SECTION 12: SELF-DIRECTED SUPPORT FOR USERS OF CHILDREN'S SERVICES
197. This section should be read in conjunction with the general sections.
198. Existing guidance accompanying the 1995 Act on the integrated planning of children's services and recent publications such as For Scotland's Children56 emphasise the importance of:
- promoting the upbringing of children and young people within their families so far as this is consistent with safeguarding and promoting their welfare
- giving children and young people the opportunity to become more independent in the future
- local authorities working in partnership with families
- recognising that children and young people are individuals with their own wishes and feelings
- listening to children and young people and taking into account their views
- actively involving children, young people and parents in assessments and decision-making, and
- having regard to issues of race, language, religion and culture.
199. Self-directed support should be available to parents of children and young people in need as, with appropriate support, it can offer the innovative practical solutions often sought amidst the logistical complexities of families' daily lives. It 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 self-directed support with a view to enabling their children and young people to access the same kinds of opportunities and activities as their non-disabled peers.
'Our family may only have the two of us but between us we have multiple physical disabilities and a moderate learning disability. A year ago we successfully applied to join the self-directed support 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. The whole process has been made much easier by the support of the local self-directed 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. I'm no longer the disabled person, the user or the carer - I'm just me and it's great.'
Eligibility, assessment and support
200. Local councils are required to provide families with information about the full range of services available to them, including the option of self-directed support. They should also have access to self-assessment support to enable them to work through what their needs are and how best to meet them.
201. An integrated assessment is undertaken under section 23 of the Children (Scotland) Act 1995 ('the 1995 Act') and is designed to establish the needs of the child in a holistic manner. 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.
202. Direct payments are available for children's services provided under section 22(1) of the 1995 Act (see Annex B). For this part of the 1995 Act, children are defined as aged under 16. 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. Young people aged 16 and 17 can use self-directed support to meet their assessed needs if they have the capacity to manage it with the necessary support, but if they do not have this capacity, their parents can access it on their behalf until they are aged 18, under the terms of the 2003 regulations.
203. Whatever decisions are made when the child reaches age 16 or 17, people with parental responsibility for a child may not continue using self-directed support to purchase services that meet the needs of that child once the child reaches the age of 18. As part of their preparation for transition to adult services at 18, young people 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).
204. 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 16 who have a disability 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 support needs and therefore the services required will need to include flexibility and choice to support each individual case.
205. Each local authority will need to assess individual cases and identify through consultation with parent/guardians and the young person what would be the most beneficial service, and whether this would be met through local authority services or through self-directed support. Self-directed support will not be suitable for all children in need. It is for care managers to decide whether such assignments would help or potentially add another stress at a particular time, for example when family dynamics may not be working well in basic areas.
206. The support purchased 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).
207. Parents may choose to use self-directed support to employ a person or contract with a service provider or a combination of both. Local authorities should aim to identify and emphasise the potential for flexibility in any literature regarding self-directed support. If going the PA employer route, more than one PA is generally needed, for example to provide cover for holidays and sickness. Service providers may be used to provide emergency cover or to provide cover for a PA's holidays and sickness. They might also provide a local agency service, a residential short breaks unit, a sitter service, a placement at a day nursery or after school club or a local authority service (in their own or neighbouring authority). Self-directed support can also be used to purchase equipment needed by their child.
208. Disabled people who are parents can use self-directed support 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). In addition, disabled parents can receive services to meet their own assessed needs under section 12 of the 1968 Act. This means that self-directed support can be used to meet the assessed needs 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 equally relevant departments such as education.
209. 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 self-directed support.
'Self-directed support has 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. Self-directed support has enabled me to employ a person that we are both happy with, 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).
210. It is essential that the views of children are part of the choices involved in self-directed support. A Parent's Guide to Direct Payments57 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.
211. 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.
212. Parents may use self-directed support to purchase personal care services 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 impairment.
213. A parent or person who has parental responsibility for a child (aged under 16 years) may give consent to self-directed support 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. Social workers also have a duty under the 1995 Act to elicit, listen to and take into account the views of the children; increased weight is given to these views from the age of 12.
214. 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. Where the young person is over the age of 16 but under the age of 18 and unable to give his or her consent, the persons having parental responsibility must consent on the young person's behalf before self-directed support can be used. Where the young person is over the age of 18 and unable to give his or her consent, a parent can only consent on the child's behalf if they are the appointed guardian or attorney.
People with parental responsibility for disabled children
215. 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. Self-directed support can be used for such arrangements.
216. Local authorities should work in partnership with parents in accordance with the Guidance accompanying the 1995 Act (see Annex B). In doing so they should carefully consider whether it would be appropriate for self-directed support where a child is subject to a Home Supervision Order or has 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 self-directed support, 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
217. Parents often face challenges in supporting and preparing young people 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 young person'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 themselves.
218. The flexibility of self-directed support enables disabled 16 and 17 year olds to be more independent and have greater control over their lives. Parents may need support and sometimes encouragement 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. The young person should be made aware that independent advocacy may be of help to them.
219. There may be situations where disabled young people will express their wish to manage self-directed support themselves but the local authority considers 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 services, for example with payrolling. They can also receive assistance from user controlled trusts or circles of support. Ultimately the local authority has a duty to ensure that the arrangements put in place with self-directed support (as with any service) will ensure the young person's safety and promote their welfare. Where this is not the case, the local authority should explain, in writing, to the person why self-directed support would be inappropriate.
220. 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 using self-directed support 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. 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.
221. Young disabled people may receive assistance with managing self-directed support, just as any other individual may do. Where that assistance takes the 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 age 16.
222. 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. 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. Local authorities will be able to provide information about childminders in the area.
223. For non-residential 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 58.
Looked after status
224. Self-directed support can be used to purchase flexible short break options if the local authority is satisfied that the respite care bought will safeguard and promote the welfare of the child. The child does not become 'looked after' under the terms of section 25 of the 1995 Act if the parent is in complete control of the respite arrangements 59. Paragraphs 78 to 80 give 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 break.
225. Local authorities must make clear the steps that people with parental responsibility for a disabled child ought to take to satisfy themselves that the person offering help with the care of their child is a suitable person 60.
226. A Parent's Guide to Direct Payments61 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.
227. The parent's guide emphasises the importance of using references and checks and recommends that parents do not advertise and interview people on their own, but with help from local support services or friends, to ensure an objective approach.
228. Local authorities should ensure that: an enhanced disclosure check has been carried out where the intention is to employ a PA, even where the parents know the person well. It is of paramount importance that parents take up references for prospective employees.
229. 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 self-directed support may have to be reviewed.
230. Prior to the PA starting work, parents need to make arrangements to train them to do the job. 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 be carried out in their home with their child.
'We have 3 children, Rachel aged 10 who attends the local primary school, Peter aged 8 and profoundly autistic (requires 2:1 care and is non verbal) attending specialist school on a Monday-Friday residential placement during school terms and David aged 6 who is severely autistic and attends a local primary school with full time 1:1 support. Peter and David have to be kept apart at all times as their autism does not allow them to share the same spaces.
We attended a PECS (Picture Exchange Communication System) course to help Peter communicate his needs as he was becoming increasingly frustrated being unable to do so. This difficulty was also frustrating for us as parents. After the course it took a couple of hours to teach the picture exchange concept to Peter and through self-directed support we have been able to keep this method of communication.
Self-directed support gives us control and flexibility to use the hours when we need them most. We have handpicked our PAs who are all highly trained in autism. They are very reliable, non judgemental and have very good relationships with all three of our children. They are excellent role models. In conclusion, self-directed support is a wonderful tool' (Parent of two sons on the autism spectrum).
How to mainstream self-directed support for children and their parents
231. Ensuring that there is adequate funding of local support services is the key for local authorities to ensure that self-directed support is routinely available for children and young people through their families. This support will help local authorities:
- promote self-directed support for children and young people
- ensure the families of disabled children and young people have access to self-directed support information targeted to their needs
- provide specialist support targeted to children's and young people's needs, for example an advocate or support worker may be needed with specialist skills, and
- train local authority care managers, and encourage a culture of positive risk taking to enable more children and young people to benefit from self-directed support if it meets their needs.
232. A Parent's Guide to Direct Payments published by the Department of Health 62.