What we know:

  • Services are most supportive when a collaborative relationship is adopted between therapists and parents who, as equal partners, identify the family's needs and resources and work together in developing a service structure and home program routine that fits into daily family life
  • Early intervention services operate in significantly different ways when working with parents with disabilities compared with other parents:
    * More time is needed to prepare for, work with and follow up parents with disabilities
    * Different methods of service delivery are employed, for example, in its location (the parent's home), the amount of support given and the style (format and content) of intervention
    * Workers need to coordinate and collaborate with other agencies to a greater extent
    * Higher parent-staff ratios are employed; the more experienced staff are allocated to work with these parents and/or service directors are more involved at a supervisory and a practical level
    * Additional/different resources are bought, modified or developed to adequately support parents with disabilities eg., pictorial information, videos
  • Given resource constraints and the slower progress made with parents with disabilities, intervention goals may need to be fewer, less complex, and more focused on the parent
  • In being primarily a 'child related' service, workers' knowledge of 'adult-related' services is not always sufficient to adequately meet parent needs
  • When therapists consider the occupational role balance of the family (in addition to that of the child), and were friendly and sensitive to family needs and priorities, services tend to be structured to meet the personal (eg., emotional support) and practical needs (eg., home visits, sibling involvement) of individual families
  • Most parents with a child with a disability are compelled to adjust their personal and family routines in order to obtain, maintain and monitor early intervention services
  • Service providers generally do not adequately involve families in the development or implementation of therapy plans and services
  • Early intervention services for children and families with special needs tend to be applied in a team context whereby all members contribute to an individualized plan for the child, with one or two team members being designated as primary agents for intervention. Team members do not however, always work together in a co-ordinated, co-operative and goal-directed fashion
  • Early intervention staff working with parents with disabilities can experience significant strain, particularly when they consider themselves to lack expert skills and knowledge about how to work effectively with these parents
  • Operating under inadequate staffing and resource levels, workers face a tension in trying to empower parents whilst also meeting the needs of the children
  • The focus of occupational therapy services has not shifted from a traditional child-centred approach - where therapy focuses on bringing about changes in the child as distinct from the family - to a more family centred one. This is contrary to expressed preferences by parents of children with a disability that service provision be family centred

What we can do:

  • Adopt a family-centred practice that reflects on and re-orients to the expressed needs of families eg., work with other professions and with families on common functional goals; provide relaxed, friendly support to family members as individuals, not exclusively in relation to the child with a disability; foster family involvement in services, with particular emphasis on sibling participation
  • Advocate for and access early intervention training programs that include information and skills training specific to the support needs of parents, including parents with disabilities
  • Given that it is unlikely that referral to an early intervention service will occur before the child is identified as having a developmental delay, early intervention services are encouraged to consult routinely with mainstream child agencies about families where children are potentially at risk of delay so as to increase preventive support to parent and child and help avoid delayed or late referrals
  • Individual early intervention team members need to continually assess and reassess their position in the team, whilst the team as a whole actively seeks to review the effectiveness of its functioning on an ongoing basis. Moreover, parents need to be offered a variety of options so that they can determine their level of involvement appropriate to their own and their family's needs. Parent wishes, abilities and available time are all factors which need to be taken into account

Want to know more? Check out these publications:

Llewellyn, G., Thompson, K. & Proctor, A. (1999) Early intervention services and parents with disabilities. International Journal of Practical Approaches to Disability, 23(1), 3 - 8.

Thompson, K. (1998). Early intervention services in daily family life: Mothers' perceptions of "ideal" versus "actual' service provision. Occupational Therapy International, 5(3), 206 - 221.

Maple, G. (1987). Early intervention: Some issues in co-operative team work. Australian Occupational Therapy Journal, 34(4), 145 - 151.