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Planning for the Future of Adults with Intellectual Disabilities Living with their Parents

Background and aims

A Development Project

Many families of individuals with intellectual disabilities provide lifelong family-based care. With the increase in life expectancy of intellectually disabled individuals, it will no longer be possible for parents to care for their children until they die. Growing old, future planning is particularly important to these families. Research indicates that many families do not engage in concrete future provisions (Heller & Factor 1993).

On the basis of estimates made in other countries, it can be assumed that there are many intellectually disabled adults living with their already aged parents in Switzerland. This leads to worry about finding suitable good-quality accommodation when they can no longer undertake the necessary support duties. Housing institutions fear that they will have to accommodate an increased number of these older persons with intellecutal disabilities in the future without having exact figures to plan from.

It is apparent that parents who would like to organise a permanent transition for their children to live outside the family circle are faced with long waiting lists for suitable community-based living accommodation. Support services for the future planning and creation of suitable accommodation possibilities following the death of the affected individual's parents are widely lacking.

Methods

The expert survey identified support options available in German-speaking Switzerland for these families to plan their future. The findings from the expert survey were included when developing suitable provision for future planning by families.

The potential intervention programmes for these families were analysed and evaluated. There was a clear indication that the project aims would be well served by translating and adapting the programme devised by DeBrine et al. (2009) for the Rehabilitation Research and Training Center on Aging with Developmental Disabilities (RRTCADD), as this course targets all family members.

The translated and amended programme was implemented and evaluated in a pilot study with 8 families at the Hochschule für Heilpädagogik (HfH) in Zurich.

Drawing on experience from the pilot, the course was thoroughly revised. In 2012/13 the course was offered in several cantons by training providers (clubs, insieme et al) working in conjunction with the HfH. The HfH supported these organisations and reviewed the efficacy of their courses in an 18-month comparative intervention study covering 47 families. Course efficacy is measured by the rate of take-up by families and the progress they achieve.

A survey was conducted to obtain data on the life situation of these families and their use of the support offered by organisations who took part in the public information event. 72 families were surveyed for this purpose.

Results

Evaluation demonstrates that the course achieves results. In particular, it encourages families to involve the person with the disability more in plans for the future. The carers who attended the course reported afterwards that their burden of care had diminished. They had a little more knowledge of the options available for family support and were making more use of these. The families also reported that their sons and daughters with disabilities were making greater use of their opportunities to decide. Interviews with the sons and daughters showed that after the course they had substantially more knowledge about leisure and about their ability to make decisions.

Assessments of the course are positive, both among parents and among their sons and daughters with a disability: the course helps them to plan by structuring the planning and stimulating discussion within the family. Exchange with other parents was very important to these families. The parents also assessed the course as good for their sons and daughters because they had been supported in contributing their opinion, even on issues that frightened them. The course managers earned much praise for their work, and the parents expressed a hope that the course would be offered again. The surveys demonstrate that parents caring at home for adult sons and daughters need easier ways to access information about support and assistance with planning and also more flexible provision of assistance to alleviate their burden. Parental activities centre on the desire to offer their children a decent life. Families would like to see needs-oriented provision that enables their sons and daughters to find their own personal, self-determined way to tackle housing, working and leisure.

 

Building course provision:

Following the intervention study, there are plans to build course provision for different target groups.

Facts

Duration
01/2010-04/2014
No.
3_8

Project Management

Kontakt

Forschung und Entwicklung
Tel: +41 44 317 11 81

zfe[at]hfh.ch zfe

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