Children’s Home-based Short Breaks Team

• Pre-school children living in the east Kent area including Swale
• Pre-school children with severe global developmental delay with additional health needs (i.e. those on the east Kent specialist nurse advisor (SNA) caseload)
• Children with a complex health need (i.e. those on the Children’s Community Nursing Team (CCNT) caseload) or those who are dependent on technology as defined by Aiming High for Disabled Children: Short Breaks Implementation Guidance, DCSF and DH 2008.
• Children with life limiting conditions (i.e. those on the CCNT caseload) as defined by Together for Short Lives
• Children with life threatening conditions, such as children with cancer (i.e. children on CCNT caseload)
• Children in long term remission or following successful curative treatment are not included, as defined by Together for Short Lives
• Children with a severe and profound level of disability with an additional health need whose needs are over and above what can be met by universal or targeted services
• Children with a severe and profound physical or learning disability with an additional health need whose needs cannot be met by universal or targeted services
• Children not in receipt of Direct Payments or a Continuing Care package
• To be read in conjunction with appendix for definitions of short breaks, universal, targeted and specialist by referral services.

• Once a referral that meets the above criteria is received, children will have a detailed home assessment, carried out by a registered nurse. This will include exploration of what other services the family are in receipt of i.e. nursery. Joint assessments/visits to families with other appropriate professionals will be planned, as necessary. The assessment will inform the allocation of a package of care.
• The duration of each session will depend on the individual needs of the child; but will be no longer than three hours.
• Children and their families are allocated up to a maximum of one session per week.
• In exceptional circumstances more may be allocated, if the child and families needs are such or so severe that they do not meet the criteria of and cannot access other targeted, universal or specialist by referral services.
• Additional sessions may be agreed and allocated for short periods of time during a difficult period of time or change in the family circumstances. This is to allow a period of adjustment or to allow time for other services to be introduced.
• Allocation of any package of care from the service will depend upon the assessed need of child and family, resource availability and whether the child can access another service that is as or more appropriate to their needs.
• Families will be informed in writing, following the home assessment, whether they are eligible for a home based short breaks service and if so, how many hours they have been allocated.
• Packages of care will be reviewed every 6 months, or sooner if there has been a significant change in the child’s condition or family’s needs.
• Where possible the review will take place jointly with SNA, keyworker, CCN or social worker.
• The service may finish once the child meets the criteria and is able to access other appropriate universal, targeted or “specialist by referral” short break opportunities such as pre-school/nursery services.
• The service will finish once the child attends school and therefore meets the criteria and can access other appropriate universal, targeted or “specialist by referral” services for short breaks, such as after school clubs.
• Wherever possible, the registered nurse will work with families to identify, sign-post and in some instances transition to the next service.
• However, on occasion it may be necessary to withdraw the service at our discretion in all reasonable circumstances.
• The day/s that the short break will happen is arranged in partnership with the family and team leader, as far is practicable and within the resources available.
• The lead nurse, team leader and support workers will work in partnership with the family and any other statutory or voluntary service to ensure best health care outcomes for the child.
• Support worker allocation may be required to change depended on family and service need.

What is a short break?

Short breaks form part of a continuum of services, which support disabled children and their families. Short breaks are provided to give:

• disabled children and young people enjoyable experiences away from their primary carers, thereby contributing to their personal and social development and reducing social isolation
• parents and families a necessary and valuable break from caring responsibilities.

These include day, evening, overnight and weekend activities and can take place in the child’s own home, the home of an approved carer, a residential or community setting.

(Aiming High for Disabled Children: Short Breaks Implementation Guidance, Department of Children, Schools and Families – 2008)

What does the Children’s Home-based Short Breaks Team provide?

• Support disabled children with complex health needs to participate and access a wide range of home based and community, recreational and learning based activities.
• Support the disabled child with complex health needs, to develop positive relationships with their non-disabled peers.
• The service will be delivered as part of the wider continuum of care for the disabled young child and their family.
• The Children’s Home-based Short Break Service will deliver or support a range of positive, fun, age appropriate activities both within the home and out in the community for disabled pre-school children with complex health needs, life limiting conditions, palliative care needs, and those who are dependent on technology who are not in receipt of direct payments or continuing care.

Universal short breaks

This is also known as “mainstream” services. This includes services such as leisure centres, youth clubs, children’s centres, district council play schemes, Brownies, Cubs, Boy Scouts and Girl Guides. It is recognised that some children may need support to access mainstream services, for example a befriender accompanying them. This support may be temporary, until the service is confident it can successfully include a child. In some cases, where the needs of a child are more complex, support may be more long-term.

Targeted short breaks

These services are aimed at disabled children whose needs are less complex than those of children who require a more specialist service.

Short breaks include play schemes or weekend/evening clubs that are specifically for disabled children and young people, such as sports clubs, after school clubs and holiday play schemes.

Targeted groups and clubs may be run by voluntary or charitable organisations or by parents and some can be approached directly without having to go through a social worker or referral process.

Specialist by referral

These services are aimed at children with severe and complex levels of disability whose needs are over and above what can be met by universal or targeted services.

Access to these services requires a 1989 Children Act assessment of need or specialist health assessment. Referral to these services can only be made by a specialist social worker from KCC’s Disabled Children’s Service, or key health professional.

Short break services include overnight breaks in a residential short breaks unit, short breaks with an approved foster carer, short breaks in the family home provided by a statutory service such as the NHS or a direct payment to purchase a service that meets the assessed need following a 1989 Children Act assessment of need by a social worker. This would also include breaks offered by children’s hospices.

Children’s continuing care packages

A children’s continuing care package is provided for disabled children and young people whose complex needs cannot be met by universal, targeted and specialist services alone. Working within The National Framework for Children’s Continuing Care, a health assessor will undertake a holistic assessment of the child’s and family’s needs, including input from the child’s social worker, teacher and other professional involved with the family. The case is then presented to a multi-agency panel. The panel will determine whether the child meets the eligibility criteria for a children’s continuing care package and the size of the package that will be offered.

(Warde, M. (2011) Consultation on a short breaks services statement for parents and carers of disabled children and young people in Kent. KCC)

Complex health needs

Children with complex health needs includes those with a disability and life limiting conditions who have reached the palliative care stage of their life cycle.

Life limiting conditions are defined as those for which there is no reasonable hope of cure and from which children or young people will die. Some of these conditions cause progressive deterioration rendering the child increasingly dependent on parents and carers.

Life threatening conditions are defined as those for which curative treatment may be feasible but can fail, such as children with cancer. Children in long-term remission or following successful curative treatment are not included.

Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancements of the quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement.

It is also important to note that children with a life limiting condition / life threatening condition are considered as disabled under the Disability Discrimination Act 2005.

Children with complex health needs can also have a range of cognitive, physical and sensory impairments. These children may often require support which includes clinical and / or invasive procedures in order to maintain their optimum health on either a regular basis or in an emergency. Some of these children may be dependent on technology e.g. ventilation; tube feeding and dialysis.

The Children’s Home Based Short Breaks Team is led by registered nurses and the service is provided by appropriately trained children’s support workers. The team receive referrals for Short Break requests for children and young people and their families from a number of sources. The nurse undertakes an initial assessment of need, identifies any training required and develops the plan of care for the child and their family.

The children’s support workers are trained specifically according to the individual needs of the child/young person and the service they deliver is based in the community, either at the child’s home or at school/nursery. The Short Break is designed to offer the child/young person and their family a break from one another, the aim is to provide one session of three hours once a week on a set day. There may be instances where needs are identified and for a short term the frequency or duration of the session/s may be changed.

Allocated sessions will run between 9am to 5pm, five days a week (excluding bank holidays) and will last three hours. This will be discussed and arranged according to your child’s particular needs.

For the first four weeks/sessions of the package starting, OR until relevant training by the support worker has been undertaken, the parent needs to remain with the child as an introduction period.  At the end of the four weeks/sessions OR after the relevant training has been completed, the parent will review with the support worker to see whether both parties are happy for the support worker to lone work with the child.

After four to six sessions, a phone call will be made to the family to review and discuss the sessions.

The service will finish once the child attends school or they reach their fifth birthday.  If the service is oversubscribed and the child is accessing nursery or another short break provision the service may finish beforehand.

This provision will be reviewed every six months, or sooner if there has been a significant change in the child’s condition or family’s needs, at which point any proposed adjustments will be discussed. However, should you wish to adjust the service or if it is unsuitable please contact the office on 0300 790 6105 or your allocated support worker on the number that they will provide as soon as possible. The email address for home based short breaks is kentchft.childrenshomebased@nhs.net.

Due to the nature of this service, a change in support workers may be necessary. This will only happen after it is discussed with the family.

Responsibilities of your support worker:

• Will care for the medical, physical, social, intellectual and enhanced wellbeing/needs of your child.
• To undertake sessions in your home/garden, in the wider community or in local hospitals, however, support workers are not permitted to transport children in their vehicles.
• They will not be responsible for the care of siblings or other family members nor will they be responsible for household maintenance/tasks.
• The Support Worker’s work mobile phone will be on at all times and occasionally the Support Worker may have to respond to a text from another family or take a phone call from a work colleague.

Responsibilities of the family/Parent:

• To check the red folder before each session – any changes to be communicated to the support worker
• Notice will need to be given as soon as possible should you need to cancel a session.
• This can be done by calling your support worker on the number that they will provide or the office on 0300 790 6105.
• Continued failure to inform us of cancellations will result in an immediate review of provision.
• If a session is no longer required due to going on holiday, appointments such as medical/hospital visits please contact your support worker in the first instance or the office number as soon as possible. The support worker will try to accommodate and rearrange the session if possible and based on availability, however this is not a guarantee.

Day-to-day exceptions:

• When your support worker is on leave or study/training days, Short Breaks will be cancelled for that day/week.
• One week’s notice will be given in these circumstances.
• In the case of staff sickness, Short Breaks maybe cancelled at short notice.

Short Breaks will be withdrawn if:

• There is a breach of any of the above terms and conditions.
• Any member of the family behaves in a way that is deemed inappropriate by our support workers or by us towards a member of the Home Based Short Breaks team.
• At our discretion in all reasonable circumstances.