Ian LoynesIan LoynesCo-ordinator, SCILCo-ordinator, SCIL

Presentation:Presentation:

Direct Payments -Direct Payments -

The route to independenceThe route to independencePresentation © SCIL 2004 unless otherwise indicatedPresentation © SCIL 2004 unless otherwise indicated

Promoting equality across the South

Southampton Centre for Independent Living

(1)(1) to provide a means by which disabled people may to provide a means by which disabled people may take control over their own lives, achieve full take control over their own lives, achieve full participation in all spheres of society, and effect participation in all spheres of society, and effect changes in how they are viewed and treated;changes in how they are viewed and treated;

An organisation run and controlled by disabled people, working to the principles of the social model of disability

Southampton Centre for Independent Living

(2)(2) to provide encouragement, assistance, to provide encouragement, assistance, advice, support and facilities to individuals advice, support and facilities to individuals or groups wishing to live independently, and or groups wishing to live independently, and to raise the expectations of disabled people, to raise the expectations of disabled people, individually and collectively, and ensure that individually and collectively, and ensure that their voice be heard.their voice be heard.

Our Aims:Our Aims:

Direct Payments?

Direct Payments are different from other Social Direct Payments are different from other Social Care provisions. They were designed by Disabled Care provisions. They were designed by Disabled People as an emancipation tool. As such they People as an emancipation tool. As such they should not be split from the following principles:should not be split from the following principles:

The Social Model of DisabilityThe Social Model of Disability EmpowermentEmpowerment Independent LivingIndependent Living

All these terms are much used now-a-days.All these terms are much used now-a-days.Unfortunately, they are often misused or Unfortunately, they are often misused or misunderstoodmisunderstood

The Social Model of The Social Model of Disability…Disability…

You are theproblem!!

Southampton Centre for Independent Living

THE SOCIAL MODEL OF DISABILITY

“It is not my impairment that prevents my equal participation in

society; but the barriers that society places in front of me that prevents my inclusion and therefore disables

me”

i.e. steps rather than ramps

THESOCIAL MODEL OF

DISABILITY

Disabled people have identified Disabled people have identified twelvetwelve basic needs, which if basic needs, which if met would enable them to fully participate in society. SCIL met would enable them to fully participate in society. SCIL is committed securing these as rights, both locally and is committed securing these as rights, both locally and nationally.nationally.

1.1. Full Full ACCESSACCESS to our environment to our environment2.2. A fully accessible A fully accessible TRANSPORTTRANSPORT system system3.3. TECHNICAL AIDS/EQUIPMENTTECHNICAL AIDS/EQUIPMENT4.4. Accessible / adapted Accessible / adapted HOUSINGHOUSING5.5. PERSONAL ASSISTANCEPERSONAL ASSISTANCE6.6. Inclusive Inclusive EDUCATIONEDUCATION and and TRAININGTRAINING7.7. An adequate An adequate INCOMEINCOME8.8. Equal opportunities for Equal opportunities for EMPLOYMENTEMPLOYMENT9.9. Appropriate and accessible Appropriate and accessible INFORMATIONINFORMATION10.10. ADVOCACYADVOCACY (towards self advocacy) (towards self advocacy)11.11. COUNSELLINGCOUNSELLING12.12. Appropriate and accessible Appropriate and accessible HEALTH CAREHEALTH CARE provisionprovision

Key barriers that disable us:

Empowerment…Empowerment…

• To invest with power, especially legal power

• To equip or supply with an ability

• To enable

In reality those who wish to be ‘empowered’ have to take power, rather than waiting to be given power!

Definition ofEmpowerment:

Independent Living…Independent Living…

Origins of Independent LivingOrigins of Independent Living

Independent Living is part of Disabled People’s Independent Living is part of Disabled People’s Movement to attain full civil and human rightsMovement to attain full civil and human rights

People living in residential care wanted to break People living in residential care wanted to break free of regimes “We can take care of ourselves free of regimes “We can take care of ourselves and the money too!” - first instance of and the money too!” - first instance of DIRECT DIRECT PAYMENTSPAYMENTS - disabled people with ‘complex - disabled people with ‘complex needs’ employing personal assistants directlyneeds’ employing personal assistants directly

Local Centres for Independent Living developed Local Centres for Independent Living developed expertise and proved effectiveness through ‘pilot expertise and proved effectiveness through ‘pilot schemes’schemes’

Independent Living is not...

Independent Living is...

Southampton Centre for Independent Living

What is Independent Living?

Having Choice & control over your life

and a say over what happens

to you

What isIndependent

Living?

Southampton Centre for Independent Living

INDEPENDENT LIVING INDEPENDENT LIVING PHILOSOPHYPHILOSOPHY

““Independent Living is not about doing Independent Living is not about doing everything for yourself, it is about having everything for yourself, it is about having enough support to lead the life that you enough support to lead the life that you choose.”choose.”

That all human life is of value

That anyone, whatever their impairment, is capable of making choices [with support if needed]

That people disabled by society’s reaction to impairment have the right to control over their lives

That Disabled People have the right to participate fully in society

It was from this growing recognition, that Local Authorities and then Central Government responded to the demand of Disabled People for the introduction of Direct Payments.

INDEPENDENT LIVING AND COMMUNITY CARE

• Neither Community Care or Direct Payments equal Independent Living. This is because they do not address all of the ‘basic needs’ – in fact no legislation currently does. It merely pays lip service to it and provides one means by which disabled people try to access their human and civil rights.

• The entitlements of Disabled People, in so far as they exist, are scattered in many different pieces of legislation (approx. 150)

• Any infringements of these entitlements are infringements on the human and civil rights of Disabled People – including those infringements arising from consideration of resources when determining eligibility criteria.

Direct PaymentsDirect Payments

What, Who, Why & How…What, Who, Why & How…

Social Services can support Social Services can support Disabled People in 2 waysDisabled People in 2 ways

By providing

Direct Care /

Services

By providing finance to Disabled People to

enable them to employ their own personal

assistantsHome care

Day Centre

Respite Care

Peer support

Advice / Info

Advocacy

Control rests with the provider – Disabled person has little choice

Control rests with the Disabled person – They exercise choice and control over their own lives

Direct Payments – History Lesson

3 Disabled People in a Hampshire residential home 3 Disabled People in a Hampshire residential home said “Give us the money you pay to the home and said “Give us the money you pay to the home and we’ll manage our our care needs”. Forerunner to we’ll manage our our care needs”. Forerunner to Direct Payments Direct Payments

Disabled People liked these ‘Self Operated Care Disabled People liked these ‘Self Operated Care Schemes’ as they enabled them to live independentlySchemes’ as they enabled them to live independently

Some Local Authorities could see the advantages to Some Local Authorities could see the advantages to these schemes – choice and control for Disabled these schemes – choice and control for Disabled People – Cost Effective to LA’sPeople – Cost Effective to LA’s

However, schemes where patchy and variable as However, schemes where patchy and variable as some LA’s worried they might be illegalsome LA’s worried they might be illegal

Disabled People eventually convinced Government to Disabled People eventually convinced Government to legislate to create the “Community Care – Direct legislate to create the “Community Care – Direct Payments Act”Payments Act”

Key Points To The Direct Payments Act

The Community Care (Direct Payments) Act 1996 came The Community Care (Direct Payments) Act 1996 came into force in April 1997into force in April 1997

The act gave Local Authorities the power to make The act gave Local Authorities the power to make direct cash payments to disabled people in lieu of direct cash payments to disabled people in lieu of community care servicescommunity care services

The Direct Payments Act’s key aim was to promote the The Direct Payments Act’s key aim was to promote the principle of Independent Living (as defined by disabled principle of Independent Living (as defined by disabled people)people)

The act has been extended. It is now effectively The act has been extended. It is now effectively mandatory and covers older people, carers, younger mandatory and covers older people, carers, younger people and parents of disabled childrenpeople and parents of disabled children

What a Direct Payment can be used for

Standard use is to recruit and employ your Standard use is to recruit and employ your own staff (Personal Assistant), but:own staff (Personal Assistant), but:

Can be used to purchase Can be used to purchase any service any service defined as a community care servicedefined as a community care service (private care agency / day care), except (private care agency / day care), except permanent residential care permanent residential care

respite care is allowed - a limit of 4 weeks respite care is allowed - a limit of 4 weeks within each 8 week periodwithin each 8 week period

What Direct Payments cannot be used for

Cannot be used to buy Local Cannot be used to buy Local Authority services – i.e. a Day Authority services – i.e. a Day ServiceService

[However, mixed packages can be [However, mixed packages can be arranged to meet these needs]arranged to meet these needs]

Who can receive a Direct Payment?

Person has to be Person has to be willing willing to use a Direct to use a Direct PaymentPayment

Person has to bePerson has to be able able to manage the to manage the scheme (alone or scheme (alone or with assistancewith assistance))[[Blanket judgements should not be madeBlanket judgements should not be made]]

There are exclusions for people subject to There are exclusions for people subject to certain mental health or criminal justice certain mental health or criminal justice measuresmeasures

Who can receive a Direct Payment?

Any disabled person aged 16 or overAny disabled person aged 16 or over

A disabled person is defined by the act as A disabled person is defined by the act as any person to whom Section 29 of the any person to whom Section 29 of the National Assistance Act applies. This National Assistance Act applies. This includes people with physical impairment, includes people with physical impairment, sensory impairment, learning difficulty, sensory impairment, learning difficulty, mental health difficulty, HIV/AIDSmental health difficulty, HIV/AIDS

Carers and Parents of disabled childrenCarers and Parents of disabled children

Personal Assistance Advisors

Direct Payments as a concept was ‘invented’ by Direct Payments as a concept was ‘invented’ by disabled peopledisabled people

Some people need support to boost skills and Some people need support to boost skills and confidence to self manageconfidence to self manage

PAA’s promote, inform and support both disabled PAA’s promote, inform and support both disabled people and care managers on all aspects of the people and care managers on all aspects of the schemescheme

The PAA assists the client with self–assessment, The PAA assists the client with self–assessment, explaining how the scheme operates, finding staff, explaining how the scheme operates, finding staff, Record keeping etc.Record keeping etc.

Personal Assistance Advisors

PAA’s help make people aware of the PAA’s help make people aware of the responsibilities of being an employer, i.e. Legal responsibilities of being an employer, i.e. Legal obligations, health and safety,tax and national obligations, health and safety,tax and national insuranceinsurance

Assist with recruitment, i.e. advertising for Assist with recruitment, i.e. advertising for staff, interviewing, job descriptions, contracts staff, interviewing, job descriptions, contracts of employmentof employment

Some PAA's have personal experience of Some PAA's have personal experience of disability and are personal assistance users disability and are personal assistance users themselvesthemselves

Direct Payments is simply a method by which Social Direct Payments is simply a method by which Social Services can provide a person’s care packageServices can provide a person’s care package

Does not affect any other allowance such as DLA, IS, SDA Does not affect any other allowance such as DLA, IS, SDA or student allowances or student allowances (excl double funding)(excl double funding)

Similarly, eligibility for Direct Payments is not affected by Similarly, eligibility for Direct Payments is not affected by other benefitsother benefits

Direct Payments is usually means tested – recipients may Direct Payments is usually means tested – recipients may be expected to ‘contribute’ to the cost of their care as per be expected to ‘contribute’ to the cost of their care as per traditional care packagestraditional care packages

Direct Payments do not affect Tax Returns!Direct Payments do not affect Tax Returns! However, there are clearly links between DLA, Direct However, there are clearly links between DLA, Direct

Payments, ILF, ATW and other allowances. Disabled People Payments, ILF, ATW and other allowances. Disabled People often have to negotiate many of these to get all their often have to negotiate many of these to get all their needs met.needs met.

Direct Payments – Direct Payments – Link to other allowancesLink to other allowances

Young Disabled People want to be just like their non-Young Disabled People want to be just like their non-disabled peers – they want their independence and disabled peers – they want their independence and naturally want to be less dependent on parents naturally want to be less dependent on parents

Therefore an ideal environment for Direct PaymentsTherefore an ideal environment for Direct Payments Having an ability to communicate has to be a basic Having an ability to communicate has to be a basic

human right and a major factor in independencehuman right and a major factor in independence There are many examples of Direct Payments being There are many examples of Direct Payments being

used to improve people’s ability to communicate, either used to improve people’s ability to communicate, either via equipment or via a PA who ‘learns’ to understand an via equipment or via a PA who ‘learns’ to understand an individual and relays information to those who can not individual and relays information to those who can not understandunderstand

Direct Payments where invented by people with very Direct Payments where invented by people with very complex needs and usually have a much better outcome complex needs and usually have a much better outcome for these people than for people with lesser needs.for these people than for people with lesser needs.

Direct Payments – Direct Payments – Meeting complex needs & communication Meeting complex needs & communication

difficulties in young peopledifficulties in young people

Contact local Social Services DeptContact local Social Services Dept

Contact and involve local support service (PAA’s)Contact and involve local support service (PAA’s)

Disabled People must be encouraged to understand Disabled People must be encouraged to understand their rights and to self-assess their needs – prior to their rights and to self-assess their needs – prior to formal Social Services assessmentformal Social Services assessment

Don’t take NO for an answer – Eligibility criteria can Don’t take NO for an answer – Eligibility criteria can be restrictive and Care Managers are often be restrictive and Care Managers are often gatekeepers of resources and may be unwilling to gatekeepers of resources and may be unwilling to fully examine fully examine all ofall of an individuals needs which will an individuals needs which will properly enable them to live independentlyproperly enable them to live independently

Direct Payments – Direct Payments – Roadmap & pitfalls to avoid…

In policy, the same needs as any other care In policy, the same needs as any other care provision. In practice assessment for provision. In practice assessment for independence are often radically different to independence are often radically different to dependency based servicesdependency based services

Ever tightening eligibility criteria are threatening Ever tightening eligibility criteria are threatening principle of independenceprinciple of independence

Depending on eligibility, Direct Payments can Depending on eligibility, Direct Payments can meet Personal, Domestic and Social needsmeet Personal, Domestic and Social needs

If Health or Access to Work have inputs to care If Health or Access to Work have inputs to care needs then arguments about who pays for what needs then arguments about who pays for what can be farcical!can be farcical!

Direct Payments – Direct Payments – What needs do they meet?What needs do they meet?

Provides important choice and Provides important choice and control over:control over:

WhoWho provides our PA support provides our PA support WhenWhen it is provided it is provided WhatWhat we are supported to do we are supported to do “ “No more waiting in queues”No more waiting in queues” HowHow it is provided it is provided

All in all, an independent life & the All in all, an independent life & the route to empowering young disabled route to empowering young disabled peoplepeople

Direct Payments - the key Direct Payments - the key to Independent Livingto Independent Living

Thank You!Thank You!

www.SouthamptonCIL.co.ukwww.SouthamptonCIL.co.uk

Info@SouthamptonCIL.co.ukInfo@SouthamptonCIL.co.uk

National Centre for Independent Living:National Centre for Independent Living:

www.NCIL.org.ukwww.NCIL.org.uk