Early intervention services: a survey of parental attitudes toward service provision and impact of the disability act (2005)

by Brian Muldoon, Principal Clinical Psychologist, Brothers of Charity Services, Limerick. Dr Barry Coughlan, Senior Lecturer and Assistant Director, Doctoral Programme in Clinical Psychology, University of Limerick

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Introduction

Following years of lobbying by disability groups, the Irish Government launched the National Disability Strategy (NDS) in 2004. This framework had a number of positive action measures to support the participation of people with disabilities in Irish society. The NDS included the Disability Act (2005), as an integral part of the strategy, with the aim of dealing with the special education and/or health needs of persons with disabilities.

The Disability Act (2005) sets out a new approach to assessing the needs of persons with disability: the Assessment of Need (AON). From 1 June 2007, children under the age of 5 years are entitled to apply for an AON without regard to the cost or capacity to provide any of the services they need. The Disability Act was rolled out for children under the age of 5, as the first stage of a cradle-to-grave strategy. The Disability Act applies to this age group first, to reflect the importance of meeting needs through early intervention. Children under the age of five now have a right in law to:

  • An independent assessment of their health and educational needs.
  • An assessment report.
  • A statement of the services they will receive.
  • The facility to make a complaint if they are not happy with any part of the process.

To satisfy the requirements of the Disability Act the HSE developed a Multi.annual Investment Plan 2005–2009. In the HSE West region, this resulted in the establishment of three Early Intervention Specialist Teams, which include a children’s services manager, an administrator, a clinical psychologist, an occupational therapist, a physiotherapist, a speech and language therapist, a social worker and an early intervention specialist.

Research aims

The aim of this research was to compare the service received by those children who have been referred through the traditional model (i.e. by healthcare professionals such as area medical officers, public health nurses etc.) and those who have been referred through the Assessment of Need process. The research also aims to identify what families find positive about the service they receive and what areas require improvement.

Literature review

The development of our early intervention services followed the recommendations of the European Agency for Development in Special Needs Education. These are: Availability – to ensure that early childhood intervention reaches all children and families in need as early as possible. Proximity – to ensure that early childhood intervention provision and services are easily accessible, geographically available and are family focused.

Affordability – to ensure that early childhood intervention reaches all families and young children in need of support, despite their different socio-economical backgrounds.

Interdisciplinary working – to ensure that the multidisciplinary professionals work in partnership with families, before and whilst carrying out agreed tasks, with shared principles, objectives and working strategies.

Diversity – to ensure shared responsibilities among the health, education and social sectors involved in early intervention services and provision.

Carpenter (1998) emphasised evaluation as an ongoing feature of the best intervention services. He went on to say that funding bodies in most countries now require evidence based practice both from professionals and service providers so as to target resources more efficiently and place quality improvement as an integral part of family based services.

Finally, Mc Naughton (1994) outlined a number of reasons for carrying out evaluations with families who are in receipt of early intervention services:

  • Parents have the major responsibility and control over their child’s development and their decisions concerning success and failure should have primacy.
  • Information about parent’s satisfaction can be used to develop better services.
  • Parent participation in programmes may be increased by including them in evaluation.
  • Funding agencies may need to be convinced of the usefulness of a programme.
Research methodology

In order to obtain a broad overview of the service and as the early intervention caseload is large (N=290), a survey method was adopted. A combination of closed questions to generate quantitative data and open ended questions for qualitative analysis was utilised.

The evaluation was conducted with the parents of those children who are currently in receipt of a service from an early intervention service provider. For analysis, the sample was divided into two groups. Group 1 comprised those children who were referred to the service by other health care professionals (N=189). Group 2 was made up of those children who were referred through the Assessment of Need process (N=101).
The questionnaire employed was based on a one developed by Farrelly (2007). It was generated by a review of the common themes and services provided to this population in the early intervention literature. The questionnaire was adapted to make it more user-friendly and additional questions were included to capture the impact of the Assessment of Need process.

The questionnaire was sent to all of the families in receipt of early intervention services within one area of the HSE West. Participants were offered the name and contact details of the researcher in an effort to increase the response rate.

Descriptive statistics were used to analyse demographics such as age, gender, location and level of disability. Frequencies were employed to look at whether any differences exist between Group 1 (Traditional Referral) and Group 2 (A.O.N. Referral). Responses to open.ended questions were categorised using content analysis (Sells, Smith and Sprenkle 1995).

Findings

Ninety-nine questionnaires were returned, representing a response rate of 34%, which is similar to that observed in other postal studies (Graham et al. 2009).

Section 1 of the questionnaire contained ten closed questions which focused on gathering biographical information on the child and when they started to engage with the services. Parents were also asked two questions on the Disability Act.

Section 2 reviewed the frequency and types of assessments or interventions children had accessed from the service. This section listed 14 supports delivered by the EI team.

Section 3 contained two open.ended questions where parents were given the opportunity to provide ideas on how to improve current services or to highlight what positive aspects which should be retained.

Section One
The aim of Section 1 was to gain a demographical picture of the children attending the Early Intervention Services as well as to ascertain parental knowledge of the Disability Act. The results were as follows:

Age: The mean age of children attending the service was 3 years, 9 months and the age range of the children survey was from 5 months to 6 years 7 months.

Gender: The response sample represented 57 boys and 41 girls (One respondent did not answer this question).

Family size: The mean family size of those who responded was 2.45 children, with a range of from 1 to 7 children.

Residence: 48 of the parents who responded lived in an urban setting and 51 lived in a rural setting.

Specific Syndrome/disability: 57% of respondents stated that their child has a specific syndrome or disability. Examples listed were Down Syndrome, Autistic Spectrum Disorder, Cerebral Palsy, Spina Bifida, etc.

First notice of disability: The mean age for parents noticing that their child was presenting with difficulties was 13 months. The range was before birth to six years.

Date of start of receipt of services: The mean age for children starting to engage with the service was 22 months. The range for this category was birth to six years.

Awareness of Assessment of Need: 66% of respondents repeated an awareness of their entitlement to an independent Assessment of Need under the Disability Act (2005)

Informed of entitlement by: 28 respondents in the sample stated that they were informed of the AON by their EI team. Numerous other sources were listed as informers (Table 2).

Table 1: Characteristics of children attending the EI service
Age of Child
Range  Mean
5 months to 6 years 7 months  3 years 9 months
Gender
Male  Female
N= 57 (58%)  N=41 (42%)
Location
Urban  Rural
N=48 (48%)  N=51 (52%)
Specific Syndrome
Yes  No
N=56 (57%)  N=43 (43%)
When difficulty noticed
Range  Mean
Before birth to 6 years  13 months
Receiving Services
Range  Mean
0-6 years  22 months

Table 2: Sources of information on AON
E.I. Team:  28
Public Health Nurse:  9
AON Officer:  7
Regional Child Development Centre:  6
Health Service Executive:  5
General Practitioner:  2
School:  1
Down Syndrome Association:  1
Parent Support Group:  1
Private Therapist:  1
Hospital:  1

Section 2:
The aim of Section 2 of the questionnaire was to quantify the number of children accessing the various services provided by the EI team. It was also hoped to compare the levels of services received by children referred the traditional route, e.g. by the PHN, GP, AMO, etc., to those children referred under the Disability Act (2005). The breakdown of figures is as follows:

Table 3: Assessments/interventions received
Traditional Referral A.O.N. Referral
Physiotherapy 75% 63%
Occupational Therapy 77% 83%
Speech and Language Therapy 75% 85%
Developmental assessment by psychologist 43% 65%
Intervention from EI Specialist 72% 65%
Parent Counselling 23% 20%
Sibling Groups 11% 9%
Intervention by Paediatrician 55% 61%
Social Work Input 49% 52%
Advice on Benefits 47% 70%
Information on child’s disability 53% 57%
Preschool support 51% 50%
Information on Services 38% 63%
Parent support organised by service 32% 26%

Section 3:
Section 3 of the questionnaire contained two open.ended questions which allowed the participants the opportunity to highlight the gaps in the service provided to their child. They were also asked to list the positive aspects of the services provided to their child. Data analysis was carried out using Thematic Analysis. The content of the data was coded manually by the researcher and a number of key themes on each question were identified.

Conclusion

This study is in keeping with the views of Carpenter (1998), who emphasised that evaluation is an ongoing feature of the best intervention services. It aims to place quality improvement as an integral part of our family-based service. It is without question that the future funding of our services will be dependent on research/evaluation, such as this, being completed.

This study looked at the impact of the right to an Assessment of Need under the Disability Act (2005). To our knowledge this has not been reviewed before and the results are very interesting. We had expected that those children who had been referred under the Act would have received a more comprehensive service than those children referred through traditional referral pathways because of the influence of the legislative framework. However, children from both groups seem to be accessing services equally.

However, considerable caution should be exercised regarding external validity or transferability of these findings. This research was carried out on a well established and resourced service for children with special needs. Replication of this study in other parts of the country could yield very different results.
This study should be perceived as a small first step in developing a comprehensive understanding of parent’s experiences of an early intervention service and the Assessment of Need process.

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