'government promises' suggested the reality would be less than the promise.
Some of the main concerns raised by parents included fears that:
They also raised a number of practical questions relating to the proposal, including how the money would be allocated and how decisions will be made on an individual basis. The following verbatim comments illustrate the reactions of parents to the proposal in more detail.
"It sounds good (most people in the group agreed with this view)"."Choice is good.... At the moment they don't have a choice who they live with - they are allocated a pigeon hole when a space becomes available. You have to wait for someone to die"."I delivered a programme for my son on less than €13,000 and it is a very full programme - he has an individual plan and he has choice - to meet his needs, not my needs. As a result, my family is less stressed. It has definitely brought him independence and control over his destiny, which he didn't have when someone else was doing it for him"."I think it would be great for people with mild ID"."I would like it. It gives people with disability a choice and that is good. They need to start from somewhere and show some progress to get people on board"."Every person should have an independent advocate working for them, similar to those in Germany and the USA".
"I would not be so sure that I would get the help I need (daughter with profound disabilities) for the money. I would need very specialised care... I would be the same - would we be cut off from the therapeutic staff? I don't want to have to buy it. I like the way it works now, as a team working together. I don't think I could cope with any change like that"."I find that I am being charged gradually for things from her disability allowance. I wonder if this would make it worse?""The therapies are huge and the ongoing supply of equipment would be a huge loss for me"."It sounds wonderful but it never works that way. It would not be resourced sufficiently in this country. I just have no faith it would be done correctly. What we would end up doing is losing what we have. We currently have some semblance of a central location we can go for services. You will end up going to 40 different places and they will all be saying no to you in various different ways. That would be the frightening thing"."I agree. We are the sceptics. We have been around too long to have any belief in that"."It sounds wonderful in theory"."If you had competing services and they had to compete properly, then possibly it might work but there is not enough scale in Ireland to make it work. Maybe in London? There has never been enough money to fund initiatives in education or health. I can't imagine they would fund it sufficiently for it to make sense"."Young adults who want to be independent will want this but to me they are being sold a pig in a poke. As much as I would love it to work, I have no faith in it at all"."In a climate when the government is giving away so much money to the banks and not giving empty houses to people who need them, difficult to believe this"."This is a nightmare situation for me - specialist units have to be dealt with by you yourself - lot of money wasted gobbled up in administration without any obvious improvements in service"."Funding will need to be adequate to allow a person to access these services"."Where you live determines what services you can access - transport is vital".
"What does it mean that the money follows the person? I understand that it means you are given a lump sum to buy services for a person with disability... I think it means that a decision is first made on the person's needs and money is given to buy services to meet their needs"."Will it allow my daughter to live independently?""Where is the current funding going and who is in charge of the funding?""Where would you claim your money from?""Can you get funding in this way and still stay with the services you are with now?""Does it affect supply of maxi pads and things like that or her DA allowance?""How will the funding be spent? Who is in charge of the funding?""Will there be budgeting for two wheelchairs in a year if you out-grow one?""Would it allow parents to buy in extra night staff where there is a shortage?""Could you work in partnership with services to improve services? There is only so much money and if the money is spent on residential services, there will be no extra money for residential or will there? The money is given to the residential centre and not available to me. They won't pay twice for the service. If 5 people with complex needs live in a home and 1 person wants something different, who pays and who gets funds?""If my son is in a group home, will I be able to buy in staff for night duty and what happens if only some of the residents want to spend their money this way?""Will they automatically lose their support in group homes - will it be obligatory?""Will it affect their disability allowance or Trust funds?""A wonderful idea in principle but once they are mainstreamed, will we lose access to specialist services?""Is it about disabled people using VHI to access private services?""How will they make a decision on how much money a person will need - who decides?"
The frontline staff were generally in favour of the proposal but only if it was introduced with sufficient resources to support it. Thus, while some staff liked the greater control it would give to people with disabilities, most staff questioned some aspect of the proposal, albeit without rejecting it outright. They would need further information and a reassurance from government that the proposal would be adequately supported before giving it their support. Overall, they thought that both individualised supports and mainstreaming, or parts thereof, should be brought in together.
Some of the main concerns raised by frontline staff included fears that:
"Sounds like a good idea"."We would aspire to do a lot of that in our service, apart from contracting another service provider. We have people interviewing for staff. I like the idea of giving people a lot more say and control"."It seems to be giving the person a choice (agree) to make decisions they feel is in their best interests regarding services for them"."The idea is very good but with support and guidance to help them pick the right service. I am thinking of intellectual services and how many would be able to make that choice. They would need to be supported by professionals in making their decisions, probably from professionals in the service they are currently attached"."I think it would work well with physical disability. I am thinking of a woman who is blind and a lot of her problems are to do with transport and her Personal Assistant is not allowed to carry her in his car. The funding she gets could be used to help her get to the various therapies she gets. It would be more difficult for people looking for wheelchair accessible taxis"."It fits in with the primary care initiative"."A family should be able to hire a support worker for less than (the current service provider) or another service and get more hours. This is the economic reality".
"The funding that is coming down for an individual isn't sufficient now - yes, to ring-fence it is good but if the money isn't there to do what you want, how will it be financially sustainable?""What is disability? What about person living at home with parents who has never been registered. Will they have the same entitlements and at what stage can they enter the system and access funding? Knowing you have funding is giving a person choice"."I think the idea is great but question what happens if the system is not in place to help people? At present, people access services. People who find it hard to advocate for themselves could possibly get lost. There needs to be somebody, maybe not our service, to ensure people are not lost"."I don't think the HSE or the Department have the capacity at the moment or infrastructure to deliver on this. How do you make payment, assess need? Are there proper employment conditions or will it promote the black economy? It is a great aspiration but how realistic it is I don't know. I would like to think our organisation would support this, even to the point of hiring third parties"."We should be working with families to develop capacity"."Some families would have fought for this service and they got funding but it hasn't worked out. People with complex needs need variety of 'multi-d' teams and I know a person who puts in many more hours than allocated. Families are very demanding and taking away from other services. A brilliant idea but who is accountable?""Will it allow for an individual who turns 18 to make their own choices even though funding is coming through mammy and daddy? A lot of fundamental things need to be put in place to ensure the young man or woman is heard. They haven't got a voice and will need an advocate to speak for them"."Will it mean that whoever shouts loudest will get most?""Funds have been allocated to people with intellectual disability in recent years and parents are aware of different amounts but the difference to this is that they would be the budget holder and would have to buy the services. They would realise how far funding stretches when they have to find a physiotherapy or Occupational Therapist. There is merit in shared services. A person who badly needs a service may not be able to afford it. There is no claw back from individuals who under spend. I don't know how it will work"."Do you think the HSE will have its own agenda? Service users have always to be centre-stage"."How do you divide out the funds? By disability (autism, Down Syndrome) or degree of disability (mild, moderate, severe)?There is a need for a system that will fit the different categories and not like now, where the more boxes you tick the more you get"."The disability act gives you no guarantees"."How often do you have to revisit a person's needs, to reassess their needs? Very few people's needs stay constant"."The whole bureaucracy we have now - assessment officers - in the HSE and lot of work diverted to asserted and away from therapy. The system is being abused. It is a way to see a therapist but no guarantee of getting therapy"."It is used in different countries and we should learn from them"."It sounds great but when you drill down, what will happen?""I would have a concern that the funding may not be adequate as the person gets older. It would be easy to introduce this and it would be very good and wonderful but it would get people out into a very insecure environment and I personally would stay away from it. When people are unable to look after themselves, they would have to go back to their parents. This has to go further"."I assume they would have a review and help to manage their services and finances. Maybe a review every three years?""If parents disagreed we would invite them in and speak to them as a team, telling them how beneficial this would be for their son/daughter. However, the bottom line is that parents would have the final say"."I think provisions have to be made for every person with a disability for transport"."What happens if your budget runs out early?""Can people profit out of it if they don't spend their money or if parents or carers get the money and they end up getting the cheapest possible service and they pocket the remainder of the money?""Someone needs to be an advocate, an external person should be involved"."I know a man who got funding for a service he needed but he never spent the money""You know ward of court for people with ID, a form is filled out for every service needed. This type of system would ensure they get the best possible care and not allow abuse"."What about the paperwork involved? Will it just create more paperwork and red tape and hassle for the person? Is it worth it or will there be people there to help them manage and make decisions"."The biggest fear is cutbacks and this might be the first things to be affected during a recession. It would be very difficult to give reassurance that this would not happen".
Overall, the community and voluntary advocates were quite positive towards the proposal of individualised services. They felt it would give the person with a disability greater choice and an opportunity to live a more independent life. However, they also expressed a number of concerns regarding the way the system would work in practice, including:
"Good idea (general comment)"."You decide where the money goes"."I believe in it fully"."It would allow a person to do something different than the group - no need to go to bingo with everyone else if you don't want to but that would require much more management. It is much more involvement and takes lot more work - I think it is right and better for the person - and it is harder on the service"."I approve of the money being identified as belonging to the person and people knowing how much there is and having some power around how it is spent. You start by identifying what money comes with people. When an ID person comes into a service, a value is attached to the service they provide but no one has access to that information. It is decided for them what level of service they need, whereas people close to him may decide that he actually needs other services"."A good idea that money should follow some people but it won't suit everyone and this needs to be recognised. Important it is available for people it could help".
"I love direct funding. It is the best way that it follows the person but how does the person get judged as to how much money they need? If it is through the disability act and assessment need, half of people with disabilities will be knocked off immediately. Needs identified in your plan are not resource based - they will identify everything you need - but the delivery of the plan is resource based. That is my fear. For years, people with disability fought not to be labelled but the disability act will result in people fighting to be labelled. If you are not labelled, you will not get funding. If you are not strong enough to go through the assessment process - who brings you through it if there isn't an expert, advocates specifically - and personal advocacy service is on hold. I am just so scared. The idea of funding for person is great but...""The only issue is the person and their family. The family may not always want what the individual wants. An independent advocate might be a better way to do this. Otherwise, you are giving the power back to the family and sometimes that is the problem. Particularly with intellectual disability, where parents may prevent a young adult from doing something they want because control of funding is outside their control. There should be provisos - that say family have say up to 18 and that after 18 consultation is possible. It is a very difficult area where a person has brain injury""It is open to abuse from family but also by the person. An Acquired Brain Injury(ABI) person will typically make excuses whey they don't go to college but if the service is being provided by 3 or 4 services and there are not real solid communication and solid goals everyone is working towards, they will play one service against the other. It is their nature and different to intellectual disability. They don't believe they require services and would play one against the other"."Safeguards need to be put in place to make sure it doesn't break down but definite way of going forward"."I worked with a person who needed huge supports and parents recommended something innovative to the behavioural team and although money was there, the service provider wouldn't give details and be accountable. If the service provider was accountable to the person and family, that would be better"."It requires a degree of conscientious that is not attached to the post staff apply for"."What happens with cuts - will everyone be treated equally? This will allow a person's service to be even. At the moment, service for people in a residential setting is not even - some get more or less than others".
[4] Two groups of parents participated in the consultation. One group of parents had young children with physical/sensory disabilities and the other group of parents had adult children with a range of disabilities, many of them profound.
[5] Two groups of frontline staff participated in the consultation, including speech and language therapists, social workers, community co-ordinators, administrators, occupational therapists, transport employees, public health nurses, personal assistants, and staff in intellectual disability services.
[6] One group of advocates took part in the consultation. They were employed in the community and voluntary sector for people with disabilities.