First, let’s get a few things straight. Language! Language is important. It reflects attitudes and values—respect, or disrespect, ownership and control. It can also, if we’re careful, capture exactly what we mean. ‘Models of care’ is a common term in our sector, but care tends to be associated with minding children and minding people when they are sick or recuperating from illness. The phrase reflects a medical model of disability. ‘Models of service’ is also used, but support is a better term to reflect what disability agencies should be doing— supporting people to live the lives of their choosing. John O’Brien reflected this in his Framework for accomplishment manual (1989), where he identified the key functions of an organisation as supporting and protecting, and seeking out links to the community. So what principles can we draw on to develop a sound Model of Support? Are there any well-established and widely-accepted principles to guide us? There are constantly new buzzwords around, the latest flavours of the month, all clamouring for our attention. But in truth, the new catch phrases are often only developments or adaptations of concepts that have been around for many years, and it is these time-tested principles that I want to set out here as the basis for developing good supports (or ‘services’) to people with disabilities:
1. The least restrictive environment
The phrase ‘least restrictive environment’ was a key concept in the United States Public Law 94-142 passed in 1978 (almost 30 years ago!), the law that first established every child’s right to be educated in the least restrictive setting. An ordinary classroom, for example, is preferable to a special class, and a special class should only be used if it could be shown that the child could not cope with an ordinary classroom. Based on Figure 2, the child should move up the pyramid as far as possible, and only move down as far as absolutely necessary.
This principle applies equally to supports for adults. If a person can work in an ordinary workplace, then they should not be in a sheltered workplace. If they can live on their own with minimal support — for example, a support worker calling twice a week — then they should not be living in a six-person community house with 24-hour staffing. This is not to ignore the person’s social needs. If the person finds living on their own lonely, then it should be possible to share an apartment with a friend or two of their choosing, but with the same low level of support. If they need a place to catch up with their friends once or twice a week, then a drop-in centre with a pool table and coffee facilities may be all that is needed.
Sometimes strong support is needed when a person moves into a new environment, but after a few weeks or months, the support can be tapered off. A good example of this is the supported employment model, where a job coach may be involved in training on the job, maintaining productivity, ensuring the new worker is socially integrated into the new workplace. Over time, this support is lessened in a planned way to the point where the job coach may only drop in once a month to check that all is well.
More support than is necessary creates dependency. Research shows that in such circumstances the person’s competencies lessen as staff do tasks that the person is capable of doing for themselves. This is an important point for service providers and funders: over-supporting is not only wasteful of public funding, it has a negative impact on the person we are supporting. It creates learned dependency. This is not only true of institutions; it is equally true of community-based services. A common example is where someone moves from home into a much more restrictive regime in a community house where they are not allowed out after nine o’clock (we’re talking about adults here), where bed-times are fixed, and people aren’t allowed do household chores, or have a pet, or use a bicycle because of ‘health and safety’, even though they have largely looked after themselves at home for years. This de-skilling increases the likelihood of the person moving down, rather than up the pyramid of least restrictive environment.
The financial implications of all of this are obvious! Often the least restrictive environment may be a generic or community or private facility. So instead of leasing an industrial unit, paying for rent, heating, lighting, insurance, waste disposal, and security and buying plant and equipment, we allow Tesco or McDonalds to provide all of this while we rent a couple of offices down the town as a drop-in centre or base for non-work activities.
If I have been talking about the most able people we support in many of my examples, that is because these are the most obvious examples and they refer to the largest proportion of those we support. Less than one-in-five of those who use disability services have a severe or profound learning disability (Health Research Board, 2001). Too often we have used the extremes to justify the means.
Aspects of the principle of least restrictive environment have been reflected in later terms such as integration, community participation, sharing ordinary places (O’Brien, 1989), an ordinary life (King’s Fund, 1980), and social capital (CQL, 2005).
2. Positive approaches
The second principle underpinning support agencies is use of Positive Approaches. This marks a shift from the earlier deficit driven approach which focused on everything that was wrong with the person. Tests and assessments were designed to find and list the person’s deficits, not to identify their strengths, gifts, talents, interests and priorities. This negative focus encouraged negative language and attitudes towards people with disabilities and was a corollary of the medical model. It assumed people could be fixed, and when they weren’t fixed, the person was blamed—not the doctor, therapist or trainer. Within this tradition, countless hours might be spent on literacy and numeracy training—even on tying shoelaces! Because they were never fixed, people were never ready to move on. Some people attended ‘training centres’ for years on end, never graduating to a job!
The alternative approach was to identify all the things the person could do, or wanted to do, or was interested in. It favoured a functional approach to learning—the person was most likely to learn what they were interested in, things they needed or wanted to do. It recognised motivation as a key component in learning. It also recognised the importance of positive expectations, the belief that the person would succeed with the right help.
‘Capacity building’ was the phrase used when developing the competencies the person needed to lead the life of their choice. This approach challenged the traditional stereotypes of disability, the assumptions about lack of (dis-) ability. Capacity to develop is an assumption in all approaches to individual planning— that there are things the person can and wants to do, and with the right supports they will succeed. The alternative is a downward spiral, a world of monotonous sameness, a world of slow attrition, as loved ones die, activities are dropped, new staff who don’t know you arrive into your life, ‘health and safety’ rules out interesting activities, and you become increasingly frustrated.
Positive approaches not only assume the capacity to succeed, they also rule out negative interventions. Where staff find the person’s actions challenging, they react not by punishing the person, but by creating alternative, interesting environments and activities. They work hard at figuring out why the person is acting in this way, what the person is telling them through this behaviour, and they respond positively.
3. Full personhood
The history of disability services is littered with examples of degrading and inhuman treatment. Even in the past twenty years examples abound in Ireland and abroad— think of Our Lady’s Hospital in Cork (Frontline, Winter 1990), the asylum on the Greek island of Leros, or the orphanages in Rumania and Bulgaria.
After the treatment of Jews, homosexuals and people with disabilities in Nazi Germany, the UN issued its Universal Declaration of Human Rights in 1948, beginning ‘All human beings are born free and equal in dignity and rights’. Wolfensberger, in his 1969 paper for the President’s Committee, identified the many negative perceptions of people with learning difficulties—sub-human organisms, a menace to society, objects of merriment, ridicule or pity, a burden of charity. Agency staff commonly saw only the disability—‘Will you take out the wheelchairs, Mary?’—in a way that was deeply dehumanising. In particular, people’s adulthood was dismissed. Assessments emphasised ‘mental age’ in a way that undermined the person’s adult status: ‘He has the capacity of a 4-year old.’ Gardner’s work on multiple intelligences has broadened our view of capacity and potential, and many people with learning disabilities display varied intelligences, including strong emotional intelligence. The notion of people with learning disabilities as eternal children has prevented people being really listened to, being allowed to make decisions affecting their own lives, and in general speaking up for themselves.
The principle of full personhood has found expression in a number of developments in recent years including:
- the central role of people with disabilities in their own person-centred plan, where they decide who is invited to the meeting and they chair or co-chair the meeting;
- the development of workers’ committees and other consultative forums in adult centres, and the involvement of service users in the recruitment of staff;
- the growing self-advocacy movement (e.g. People First) which demands ‘nothing about us without us’.
A more fundamental shift has been the acknowledgement of personal rights, based on basic human rights such as the right to personal liberty (no restraint without fair procedures), right to private property (control over one’s own money), and the right to bodily integrity (informed consent to medical intervention), to name but a few. The International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities will be ratified by the UN before the end of this year. This rights-focus has shifted the discussion from whether to how—from whether people have the same fundamental rights as everyone else, to how we can support people in exercising their rights. The Law Reform Commission’s work on capacity and consent, and the amendment to the Comhairle Act establishing a formal advocacy service for people with disabilities, will move this forward in a substantial way.
The counter-flow has been the growing use of ‘health and safety’ to restrict and restrain people, rather than to develop practical risk management strategies which allow the dignity of risk; and the continuing denial of people’s sexuality.
4. A person-centred approach
Person-Centred Planning (PCP) has recently become something of a flavour of the month with statutory bodies, but its origins go back to the 1970s Individual Programme Plans (IPPs), and the work of John O’Brien, Beth Mount, Herb Lovett and others in the 1980s in the US. There are a variety of PCP systems, but they all have common ingredients including: a clear focus on the individual and their needs and priorities; a holistic view of the person’s life (not just what happens in the centre between 9 and 3); the support of family and staff in working on the person’s priorities; and a sense of working towards a worthwhile life for this person.
But when an agency adopts a person-centred approach, it involves more than simply having PCP meetings. It involves a complete shift away from the old mass management or group management techniques, towards providing supports to people ‘one person at a time’. We already have examples of supports that are provided in this one-person-at-a-time way:
- Supported employment: In the SE model, each person’s interests and capacities are explored and job sampling or work experience arranged, followed by skillful job matching and individual job coaching.
- Clinical services: Individual consultations take place with doctors and therapists; individual prescriptions are written and therapeutic interventions are individually tailored and implemented.
- Challenging behaviour: Where staff find a person’s behaviour difficult or challenging, individual supports are put in place including individual staff, individual activities and more personal space.
- Independent or supported living: Where a person lives independently, supports tend to be individual—a staff member calls in or meets up with them in their office; where the person has a personal assistant (PA) for some hours per week, they have an individualised service.
The implications of a person-centred approach for the management of an agency are clear. The agency needs to develop strong links with the local community to create a multitude of opportunities for the people they support (see Figure 1). Staff need to work in a flexible way to respond to individual needs and priorities. A close working partnership with families is essential. Above all, there needs to be a lot of listening to the person. The best example of a person-centred approach at present is the individual service planning being developed by Michael Kendrick and his colleagues with a number of Irish agencies including Cheshire Ireland and the Brothers of Charity, while the National Federation of Voluntary Bodies have recently produced an excellent discussion document on person-centred services.
In this article I have identified four cornerstones of agency development on which to build a solid support organisation—the principle of least restrictive environment, the exclusive use of positive approaches, the acknowledgement of full personhood, and the development of person-centred approaches. These key concepts have not blown in on the wind, but have been developed and refined over many years and in many settings. They have led us away from segregated institutions of mass management to mutual respect and regard; from creating dependency to fostering interdependence; and from community isolation to building social capital—mutual ties within our local communities which ensure support in times of need.