Scottish Government

Section 12: DIRECT PAYMENTS FOR USERS OF DISABLED CHILDREN'S SERVICES

'Direct payments have meant increased freedom and choices for both me and my eight year old daughter. Our social work home help service was unable to adapt to our needs and the times we needed support when I attended college. I became increasingly frustrated as this led to no continuity of care and almost weekly having to introduce a new home-help to my daughter. Direct payments has enabled me to employ a person that we both are happy about, this person comes at a time that meets my needs and the needs of my family. The flexibility this provides means I am able to change the times my P.A. comes to our home so I no longer have to worry about my other commitments fitting in with someone else's timetable. This means both of us have a better quality of life and are able to be more spontaneous.' (Disabled parent Edinburgh).

248. Existing guidance accompanying the 1995 Act, on the integrated planning for children's services and recent publications such as For Scotland's Children emphasises the importance of:

• promoting the upbringing of children within their families so far as this is consistent with safeguarding and promoting their welfare;
• children being given the opportunity to lead lives that are as normal as possible;
• local authorities working in partnership with families;
• recognising that children are individuals with their own wishes and feelings;
• listening to children and taking into account their views; actively involving children and parents in assessments and decision-making; and
• having regard to issues of race, language, religion and culture.

249. Direct payments should be part of the integrated services on offer to disabled children as, with appropriate support, as with appropriate support they can offer the innovative practical solutions often sought amidst the logistical complexities of families' daily lives. Flexibility, choice and control over how their assessed care needs are met is a right of children and their parents as much as any other eligible care group. Direct payments is one option to enable children to have increased independence and quality of life, and should be offered to those who are eligible at every assessment and review. Direct payments may be particularly valuable for those whose needs have been recognised as being less well served by available local authority services. Parents should be encouraged and supported to use direct payments with a view to enabling their disabled children to access the same kinds of opportunities and activities as their non-disabled peers.

Eligibility, assessment and support

250. Uptake of direct payments for children is currently low, despite there being a duty for local authorities to provide them since June 2003. Local councils are required to provide families with information about the full range of services, including the option of direct payments. They should also have access to pre-assessment support to enable them to work through what their needs are and how best to meet them (see section 2).

251. A single shared assessment ( SSA) is undertaken under section 23 of the Children (Scotland) Act 1995 ('the 1995 Act') and is designed within one process to establish the needs of the child in a holistic manner in the one process. To avoid any duplication, local authorities should ensure the assessment process is fully co-ordinated between adult and children's services and other relevant departments such as education.

252. Direct payments are available for children's services provided under section 22(1) of the 1005 Act. For this part of the 1995 Act, children are defined as aged under 18. Direct payments are not for services under any other sections of that Act nor services provided by local authorities under the Education (Scotland) Act 1980.

253. Section 22(1) does not define the type of services and support which local authorities can deliver, but refers to providing a range and level of services to safeguard and promote the welfare of children in need. The definition of a child in need is very broad. It includes children under the age of 18 who are disabled themselves, those who are affected adversely by the disability of any other person in the family, or those children whose health or development may be impaired or below a reasonable standard without services from the local authority. While the focus of service provided under section 22 is to support the child, services may be provided to the wider family if those services help to safeguard or promote the welfare of the child. Families and children are likely to have a wide range of needs and problems and therefore the services which will be required to meet those needs are likely to be wide-ranging. Each local authority should assess need and how this need will be met, whether by local authority services or through direct payments.

254. The support purchased by the direct payment does not have to be the same as the service that would have been delivered by the local authority, so long as it meets the assessed needs. For example, a disabled child who might have attended local authority facilities may now choose to employ a personal assistant ( PA) using a direct payment.

255. Parents may choose to use direct payments to employ a person to support and care for their child as an overnight or day care worker, a nanny, a sitter, a child minder or to support the child at a community activity, for example a youth club. More than one PA is generally needed, for example to provide cover for holidays and sickness. Direct payments can also be used to purchase a service from a service provider for example a local agency service, a residential short breaks unit, a children's hospice, a sitter service, a placement at a day nursery or after school club or a local authority service (in their own or neighbouring authority). Service providers may be used to provide emergency cover or to provide cover for a PA's holidays and sickness. Direct payments can also be used to purchase equipment needed by their child (see section 4).

What children and their parents can expect

256. Children and their parents who are eligible for direct payments can expect:

• to be given the maximum possible choice and control over how their assessed needs are met
• to be offered pre-assessment work so that they can work out their needs and make informed choices about use of direct payment for some or all of their support
• to be given details of local support services for information, training and practical help
• direct payments to be offered at every assessment and review
• to be given direct payments training and support that is personalised to their needs

Local Support

257. Once funded to do so by local authorities, local direct payments organisations working in partnership with children's organisations should try to expand their current support service to better accommodate children and parents' support needs. They need to expand their outreach so that the places where potential users routinely meet (for example, GPs, social networks) have the information they might need. They need to be able to offer the services they offer to other older or disabled people, including the facilitative roles they offer during the setting up stages of a package, general confidence building as people gain from the experiences of their peers, help setting up a separate bank account to track payments and expenditure, help setting up employer's liability insurance, providing rooms for interviewing PAs, providing an address for responses to adverts, and help in resolving any difficulties that may arise.

Disabled parent

Example: Disabled parent

'I'm no longer the disabled person, the user or the care worker - I'm just me and it's great.'

'Our family may only have the two of use but between us we have multiple physical disabilities and a moderate learning disability. A year ago we successfully applied to join the direct payments scheme and now have a team of 3 support workers. Between them they provide a whole range of support as needed and when we need it. This can be everything from personal care, to companionship, fetching shopping, housework and even coming on holiday with us. It may be a couple of hours to take my son swimming or an overnight stay when I am in hospital. In fact we get double the value because every hour one of them spends helping my son is an hour's respite for me too. We also have a freelance care worker on standby for the odd time when the team can't help.

It's not always plain sailing. We don't always have three on the team, as recruitment can take time, and be a bit off-putting. Then it can be difficult to find out what training and support is available to our team. The whole process has been made much easier by the support of the local direct payment support agency. They keep us up to date, lend a listening ear, give advice and have been the ones to find the training opportunities for us. In fact I wouldn't recommend doing this without them.

It is worth it though. This family is now much healthier, happier and fulfilled than this time last year. My son is getting independence through his buddies and I have regained a sense of self instead of just a being a lonely carer who felt guilty for not being physically fit enough to provide the full support my son deserved.'

258. Disabled people who are parents can receive direct payments for services available under section 22(1) of the 1995 Act to help with their parenting role. Their children are defined as children in need due to the disabilities of his or her parent(s). Disabled parents can also receive services under section 12 of the 1968 Act. This means that direct payments can be used to meet all their social care needs, of those of their family arising from the parent's disability. Although two pieces of legislation are involved it is important that the needs of the disabled person and their family are looked at in a joined up way. In the interest of the family and to avoid duplication, local authorities should ensure that the assessment process is streamlined and co-ordinated between adult and children's services and other relevant departments such as education.

259. Local authorities should work in partnership with families to provide services that will best meet the needs of the children within the context of the family situation. The provision of services that assist disabled parents who need practical help in bringing up their children is often the most effective means of promoting the welfare of their children. This applies equally in terms of direct payments.

Involving children

260. It is essential that the views of children are part of the choices involved in direct payments. A Parent's Guide to Direct Payments emphasises the importance of children's views being taken into account when service options are being considered and choices made by parents. Depending on their ability, age and understanding, children should either accompany parents when they visit all the options for services or visit the top choices of service options that the parents make. Children's opinions need to be actively sought and their behaviour observed with the adults who will be supporting them. A few trial or observation visits may be needed to get their views.

261. Children should be given appropriate help to express their views and wishes and should have access to independent advocacy when appropriate. Local authorities will need to handle such issues sensitively in terms of the family situation where there may be parental conflict with the views of the child. As children mature, local authorities should encourage parents to give greater weight to the child's views about how their personal care needs are to be met.

262. Parents may use direct payments to purchase services of an intimate nature to meet the assessed needs of their disabled child. However as children mature, parents should be encouraged to give greater weight to the child's views about how their intimate care needs are to be met. Particular care should be taken to ascertain their child's wishes when they have a cognitive and/or communication impairment.

Parental consent

263. A parent or person who has parental responsibility for a child (aged under 18 years) may give consent to receiving direct payments to purchase the services the child or young person has been assessed as needing. Local authorities must be satisfied that the parent giving the consent will make arrangements that will best meet the child's needs. In the case of a 16 or 17 year old who requires services, the local authority must first seek consent from the young person, ensuring that he or she has the support required to help him or her make that decision. Only where it is clear that the young person is unable to give consent should the local authority look to a parent for consent.

People with parental responsibility for disabled children

264. Disabled children and their families may find it more arduous to access mainstream services, for example childcare, after school clubs and leisure activities. Sometimes by working with local authorities these difficulties may be overcome and children can access mainstream services. However, some families with disabled children may not consider the existing services provided or commissioned by their local authority appropriate for their child and think that they can make arrangements themselves which will be more beneficial. Direct payments can be used for such arrangements.

265. Local authorities should work in partnership with parents in accordance with the Guidance accompanying the 1995 Act (see annex A). Local authorities must act in the best interests of the child. In doing so they should carefully consider whether it would be appropriate to give direct payments to parents who are subject to a Home Supervision Order or have been compulsorily removed from the home under child protection procedures. So long as the local authority is satisfied that the assessed needs of the disabled child and family will be met through the arrangements the parent is making using the direct payments, the local authority does not arrange services. However, local authorities retain their responsibilities under the 1995 Act to assess and, where appropriate, review the needs of disabled children and their families in the normal way.

Disabled 16 and 17 year olds in transition services

266. Parents often face challenges or problems in supporting and preparing their children for an independent adult life. The transition to financial independence and independent living is not usually a single event, nor does it happen quickly. Families with disabled children often face additional challenges that may delay or limit the children's move towards independence. For any young person (with or without a disability) the process of growing up involves the gradual taking on of more and more responsibility for himself or herself.

267. Whatever decisions are made when the disabled child reaches age 16 or 17, people with parental responsibility for a disabled child may not continue to receive direct payments to purchase services that meet the needs of that child once the child reaches his or her majority.

268. Local authorities should establish whether the young person can give the necessary consent to direct payments before seeking consent from a parent/guardian.

269. The flexibility of direct payments enables disabled 16 and 17 year olds to be more independent and have greater control over their lives. Parents may need support and sometimes permission to let their disabled child take risks in their everyday life. This may include allowing their 16 or 17 year old to manage their own support through a direct payment.

270. If parents and their disabled 16 and 17 year olds disagree about direct payments or the services they will be used to buy, local authorities should be sympathetic to the parents but give precedence to the views of the young people, provided that they have sufficient understanding to make informed decisions. Sometimes it may best meet a young person's needs to receive a direct payment but the parents may disagree. The overriding issue for the local authority is that whether by providing a service or direct payments, its actions should promote and safeguard the welfare of the young person. The young person should be made aware that independent advocacy may be of help to them.

271. There may be situations where disabled young people will express their wish to manage direct payments themselves but it is apparent to their parents and to the local authority that they will not be able to do so in a way that will promote their welfare. This may be for a number of reasons, and may not be as straightforward as dealing with issues such as employment and accounts. The young person should receive the practical support that they need to enable them to manage the package, including assistance from parents, carers and local support organisations, for example with pay rolling. They can also receive assistance from User Controlled Trusts or Circles of Support (see section 4). However, ultimately local authorities have a duty to ensure that the arrangements put in place with direct payments (as with any service) will ensure the young person's safety and promote his or her welfare. Where this is not the case, the local authority should explain, in writing, to the person why direct payments would be inappropriate.

272. A young person's ability to manage will depend on the size of the support package, and will also change as they mature. For example, a young person may be able to manage part of their support package via direct payments but would not be able to manage the full package. The ability to manage may change as the young person gains more experience. The local authority may want to make transitional arrangements whereby initially the young person manages only a small proportion of their support with a direct payment. This proportion could increase as the young person matures with the objective of full management of the support package at age 18. The client's needs may change greatly at this stage of their lives so packages require constant reviewing. Encouraging increased independence may cause tension with parents who may make a big contribution to the overall care package. Local authority staff are encouraged to balance the wishes and needs of the young person with the need to ensure that their best interests are protected and their support offers choice and flexibility.

273. Some disabled 16 and 17 year olds may have previous experience of direct payments because their parents are receiving them to meet the family's needs. However, may disabled 16 and 17 year olds parents will have been receiving services direct from their council.

274. Young disabled people may receive assistance with managing the direct payment, just as any other direct payment recipient may do. Where that assistance takes form of a user-controlled trust or similar arrangement, it should be set up in the knowledge of the views of those people with parental responsibility. Their ability to exercise their views should not be undermined by the arrangement. It will be important for local councils to recognise and respect the views of parents who have been managing the delivery of support for their child in setting in place any new arrangements once the young person reaches his or her majority.

275. As part of their preparation for transition to adult services at aged 18, young people aged 16 to 17 will need to be made aware of how to use the 2000 Act to ensure legal continuity for parents/guardians to act on their behalf where they lack the capacity to make certain named welfare or financial decisions about their lives (see section 3).. The 2000 Act is there to offer any person incapable of managing some aspects of their lives, whether it is direct payments or not, the legal mechanism for guardians to act on their behalf. Councils cannot insist that parents/guardians take out guardianship under the 2000 Act for a young person to receive direct payments if they have the capacity to consent and manage them. An 18 year old disabled person living at home or elsewhere may be capable of managing many aspects of their lives, including their direct payments, and so may not need to use the 2000 Act.

Using care agencies and other service providers

276. Section 4 looks at service provision using direct payments. Where parents pay an organisation a fee for a service, for example, a sitter from a private or voluntary agency, they do not have the responsibilities of an employer, such as tax, National Insurance, insurance, etc. Using service providers has many advantages, including providing emergency back-up and illness/holiday cover but the parent does not have as much say in who the sitter will be for their child and what they can or cannot do.

Childminders

277. Where a child is cared for away from their own home, the person caring for the child must be registered as a childminder. Local authorities will be able to provide a full list of all childminders in the area, whether they are providing a service that can be purchased or they are being employed by the family as a member of staff.

278. For non-residential respite/short breaks away from home, (except in response to an overnight emergency) the childminder must apply for a condition to be added to their registration that states that the arrangements to provide overnight care are adequate. The registration certificate will also stipulate how many children may be cared for which is also important for insurance purposes ³³.

Looked after status

279. Direct payments can be used to purchase flexible respite options if the local authority is satisfied that the respite care bought with the direct payments will safeguard and promote the welfare of the child, and therefore that child does not become 'looked after' under the terms of section 25 of the 199 Act. To avoid a child falling into the 'looked after' category it is important that the parent is in complete control of the respite arrangements. Paragraph xx gives details of how much respite a person can receive in a 12 month period and examples of more flexible respite options such as a PA accompanying a disabled child on a family holiday.

Employing PAs

280. Local authorities should not refuse parents direct payments if they wish to employ their own staff direct. Instead, they must make clear the steps that people with parental responsibility for a disabled child ought to make to satisfy themselves that the person offering help with the care of their child is a suitable person. This is because the available UK evidence on the extent of abuse among disabled children suggests that disabled children are at increased risk of abuse ³⁴.

281. There are two main restrictions on whom parents can employ to care for their child. Generally they cannot employ a close relative who lives in the same household as the child (see section 5). If the child is being cared for by a person in that person's own home, then that person needs to be a registered childminder. This does not apply if the child is being looked after in their own home (see paragraph 277).

282. ' A Parent's Guide to Direct Payments' also emphasises the importance of the employee having a positive attitude towards disability in general and more specifically towards assisting the child to reach their full potential. It suggests that there may be three groups of people who may be particularly suitable to employ, depending on the child's needs:

• People who work or have worked with disabled children.
• People who work or have worked with children.
• People who work or have worked with disabled adults or older people.

283. The parent's guide emphasises the importance of using references and checks and advises parents not to advertise and interview people on their own, but with support from the local support organisation or friends. This is because it is essential to be objective in order to put the needs of their disabled child first and ensure that they are not placed in a risky situation.

284. Local authorities should ensure that individuals are made aware of local support organisations that can offer advice and practical help with a rigorous recruitment procedure as with every other stage of the direct payments journey, and that the individual has all the assistance he or she needs. For example, it is paramount that parents take up references and have an enhanced disclosure check done on prospective employees, even where they know the person well. However, it should be stressed that disclosure checks alone do not guarantee that a person is suitable.

285. The fee for the enhanced disclosure check should be included in the direct payments package funded by the local authority, and it may be carried out by a registered body for vetting applications, either the local authority or through organisations such as SPAEN (see annex D). The results of the check are sent to the applicant and the vetting organisation who will advise the parent whether or not they should go ahead and employ the applicant. The parent does not normally see the disclosure check, but some vetting organisations ask applicants to show prospective employers these checks as part of safe recruitment procedures.

286. If a local authority assesses a parent/guardian/young person as being able to manage their own employees, the choice of who that individual employs should be theirs. However, where local authorities are concerned about the suitability of a PA based on enhanced disclosure checks, and the person decides to go ahead and employ that PA, the appropriateness of the direct payment may have to be reviewed.

287. Many local authorities insist on parents/guardians undertaking disclosure checks under their duty to safeguard and promote the welfare of children in their area who are in need under section 22 of the 1995 Act. In any case, the proposals within the Protection of Vulnerable Groups (Scotland) Bill, introduced to Parliament on 25 September 2006, will further strengthen the need to safely recruit and will make disclosure checks mandatory for some employers working with protected adults, including PA employers. Under Part V of the Police Act 1997, a registered body can sign a disclosure check on behalf of a PA employer without necessarily being viewed as the employer.

288. Prior to the PA starting work, parents need to make arrangements to train them to do the job (see section 6). This is an essential part of the package that local authorities fund, and should include formal training that may be required such as tube feeding or lifting. As the employer, parents are responsible for a PA's health and safety and they may request a specific risk assessment carried out in their home with their child.

How to mainstream direct payments for disabled children.

289. Ensuring that there is adequate funding of local support services is the key for local authorities to ensure that direct payments are routinely available for children through their families. This support will help local authorities:

• Promote direct payments for children. There is still a low knowledge base within some areas. People may only hear of direct payments through word of mouth, as even many GPs have not heard of them.
• Ensure the families of disabled children have access to direct payments information targeted to their needs.
• Train parents and children in transition on pre-assessment and care management via local support organisations.
• Provide specialist support targeted to children's needs, for example an advocate or support worker may be needed with specialist skills.
• Train local authority care managers, and encourage a culture of positive risk taking to enable more children to benefit from direct payments if it meets their needs.

Further information

290. A Parents Guide to Direct Payments published by the Department of Health.