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Promising Practice Profiles

Healthy Start: A national strategy for children of parents with learning difficulties

The full Promising Practice Profile is available for download in PDF format (468 KB)

Project practice

Supporting parents with learning difficulties

Project undertaken by

Australian Supported Parenting Consortium - Parenting Research Centre (lead agency) and the University of Sydney

Start date

2005

Focal areas

Supporting families and parents

Early learning and care

Creating Child friendly communities

Program

Invest to Grow (ItG)

Issue

Parents with learning difficulties are a growing population in the community and have specific learning needs. There has been a recent increase in the number of people with learning difficulties becoming parents and it is estimated that over 40,000 Australian children under 5 years of age have at least one parent with a learning difficulty. Research has also shown that the ability of parents with learning difficulties to parent successfully cannot be determined by IQ level, as parents with learning difficulties are a heterogeneous group whose parenting skills and social situations differ widely. Factors which have been found to impact on parenting skills in those with learning difficulties include the amount of support these parents receive. This includes social support (from family and friends) as well as support from services. Therefore, community factors such as social support and access to resources are important for improving outcomes for this group of parents and their children.

Research has shown that parents with learning difficulties can learn new parenting skills and can parent effectively with adequate support and training that focuses on the abilities of parents, and matches their learning needs. However practitioners are often ill-equipped to meet the learning needs of parents with learning difficulties. Workers in this field often seek information and resources for working with these families. Workers also have limited access to training in evidence-based, best practice parenting programs designed specifically for parents with learning difficulties. There are very few courses offered which specifically train practitioners in how to identify and meet the needs of parents with learning difficulties. Currently the majority of this knowledge comes from clinical experience held by experts working in the field. Therefore, the opportunity to communicate and consult with others working in this area is of paramount importance for practitioners.

Program context

Healthy Start is an initiative of the Australian Supported Parenting Consortium (ASPC), which was formed in 2006. The ASPC consists of the Parenting Research Centre (PRC) and the Australian Family and Disability Studies Research Collaboration (AFDSRC) at the University of Sydney. Both the PRC and AFDSRC have been conducting research and development activities in the area of parents with learning difficulties for the last 10 years.

The PRC is a national, independent, not-for-profit research and development organisation established to help parents raise happy healthy children through: seeking and sharing scientific knowledge of effective parenting; developing research-based practical solutions to contemporary parenting challenges; building the capability of the community to support parents. The AFDSRC is part of the Faculty of Health Sciences, University of Sydney. The broad aim of the AFDSRC is to actively promote the full participation of families where a parent or child has a disability in community life.

The Healthy Start Learning Hub strategy is the first National strategy that has used hubs or networks to build capacity among practitioners. It is also the first national strategy to build practitioner capacity in the area of parenting with a learning difficulty. The Healthy Start Learning Hub strategy has resulted in a unique approach to disseminating evidence-based programs and training, which is also going to be evaluated by the Healthy Start project team and FaHCSIA. This will contribute much new knowledge to the existing evidence base regarding capacity building and dissemination of best-practice resources.

Healthy Start Learning Hubs were initially established during the period January-December 2006. The majority of hubs have been maintained for a period of between 15-24 months. Originally 72 Learning Hubs were established with 68 of these hubs still in operation.

Each Learning Hub prepares a Local Area Action Plan (LAAP) and tailors its LAAP to the unique needs of the local community. This ensures that Learning Hubs are always addressing issues that are relevant to the hub members and the local resources available.

Program objectives are delineated as follows:

Objective 1: Healthy Start Learning Hubs will address local needs

Each hub will develop a plan to address one or more of the community needs identified.

Objective 2: Healthy Start Learning Hubs will be a means of disseminating evidence-based practice

Learning Hubs will provide practitioners with an access point to gain information and participate in training regarding working with parents with learning difficulties.

Objective 3: Healthy Start Learning Hubs will build capacity in the field

The hub will be a forum for practitioners to share information and resources.

Practice description

Learning Hubs have been established in each state and territory, and in regional/rural areas as well as metropolitan areas (e.g., Adelaide, SA), regional (e.g., Ballarat, VIC) and rural areas (e.g., Cape York, QLD). This suggests that the hub model used in the Healthy Start Learning Hub strategy is flexible enough to be replicated in many different geographic locations, and that the Learning Hub model can be adapted to a wide range of communities.

The common components of each Learning Hub are:

Learning Hub members have been given opportunities to participate in training in best practice programs for parents with learning difficulties.

The key ingredients in the development of learning hubs and which have contributed to their successful implementation are:

Key ingredient 1: Identification of a host agency and appointment of a Learning Hub Convener.

Key agencies were identified to host Learning Hubs in each Australian state and territory. Learning Hub convenors were appointed to lead each hub, are committed to the role, and have agreed to undertake an on-line unit of study to improve their skill and knowledge in the area of parenting with a learning difficulty. Conveners began the hub with a network of key agencies/individuals/stakeholders located in the local area to maximise resources and information and the establishment of future networks. Convenors are responsible for recruiting local membership with cross-sectoral representation. The hub membership consists of practitioners in the local area that can be linked functionally by roles, geographically by location, or by pre-existing relationships. Convenors are able to participate in an online unit of study offered through the University of Sydney "Parenting with a Developmental Disability". This online unit focuses on evidence-based approaches to family support and parent education where parents have learning difficulties and how to develop a Local Area Action Plan.

Key ingredient 2: Development of Local Area Action Plans (LAAPs)

All Learning Hub convenors took part in an on-line unit of study in parenting with a developmental disability offered through the University of Sydney. A component of this unit includes education about how to develop an action plan. With support from the Healthy Start team and state leaders, each Learning Hub developed a LAAP. Hubs are provided with a toolkit to conduct a community asset inventory. This inventory involves collecting information about resources available/existing in the community and was used to inform the Local Area Action Plan of each Learning Hub. LAAPs addresses local needs for parents with learning difficulties by focusing on strengths and assets of members and encouraged people to share resources. LAAPs are developed to clarify visions, goals, and ground rules for the learning hubs as shared vision and goals are important for sustaining long term participation and stability of the hubs.

Local Area Action Plans tended to focus on:

Key ingredient 3: Provision of training, professional development and access to resources

Hub members are practitioners who are actually working directly with families where a parent has a learning difficulty. Training in two evidence-based programs for parents with learning difficulties is offered to hub members. Other resources developed specifically for parents with a learning difficulty are disseminated by the Healthy Start National team through Learning Hubs. The Healthy Start website is a key mechanism for disseminating information on evidence-based practice.

Key ingredient 4: Cross-sectoral capacity building

In order to link practitioners working in the same field, each hub has had cross-sectoral representation. Exchange of information between hub members increases knowledge about services and referral options available in the local community. Increasing information sharing among service providers and practitioners allows inter-organisational exchange, interactions, and joint action.

The Healthy Start national team produced a Learning Hub manual in the early stages of the project, which describes basic principles and processes that can be incorporated in the establishment of hubs. This manual was recently updated and revised.

Research base

There has been a recent increase in the number of people with learning difficulties becoming parents (Ray, Rubenstein, & Russo, 1994; Whitman & Accardo, 1993) and it is estimated that over 40,000 Australian children under 5 have at least one parent with a learning difficulty. Research has also shown that the ability of parents with learning difficulties to parent successfully cannot be determined by IQ level, as parents with learning difficulties are a heterogeneous group whose parenting skills and social situations differ widely (McGaw & Sturmey, 1993). Factors which have been found to impact on parenting skills in those with learning difficulties include the amount of support these parents receive. This includes social support (from family and friends) as well as support from services. Therefore, community factors such as social support and access to resources are important for improving outcomes for this group of parents and their children. Research has shown that parents with learning difficulties can learn new parenting skills (Llewellyn et al., 2003), and can parent effectively with adequate support and training that focuses on the abilities of parents, and matches their learning needs (Feldman & Case, 1999).

Many practitioners feel they do not have the skills or knowledge for their role in supporting parents with learning disabilities. In a survey of 266 nurses working with parents with learning difficulties, Culley and Genders (1999) found that 83% felt that their education had not assisted them in gaining the skills necessary for their current role. Few of the nurses had received specific training about how to support parents with learning difficulties and the majority lacked resources and knowledge to support these parents effectively. The nurses also indicated that they would like to receive more formal training covering key issues for parents with learning difficulties, and acknowledged the need for further research and literature to support them and inform their role. These are common problem for practitioners working with vulnerable families who often lack the information, support, and training they require to adequately support families and carry out their role (Halpern, 1997).

Nurses in the Culley and Genders (1999) study also indicated they would like the opportunity to communicate with practitioners from other agencies to share information, examples of good practice, and facilitate networking with colleagues. The nurses also indicated that they would like more clinical tools to use with parents. These factors have previously been identified as factors contributing to good practice with vulnerable families. The opportunity to use other practitioners as resources, as sources of guidance, consultation, case conferences, and supervision have also been highlighted as important for good practice (Halpern, 1997).

There is some published evidence, notably by Kurtz (1998) that establishes the potential of hubs for improving service delivery. There is no published research that describes the implementation and outcomes of hubs holistically in relation to support for parents with learning difficulties.

Networks are defined as associations with others who hold similar interests in order to develop and access ideas, information, support, or other resources. Networks enable individuals to improve what they are currently doing or achieve a common goal (Kurtz, 1998). A type of network can also be called a hub. A hub is an association of individuals or agencies who are linked: 1) geographically by local services; 2) functionally by roles; 3) by interests or common goals; or 4) by pre-existing links or networks. The Healthy Start hub strategy pro-actively links practitioners who work with parents with learning difficulties in local areas via Healthy Start Learning Hubs.

There is information to suggest that hubs and networks can be used successfully to enhance practice. A study by Kurtz (1998) examined the establishment of a network of different professionals working with runaway youth and found that there were four distinct characteristics of their network that made it successful. The first was labelled "Partnership" and related to the relationships amongst people in the network being supportive, inviting, and a source of information, where members views were sought and valued. The second important factor contributing to the success of this network was an agreed upon mission and mutual goals, as this helped to maintain the focus and direction of the network. The third important factor was state of the art knowledge and practice, where members perceived other members as being a useful source of practical knowledge regarding current issues, problems, policies, and interventions. The fourth factor that was considered very important in the success of this network was member effort, as the success of the network depended on members becoming actively involved, putting effort into the network, and taking on leadership roles. Members of this network reported that it had significantly impacted on their practice and has contributed to increasing their skills, knowledge, and confidence in their work (Kurtz, 1998).

Learning Hubs have been initiated in Queensland by government to help integrate child care and family services. Fourteen hubs were established in regions of Queensland to specifically improve parent access to services such as education, health and other community services for their children. Outcomes for this project have included:

Networks can therefore be an effective way to strengthen communities and integrate services by allowing exchange, interaction, and joint action by individuals (Mulroy, 1997). Members of locally organised hubs also have a good understanding of local issues, services, and needs and can therefore focus on issues affecting their local area (Nelson et al., 2004).

Outcomes

The main outcome of the Learning Hub strategy is an increase in the capacity of practitioners working in the field as evidenced by:

Evidence of outcomes

Links established between agencies and practitioners servicing parents with a learning difficulty

It was anticipated that, across Australia, approximately 100 Learning Hubs would be established, with Learning Hubs in every state and territory in Australia.

74 Learning Hubs were initially established, with 69 currently existing. As expected, all states and territories in Australia have Healthy Start Learning Hubs. A decrease in the number of existing hubs since initial establishment has been due to hubs merging or other factors, such as limited membership, and staff turnover resulting in the hub ceasing to exist.

Of the 69 Learning Hubs that currently exist, all are hosted by an agency; 4 Learning Hubs are co-hosted by more than one agency. All hubs consist of a minimum of 3 members who are practitioners in the field, and contain membership that has cross-sectoral representation.

The average membership reported by Learning Hubs is 14 with the largest hub membership being 52 and the lowest being 7. On average, 7.5 agencies are represented by Healthy Start Learning Hub members. This shows that the Learning Hub strategy was effective for establishing links between agencies, with some agencies co-operating to co-host a Learning Hub in their local area and all hubs having broad cross-sectoral representation.

A number of Learning Hubs have been recognised through awards. Examples include:

An increase in the number of practitioners informed about evidence-based practices and programs for parents with learning difficulties

It was anticipated that 300 practitioners across Australia would receive training in one of two evidence based programs developed specifically for parents with learning difficulties, and that practitioners from each state and territory would participate in this training. It was anticipated that approximately 100 Learning Hub convenors would participate in a graduate on-line unit of study offered through the University of Sydney in parenting with a developmental disability, and that convenors from each state and territory in Australia would participate in this on-line unit.

To date, 464 practitioners have received such training, which was considerably higher than the anticipated number (300). As expected, practitioners from every state and territory have participated in training. This indicates that offering training through Learning Hubs was an effective practice for advertising training opportunities and recruiting participants.

Having established Learning Hubs across the country allowed training events to be organised in locations to maximise attendance. For example, due to high interest from Learning Hubs, training events were organised in their locality. Therefore, Learning Hubs enabled training to be held in locations that increased access for practitioners in regional or rural areas. Several training events were held in regional areas including Mildura VIC, Wodonga VIC, Ballina NSW, Armidale NSW, and Penguin TAS.

The Learning Hub structure also allowed for peer support during training and program implementation. Several hubs had regular meetings to allow hub members who had participated in training to provide each other with support and peer supervision in program implementation. As part of the training program, practitioners were offered individual telephone support by the national Healthy Start team during program implementation. The Learning Hub structure resulted in several hubs organising group telephone support calls. For example, the Healthy Start Learning Hub hosted by Wanslea Family Services in WA organises regular group support, via teleconference, with over 20 hub members who have attended training. In addition to this, several practitioners have organised joint telephone support calls with other hub members. This suggests that the Learning Hub strategy has been effective for increasing the knowledge of practitioners in evidence based practices and has provided a forum for practitioners to exchange information, resources and provide peer support.

To date, 96 practitioners have delivered at least one of these evidence-based programs to families where a parent has a learning difficulty. This indicates that offering training through Learning Hubs has increased the capacity of practitioners to deliver best practice programs to families.

Fifty-eight Learning Hub convenors successfully completed the on-line unit of study offered by the University of Sydney. This provided them with additional information, resources and skills that could be shared with their Learning Hubs

Needs addressed in the local community for parents with a learning difficulty

It was expected that each hub develop a local area action plan which works towards addressing a gap in services or resources in the local community. Hubs were expected to complete a community asset inventory to inform them of the current services and resources available in the community for parents with learning difficulties and their children.

To date, of the 68 existing hubs, 28 have submitted local area action plans to the Healthy Start national team. Forty are currently developing or reviewing their action plans. The action plans of hubs have varied in their focus and activity. The majority of hubs have been able to successfully develop action plans, with several having achieved their plan, and now beginning work on their second action plan for the Learning Hub. Action plans are evidence that the hub is responding to local needs.

Evaluation of Healthy Start Learning Hubs was conducted using qualitative interviews with Learning Hub Convenors and a Capacity Questionnaire. A Capacity Questionnaire was completed by Learning Hubs in 2006 and again in early 2008. Results submitted by Learning Hubs suggest that Healthy Start led to improvements in local communities in the following three areas:

Qualitative interviews were conducted with learning hub conveners in three waves (wave 1 in 2006, wave 2 in 2007 and wave 3 in 2008). Results revealed that multiple factors contributed to successful establishment and maintenance of Learning Hubs including:

Policy analysis

The Healthy Start Learning Hub strategy is the first National strategy that has used hubs or networks to build capacity among practitioners. It is also the first National strategy to build practitioner capacity in the area of parenting with a learning difficulty. The Healthy Start Learning Hub strategy has resulted in a unique approach to disseminating evidence-based programs and training, which is also going to be evaluated by the Healthy Start project team and FaHCSIA. This will contribute much new knowledge to the existing evidence base regarding capacity building and dissemination of best-practice resources.

The Healthy Start Learning Hub strategy is also innovative because it allows each Learning Hub to tailor its local area action plan to the unique needs of the local community. This ensures that Learning Hubs are always addressing issues that are relevant to the hub members and the local resources available.

Evaluation

Evaluation of the strategy is an inherent part of this project and evaluation has been conducted internally. However, the final evaluation report will be examined by an independent reviewer as assigned by FaHCSIA. The evaluation of the program comprised a number of components including a capacity questionnaire completed by hubs pre- and post-intervention; semi-structured interviews with all Learning Hub convenors to identify factors that contribute to or impede successful hubs; and collection of demographic statistics regarding features of hubs including membership growth and sustainability.

These findings have been reported in:

Final evaluation report of Healthy Start: A national strategy for children of parents with learning difficulties. Prepared by the Australian Supported Parenting Consortium, June 2008.

A summary of the evaluation findings is available at: www.healthystart.net.au

Project related publications

Healthy Start Publications

References

Culley, L., & Genders, N. (1999). Parenting by people with learning disabilities: The educational needs of the community nurse. Nurse Education Today, 19, 502-508.

Feldman, M. A., & Case, L. (1999). Teaching child-care and safety skills to parents with intellectual disabilities through self-learning. Journal of Intellectual and Developmental Disability, 24, 27-44.

Halpern, R. (1997). Good practice with multiply vulnerable families: Challenges and principles. Children and Youth Services Review, 19, 253-275.

Kurtz, P. (1998). A case study of a network as a learning organisation. Administration in Social Work, 22, 57-73.

Llewellyn, G., McConnell, D., Honey, A., Mayes, R., & Russo, D. (2003). Promoting health and home safety for children of parenting with intellectual disability: A randomized controlled trial. Research in Developmental Disabilities, 24, 405-431.

McGaw, S., & Sturmey, P. (1993). Identifying the needs of parents with learning disability: A review. Child Abuse Review, 2, 101-117.

Mulroy, E. A. (1997). Building a neighbourhood network: Interorganisational collaboration to prevent child abuse and neglect. Social Work, 42, 255-264.

Nelson, G., Pancer, M., Hayward, K., & Kelly, R. (2004). Partnerships and participation of community residents in health promotion and prevention: Experiences of the Highfield Community enrichment project (Better Beginnings, Better Futures). Journal of Health Psychology, 9, 213-227.

Queensland Government Department of Families. (2001). Hub action research project: Project brief. Retrieved March 2005 from www.communities.qld.gov.au/childcare/hub/research.html.

Ray, N., Rubenstein, H., & Russo, N. (1999). Understanding the parents who are mentally retarded: Guidelines for family preservation programs. Child Welfare, 73, 725-743.

Whitman, B., & Accardo, P. (1993). The parent with mental retardation: Rights, responsibilities and issues. Journal of Social Work and Human Sexuality, 8, 123-136.

Contact

Dr Melinda Polimeni
Clinical Research Fellow, Project Co-ordinator Healthy Start

Phone (03) 8660 3516

Email Dr Melinda Polimeni

Website

www.healthystart.net.au

http://www.parentingrc.org.au

More information

More information on the Promising Practice Profiles can be found on the Communities and Families Clearinghouse Australia website.