Community-based day activities and supports for people with learning disabilities

Messages from 'Having a good day' - Individualised funding

What research tells us

To achieve more individualised approaches m oney needs to be released from centre-based services and be focused on individuals. There is as yet limited evidence about how people are using individualised funding to support activities outside the home.

What's happening in practice at the moment

The In Control pilot sites and people using direct payments are beginning to show that, with individualised funding and support, people reduce their use of organised day services and choose to do other things. But the change takes place in small steps over time.
Community care purchasing budgets are under pressure, in part because of increasingly individualised approaches, with increased take-up of, and demand for direct payments.
Money is not yet being released from the block funding of day services and transferred into care purchasing budgets. Local services are finding this very hard to achieve. Few community day services have worked out the cost of the services they provide for each individual according to their support needs and the activities they pursue. Little is known about how much costs reduce over time, as people use more community facilities and develop greater independence.
People with challenging behaviour in particular appear to be benefiting from more individualised, community-based support made possible through direct payments.

Pointers for development

What's meant by individualised funding?

In essence, individualised funding is about money for support being attached to individuals rather than to services. It gives people more control. A very basic example is the attendance allowance, which is granted through the benefits system to an individual who needs support with personal care. The person can choose how to spend the money.

The main types of individualised funding currently available that may be able to support people's daytime activities are: direct payments, independent living funding (ILF) and individual budgets (see box).

Direct payments

These can be accessed by people who have had a community care assessment that identifies they need support. Instead of the local authority organising the supports and paying for them (for example, by offering a day service place), the support is organised by the person, with assistance if required, up to an agreed level and cost.

Independent Living Fund (ILF)

ILF is only available to people who already receive social services support worth at least £200 per week. It is intended to pay for personal and domestic care, including cooking and shopping, but can sometimes be used to help if people need personal care when they are not at home, such as when they are at work or socialising. It can open up all kinds of opportunities for people with higher support needs.

Individual budgets

Key features are:

a 'resource allocation' that gives individuals a clear statement about the amount of money they are entitled to spend on their care or support package
a streamlined, joined up assessment process across agencies
bringing together a variety of streams of support and/or funding from more than one agency (such as ILF, Supporting People money, benefits, etc).
people being able to use their individual budget in a way that best suits their own particular requirements
support from a broker or advocate, family or friends, as the individual desires.

What do these mean for the day service modernisation agenda?

People should be able to switch from, or reduce, their existing use of a day service to receive a direct payment and more individualised support instead.

Community day services have a part to play in helping people to access independent living funding (ILF) money.

In the future increasing numbers of disabled people will be able to use an individual budget to buy support from any services. Community day services - both independent sector and local authority - have an important role to play, but people will only choose to buy services from them if they offer what they want!

Because ILF focuses on people who have the highest support needs, often people who present challenging behaviour or have communication difficulties, the personal assistant/support role can be demanding and potentially quite isolated. Community day services can play an important role in the support network.

Community day services may have a role to play in supporting ILF workers, but it is important that they do not 'open up their doors' to the people actually being supported. It's an easy option but it's a different solution - community involvement - that's needed.

What you can do

Let people know that direct payments are an option, and give them information about what they need to do if they want to pursue it. And m ake sure that families have information about independent living funding (ILF) as well.
Have a formula to calculate the individual cost of the day service that a person is receiving. This is important because ILF eligibility is based on people already receiving a service that costs a minimum amount of money (rather than a minimum number of hours)

A basic formula (to adapt to your circumstances)

Number of hours of individual support a person needs each day from day service (or percentage of hours of shared support)

multiplied by: cost of support per hour: full cost of staff member per year divided by 253 days, then divided by 7 (hours per day)

plus: travelling costs

plus: service overheads (contribution to venue costs, equipment etc)

plus: management costs @ X%

multiplied by: number of days using service per week

See whether some people could actually reduce the number of days they use a service and still meet the £200 ILF criteria, thus opening up the possibility of having more individualised support that they control, funded through ILF money, on the other days. Be creative when helping people to apply for ILF.
Make sure that there is someone working with families to map out a supervision and support network for the ILF-funded staff who are working with people in community settings.

The dilemma and the challenge

Local authorities will need to transfer funding out of block funded services in order to make individualised funding and self-directed support work. Any and all day services will face a challenging transition period in relation to their funding base.

General points about managing the transition to self-directed support

From: Guide to self-directed support no 5: Market management. Available on: www.in-control.org.uk

Change will not be immediate and good project planning will involve phasing the transition. It may be important to ensure that efforts are focused on areas that can release resources into other areas that may need more funding, and identify areas of high waste where the shift to Self-Directed Support may make certain services far less relevant (e.g. segregated transport).

Proposed changes will be regarded with more scepticism when they are not seen as part of a broad-ranging vision of a different future. So it will be useful to make sure that the local authority does plan for the long term and is not perceived as merely tinkering with existing systems.

Change will not happen unless it is seen as relevant to immediate crises. A local authority should not be afraid to use Self-Directed Support to address serious financial and practical problems. Sceptical colleagues will be motivated by seeing success in particularly difficult areas. Individuals and families who are most dissatisfied with the present services are often the most motivated to take on Self-Directed Support and to explain its value to others.

Success breeds success and it is important to build momentum. In a strategy which is about releasing skills and energy that are presently wasted it makes sense to get the message out to as many people as possible. When you are encouraging people to control their own lives quantity promotes quality, as there are more people to learn from.

There is no getting away from the fact that a real shift in power is likely to see real shifts in how resources are used. While the local authority is responsible for putting people in control it cannot also be responsible for all the consequences of the choices that people make. Making people aware that Self-Directed Support does mean 'letting go' is going to be one of the greatest leadership challenges for senior managers.

Getting ahead

It's going to happen, so what might help? Here are two ideas:

Set up a demonstration project in the day service to help work out how to manage the transition. You could:
identify a small number of people who want to take part, who want more control over their days. Try to ensure that some people with higher support needs are included.
set some clear parameters - the expected outcomes
use the self-assessment and resource allocation formats available on the In Control website (see Links and resources)
set aside some funding from within the service budget, for example from vacant posts or by identifying savings to use.
make the service more efficient in order to manage any transitional pressure on resources. Is the service wasteful? Reduce wastage on materials, time, utilities . and use the savings to better effect!
allocate a budget to an individual, making sure they have people to support them to use it.
track progress, evaluate the results, spread the stories of change, and learn .
Reorganise staffing in the service to create some personal assistants who are allocated to work solely with individuals with the highest support needs. Set clear targets relating to:
developing a person-centred plan,
operating in community settings,
building ordinary lifestyles, and
developing more natural supports.
The aim must be to show that the hours of paid support can reduce over time.

Practice examples

The Social Regeneration Unit in the London Borough of Newham participates in the Learning Disability Partnership Board and is very engaged with inclusion issues for people with learning disabilities. Without prompting it recently organised and ran a benefits uptake campaign targeted to people with learning disabilities and involving Newham People First in making the information accessible. It both increased awareness and take-up of benefits.

Sally was excluded from her special school because of 'challenging behaviour'. Her mum didn't want her going to a day centre so she hired a tutor with her own money to teach Sally at home. The tutor focused on teaching Sally to communicate using pictures, about home responsibilities and personal care. With some help her mum developed a support plan for Sally to continue living at home. Now Sally, with her mum's help, gets direct payments and independent living funds to hire the support needed to continue her learning. She goes out in the community shopping, walking her dog, to music classes and swimming. Sally can now use pictures fluently to communicate as well as some speech. Her mum says she is 'a totally different Sally'.

Links and resources

Ben's Plan
In Control
Individual Budgets Pilot Programme (CSIP)
Support planning - information on Support Planning, and example plans for the Individual Budget Pilot sites and people involved with in Control
National Development Trust - there is a useful description of the individualised funding model and its implications
ILF factsheet from Ask Mencap.

The 13 individual budgets pilot sites: