“Taking Control”

An alliance of disability organisations invites you to an information evening on what Individualised Funding would mean for you and your family

Is this Information Evening for You? 

• Do you have a family member with a disability?

• Are you a person with an intellectual disability or autism?

Dates and Venues:

Limerick    

October 7

Venue: The DSI Centre in the Carlton Castletroy Hotel

From 7.30 p.m to 9.30 p.m

Galway               

Oct 12

Venue: The Menlo Park Hotel

From 7.30 p.m to 9.30 p.m

Waterford         

Oct 28th

Venue: To be confirmed

From 7.30 p.m to 9.30 p.m.

Dublin                 

Nov 16

Venue: Central Hotel, Exchequer Street (off Georges Street) 

From 7.30 p.m to 9.30 p.m.

Wexford          

Nov 18th

Venue: Riverside Park Hotel, Enniscorthy

From 7.30 p.m to 9.30 p.m.

Laois                   

Nov 25

Venue: Portlaoise Parish Centre (behind St. Peter and Paul's Church)

From 7.30 p.m to 9.30 p.m.

Cork

Dec 2nd

Venue: Maryborough Hotel and Spa, Maryborough Hill, Douglas, Cork

From 7.30 p.m. to 9.30pm

HAVE YOU EVER WONDERED………………….

• are there alternative ways to fund services and to enable people with disabilities to secure the right support as and when they need it?

• if people with disabilities and their family members could be more in control of the ways their services are provided to them?

• if there are alternative ways to provide for the service needs of a person with a disability

• are there new ways to make sure people with disabilities can develop lifelong friendships and enjoy life to the full?

• In short, is there an alternative way to enhance and ensure that people with disabilities are in greater control of their lives, have choices and live their lives like everybody else?

If so, then this is for you

What is Taking Control?

Taking Control is made up of people from Autism LifeCare Trust, Down Syndrome Ireland, Inclusion Ireland, National Parents & Siblings Alliance, NIID – Trinity College, Partners for Change, Sisters of Charity of Jesus & Mary/Muiriosa Foundation, Microboard Association of Ireland, Walkinstown Association, 22q11 and other interested people.  Taking Control is campaigning for individualised funding for people with disabilities who wish it.

How the system works now

In Ireland, generally the way in which the system works is this…

When a person who needs a service reaches an age where they are due to leave school or have developed a need for a service they are given the choice of current day services in their area (if there are places available).

If someone needs a residential service, they are given the choice of residential services currently available or they are told where there is a bed available.  There are generally waiting lists for residential places – according to the National Intellectual Disability Database there are over 2000 people currently waiting for a residential place.  So, the place might not be given straight away or for many years.

Each person in a service has a set amount of money allocated for their place depending on a number of factors. Funding is generally based on negotiations with the HSE.  The service receives the money to provide the person with a service. This money goes in with all other monies the service receives so that they can provide a group service to everyone who attends that service.

A General Example: Johnny is due to leave school in June and his family want him to have something to do through the day. His social worker offers him a day service. He could choose between Service A, Service B and Service C. He picks service A but they do not have a place for him. Service B offers him a place. The HSE gives €15,000 to Service B to provide Johnny with a service. Service B adds this to their group service budget which provides services to 50 people.

The way services are funded limits the amount of choice people have over what service they choose and what they do with that service when they get it. Group service budgets are limited in responding in a person-centred manner as they have to support the needs of every person who uses the service.

An Alternative Vision - Individualisation

We would like to create an alternative vision, where the focus is on getting the person the right support to live the life they want to live.

Ask yourself this question.  If you had a disability and knew nothing about services but you needed some support to live your life to the full:

• Where would you want to live?
• Who would you want to live with?
• How would you want to spend your time?
• Who would support you and how would you want them to support you?

Then ask yourself…

Do we need only the same day services, residential services and respite or do we need a variety of supports for people to do what they want to do, in the places they want to be, with the people they want to be with?

Just because Johnny is bored during the day at home might not mean he needs a traditional day service. It might mean he needs support to do something that he enjoys! A traditional service might be an option but it should not be the only option.

How would you plan the supports needed - Person Centred Planning

Person Centred Planning is a way to help you think about these questions. Most services funded by the HSE have made the commitment through their Service Level Agreements (the agreements between the HSE and each service provider) to offer everyone who uses their services the chance to have a Person Centred Plan and ensure that these plans inform their service development.

Person Centred Plans commit to five principles…

1. It starts with a meeting of the important people in the person’s life.  The person with a disability decides who will attend.
2. He/she also decides where, when and how their plan meeting will happen and they have control over the agenda.
3. The people invited to this meeting are all treated as equals. Family, friends and professionals all have equal importance. Each person and their family and friends are recognised as experts in their own lives.
4. Planning concentrates on the person’s strengths, what’s important to them now and for their own future
5. Everyone shares the actions. It is not up to a service alone or indeed a family alone to support actions the person might need to take
6. Most importantly, plans do not focus solely on what is available already.  Person Centred Planning is about creating a life for a person not just a plan and a service. They focus on what could exist and how to make it happen.

If you, your son or daughter are not happy with the service you/ they receive you can ask your provider to support you to develop a person centred plan that you are happy with and that you have control over.

A good Person Centred Plan should outline how a person sees his/her life, what they would like to do and the support they want in their lives. There may be things included in the plan which are important for the person (health and safety concerns) but this should only make up part of the plan.

Remember, that just because something doesn’t exist at the minute does not mean it could not exist in the future.

How might this be funded?

1. Directly:  That is, where the money is put under the direct control of the individual with the disability and/or his/her carers.  It might be put in a bank account or some such.  The individual can go to a new or existing service provider for supports or can organise them him/herself.  The individual is expected to account for how that money is spent.
2. Indirectly.  That is, where someone else, such as a broker, administers the funding for the person.  It can be used in the same way as if it was given directly but it means that the broker takes the responsibility off the person or carer.
3. By cooperation with a service provider.  That is, a service provider agrees to “unbundle” money given to the service for a person and agrees to use the money exclusively for the person-centred plan of that person  (less whatever the service would need for administration).
4. Hosting by a Service Provider.  The service hosts an individual or a group of individuals to set up a  specific service for that person or those people.  The service will take an administrative fee and the rest is for support for the person/people.  The staff will be employed by the person or carer to cater for his/her/their needs.

Expert Working Group

The Department of Health have assembled a working group to look at the practicalities of this alternative vision of individualisation.

Its task is to focus on the current provision of disability services and explore the way forward for the development of services.

This will involve looking at the extent to which the existing policy objectives have been achieved and recommending revised policy objectives for future service provision. It will also consider the extent to which existing service provision corresponds to these revised policy objectives and will suggest possible changes or adjustments needed to match new policy objectives.

The Expert Reference Group will produce a draft policy document early in the new year.  Following a consultation process, it is hoped that a final document will be produced in March 2010.  This will be given to another group within the DoHC called the Value for Money Review Group who will consider its contents when preparing their report later in 2010.

We will inform everyone when the consultation process is commencing

Best wishes

The Taking Control Team

Contact us at: takingcontrol18@gmail.com