The HSE South (Cork and Kerry) Region comprises large rural expanses and high population density urban areas. It is divided into five local health areas—West Cork, North Lee, South Lee, North Cork and Kerry.
Services for children with disabilities are provided by both voluntary service providers and the HSE Primary, Community and Continuing Care. The Brothers of Charity provide services in two Local Health Offices (LHO) areas (South Lee and Kerry) with a population of approximately 310,000.
The Brothers of Charity Southern Services have been providing community-based early intervention services to children and families in the Cork and Kerry region since 1986; they are now situated across nine locations in Cork City, Cork County and Kerry. We also provide a specialised pre-school service for children with severe/profound intellectual disability (ID) in Cork City.
The service aims to maximise the child’s full potential and works within the context of the family and community, empowering and supporting parents/care givers and family members.
The early intervention service also endeavours to facilitate the inclusion of children with special needs within their local communities through a partnership, collaboration and networking process. The focus of the early intervention services is to provide assessment, diagnostic and therapeutic services to children from birth to 6 years of age with developmental delay, autism, and intellectual disability. These include children with mild, moderate, severe/profound intellectual disability, autism, communication difficulties, and those at risk of intellectual disability with associated social, emotional, and behavioral difficulties.
The early intervention service acts as a resource, information, and liaison service to local pre-schools, primary schools, and health agency personnel, as well as to the local community.
The Brothers of Charity Southern Services worked with the HSE South and other agencies in the former Southern Health Board region to develop a model of health support services for children with disabilities in the Cork and Kerry area. The model was developed having regard to the Disability Act 2005 and one of the key developments was the establishment of an Intake Forum in each LHO. Intake Forums which have been set up in three of the five LHO areas are working well with all services providers agreeing the distribution of referrals based on standardised referral documentation. Assessment Officers attend the Forum meetings, informing service providers of Assessment of Need requests.
The Kerry Intake Forum was established in March 2008. The South Lee Forum Cork has not yet been established. Referrals to the Cork services are accepted from parents and health professionals.
Model of service:
The Early Intervention Service and the Autistic Specific Service operate on the basis of teamwork. Teams consist of a range of professionals with different expertise working together with families in a consultative and integrated way. There is full- or part-time input from the following professionals:
- Team Coordinator
- Community / Domiciliary Nurse
- Pre-School Therapists, Early Interventionists
- Family Support Workers
- Social Worker
- Speech and Language Therapist
- Occupational Therapist
- Paediatrician (sessional)
South Lee and Kerry LHOs have dedicated ASD teams which provide both diagnostic assessments, when there is a query of ASD, and intervention services for children with ASD. The intervention service is provided for those children attending mainstream settings, ASD units in mainstream schools, regular pre-schools and those on home tuition programmes. Children aged under 6 years diagnosed with ASD and additional intellectual disability may also be referred to their local Early Intervention Service and receive pre-school therapy and multi-disciplinary support from the EI Team.
Model of intervention for children with intellectual disability:
Following referral, team members assess the child and, in partnership with the parents, an Individual Child & Family Service Plan is devised and implemented to suit each child and family’s particular needs, so as to enhance strengths and skills.
Each child and family are allocated a key worker who works directly with them and coordinates their programmes, also acting as a link between the other team members, the family, the community and other agencies. In addition, all children receive multidisciplinary support services, as appropriate. The social worker is constantly involved in supporting families in personal, social and emotional areas, as well as facilitating parent groups and information sessions. Intervention services are provided as follows:
Birth to 3 years
The community/domiciliary nurse provides a stimulation/therapy programme on a weekly/fortnightly basis, as required, with the support of the multidisciplinary team members. All work in close cooperation with parents and liaise with primary care professionals as necessary. When the children are 2. years, they attend a parent/toddler group which focuses primarily on play activities, social interaction and encouraging separation from parents. This also provides an opportunity for parental support with informal coffee mornings.
3-6 years pre-school services
The majority of children generally attend Brothers of Charity Special specialist pre-school for one or two sessions weekly and their local pre-school for the remaining days where feasible. Very occasionally a child may need one-to-one individual input either within the group or on his/her own. The pre-school services are governed by the Child Care (Pre-School Services) (No 2) Regulations 2006 and are inspected regularly.
A wide variety of programmes are used within the service, depending on each child’s individual needs. These include the following: Portage; TEACCH; Hanen Communication; Lámh; Picture Exchange Communication System (PECS); Derbyshire Language; Montessori; Play, Motor, Sensory and Music Programmes and Developmental Therapy.
Summer Camps are held in July over a period of two weeks, with social outings and visits to farms, parks, beaches and other locations.
The Early Intervention Service places a particular emphasis on promoting awareness and providing education and information on intellectual disability to the local community, health and education personnel and agencies. Strong links have also been built up with pre-schools in the catchment area through personal contact, training and information sessions. It also links with local mainstream schools during the transition period from pre-school to national schools. Brothers of Charity Services also facilitate student placements to a wide variety of disciplines.
Model of Service for children with autism (non ID)
Parents of all newly diagnosed children are offered a Parent’s Post Diagnostic Group Programme. This consists of six weekly sessions designed to provide information on all aspects of ASD and to provide peer support through interaction with other parents. The Early Bird parent programme is offered to all parents of pre-school children. The Hanen Program is offered when appropriate.
Pre-school children have access to early interventionists who provide individual teaching to the children, while supporting parents through the early stages following the diagnosis. This therapy is provided either in the centre or in the child’s home, and children are referred for multidisciplinary support services from the team. ASD is a pervasive developmental disorder and within our approach the child has access to the full team, once they are accepted on the active caseload. This allows for an integrated approach and good communication between disciplines.
The need for family support is highly acknowledged by the Early Intervention and Autistic Specific Teams. A limited family support service is offered on a three-monthly contractual basis.
A professionally qualified home-support worker provides in-home and out-of-home sessions which include social activities such as swimming, shopping, playground visits etc. depending on needs and wishes of the child and family. This affords parents time for a break for themselves and their other children.
Inclusion of children in local pre-schools
Parents are encouraged to integrate their child in the local community pre-school as much as possible. The key worker and/or multidisciplinary staff visit and support the child and pre-school leader locally, and liaises with them about areas being targeted within their individual programme. This ongoing partnership has proved very successful to date; the child benefits from the intensive, personalised and therapeutic input from the Brothers of Charity Services combined with the social, emotional and educational benefits of relating to their peers in a local community setting.
Parent support groups / training and development
Informal coffee mornings and welcome meetings are also held throughout the year. More structured parent training and development sessions are also organized, where specific topics and training workshops take place—i.e. parent-plus programme, behavior management, stress management, education/information evenings, Hanen communication course etc. Parents of children with ASD may also access an ASD Specific Parent Support group with parents of children age 0-11 years.
Discharges / transition from Early Intervention Service
All members of the Early Intervention Service team are constantly involved in ongoing assessment, providing therapeutic input and reviewing and monitoring of each child’s progress. When a child reaches school-going age, a psychological assessment/review is conducted. Recommendations are then made in conjunction with the parents’ wishes regarding appropriate educational placement and future needs. The team supports the child and family in transition to their onward educational service.
Current challenges in provision of service Gaps in existing Early Intervention teams:
- The services have been advocating on an ongoing basis for additional funding to meet the gaps in existing services—in particular, frontline therapeutic interventions such as OT, SLT, physiotherapy, family support services, and
- Additional resources to support children in mainstream pre-school settings.
- Lack of school age services/teams for children over 6 moving from Early Intervention Services to mainstream primary education.
Impact of the Assessment of Need legislation:
a) There has been a decrease in intervention services owing to the demands of the Assessment of Need requests. Services such as individual therapies, attendance at team meetings, ICFSPs, parent programmes and staff training have been affected. Frontline staff who have always relied on the expertise of multidisciplinary support staff in the delivery and implementation of child-centred plans do not have these supports as available because of the demands for assessment work.
b) There have a large number of referrals to the ASD teams under the Disability Act and A.O.N. Process. The diagnostic process for ASD takes a considerable time allocation. The time restrictions under the act have impacted on the amount of intervention being undertaken as priority has to be given to assessments under the Act.
c) Professionals are under increased pressure to give definitive diagnoses, frequently with very young children. The time is so short that it does not allow for the lengthy observation period which may necessary with young children who can change within months. Families can expect very definite answers given the wording of the Act. A more gradual process can sometimes be more effective.
e) The timelines for the Act add to the pressure for staff when there is a staff vacancy, maternity leave, holidays etc. This becomes more acute around Christmas and summer time when staff are on leave and other staff must undertake their tasks to fulfill the obligations of dates. This further cuts down on the intervention work.
f) There is now an increased amount of paperwork to be completed.
g) Services can no longer give out reports on children following the diagnosis. This impacts on day placements when there is a waitlist,as the school/pre-school must wait longer for reports.
h) On a positive note, the AON process has speeded up the waiting time for children under 5 years—although lengthening the waiting time for older children.
i) The presence of an EI Forum in Kerry has made communication between different service providers much clearer and easier. Referrals are more likely to be received by the most appropriate agency and transfers are more transparent and agreeable.
What we want to achieve
- Maximum positive gains for the child and family
- Quick access to appropriate services
- Best practice in assessment, diagnosis and intervention
- Available intervention services as quickly as possible following diagnosis
- Ongoing coordinated service provision by multidisciplinary teams
- Flexibility between service providers for children who do not clearly meet criteria for any definite diagnosis, but clearly have difficulties and delays
- Availability of staff with appropriate experience and to retain staff
- That the voluntary sector and HSE define and agree caseloads across all disciplines to ensure that wrap-around team-based early intervention services are maintained and enhanced.