What impact can a child with a severe disability have on a family?
A child with a severe disability invariably leads to great personal and financial stress in the home.^4-6 While some children have a need for intensive medical and therapeutic support or continuous care, others have long-term behavioural patterns that include regular violence to themselves or others, chewing or breaking furniture and house fittings, screeching or being noisy at all hours, ingesting inedibles, smearing faeces, or absconding. Despite therapeutic or behavioural interventions there may be very slow development, or regression.⁷

While "in-home support" will cater for the needs and preferences of many parents, the sometimes severe restrictions on the family's life choices will not be acceptable to all, particularly if the burden of care is offloaded onto other family members. Can society regard a solution as satisfactory when chronic stress is hidden in the private domain? For example, a Queensland agency which implemented faithfully the total movement of children with high medical and physical support needs back into birth family settings after a period of institutionalisation reported that the outcome was often "harsh".⁸ While families were reported happy to have their children home, the care required was stressful, demanding, labour-intensive, constant, costly, tiring and mostly unacknowledged.

Other reported impacts on the family included:⁸

• Very little social life;
• Reduced time and energy for other family members;
• Expectations on other children to share physical and emotional caring;
• Restrictions on types of family activities (eg, camping);
• Very little time off and few holidays;
• Reduced career opportunities;
• Working part rather than full time or not being able to work at all;
• Coping alone when carers were sick or on leave;
• Extra demands of school holidays;
• Physical and emotional tiredness; and
• Feelings of low self esteem and worth.

Instead of an exclusive focus on what is believed best for the child, there needs to be an acknowledgement of the wider impact on the family. An analysis of the impact of deinstitutionalisation on families in the United States pointed out that the disabled child's right "to live in the least restrictive environment" is only a half-statement of the issue:
The right to live in the least restrictive environment should apply to family members as well as to handicapped individuals. Thus [the] concept of least restriction should be considered in light of the needs of each family member. Placing many severely handicapped children and youth in the least restrictive environment of their families results in their family being required to live in a highly restrictive manner.⁹

Additionally, the 1993 Australian Bureau of Statistics survey of carers found that, while many resident carers of people with severe or profound handicaps have been brought closer to the person being cared for, a quarter feel that this role has put a greater strain on the relationship.¹ The presumption that family care is superior care may not be true: there is clear potential for destructive and perhaps abusive relationships.

More financial and other support for the family, while helpful, is not always a complete solution. A NSW survey of 171 families of children under seven years with disabilities and high support needs found that 25% had either sought alternative residential care for their child or considered it might become necessary, particularly if the mother, as main carer, was unable to continue, or the child became larger and harder to manage.¹⁰ The degree to which these circumstances can be avoided by more and better services may be limited. For the 6% who had already sought care, family survival -- physically, socially and emotionally -- was at stake.

However, the push from Australian governments to keep the child at home is strong, and out-of-home placement is usually difficult to access. Because urgent cases move to the top of the queue, anecdotal reports are that a cat-and-mouse game ensues as parents are required to demonstrate their trauma. The game-playing to access accommodation services may also involve giving up the child to the State as a ward, manufacturing a situation of homelessness, or following the child protection route (ie, abuse or threatened abuse of the child).

Should foster care be the only alternative to living at home?
In the past, foster care arrangements were generally admitted to be difficult to establish and maintain for children with autism, severe disabilities and certain types of challenging behaviour.¹¹ Is the current enthusiasm for foster care evidence-based or cost-based? Evidence cited to support foster care as the universal solution^12-16 generally comprises case reports of its success in sustaining arrangements rather than achieving measured improvements for the child. In fact, one of the few longitudinal studies (a three-year study of 148 children in the United States) suggested that the developmental opportunities claimed for specialised foster care were unlikely to be realised for children at the lower levels of intellectual functioning.¹⁷ Furthermore, low levels of attachment behaviour, often associated with severe intellectual disability or the autistic spectrum diagnosis, are likely to jeopardise foster care.¹⁷ Yet, these children are generally the target group for foster care programs in Australia.

Lower cost to government is also cited as a major advantage of substitute family care over rostered staff arrangements. However, children with high support needs may be expensive to support irrespective of setting. In the Victorian alternative care program (Family Options), the level of annual caregiver payments starts at $4160 and rises to between $10 886 and $22 144 for children with very high needs, with additional discretionary payments of up to $10 000 per annum, and possibly extra money for home modifications.¹⁸ This compares to a benchmark of $47 000 in annual operating costs to support a high-needs person in a small group home (Ms Diana Heggie, General Manager, Operations and Residential Services Development, Spastic Society of Victoria, personal communication). These financial disbursement policies also lead to tensions. Birth families often report that financial support available to foster carers to look after severely disabled children is not available to their parents to do the same. Providers report that clients who may be able to avoid a crisis if supported modestly at an earlier stage end up as genuine emergencies.

In practice, foster care may be distorted to resemble a rostered staff situation to maintain the placement, with a large number of volunteer carers and parenting shared between different families at different sites. The operational needs of care for some children are going to involve many rostered carers however the model is labelled.

The view of many parents, advocacy groups, academics, foster agencies and child welfare practitioners is that the pendulum has swung too far in reducing access to other options, such as group homes (see Box 2).

Should we retain non-family options?
The disfavour towards non-family models of residential care comes from the days when children with disabilities lived in large institutions, and their families were encouraged to forget them. Institutions are well on the way out in Australia, and planners adopt a strong "gatekeeping" role to minimise any divergence from the two approved models -- birth or substitute family.

A 1993 US study found that families who placed their child in a residential facility were much more likely to continue a high level of contact with their child than did previous generations, including visits to the residential facility, visits by the child to the family home, phone calls, and involvement in the child's individualised habilitation plan.²⁰ The authors hypothesised that, because families are no longer likely to place their children at birth, they develop attachment, which buffers against non-involvement during subsequent placement. Tangible benefits for other family members occurred after placement in a residential facility, including better relationships with other children, more normal social life and more employment and educational opportunities.^20,21

While today's parents want community living for their children with disabilities, those seeking out-of-home placement may see a group home with rostered staff as an attractive option. It has the potential to provide long-term security, trained staff, and greater authority to birth parents to influence decisions about the child's welfare than does foster care. Rostered staff carers can resist "burnout", and often develop a familiarity and attachment to the child, even when it is not strongly returned.

A situation in which the child lives in a rostered staff home but has regular visits to and from the birth family, which is also heavily involved in the child's educational and medical issues, behavioural plans, and personal development, is desired by some parents and already exists in Australia, albeit in a policy "twilight zone". This approach can allow important objectives of permanency planning to be achieved, if high levels of family involvement are encouraged.

Permanency planning in Australia needs to drop slogans appropriate to a different time and accommodate subtlety, an openness to evolution and changing values and preferences.

Incorporating "best practice" into policy
With the current redevelopment of accommodation services in most Australian States, a participatory and transparent evaluation process is needed. Planners and providers should continuously share the results of the implementation process with the families they serve, other professionals and service providers. Although the policy of integrating people with disabilities into the community is widely supported, there is still little knowledge of how it can be achieved when disabilities are severe. Independent evaluations of successful foster care and rostered staff programs are needed, with results made available to all. These should examine the priorities not just of planners (minimal placement breakdowns, placement avoidance, and service cost reduction), but also of families (family satisfaction, strengthening of birth family links, and quality of care).

It is doubtful whether this will happen without changed reporting arrangements, because of political sensitivities and organisational rivalries derived from the contracting-out process. A recent House of Representatives Committee heard many negative stories about contracting-out of welfare services, including reduced sharing of professional knowledge, lack of contract management expertise, blurred lines of accountability, contract clauses which prohibit public comment, and unwieldy and inconsistent performance standards.²² It recommended that the responsibility for setting standards and measuring performance of the welfare sector be assumed by the Australian Institute of Health and Welfare (AIHW, a statutory authority established in 1987 as an independent health and welfare statistics and information agency). The committee also recommended service-specific advisory committees to facilitate the effective flow of information from States to the AIHW. The technical expertise and independence which the AIHW brings to the evaluation process can only help in establishing a firmer knowledge base for policy development in this important and under-researched area.  

1. Australian Institute of Health and Welfare. Australia's welfare 1997. Canberra: AGPS, 1997: 206, 329, 307.
2. Taylor SJ, Lakin KC, Hill BK. Permanency planning for children and youth: out of home placement decisions. Except Child 1989; 55: 541-549.
3. Center for Human Policy (Syracuse University). Introducing a statement in support of families and their children. <http://soeweb.syr.edu/thechp/fsbintro.htm> Sighted 3 Nov 1998.
4. Casey S. Barriers to women returning to the paid workforce when they have a child with a disability. Melbourne: Association For Children With A Disability, 1998.
5. Birenbaum A, Cohen HJ. On the importance of helping families: policy implications from a national study. Ment Retard 1993; 31: 67-74.
6. Schofield HL, Murphy B, Nankervis J, et al. Family carers: women and men, adult offspring, partners, and parents. J Fam Stud 1997; 3: 149-168.
7. Moore TG. Promoting the healthy functioning of young children with developmental disabilities, and their families. Fam Matters 1996; 44: 20-25.
8. Fleming R. Post-institutionalisation -- policy and services. Proceedings of the Australian Cerebral Palsy Association National Conference, Brisbane, 1998: 97-99.
9. Turnbull AP, Brotherson MJ, Summers JA. The impact of deinstitutionalisation on families: a family systems approach. Paper presented at the Working Conference on Deinstitutionalization and the Education of Handicapped Children. Minneapolis, 1982.
10. Llewellyn G, Dunn P, Fante M, et al. Families with young children with disabilities and high support needs. Sydney: University Of Sydney Family Support and Services Project, 1996: 3.
11. Department of Human Services (Victoria). Family options policies and procedures manual interim guidelines. Melbourne: DHS, 1997.
12. Macaskill C. It's a bonus. Adoption fostering (Barnado's United Kingdom) 1988; 12: 24-28.
13. Elliot B, Young M. Melanie's program evaluation final report. Sydney: Centacare Catholic Community Services, 1993.
14. Provencale G. Characteristics of a successful community living program and support service. Melbourne: Yungaburra Foundation, 1988.
15. Shoultz B, O'Connor S, Hulgin K, Newman P. Permanency planning in Michigan: from philosophy to reality. Syracuse, NY: Center on Human Policy, Syracuse University, 1994.
16. Center on Human Policy, Syracuse University. Families for all children. <http://soeweb.syr.edu/thechp/bullfams.htm#tab> Sighted 3 Nov 1998.
17. Borthwick-Duffy S, Widaman K, Little TD, Eyman RK. Foster family care for persons with mental retardation. Washington DC: American Association for Mental Retardation 1992. Monograph 17.
18. Napthine D. Letter to the Association for Children with a Disability from the Minister for Youth and Community Services, Victoria, 5 September 1997.
19. Kelly F, Clark J, McEntee P, Dench S. Factors contributing to the relinquishment of children with intellectual disability. Social policy reports and proceedings no. 123. Sydney: Social Policy Research Centre, University of New South Wales, 1995: 77-87.
20. Blacher J, Baker BL. Family involvement in residential treatment of children with retardation: is there evidence of detachment? J Child Psychol Psychiatry 1994; 35: 505-520.
21. Blacher J. Placement and its consequences for families of children who have mental retardation. In: Blacher J , editor. When there's no place like home: options for children living apart from their natural families. Baltimore: Paul H Brookes, 1994: 213-243.
22. House of Representatives Standing Committee on Family and Community Affairs. What price competition? A report on the competitive tendering of welfare service delivery. Canberra: AGPS, 1998.

Reprints: Mr K J Bain, 9 Caroline Street, East Hawthorn, VIC 3123.
Email: kevinbainATyahoo.com.au

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