Parents with intellectual disability: Service delivery and professional practice

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Parents with intellectual disability Service
delivery and professional practice

• Robyn Mildon
• November 2005

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• Intellectual disability does not cause parental
  inadequacy, does not lead to child neglect and
  abuse
• Feldman (1994)
• Tymchuk (1990)

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American Association of Mental Retardation (AAMR)

• Significantly sub-average intellectual
  functioning must exist concurrently with
  limitations in two of the following skill areas
• communication
• self care
• home living
• social skills
• community use
• self-direction
• health and safety
• functional academics
• leisure work

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Instructional perspective (Dever, 1990)

• Mental retardation refers to the need for
  specific training of skills that most people
  acquire incidentally and that enable individuals
  to live in the community without supervision.
  (p.149)

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• Places emphasis on the development of
  competencies
• Places responsibility of skill acquisition on
  those who teach, not on learner
• Provides clear guide for action in that it
  specifies what must be taught, that is, the
  skills that are required to live without
  supervision

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Role of values, beliefs and expectations

• Shift from beliefs of incompetence to a
  recognition of competencies will shift focus away
  from the limitations associated with a disability
  and towards the individuals potential
  competencies and resources for learning.

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• Parents with intellectual disability could be
  characterised by the disadvantage they face
  rather then the disability

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Disadvantage

• Poverty, unemployment, substandard housing, high
  stress levels, a history of maltreatment,
  depression and poor-self esteem
• Vulnerable to experiencing poor health
• Little exposure to positive parenting role models
• Difficulty sourcing, understanding and applying
  information
• Isolation and little social support
• Little access to services and supports that
  accommodate their learning needs

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Effective support and skill development

• With support and education, matched to their
  learning needs, parents with intellectual
  disability can learn to provide effective
  parenting for their children.

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Research what can be done

• Basic infant and child care skills (Feldman and
  colleagues)
• Parent child interactions (Feldman and
  colleagues)
• Health, home safety and emergencies (Llewellyn
  and colleagues)
• Child behaviour management
• Problem solving

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What can we learn

• Engagement
• Assessment
• Intervention

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Hurdles to engagement

• Negative effects of system coercion
• Frequent criticism and demands for change
• Chaotic and unstable living environments
• Difficult to articulate goals and aspirations for
  the future
• Client blaming scenario

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Promoting engagement

• Establish genuinely collaborative relationship
• Focus attention on client strengths
• Establish motivational conditions for achieving
  goals

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Assessment

• Extreme caution given limitation to current
  assessments and potential for bias
• Focus attention on developing assessment
  processes that inform and lead to effective
  interventions

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Assessment

• Take a functional contextual approach to
  assessment
• Increase the emphasis on the use of assessment
  tools that directly measure aspects of parenting
  behaviour and have sound psychometric properties
• Increase the emphasis on the use of direct
  observation of parent and child behaviour in the
  familys environment
• Increase use of task analysis approaches

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Support AND Skill development

• Stand alone home-based or group work does not
  fully address the needs of this group (McGaw et
  al., 2002)
• Essential elements of effective parent education
  programs well documented

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Critical elements of parenting skill development
programs

• Teaching and learning needs to happen in the
  setting in which the skills are needed
• Focus on acquiring and performing actual skills
• provide parents with many opportunities to
  succeed
• Instructional strategies
• Instructional materials and aides
• Flexible and long-term programs that actively
  plan for generalisation and maintenance

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Support AND Skill development

• Parents with intellectual disability experience
  many of circumstances and may act as barriers to
  successful implementation of the parenting
  skills.
• How do we deliver these programs under the best
  possible conditions?

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Supportive contextual interventions

• Planned, ecological, family-focused methods that
  help families successfully implement
  interventions with their child and contribute to
  an improved quality of life for the child and
  family (Singer et al., 2002)

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Status quo against best practice

• We dont know whether current practice across the
  full range of service settings reflects best
  practice
• We do know that many practitioners feel poorly
  prepared to meet the needs of this group
• Tendency for workers to resort to less effective
  intervention strategies when dealing with
  challenging situations

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Barriers to the adoption of best practice?

• Structural barriers
• Attitudes

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• Interventions that strengthen and improve the
  quality of parent-child relationships
• Parenting interventions have demonstrated
  efficacy with parents across a range of parenting
  domains
• Most effective interventions utilise teaching
  technologies that match the parents specific
  learning needs

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• Most effective parenting interventions are
  embedded in a broader eco-behavioral perspective
• Our most effective interventions are not
  necessarily those being used in the community
• Need for more research and systematic approach to
  evaluating programs

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