Ray, N. K., Rubenstein, H. & Russo , N.J.,

1994,

Reviewed by Dr Susan McGaw,
Cornwall Partnership (NHS) Trust.

Methodology

This article reviews eight programmes in New York State that provide parenting training and direct assistance to parents with learning disabilities. The New York State Commission on Quality of Care for the Mentally Disabled commissioned the authors to conduct the review. The investigation makes comparisons between the eight services and across the programmes that they provide to families. Each of the programmes evolved individually and differed in the services they provided to families. As a result some families received more intensive services than others, and some programmes provided a comprehensive support package that other families did not receive. Comparison across service provision was difficult to achieve in this review. Nevertheless, in the absence of large-scale studies and longitudinal research involving parents with learning disabilities, the study offers invaluable data regarding the multiple, complex needs of these families over time.

In particular, the review aims to identify effective working practices as well as deterrents to programme interventions, using client/service provider survey methodology. The review was based on evidence drawn from:

• two site visits to each of the eight programmes over a 2 year period.
• twenty-five home visits to families who received the programme for an average of 9 hours each week. The Commission conducted interviews with families and parenting aides/ volunteers (who worked with families). They collected interview and financial data using structured instruments.
• programme characteristics drawn from services provided to 41 of the 86 families (48%) who enrolled in the programmes.
• the eight programme directors who met at an initial group and mid-way through data collection for the review.
• staff members of the programmes, local preventive services and protective services who had involvement with families.

The authors were aware that their review was exploratory and investigative in its approach.

Critical appraisal

Comparability across the eight programmes was weak in terms of a common service delivery model. Each programme differed in its use of paid parenting aides or volunteers in the provision of home-based programmes. Programmes also differed as to service delivery, whether offered directly or indirectly, by coordinating referrals to other programmes and agencies. Funding issues also determined the quality and intensity of service delivery, thus resulting in variation between programmes. The parenting programmes differed significantly in their referral routes and operational admission criteria.

The sample of parents changed during the review and follow-up as one of the eight programmes closed down operations and some families disengaged with the programme or refused to co-operate with the Commission staff.

Despite these differences, this programme review produced useful data based on a substantial sample size (N = 41 families, N = 66 children who lived at home). Similar difficulties were reported and conclusions drawn by all eight agencies regarding service provision for parents with learning disabilities.

Key findings

• Meeting the needs of this growing population of families will challenge the conventional structure of traditional parenting support and training programmes.
• The experience of the programmes indicate that most families require relatively intensive services, over a long period of time, most likely spanning the entire childhood and adolescence of their children.
• Children in these families need extensive early intervention services as they enter school and are expected to demonstrate social and academic skills which their parents may not have.
• The percentage of children with identified disabilities increased considerably from approximately one-third of the children under 3 years of age to approximately two-thirds of children 3 years and older.
• Parental disengagement with services was problematic and appeared to result from threats to the autonomy in family decision-making, poor staff attitudes and skills, and general life-stressors.
• Many parents were suspicious of social services and staff from service programmes, especially when they had childhood experiences where there had been family involvement with the statutory agencies.
• The ad hoc procedures in place for assessing risks of child abuse and neglect and in evaluating the families' progress in providing for the children's safety and well-being were clearly inadequate across the 8 programmes.

Social work practice implications

This study offers a wealth of demographic and descriptive information that is a useful guide to practice, especially with regard to such a heterogeneous parent population. Clear messages come from this research, which many, subsequent studies have failed to convey so convincingly:

• Family support needs to be varied, relatively intensive, and available over a long period of time.
• Staff that work with parents with learning disabilities need to be selected on the basis of their positive personal attitudes, sensitivities and appropriate teaching skills.
• Programmes need to be flexible and accommodating of the family's choice to drop out of the programmes whilst attempting to minimize disengagement.
• Standardised risk and progress assessment protocols are needed which incorporate parental involvement.

Policy implications

Whilst methodological weaknesses were evident in this study, the review was useful in highlighting commonalities across programmes in terms of service delivery, demographic data and outcomes. There were some useful findings which the Commission highlighted with policymakers from this exploratory investigation:

• Long-term studies need to be undertaken to better understand their needs, strengths and difficulties as children grow from infancy through childhood to adolescence in these families.
• Professional training is needed for staff at all levels of service provision working with families who have learning disabilities, as part of core training and continuing professional development.
• Assessment models and tools need to be holistic, structured and sensitive to the needs of families who have special needs.
• Long-term planning is required in terms of service provision and funding for families whose long-term needs may remain throughout the childhood of their children.