What should one expect housing for adults with learning disabilities to achieve?

by David Felce, Professor of Disability Studies, Welsh Centre for Learning Disabilities, School of Medicine, Cardiff University

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Questions to ask housing providers

In 2006, there were 25,518 people recorded on the Irish National Intellectual Disability Database (Barron and Kelly 2006). This is equivalent to an average of 651 people in every area of 100,000 total population.

There were 8808 children and teenagers aged 0-19 years, a little over a third of the total, and 16,710 adults 20 years or over, a little under two-thirds of the total. The great majority (95%) of children and teenagers lived in a private home with their natural, adoptive or foster parent(s), sibling(s) or other relative(s). So did 47% of adults 20 years or over: a total of 7863 people. Almost the same number of similarly-aged adults (7865, also 47%) lived in some form of residential service, while 855 (4%) lived independently or semi-independently. The proportion of people living in residential services rises with age. Only about 4% of 0-19 year-olds lived in residential services, compared to 27% of 20-34 year-olds, 55% of 35-54 year-olds and 75% of those aged 55 years or over-

There are a considerable number of parents and other family members who are, therefore, interested in the quality of supported accommodation provided for adults with learning disabilities, either because their family member is already living in such an arrangement or is likely to do in the future. What can they expect; what standards have they a right to demand? It is well known that parents typically continue active parental responsibilities far longer for their adult offspring with learning disabilities than other parents generally do. Partly, this is due to the fact that alternative out-of-family accommodation is expensive to provide and effectively rationed. But it is also partly because parents want to do the best for those they love and do not necessarily trust alternative provision to be good enough. So, what can they expect; what standards have they a right to demand?

Thinking about outcome standards

A number of perspectives have influenced thinking about how to define the outcomes for people with learning disabilities, which service supports should be directed towards achieving. These include:
1 Intuitive comparison to people without learning disabilities (e.g., in the notion of leading an ordinary life)

2 More formal comparison through a conceptual framework (e.g., normalisation, social role valorisation, or quality of life)

3 Articulation of fundamental human rights (e.g., as in the UN Convention on the Rights of People with Disabilities)

4 Individualisation (e.g., preferred outcomes should be personally determined). These are not mutually exclusive. Most obviously, a reasonable degree of individual preference and self-determination may be included within intuitive comparison to the lifestyles of other citizens. It may also be included in a formal conceptual framework, and in a statement of basic rights.

It has been common since the 1980s for service-providing agencies to develop mission statements by appealing to the notion of an ordinary life and the service accomplishment framework which emerged from normalisation or social role valorisation. A number of outcomes were highlighted:

  • being part of a community (community presence)
  • having a network of relationships involving family, friends, acquaintances, colleagues, community amenities and interest groups (community participation)
  • having continuity in relationships (continuity)
  • having opportunities to develop experience and competence (competence)
  • having choices and control over life (self-determination)
  • being given status and respect (rights)
  • being treated as an individual (individualisation). More recently, appeal has also been made to the notion of quality of life and work has been done to reach international consensus on how to define the quality of life construct (e.g., Felce 1997; Schalock et al 2002).

An important principle in both quality of life writing and in statements of basic human rights is that specific sections of the community should not be discriminated against and expected to experience a generally inferior life or life conditions which sink below the minimum expected in a decent society. The most recent authoritative articulation of rights is to be found in the UN Convention on the Rights of Persons with Disabilities (United Nations 2006), Table 1 illustrates the overlap in these perspectives. There are differences, most obviously in the more restricted scope of the Service Accomplishment Framework. Nevertheless, there is more agreement than difference.

Overlap between different outcome perspectives

Service Accomplishment FrameworkQuality of Life DimensionsUN Convention on the Rights of People with Disabilities
Physical wellbeing:
(Health, Safety, Fitness)
Right to Life (Article 10)
Freedom from torture/degrading treatment exploitation,
violence, abuse (Articles 15/16)
Right to Health (Article 25)
Community presence
(Wealth, Income, Housing, Tenure)
Material wellbeing communications & services (Article 9 Privacy, Neighbourhood, Transport)Access to the physical environment, transport, information, Privacy (Article 22)
Adequate standard of living & social protection (Article 28)
Community participation ContinuitySocial wellbeing: (Interpersonal Relationships Community Involvement)Respect for home & the family (Article 23)
Being included in the community Article 19)
Competence
Self-determination
Productive wellbeing:
(Personal Development, Independence, Choices, Self-Determination, Occupation)
Education (Article 24)
Habilitation & rehabilitation (Article 26)
Choices, Self-Determination, Occupation) Living independently (Article 19)
Personal mobility (Article 20)
Work & employment (Article 27)
Participation in cultural life, recreation, leisure & sport (Article 30)
IndividualisationEmotional wellbeing:
(Happiness, mental health,
freedom from stress, self-identity,
self-esteem)
Protecting the integrity of the person (Article 17)
Rights:
(Status and respect)
Civic wellbeing/Rights:
(Protection under the law, participation in political and public life, state of the nation)
Equality & non-discrimination (both genders, all ages) (Articles 5-7)
Equal recognition before the law (Article 12)
Access to justice (Article 13)
Liberty & security of person (Article 14)
Liberty of movement & nationality (Article 18)
Freedom of expression (Article 21)
Participation in political & public life (Article 29)
The importance of the quality of housing and support provided

The nature of the housing and support arrangements provided to adults with learning disabilities, who depend on service support, has an important impact on many of the outcomes highlighted in Table1. What follows is a list of questions for which I think families and advocates could expect service providers to have good answers. High expectations and widespread family and advocate pressure have the potential to drive up standards. If services have not done the kinds of things set out, families and advocates have a right to ask ‘why not?’

General Outcome Orientation

(a) Does the service have an operational policy/mission statement which clearly sets out a comprehensive range of relevant outcomes to be achieved for service users?

(b) Has the service considered how the housing and support arrangements made relate to the outcome orientation (e.g., if the aim is to develop independence, is the high level of staffing necessary)?

(c) Has the service defined operational procedures/working methods which relate to the outcome orientation (e.g., if the aim is to teach people new skills, what methods are staff to use to do this)?

(d) Is the operational policy/mission statement communicated to staff?

(e) Are staff trained in operational procedures/working methods and their competency monitored and appraised?

Physical wellbeing

(a) Personal care: Has the service set out standards and a code of practice for intimate personal care?

(b) Diet and exercise: Does the service set out recognised standards for healthy living (e.g., healthy eating, adequate exercise)? Does it meet standards in its own practice (e.g., are people offered a balanced diet or the opportunity to undertake sufficient moderate to vigorous activity)?

(c) Safety: Were environmental considerations taken into account in selecting the location/property (e.g., non-deprived residential area, off main road, good pavements, lighting etc.)? Is there adequate attention given to environmental upkeep and house security?

(d) Health: Is there a proactive review of health at least annually involving trained medical and nursing personnel? Are health issues made an important part of the individual’s Person-centred plan?

Material wellbeing

(a) Housing quality: Has the appearance of a typical property (e.g., house, flat etc.) and a home fit for purpose been achieved? Is it:

  • part of the stock of local accommodation (which has been or could conceivably be the home of members of the general population)?
  • run down or in a poor housing neighbourhood? . of typical appearance (i.e., blends with neighbouring properties)?
  • of sufficient size (e.g., bedroom per person) with a good garden?
  • matched to service-user characteristics/needs (e.g., ground floor accommodation, access, width of doorways etc. for wheelchair users, detached property for people with behaviour which would disturb neighbours)?
  • sensitively altered so that building adaptations suit the character of the neighbourhood?
  • well-maintained (building and garden well maintained, good decor etc.)?

(b) Household group: Has personal choice over where and with whom to live been facilitated?

(c) Tenure: Do the provision arrangements separate the provision of housing from the provision of support? Is security of tenure provided through a self-purchase or tenancy arrangement, so that the individual has the right to remain in the home should he or she wish to do so?

(d) Privacy: Does the individual have their own room/personal space? Is respect for privacy inculcated among staff and visitors?

(e) Possessions: Does furnishing reflect individual choice and also good design/comfort standards? Has the service done enough to prevent appearance, design and comfort standards being sacrificed to fire and environmental health regulations, while also achieving sensible safeguards? Are ‘domestic range’ appliances used (as opposed to industrial models)? Does the service make an adequate response to the assumption that service users have an aesthetic appreciation even if they cannot express it (i.e., there is normative attention to non-functional decorative objects such as pictures, pottery, mirrors, photographs)? Is personal choice in these matters facilitated?

(f) Neighbourhood quality: Is the property in a residential area? Is it a desirable neighbourhood (i.e., not deprived)? Does the character of the neighbourhood match the service user age group (i.e., avoiding placing older adults in an estate dominated by young married couples and those with very young children)? Is personal choice over where to live facilitated? Has the area a low to reasonable representation of service settings (i.e., over-concentration/service ghetto avoided)?

(g) Access to amenities: Is there reasonable proximity to shops, amenities and other forms of social capital?

(h) Access to transport: Are local and regional transport links available for service users to access amenities conveniently and for family members and friends to access the property?

(i) Access to communications and information systems: Are television, radio, telephone and internet access provided?

Social wellbeing

(a) Relationships within the household: Has personal choice over housemates been facilitated? Has group compatibility been considered (e.g., constrained age range, broadly similar level of independence/need for support, grouping by diagnosis or behavioural characteristics avoided, such as, all people with profound and multiple disabilities, all people with challenging behaviour)?

(b) Contact with family and friends: Has the importance of proximity and ease of travel been taken into account? Does person-centred planning involve family and friends? Has consideration been given to establishing circles of support? Have links been made and emphasis given to establishing participation in community activities which are conducive to developing social relationships?

(c) Community involvement: Has the importance of proximity to a wide range of amenities been taken into account? Have links been made and emphasis given to establishing participation in community activities? Have staff been recruited from the locality wherever possible to increase connections to the community?

(d) Community acceptance and support: Have efforts been made to maintain good relations with immediate neighbours (e.g., upkeep of appearance of the property, shared fences etc., care over staff parking, general good neighbourliness)? Has care been taken to maximise contribution to the community (e.g., through spending household budget in local businesses, civic activities etc.)?

Productive wellbeing

(a) Independent living/living autonomously with support: Has staffing been well matched to people’s support needs (i.e., achieving the balance between over-protection and too little support)? Is the provision of staff support flexible (i.e., staff support is available when it is needed and not at other times)? Is there good use of assistive technology and communication and memory aides? Do staff job descriptions emphasise their support role (as opposed to describing a caring role and a role to run the home like an hotel)? Are staff trained in how to give people with substantial learning disabilities effective support as and when needed (e.g., active support – see http://www.arcuk.org.uk/wales/999095/en/active+support.html)

(b) Developing skills in personal care, running a home, leisure and social activities: Is the identification of important areas for learning made an important part of the individual’s Person-centred plan? Are there established methods for assessing current skill levels, identifying next steps and generating teaching programmes? Are staff trained how to teach effectively?

(c) Exercising choice: Are individuals involved in the Person-centred planning decisions which affect major life changes (e.g., where to live) and other more immediate goals/decisions (e.g., what community activities to do)? How well is this involvement facilitated? What opportunities exist for exercising preference in daily decision-making (e.g., how to dress, what to eat, when to eat, making drinks, what to do and when to do it)? How is exercising choice established as routine? Does staff training reflect this orientation?

(d) Participating in social, personal care, leisure and household activities (i.e., being occupied sufficient to be fulfilled): Is providing an adequate level of constructive occupation (i.e., to avoid long periods with nothing much to do) seen as an important outcome? Is it made an important part of the individual’s person-centred plan? Are people helped to be as independent as possible within their home and in meeting the demands of daily life? Do staff job descriptions emphasise their role to support people to be involved (as opposed to describing a caring role and a role to run the home like an hotel)? Are staff trained in how to give people with substantial learning disabilities effective support as and when needed (e.g., active support – see http://www.arcuk.org.uk/wales/999095/en/active+support.html)

Emotional wellbeing

(a) Having a strong self-identity: Does the service operate procedures which emphasize knowing individuals well and which support individualisation and response to individual preferences (e.g., person-centred planning, active support, augmentative and assistive communication)? Is emphasis given to preserving the individual’s place in their family and their relationships with loved ones? Is attention given to their sexual identity, spirituality and religious belief?

(b) Self-esteem in relation to homelife: Is the person supported to be as independent and as little dependent as possible, contributing to personal independence, social life, community activities and household functioning? Is staff training in line with this orientation (e.g., active support)?

Rights

(a) Security of tenure under the law: See above.

(b) Right to community living: Are community housing options made to work for everyone, with no recourse to institutionalisation, hospitalisation or out-of-area placement (i.e., placements which pay scant regard to people’s ties to families and communities)?

(c) Freedom or expression within the law, access to voting and other political expression: What support is provided for personal empowerment, self-advocacy or citizen advocacy? What emphasis is given to personal preferences within person-centre planning?

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