Imagine that you could control all the money that the HSE now hands over to your service provider. Imagine that you could decide how best to use that money. Imagine you could decide to live an ordinary life!
This is now a possibility for a small, but growing, number of individuals and their families. And it has government backing. But you will have to work hard to make it happen. Here’s what you have to do.
Show me the money!
For you to make the decisions about how your HSE funding is spent, takes two steps. First you must know the amount of funding that the HSE is giving. Second, the HSE must agree that you make the decisions about how that money is spent.
These two steps are challenging for the HSE. The funding may have already been given to a local service provider as part of a block of funding, perhaps for six people all living in one house. There may be an argument about how much of that funding is for you. And with five people still living there, the costs of running that house will not be much less. But, as one mother said to me: ‘That’s the service’s problem, not mine!’
Of course, if your funding has not already been given to a service provider, it is much easier.
“ … we will move a proportion of public spending to a personal budget model, so that people with disabilities or their families have the flexibility to make choices that meet their needs best”.
(Programme for Government)
First, make a Plan
Planning your own life is a challenge. Especially if this is your first time. You will need all the help you can get. And you will need more than money. But the first step is to think about what a good life looks like for you. It is sure to include having friends and spending time with them. And doing things you enjoy doing, like going out to the coffee shop or the pub, maybe to the cinema or a concert, or getting involved in a club. And you’ll want to be involved with your family and help out at home. You might also want a part-time job, or to do volunteer work, or learn some new things like computers, cooking or managing your own money or using the library. You may want to travel or go on holidays.
What have you got to make this happen? On the money side, you have your HSE funding, your weekly Disability Allowance, and perhaps some savings. Some people have trust funds or other monies put aside for them.
Then build your circle
Money is not enough to give you a good life. You need people in your life, and not all of them paid. In fact, the more unpaid people in your life, the richer your life is. The people who matter to your are called your Circle of Support. These are the people who will look out for you, help you get connected, come up with good ideas and give you lots of encouragement.
Your Circle are the people who care about you—your family, neighbours, cousins, old friends. Slowly the Circle will grow as you get involved with more people, doing more things in your local community.
“ with individualised budgeting, the main transfer to the service user is the transfer of choice and control over funding decisions”.
(Value for Money & Policy Review)
Call a meeting
Have a Circle meeting in your own home—that way you are in charge! Make it a fun meeting, with tea and cake and soft drinks. Make a drawing on a big sheet of paper. Show what you want your life to be like. Be brave! Put down all the things you would like to happen in your life, even things you are not sure will happen. Show what you really want your life to look like.
From this picture, your Circle will help you make a plan of action. What are the first steps? Who will do what? What will we have to pay for, and what will cost very little, or cost nothing at all?
Bringing the people in your Circle together means there will be lots of good ideas. Someone will know someone who can help with joining a club, or with getting some work experience in the coffee shop, or with using the swimming pool.
“ a person-centred model should form the basis of the future direction of disability policy, with services delivered in the community based on an individualised range of supports”.
(Dept of Health four-year plan)
Pick your own staff
Living your own life means you don’t go on a special bus into any ‘centre’, or live in a ‘group home’ for people with disabilities. It means you live an ordinary life, doing ordinary things, around where you live.
To help you with this, you will have your very own support worker, who works for you and nobody else. You get to pick this person. You put an ad in the local paper or on a website. You meet them somewhere you are comfortable—a local coffee shop or hotel—to see if this is someone you can really talk to, someone who is well connected into the local community, someone who is on your side! Ask them if they have done anything like this before. Ask them why they want to do this job.
How do you climb a mountain? One step at a time! With the help of your support worker you can get started straight away to put your plan into action. This will mean trying out some new things, or spending time in new places. You might be nervous at first, but you will soon get used to it.
Some things take time, like getting a job. You might want to try out different jobs first. Get some work experience. Learn how to do the job well. You should have someone coach you to get it right.
Some things, like adult education classes, usually start in September or after Christmas. But some things like computer classes, you can start at any time with on-line programmes.
Do you need help?
Individual funding and control of decision-making is new in Ireland, although it is more common in many other countries. The job of planning an ordinary life for yourself is hard work. Some people, and some families, will want to do it all themselves. Others will want some help, especially during the setting-up stage. They may want someone else to manage the money for them—to account to the HSE for how the money is spent. They may want help with recruiting the support worker and paying the wages, and keeping receipts. And they may want an experienced person to facilitate the Circle meetings.
This is the role that possibilitiesplus takes on, if we are asked to do so. We identify the person’s interests, gifts and capacities, and explore where in the local community their contribution will be valued. We help the person develop their interests and skills in ordinary settings. And we will help the person and their family cost their personal plan. We work with the person to build their Circle of Support and we facilitate Circle meetings. We progress the recruitment process for direct support staff and we become the technical employer responsible for any HR matters that arise. We administer the HSE funding and are accountable to the person, their family and the HSE for all expenditure. We coordinate the implementation of the person’s plan, under the direction of the person and their family, and facilitate the regular reviews of the person’s plan.