1. The National Autistic Society (NAS) is the leading charity for people with an autistic spectrum disorder (ASD) in the UK. It has a membership of over 12,000, a network of 60 branches, and 90 partner organisations in the autism field. The NAS is in a unique position to comment on issues affecting people with autistic spectrum disorders because it operates in all four nations of the UK. The NAS exists to champion the rights and interests of all people with autism and to ensure that they and their families receive quality services, appropriate to their needs. There are approximately 535,000 people with autistic spectrum disorders in the UK. The NAS welcomes the opportunity to comment on the Independence, Well-being and Choice Green Paper.
Consultation Question 1: Does the vision for adult social care as set out summarise what social care for adults should be trying to achieve in the 21st century?
2. The NAS largely supports the vision of social care set out in the Green Paper. We particularly welcome the recognition that preventative services can bring significant benefits and the need for agencies to work together to improve outcomes. We also welcome the continued acknowledgement that those individuals with the highest needs must receive appropriate support.
3. However, under current funding allocations it can be difficult for social care to meet even the requirements of those individuals with the most complex needs. While preventative services may bring cost savings in the long term, achieving the vision in the Green Paper will require substantial additional funds. We strongly urge the Government to reconsider the attempt to reconfigure social care within the same funding envelope. If real improvement is to be achieved and current services for those in need are to be maintained, additional costs will be incurred. This is an ambitious vision and additional resources are a necessity to realise it.
4. We explore these issues further on in this response.
Knowledge of autistic spectrum disorders
5. It is essential that those developing policy and services for individuals with autistic spectrum disorders (ASD) have an understanding of the condition. This also applies to people delivering those services. This is vital not only to ensure the appropriate development of services for individuals with an ASD but also to maximise the potential for the individual to be actively involved in the process. The concept of choice may not be easily understood by individuals with an ASD and while many will be able to make choices, they may require considerable support to do so and/or to communicate those choices. Enabling an individual to exercise their right to choose requires an understanding of ASDs and additional support.
Choice and independence
6. The NAS also believes it is worth emphasising that choice is not a means only to achieving an independent lifestyle but is an end in itself and that there is a distinction between 'independent living' and living independently. While many individuals will want to maximise the independence of their living arrangements and should therefore be supported to do so, some individuals may choose to exercise their right to live in a more supported environment.
7. Definitions of independent living attempt to address this issue by clearly locating independence in the context of choice. The Improving Life Chances report uses the Disability Rights Commission's (DRC) definition of independent living which places the choices and aspirations of disabled people at the centre of the definition. However, we are concerned that without continued clarity as to the meaning of independent living, there is a potential for it to be misconstrued so that for some the ultimate ambition becomes increasingly independent lifestyles and the focus on choice becomes secondary.
8. The definiton of independent living used in the Green Paper: "this is not just about being able to stay in your own home but is also about providing people with choice, empowerment and freedom" does not offer the same clarity as the DRC definition referred to in Improving Life Chances "all disabled people having the same choice, control and freedom as any other citizen - at home, at work and as members of the community. This does not necessarily mean 'doing everything for themselves', but it does mean that any practical assistance people need should be based on their own choices and aspirations."
9. The NAS is currently producing a Department of Health funded report- 'Autism and Independence: Good Practice'. The report will examine a range of positive models that facilitate independence and will focus on identifying good practice. It will consider independence in terms of interdependence. This term offers a more evolved idea of the concept of independence. We hope that the final report will prove a useful tool in putting the vision into practice.
Consultation Question 2. Are these the right outcomes for social care?
10. We support the concept of outcomes for social care against which performance can be measured. We would like the Government to consider further how to embed the outcomes throughout the social care structure. If the outcomes are to be achieved for all individuals, existing targets and performance frameworks should be re-considered to ensure they are truly inclusive and do not have a distortive effect to the disadvantage of certain groups.
Chapter 4: Putting People in Control: improving assessment, direct payments and individual budgets
11. We agree that councils should be encouraged to explore how they can provide easier to understand information for the range of client groups. One of the primary features of ASDs is communication difficulties. If those individuals with an ASD are to be truly enabled to make decisions about their lives then they will require access to information designed with their needs in mind. Adults with ASDs can communicate effectively but enabling tools for communication have to be in place (on the individuals terms).
Consultation Question 4. Should we take forward proposals to minimise the need for people to provide broadly the same information, for instance by sharing information between agencies such as the local authority and DWP?
12. We believe this would be sensible but there are a number of obstacles to achieving it in practice. In part, this arises because each agency needs specialist information and in acquiring this they also tend to duplicate the more general information. Obstacles are often very practical, for example, using different computer databases, or not knowing that an agency is working with your client.
Consultation Question 5. We welcome views on modernising assessment and putting individuals at its centre. We are particularly interested in the practicalities of self-assessment. Do you think that there should be professional social work involvement in some or all assessments?
13. While the NAS recognises the value of self assessment and would support the principle of extending self assessment as appropriate, we believe it is important to note that it would not be suitable for all individuals. For some individuals self assessment may be achievable with additional support. However, there would need to be advocacy services available to make this a reality.
14. Achieving a realistic assessment of needs can require the input of family knowledge. The profile of need for people with an ASD is highly individual and assessors should have an approach that appreciates the specific requirements of the communication process and is able to anticipate the extended time, detail and use of knowledge from legitimate supporters/enablers that is required.
15. The advantage of a community care assessment is that it includes information from a person's whole network to build up a picture - this is vital in cases for instance where someone with ASD might behave very differently at home than at a day service (with differing care implications) or where someone with Asperger syndrome may overestimate their own abilities or care needs, or struggle to express them even if they are intellectually able to complete a self-assessment form.
Consultation Question 6. Do you have views on whether the SAP, the CPA and person-centred planning (PCP) should be further developed to provide a tool for use with all people with complex needs?
16. Person Centred Planning and the Care Programme Approach can work well with people with more complex needs. Although an individual may find it difficult to communicate it does not mean that it is impossible to assess their likes and dislikes and lifestyle preferences.
17. We support the person centred approach and believe that PCP can address complex needs and deliver positive life outcomes. Person centred planning can work for individuals with an ASD. However, a distinctive ASD approach which takes into account the specific needs of individuals with an ASD is required- this is an ethical approach.
18. We have had very positive experiences of some people with complex difficulties being able to contribute to, and enjoy developing, their plan. We also believe that for those people with complex autism who want to achieve ordinary living in the community, providers have to be committed to a person centred approach and be willing to be creative.
19. The CPA approach ensures accountability and transparency, and that an audit of treatment and efficacy is available for an individual. It stops people getting caught between professionals and approaches. Individuals supported in social care homes with complex health needs should be able to access CPA processes that allow for their health care to be monitored.
Consultation Question 7. How can we encourage greater take-up of direct payments in under-represented groups such as older people and people with mental health problems?
20. The NAS believes that consideration should also be given to how greater take up of direct payments by carers could be encouraged. Areas with a strong carers strategy allowing access to direct payments have produced evidence of good practice.
Consultation Question 8. Extending the scope of direct payments
21. We welcome the clear statement that the decision of capacity will be made under the provisions of the Mental Capacity Act, and therefore the acknowledgement that a person is assumed to have capacity unless it is established otherwise. However, assessing capacity in individuals with an ASD can be difficult - someone may have very good verbal skills but lack capacity, and vice versa. Capacity can also be in flux.
22. A social worker would need to have had adequate training in ASDs to be able to make these decisions on capacity. One alternative might be a joint decision on capacity in a network meeting - a consensus from those who work with and are related to the person - for example a key worker will probably know the person far better than their social worker, and the family will also most probably know the best way to communicate with someone. A social worker would need to make a final decision in the event of differing opinions in the network.
i. Do you think we should review the exclusions under the direct payments regulations?
ii. Do you think that extending direct payments should initially be a power or a duty for local councils?
23. The extension of direct payments should be a duty for local councils. However, take-up of direct payments should continue to be voluntary.
iii. What do you think about the proposal to extend direct payments via an agent to groups currently excluded, namely those unable to give consent or manage a payment, even with assistance?
24. We welcome the extension of direct payments to those who are excluded as a consequence of being unable to consent to them. We believe that direct payments can offer users significant benefits, including the potential to allow individuals to develop imaginative personalized packages.
25. There are, however, problems associated with direct payments. For an individual, this is associated with the work involved in using them with the consequence that often people lack the energy to manage them themselves and are intimidated by them. For services as a whole, there is a potential for direct payments to impact negatively on local authority service provision. Local authorities currently struggle to provide appropriate services for people with autism who have complex needs. The NAS is concerned that authorities in this position may promote direct payments as an alternative to developing and resourcing appropriate services.
26. We are concerned as to whether there are sufficient specialist service providers for those individuals who do receive direct payments, as we feel that independent providers will not develop specialist ASD provision if resources are insufficient and volume is not guaranteed.
27. We agree that direct payments should continue to be offered to disabled people as a choice, and it is vital that the individual should not be pressured or directed into taking a direct payment instead of a service. It would be unhelpful for government to simply identify the number of direct payments issued by a local authority as an indicator of good practice, as this does not necessarily encourage appropriate use.
28. The Green Paper states that when it is in an individuals best interests the local authority will nominate an agent to manage a direct payment. There is potentially a conflict of interests in the decision making process of what constitutes an individuals best interests. Although not particularly clear in the Green Paper, it appears that the agent becomes involved once the decision to take up a direct payment has been made by the local authority. It would be more appropriate, especially for those individuals without family and friends, for an advocate to be involved in making that decision.
29. Agents appointed to manage direct payments for individuals with an ASD should have an understanding of autism.
Consultation Question 10. We are committed to the introduction of individual budgets to give people greater control over their lives. We would welcome views on the proposals to pilot individual budgets.
30. We welcome the proposal to pilot individual budgets. If individual budgets can capitalise on the positive elements of direct budgets while minimising the unpopular aspects, that would be a significant step towards offering improved choice to individuals and maximising the potential behind the concept of direct budgets.
31. There are a number of elements to individual budgets that have yet to be fully determined, including: which other funds are within scope of an individual budget, how suitable the proposal is for different groups, and what the expected consequences might be for local authority provision and other service providers.
32. We would like the proposed pilots to be extensive and varied in scope, so that when it comes to making final decisions on whether to adopt the scheme nationally and what form it should take, they are done so based on considerable evidence. The pilots could consider the involvement of a care broker attached to a local authoritys Carers Strategy and the Valuing Support Team that could help users and families plan and implement their own choices. What is particularly important is that whoever acts as a care broker (or the other options considered in the Green Paper) has knowledge of ASDs and a suitable approach for ASDs. It is vital that the pilots specifically include, and monitor the experience of, individuals with an ASD.
Chapter 5: The role of the wider community
33. The NAS welcomes consideration of the role of carers. It is important that sufficient regard is given to the needs of this group as work on this agenda continues. Parents and carers should be included, valued and consulted in service planning and provision in adult care.
34. NAS research1 has highlighted how the failure to provide effective support for people with ASDs has resulted in additional financial and emotional burdens on carers. A preventative approach should acknowledge the need to support carers and a carers strategy has to give sufficient regard to autism being life long and pervasive. 'Taking Responsibility'2 provides good practice guidelines for supporting carers of individuals with ASD.
Chapter 6: Funding and Fair Access to Care
Consultation Question 12. What do you think will be the impact of shifting the balance of services from high-level need to earlier, preventative interventions on the eligibility criteria and what this might mean for FACS?
35. Assessing needs for an individual with an ASD requires an ASD specific approach. Fair Access to Care has to be inclusive of ASD so that it is able to accommodate the individual achieving competence for some part of the day. He or she may be genuinely struggling with some very routine daily living. Flexible support can alleviate profound anxiety and fear. There is a need to respond imaginately to highly unique needs. See also response to Q17.
Chapter 8: Shifting the focus of services: strategic commissioning
36. The NAS strongly welcomes the recognition that preventative interventions can bring real benefits. 'Low-level' social support could help prevent someone developing depression and needing expensive psychiatric care, or a small amount of respite for a stressed carer could help keep someone out of long term residential care. Spending early can save money in the long run. The case studies below illustrate this further.
Case studies3: the need for preventative services
Jenny was left financially secure by her parents when they died, and they had been promised by her social worker that she would continue to be offered support in her own flat. Nevertheless her social worker then left, financial cutbacks resulted in almost all non-emergency services being withdrawn, and it was only when an aunt visited and found Jenny to be living in filthy conditions, with hardly any food, that some minimal support was reinstated. However, because she is able to support herself financially, is of normal IQ and has a permanent job her need for ongoing help has never been acknowledged and major crises continue to occur at regular intervals.
Anna had always lived at home with her mother and was very dependent on her for all her needs. When her mother died suddenly social services became involved, although they had never previously been aware of her needs. They found her a tiny flat, helped her to furnish this and taught her basic cooking, shopping and cleaning. Surprisingly she coped very well, but as they became aware of her social isolation and vulnerability a key worker was alloted to 'call in' every few days and keep a check on possible problems. This degree of supervision was neither expensive nor time consuming but , because it was offered before problems arose, has undoubtedly helped to prevent major difficulties.
37. The NAS continue to be concerned about the difficulties individuals with more high functioning autism face when trying to receive support and appropriate services. It often appears that a lack of understanding of ASDs combined with the division of responsibility of support strutures at local authority level have combined to deprive individuals with Asperger syndrome of support. It is still the case that adults with an autistic spectrum disorder often fall between Social Services Learning Disability Teams and Mental Health Teams. 'Taking Responsibility' has recommendations of good practice to address this4.
Case study: the need to address the gap between learning disability and mental health
We recently received a call to our helpline from a father with a 23-year-old son, Ben, who has Asperger syndrome. The local authority has refused to provide Ben with any support and he is now sleeping rough. He has been through the mental health and learning disabilities teams but was told him he was not eligible for support. Bens father complained to the local health authority who said that when his son developed a mental health difficulty they would put support in place.
38. A clear allocation of responsibility is needed and will be essential if the benefits of preventative care are to be realized. Below are case studies of good practice adopted to address this gap.
Case studies: good practice
In South East Scotland, money from the Scottish Executive has been used to set up a One Stop Shop for adults with Asperger syndrome. The service includes provision of social groups, a meeting place, information resource, employment support, a volunteer co-ordinator, parents support, and specialist health input as required
Kingston have established a standard assessment protocol for all adults referred for diagnosis with suspected Asperger disorder which is used across the learning disability and adult mental health services. They also have in place a protocol for deciding which team should initially work with new vulnerable clients (and this includes, but is not limited to, adults with Asperger syndrome). Work is also ongoing to explore local service needs for people with Asperger syndrome.
Consultation Question 16. Do you support the proposal to develop a strategic commissioning framework?
39. The NAS welcomes the debate around strategic commissioning and supports the suggestion that more needs to be done at a local level to ensure needs are met. This commissioning culture should be driven by person centred planning.
40. In relation to ASDs in particular, it is important that those commissioning services for autism have an understanding of the specific requirements of autism services. Underpinning the commissioning process should be a local plan for ASDs that appreciates the variations required in planning.
Housing needs
41. Providing access to good quality and affordable housing is one of the areas the commissioning framework is intended to cover. 'Autism: Rights in Reality'5 revealed the difficulties adults with an ASD experience in finding a suitable home to live in and how more adults with ASD live in the family home than in any other setting - with progress towards supported living and away from residential settings remaining slow. A report6 looking at housing options for people with ASDs noted that identification of the housing needs of people with autism in local records or surveys is still quite rare and that the repeated complaint from families, professionals and providers was over the lack of strategic planning.
42. For those people living in a more supported environment, it is necessary to ensure that a placement decision is qualitively right for the particular individual for whom it is intended. Any housing infrastrucutre has to guarantee some kind of consistency of support for the individual tenent.
Supported Living
43. We are concered that some Local Authorities may use Supported Living because they see it as a cheaper alternative to residential living. Supported Living must consider holistically the needs of individuals - enabling them to be part of a community, engage in meaningful activity, learn social skills and basically achieve the outcomes for people set out in this report- rather than simply addressing housing needs.
Consultation Question 17. Is the proposed shift to a preventative model of care the right approach?
44. We strongly welcome the recognition that preventative services can bring real benefits - see above. However, while we support attempts to provide more low level support we would be extremely concerned if this necessitated a reduction in the services provided to individuals with complex needs. Those with complex needs will continue to require the same levels of service and the range and quality of services available to them should not be reduced in order to fund preventative services.
45. We agree that savings from funding preventative and low level services could be achieved in the long term by reducing as far as possible the chances of individuals with low level needs developing more serious problems. There will, however, always be individuals with more complex needs and it is essential that the needs of these individuals continue to remain a priority. This re-inforces the need for additional funding.
Consultation Question 18. What are your views on approaches to promoting and developing partnership working across agencies and effective models for so doing?
46. Current partnership with universal services has been going on for sometime in many areas. However, it does not always lead to the mixed packages of care hoped for. For people with ASD there is still a major issue about accessing universal services. More investment is required to train relevant agencies in ASD.
Chapter 9: Service Improvement and Delivery
Information Sharing
47. The NAS welcome the consideration of how information sharing can be improved. Most enquries following tragedies highlight the need for social services and health together with other bodies, to share information both within their own discreet local authority area but also if the individual moves on.
48. Key protocols should be developed at local authority level in relation to how local services, for example LEAs, Social Service, Health - share information in the run up to transition from education to adult services. Frequently adult services are unaware of the numbers of new Service Users moving into their service on a yearly basis and as a consequence no plans or funds are available for them.
Transition planning
49. We believe that particular emphasis should be placed on enabling smooth and appropriate transitions. Not only is this time a critical period in an individuals life but the new division between adult and child social services means there is a potential for the needs of individuals during this period to be insufficiently accounted for.
50. To meet the requirements of individuals during this 'transition' period, planning for an individuals needs in adulthood should begin before they reach this stage. Adult social services need to ensure that they have planning arrangements in place to properly support people when they reach adulthood. Paragraph 9.21 of the consultation mentions that particular emphasis should be placed on maintaining a proper level of integration with adult social services particularly in relation to learning disabilities, adult mental health and drug and alcohol services. We believe ASDs should be explicitly added to this list in the guidance.
51. Empowering the communication that comes from families may assist the transition process. This could include training opportunities to families in person centred planning or communicating more effectively the needs of their child.
Prospects
Prospects, The National Autistic Society's employment consultancy, is launching a new, two-and-a-half year project, which will help final year university students with Asperger syndrome into work. The project is joint funded through the London Development Agency and the European Social Fund and is aimed at students who live and wish to work in the London area.
The aim of the project is to help people develop the skills which they will need to find employment. This will be achieved through a mixture of workshops and oneto-one sessions, focusing on areas such as career choice, communication and interview skills as well as effective job searching.
Chapter 12: Community Capacity building: working with the voluntary and community sector
Consultation Question 26. How can we strengthen the links with the VCS and increase community capacity?
52. Community capacity could be increased by making it easier to access funding. Often the long paper-heavy process of applying for money ring-fenced pots feels disproportionate to the scale of the project, for example, applying for a few thousand pounds to run a social activity or a respite scheme can often take many hours and then the reporting systems to show the money is being well spent are often also time-consuming. Less bureaucratic and simpler systems are required.
References
1 Broach et al, 2003, Autism: Rights in Reality, National Autistic Society
2 Andrew Powell, 2002, Taking Responsibility: Good Practice Guidelines for services-adults with Asperger syndrome, London: NAS
3 Patricia Howlin, 2004, Autism and Asperger Syndrome: Preparing for adulthood, London, Routledge
4 Andrew Powell, 2002, Taking Responsibility: Good Practice Guidelines for services-adults with Asperger syndrome, London: NAS
5 Broach et al, 2003, Autism: Rights in Reality, National Autistic Society
6 Harker and King, 2004, Tomorrows big problem, National Autistic Society