Start date 16/12/2010 — End date 17/03/2011

Our input and that of other agencies can be viewed on the Scottish Government consultation web pages (http://www.scotland.gov.uk/consultations),

A consultation on a draft bill on self-directed support. This follows an earlier consultation on the outline proposals for the Bill, completed in June 2010.

Below is our input to the last Scottish Government Consultation

The Scottish Government has held two consultations related to Self Directed Support. The first was on a strategy and the second on the proposal for a Bill on self directed support. We met with parents in Edinburgh to ask what they thought. We put their comments in to the consultation and the following are the questions and our responses. We will look at the new consultation and would welcome any views for this next stage.

Do you agree with the proposal to consolidate and update existing legislation on direct payments?

Legislation which puts personalisation and choice at the core is welcome. The current legislation is unclear and restrictive and should be clarified and updated. Most importantly it should ensure that direct payments are made widely available for the benefit of children with disabilities. We believe that there should be a specific strategy for children and families to ensure that their needs as children are considered and links are made with other legislation and policies, such as Getting it Right For Every Child.

Should a new Act be based on a set of guiding principles? If so, what are your views on the most important principles?

The principles of better outcomes, choice, participation, mutuality and equality are all helpful. When it comes to payments for the benefit of children we would add the principle of being child centred. It is important that parents and adults are enabled to ensure that the views of the child are elicited (wherever possible) and acted upon. Also, it should never leave a family in a worse position – losing a traditional service but unable to afford a suitable replacement because of other benefits being taken into account. It should not exclude a child because both parents work.

What are your views on the proposal to place legislation on direct payments in a Bill that defines the term self-directed support?

Direct payments have been too limited and have caused frustration for families or excluded some where their needs have not been recognised. A Bill defining Self Directed Support could be a significant step in the move towards a fairer and more workable system. Some parents have been deterred from getting payments because of their concerns about recruitment or the financial management that would be required. The inflexibility of the direct payment has been very limiting and there is not yet a sufficient range of services to purchase to meet the support needs of many families. Some parents are also concerned that other benefits may be lost through means testing. Direct Payments may not be taken up due to the stigma some families feel about having social work involvement.

There should be a whole package of change and support and training for staff on how to implement these changes. If implemented with personalised support as the main objective, these are potentially exciting proposals but families are currently concerned and unconvinced that change should not be an excuse for cuts. Transitional money must be provided to make local communities more open and accessible for children with disabilities and their families.

Do you agree that the proposed bill should set a framework that would allow the Government to consider in future extending direct payments and other forms of self-directed support?

This whole area needs room to grow and develop as the ideas and support networks expand and develop. Time and space for forums to discuss this is essential alongside of a rigorous process of evaluation to ensure that the implementation of the new legislation does not inadvertently reduce, or place barriers to, support for those who most need it.

What are your views on the broad areas where Ministers should be permitted to bring forward further legislation?

If you think it should cover other areas what should these be?

Without a broad approach from local authorities, including local area coordinators and co-production, there will be limitations on progress. Legislation needs to place duties on local authorities if such major change is to happen. Existing service led cultures will not change easily. The range of services and support mechanisms are not consistently strong across Scotland to be able to provide the support which we would ultimately hope would be available to give people the control that SDS could bring. There needs to be provision for transitional arrangements in place in legislation. Increased power to purchase needs to be backed up by a broad market to buy from, along with a strengthening of the requirement to make universal provision accessible to all.

Do you agree with our proposal to amend the legislation so that self-directed support is the default position for the provision of social care, requiring individuals to opt out of this method as opposed to the current situation whereby they can choose to opt in?

Yes. However, caution is needed on the rules for how this is carried out. Local authorities have placed people on a waiting list for a direct payment and if someone opts in and then is left with no support until the local authority is willing and ready to release money, this is not acceptable. There needs to be a clear indication that if a child is assessed as in need of support, legislation should direct that families should receive the funds to meet those needs without delay. There must always be a focus on individual circumstances of the child and family.

If a default position is introduced, should it be for the broader range of options for self-directed support, or for direct payments?

The default position should definitely be for self directed support because, as above, direct payments have been too restrictive and carry too many fears for many families.

Do you agree with the principle that carers should be made eligible to receive self-directed support and direct payments in certain circumstances?

Yes. We have met families who need support as carers because caring for their child requires much more than a full time job ever would. Sometimes there may be circumstances where a payment for a parent as well as the child would bring about positive change and avoid other, more costly interventions.

If so, what are your views on the detailed proposals for how this might be achieved?

We would hope that the work involved in working with the family to assess needs and possibilities would include a proposal for how outcomes are to be achieved. This would be much more likely if a full commitment is made to local area coordination and local staff (not necessarily social workers) took on the task and advocated for the family.

An event that we organised on 21st January as part of the Institute for Research and Innovation in Social Services (IRISS) workshop series on ‘what works’ provided an opportunity for those engaged with children to share and discuss progress.

The workshop explored what can be learned from work on the personalisation of services for adults with disabilities and how this learning might be transferred to planning children’s services. Acknowledging the challenges, we looked at how to overcome barriers and how we can share this knowledge to improve how we work with children and families to achieve what is important to them.

The day was over subscribed and we fitted in as many as possible to join the discussion.

We facilitated the day and introduced the issues but in addition, we had input from professionals committed to, and working for, change in Glasgow and North Lanarkshire — and from a parent who told us about the experience of his family of positive change. This, together with a dvd of another family provided great insight into the positive developments in Scotland.

We looked at personalised pathways, not just payments but much more, and discussed what it all means and what works. We heard the views of families and looked at the risks and dangers as well as the benefits. Most importantly we discussed the issues and solutions and where we go from here. There was plenty of opportunity for discussion and sharing ideas. You can read about the ideas and concerns delegates shared on the day here: ‘Making it Personal’ Jan 2011.pdf

The roadmap states, “It’s simple — we want equality for disabled people We want disabled people to have a great start to life, with equal access to education and play. We want disabled people to find work, have interesting careers and access to training.We want disabled people to have equality in their everyday lives: getting around on public transport, living in housing that meets their needs, and accessing goods and services.We want disabled people to enjoy their social lives: have families and friends, take part in sports and leisure activities, and serve the community.We want all this and much more”. The report mentions progress made since 2005 including ‘Aiming High for Disabled Children’ (2007), aimed at improving service provision to children and families and specialist guidance on tackling and preventing bullying produced in 2008. Its next steps included setting aside £370 million to support short breaks for families with disabled children and continued investment in education and play. For more on the report go to www.odi.gov.uk

A campaign group, ‘For Scotland’s Disabled Children’ was set up in part to adress the failure of these funds (£34 million in Scotland) to materialise for children with disabilities. In July 2010 councils were asked what had happened to the money and none of them were able to account for how it had been spent.

In terms of the law, the main Act relating to disability since 1995 has been the Disability Discrimination Act (DDA) but a new law, the Equality Act 2010 has been passed which will bring together all previous laws on discrimination (race, sex, sexual orientation, disability, religion or belief, being a transexual person, having just had a baby or being pregnant, being married or in a civil partnership, and age) under one piece of legislation. It starts to come into force from October 2010 but the DDA will continue to apply until the replacement provisions of the Equality Act are in force. The different parts will come into force at different times so advice may be needed about whether the DDA or the Equality Act applies to particular situations.

Most importantly the DDA states that it is against the law to treat disabled people less favourably than other people for a reason related to their disability. Organisations such as schools and service providers have to make ‘reasonable adjustments’ to the way they deliver their services so that disabled people can use them. The Equality Act will keep the core protections of the DDA but will bring in a new right that protects the family and friends of a disabled person from ‘discrimination by association’. So, for example, it will be illegal to treat an employee unfavourably because they are a carer of a disabled person.

The laws are supported by United Nations Conventions. Points from these conventions, along with policies and guidance about partnership working can be used when trying to bring about positive change.

If you want to change health services in your area then you can contact your local Health Board. If you are unhappy with the service that a child receives, the NHS has a procedure for complaints. It begins with raising the issue with the service. They should respond with a ‘local resolution’, where they seek to provide prompt investigation and resolution of a complaint at local level, aiming to satisfy the person making the complaint whilst being fair to staff. This stage should, normally, be completed within 20 working days of receipt of a complaint.

If you are not happy with the result the next stage is to ask the Scottish Public Services Ombudsman, who is independent of Ministers and the NHS, to review the case.

It is possible that things might improve for you and even for other families because local clinical governance arrangements must include procedures for ensuring that information gained from patient feedback, including complaints, is used to improve service quality.

Your local authority or local council is responsible for providing services in your area such as education, local leisure facilities, etc and makes decisions on local short breaks, transition services, local education facilities, transport, housing, roads and pavements, parks and playgrounds, crime, entitlements to DLA, carers allowance, etc.

To find out which local authority you live in go to http://local.direct.gov.uk/ldgredirect/start.do?mode=1

If you feel that you are not receiving the appropriate services you should request an up to date assessment of your childs needs. This will determine what services your child is eligible for, and will answer any questions you may have about access to current services. If you feel that your local authority is not meeting its duties, the first steps to a formal complaint are;

Write to the council — highlighting that you are making a formal complaint and outlining all the issues you have faced. Most councils have an office for complaints which you can find on their website, or write to the head of the council. When making the formal complaint, copy the letter tothe Director of Children’s Services and the Lead Councillor for Children into your email/letter.

Local Councillors are elected by the local community to represent its views and are your voice in the council and can raise your concerns about issues. To find your local councillors go to http://www.writetothem.com

Your MP is your representative in Parliament in the House of Commons in London (which passes UK wide laws) and your MSP represents you in the Scottish Parliament, (which deals with education, health etc) but they can also take up issues with local councils and Health Boards. You can find out who they are also at http://www.writetothem.com

With thanks to ‘Making Disabled Children Matter Locally 2010′, EDCM Aug 2010