Towards a Better Future Making it Work The Feedback from a Project to Support the Development of Services for People with Physical Impairments in Kent

Engagement Task We were commissioned by Kent County Council to engage with people with physical disabilities, to find out their views and experiences of Adult Social Care Services in Kent. We asked them what is working, what is not working and how they think services could be improved in the future. We met with over 250 people with physical disabilities and 60 service providers who are there to support physically disabled people, across the County. Our report details all of our findings and our recommendations come directly from what people actually said to us.

Methodology Questionnaires Visiting Existing Support Groups Open Forums Providers Forums

MAIN AIM OR CENTRAL FUNCTION Where When With Whom By Whom What How Model Coherency (Wolfensberger) SERVICE SETTINGS LOCATION ENVIRONMENT ROUTINES SCHEDULES TIMINGS GROUPINGS ROLES IDENTITIES BACKGROUNDS CHARACTERISTICS SKILLS ROLES Language SERVICE CONTENT ACTIVITIES PROCESS METHODS STYLE ATMOSPHERE WORDS LABELS DESCRIPTIONS

Independent Living Where When With Whom By Whom What How What people told us should be happening Own home (suitably adapted) Accessible community/buildings/facilities/transport Shop-front services/local services/Hub/CFIP Local peer support/networking/social opportunities Accessible workplaces/holidays/leisure/education Genuine rehabilitation facilities Range of places to choose from Services at same times as everyone (24 hour availability) Shorter waiting times for aids/adaptations Paid carers who can work at times they are needed Family, friends, colleagues, peers The same people as everyone else (relevant to circumstances) People chosen by the person (e.g. who share interests) Other disabled people who have expertise/ 'lived experience'/shared values People who know the person & understand their needs & have relevant training Personal Assistants employed by the person Disability-Led Organisations (Independent) (DPULO) Language Comprehensive service which meets individual needs Part of what is available to anyone in the community Independent living with appropriate support Easily accessible, accurate Information, Advice, Advocacy Relevant Assessments/Person-Centred Plans Individualised Support Packages/Personal Budgets Peer/Trusted/Independent supports, Self-directed supports led/chosen by person, Aids /adaptations fitted around individual needs & choices Good Health & SSD integration, Job opportunities Individually tailored/holistic/ person-centred approach, face-to-face personal support, Personal Budgets/ Direct Payments/Benefits system that works, Personal Assistant supports/PA Agency, Person-led Assessments Joint Funding/Partnerships/Partnership Boards, Well integrated Health/Social Care Meaningful daytime opportunities Good accessible Transport Services Simplified system for provision of aids/ Adaptations, Disability Awareness/ Anti-Discrimination Training, DPULOs working with Case Managers & clearly defined roles. Effective supported employment services Empowering, Respectful, Positive, Empathetic, Enabling, Respectful

Independent Living Where When With Whom By Whom What How What is happening now Many inaccessible places Traditional Day Centres, Buildings not suited/ designed for purpose, Respite service/nursing home/institution/rehabilitation unit, Limited accessible/adapted Housing, Limited accessible transport services, Hard to navigate KCC website/ contact right person Limited/pre-determined times No chance of spontaneity Care agency workers at wrong times/rushing tasks Aids & adaptations take too long Accessible transport not available at same times as everyone else People with similar conditions Often not by choice Usually in groups/inappropriate age groups (e.g. respite/ rehabilitation) Segregated/isolated/alone Under-resourced/inadequately trained Case Managers/ Health Care Professionals/ Council Staff, Primarily 'able- bodied' people without experience/empathy, Care Agencies, 'strangers', unpaid Family/Carers (poorly supported/ stressed), Poorly funded Voluntary Organisations/Charities/DPULO's Language Some have no service/many not enough support, Lack of information/independent advice, Dependency/isolation/no computer, No control/not being heard, Deteriorating physical & mental health, Too many assessments/re-assessments No support plan, Low income, Confusion about Direct Payments/no Direct Payments, Lack of aids & adaptations, Stuck at home, cannot afford day service charges, Isolated, meaningless Consultations, Discrimination, 'Quick fixes', Lack of positive examples. Older People and Physically Disabled' people's service (OPPD) 'Transformation Programme‘, Budget-led Assessments, Poorly resourced/ overworked staff, Complex changing Benefits System, Poorly explained Direct Payments opportunities, Expensive Care Agency contracts, Lack of creativity/new Ideas, Too much red-tape, Little or no funding for aids & adaptations, money wasting, Poor links between children's & adult services Patronising, Insensitive, Condescending, 'Caring' not enabling, Ignoring, Controlling, Discriminatory, 'Scroungers'

1.Information, Advice and Advocacy Disabled People’s User Led Organisations are best placed to provide, Information, Advice and Advocacy Advice from other disabled people, with first hand experience, who are on their side and have the training and expertise to really understand their situation Clear up-to-date, accurate, information in accessible formats (dedicated website) Promotion of self-advocacy with focus on physical disability, as part of broader advocacy service - supporting people to speak up for themselves

2. Assessments and Support Planning Relevant, personalised, easy to understand assessments and support plans in accessible formats (reduced duplication & paperwork) Genuine Person-Centred Approach promoting Self-Assessment (person-led, needs- led rather than budget-led by 'professionals') Acknowledge that disabled people understand the support they require better than anyone! Clear framework, eligibility rules, regular reviews Training for existing KCC staff - preferably provided mainly by disabled people

3. Case Managers Clarification of Roles of the Case Manager (Community/Hospital) and Care Navigators Well-trained in Disability Awareness, Person-Centred Approaches, Benefits & Financial Advice etc. Re-establish local Case Management Services ensuring consistency and individualised, personalised working relationship Case Management Service could meet increasing demand by sharing tasks in partnership with independent/disability-led organisations (e.g. assessment & planning, brokerage)

4. Direct Payments and Personal Budgets Better Promotion of Direct Payments and Personal Budgets to facilitate employment of Personal Assistants by individuals (e.g. Direct Payment rates not increasing in line with the minimum wage) Clear eligibility rules for individuals and charging rates for providers Provide user-led support working alongside the Direct Payment Coordination Team, including training on employment/management of Personal Assistants If (expensive) Care Agencies are required, they need disability awareness training and to take on holistic/enabling approach Re-establish a specialist PA Agency

5. Health and Rehabilitation Information and Advice service from NHS facilities (hospital/GP) -Structured ‘pathway’ for follow-up services in community -Review of Respite and Rehabilitation services are needed – less institutional options such as accessible holidays and enablement support at home 6. Aids, Equipment and Adaptations Review bureaucratic, lengthy, costly application/assessment process Speed up provision/delivery/installation to lessen risk of delayed recovery and deterioration in health & rehabilitation (priority to most in need) Partnership work with disability-led organisations using 'experts by experience'

7. Day Services Many people still rely on traditional day centres, which are often the only support/social contact available to isolated individuals KCC should acknowledge that people value peer support, social networking and camaraderie, by funding these services properly during transformation, which takes time Closure should not go ahead until accessible community alternatives are available providing meaningful/chosen activities for all levels of disability and appropriate on-going supports Improve/fund better Transport links to community facilities Review Charging Policy which is excluding people who need this service

8. Access Improve exterior/interior access to and within public buildings Encourage businesses to be more responsible in their duties to disabled people Use disabled people's expertise (e.g. Access Groups) in design, planning, assessment and monitoring accessibility, as well as training architects and planners Develop on-going project to ‘police’ the community

9. Transport Accessible public transport/community transport services (esp. rural Kent) must be improved to reconnect disabled people to their communities and reduce their isolation 10. Employment Increase Supported Employment Services and promote benefits of Supported Employment Schemes to local businesses Employ more disabled people in Council and commissioned services 11. Transition (Children to Adult Services) Improve 'transition planning' by developing ‘person-centred future planning’ Support young disabled people to live independently from parental home to prevent later crisis, when parents are too old to maintain support

Living in your own home Support from family and friends Paid support – employing your own personal assistants Appropriate healthcare and counselling if needed An adequate income Necessary equipment, technical aids and housing adaptations Expert advice and advocacy Accessible transport and an accessible community Equal opportunities for education and leisure Equal opportunities for employment Living in your own home Support from family and friends Paid support – employing your own personal assistants Appropriate healthcare and counselling if needed An adequate income Necessary equipment, technical aids and housing adaptations Expert advice and advocacy Accessible transport and an accessible community Equal opportunities for education and leisure Equal opportunities for employment What Matters Most! 10 Fundamental Basic Common Needs:

Remaining independent longer Enabling people to regain independence Improving their quality of life Staying in their own homes Making people less dependent on Social Services Remaining independent longer Enabling people to regain independence Improving their quality of life Staying in their own homes Making people less dependent on Social Services This leads to:

Good Practice Example Information and Advice - The Hub – Surrey High street locations in most districts 'Drop-in' style (Disabled) Volunteers providing information, advice or signposting In return the Disabled Volunteers receive: Excellent training and support Real work experience Meaningful activity, encouraging independence, building confidence Creating positive and visual role models in the community Sometimes leading to paid employment.

Any Questions?