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The Sheltered Housing Network

Supporting All Involved in The Provision of Sheltered and Supported Housing

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Health & Social Care Provision

 

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RESIDENT PARTICIPATION IN  

Health & Social Care Provision  

A Workshop Report

  University of Sussex, Brighton

Wednesday 19th April 2002, 10.00am ‑ 4.30pm  

INTRODUCTION

The future potential of Sheltered Housing focuses on the provision of health and social care support to create 'a home for life':

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 increasingly extra ‑ care/very sheltered/cat 2½ schemes are being developed

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 increasingly social services and health authorities are planning joint commissioning and co‑ordinated service delivery

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 Best Value review and the Supporting People programmes also promote these developments

Whilst discussions take place at a national level between ministries and quangos involved, and at the local level between care providing agencies, little seems to be done to involve the recipients of care and support, and, in particular residents of sheltered housing

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 yet advocacy bodies (eg: Age Concern, Help the Aged etc) repeatedly call for such involvement

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and government policy and pronouncements (eg: The National Service Frameworks and various charters) prescribe user involvement and choice

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currently, uncertainty about the charging policy in Supporting People and the sizing of the 'pot' to be available in April 2003 has dissuaded housing landlords from involving residents in the likely outcomes of the programme

In our own previous Workshops, we have on many occasions discussed residents' participation in:

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the provision of social and leisure activity within their scheme (they should be pro‑actively involved, with the Scheme Manager acting as a facilitator)

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housing management issues (eg: the job description and work practices of the Scheme Manager, the services to be embraced within rent or service charges)

We have not previously discussed residents' participation in health and social care issues; residents continue to be viewed as passive recipients of care. Why should this continue to be so?

Support and care provision is very personal and individual;

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 we do not age uniformly but develop different needs; we have different resources to cope with these needs ‑ personality, family and social networks, incomes. Assessments are individual and lead to specific care packages. Hitherto, social services, health workers, care agencies have almost invariably dealt with clients individually; (hence the frequent observation that six different care workers enter the scheme daily to support six different residents)

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our care needs are highly personal issues; often we are reluctant to discuss them with others; rightly we expect privacy in our own affairs and confidentially from those to whom we disclose them

But residents have a collective interest in ensuring that their own scheme (and others provided with the same management structure) is, as far as is possible, a 'home for life'; that as they grow more frail and dependent support will be available to enable them, if they so wish, to continue to live in the scheme rather than move to a residential care or nursing home (such a move not only has financial implications but signals a marked loss of independence).

Residents ought therefore to have a say in the type and level of support and care available within their scheme and the manner of its provision

What input might residents, therefore make?

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they may articulate the needs with they experience as they age

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they may be more pro‑active in suggesting how these needs might be met

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they may monitor and evaluate services provided to ensure that a high quality of life is maintained and that no resident is, without good reason, unwillingly obliged to leave the scheme

Over 100 participants attended the Workshop, well over a quarter of them being Sheltered Housing residents, with the majority of the remainder being scheme or line managers.

In the morning session two projects were presented at length together with a third brief presentation. The first of these described a large scheme offering a wide range of care and support services, with substantial resident participation; the second described a Best Value exercise; the third, shorter, presentation outlined resident participation in the move towards extra‑care provision.

PRESENTATIONS

"Empowerment : Myth or Reality" ‑ Angela Bradford, Assistant Director The ExtraCare Charitable Trust, assisted by Derek Chawner and Joyce Bough, residents of Berryhill Village ‑ a scheme of nearly 150 units in Stoke‑on‑Trent

The Extra Care Charitable Trust evolved 15 years ago from Coventry Churches HA; it is a Coventry based organisation working in the Midlands to provide various levels of support within a housing environment, though it also manages, today, some nursing homes. Currently the Trust has 37 schemes, accommodating some 1200 older people, employing a similar number of staff and involving 1000 volunteer helpers. The Trust's philosophy is to offer services, up to the levels provided within residential care and nursing homes, to older people in their own accommodation so that they don't experience the trauma of moving as their needs increase, usually marked by loss of independence. The provision of care and support is backed with a wide programme of activities enabling residents to contribute to the life of the scheme. A feature of ExtraCare developments is the pre-planning that takes place before the opening of a scheme. From a data base of over 9000 interested potential residents, workshops and consultation days are set up in the selected localities (400 people attended a recent day in Northampton). These events explore perceived needs, embracing design features, activities welcomed, preferred tenure (at Warrington both rented and leasehold properties are included) and the levels of care and support sought.

Such pre-planning involves all aspects of provision of the type of meals to be provided and their cost, the charges to be levied for various activities, the charges of purchased domestic services. At Berryhill Village, for instance, many of the activities were already ongoing before the residents moved into their new home.

The vision of the residents of what they expect from their scheme is co-ordinated with those of other providers - Social Services, Health and Housing 

Five levels of support are identified: from a minimal need of domestic support to the equivalent of nursing care. All flats within a scheme can meet all levels of support ‑ one does not need to move if one's support needs change. Flexibility enables a person to move both upwards and downwards in support level; close collaboration exists with social services

Berryhill Village has a staff of 30 embracing care and support tasks, housekeeping and catering administration. Also included are a well‑being advisor, fitness instructor and volunteer co‑ordinator. The aim is to involve all residents in the management of the Village; 'street' meetings are held monthly

The Well‑being Centre, including chiropodist, optician, dentist, is available both for residents and also older people in the neighbourhood

At Berryhill Village, a well being advisor has been engaged from fund raising events; it is hoped that the PCT will finance the continuance of the project. The advisor offers annual screening to identify health risks. In recent months it was found that 20 Berryhill Village residents had diabetes ‑ but none knew about blood testing or dietary needs; a special interest group has been developed which has resulted in all those residents achieving acceptable blood glucose levels. Similarly those with raised blood pressure, urinary infections etc have been identified and supported. These support groups also serve an important social function

Those residents with the lower levels of support needs are able to access specialist staff at all times

Angela provided two case studies of residents who came to Berryhill Village after very serious acute illnesses or surgery but who, through the support and activity provided, achieved much greater levels of independence

Each of the speakers emphasised the wide range of care and activities available to residents. Any support plan is designed with the full agreement of the resident and reviewed monthly, 3 or 6 monthly. Residents are strongly encouraged to set goals for themselves (eg: to walk without a frame within the month). The Village offers them opportunities to achieve their goals

The ExtraCare Schemes demonstrate that, within a sizeable community a wide and flexible array of support services and activities can be offered. Individuals have a wide range of choices open to them. Collectively they can oversee this range of choices to ensure that it meets most of their needs

"A Different Kettle of Fish"  Sharon Mitchell, Business Review Manager, Atlantic Housing Group

Sharon Mitchell described the approach to Best Value adopted by Eastleigh HA, in partnership with Fernhill Care Ltd, as part of a Housing Corporation BV Pilot in March 1999 Labels, such as Investors in People, Quality Assurance, Charter Mark, Crystal Mark are used as symbols of quality in the workplace. The label Best Value connotes of the 4C's: Challenge, Comparison, Consultation and Competition. One must see Best Value as an integral part of the process of service provision ‑ not an add‑on extra What is extra‑care? It encompasses frail older tenants, some of whom need relatively little support, whilst others need higher levels of care and support to maintain their independence. This project involved 117 tenants in two higher schemes. Extra‑care aims to promote independence, dignity and choice and to provide a home for as long as is wanted. Support is provided on site for 24 hours a day. Quality is assured through employment of staff with NVQ levels 2 or 3; all are already employed, with no casual employees. Care is bulk purchased through a contract established via social services. Individually tailored care packages can include washing and dressing, toileting and bathing, food preparation and medication and tailored to meet individual needs This is a very different type of service from that usually subject to review ‑ eg: property maintenance and repair. It is a 'soft' service in which exact quantitative measurement is difficult; it is based on personal relationships; performance indicators are not well established and there is little or no comparative baseline information. In a fiercely competitive market , information is tightly guarded and it is difficult for tenants to make an input. There is a large number of stakeholders involved in providing and using extra-care services Who are the stakeholders and how might they be involved? This project's strategy aimed to support and facilitate the ir involvement, recognising their complexity. A range of involvement options must be adaptive and flexible, maximising the linkages to wider tenant participation and community involvement A matrix was devised which mapped the power and interest of the several stakeholders. One need not spend much time involving quadrant A but one must target one's resources to those in quadrant D

Mapping Power and Interest

 

z

 

 

 

 

At

 

 

 

 

 

 

 

 

A (minimal effort)

B (keep informed)

 

Opticians

Meals on Wheels

 

Chiropodist

Social Groups

 

Dentist

Disabled Aids

 

Undertaker

College

 

Church

Community Service

 

Police

 

 

c (keep satisfied)

D (key players)

 

Tenants Consultative Group

Health - OT, CPNs, Gps

 

Tenants Forum

Social Services

 

Unison

Tenants

 

GMB

Advocates

 

 

Staff

 

 

Board Members

 

 

Borough Council

 

 

Mental Health

To amplify: Different Stakeholders may be involved in different ways

... For Example ...

 

 

 

 

 

 

 

Direct Service User

 

0

Test approach with Volunteers

 

0

Role for Advocacy

 

0

Development needs: self esteem, confidence, trust

 

0

Issues: gratuitous nature, will people be open

e

0

Block Purchase Care - Key Buyer

 

6

Contractual Relationship

 

0

Effective Use of Time

 

0

Demonstrate Benefits

 

 

Linkages with wider BV Agenda

 

 

Targeted Involvement

Other agencies and community groups need to be embraced ‑ eg: Help the Aged, Association for the Deaf, Cancer Relief, MacMillan Fund etc

There are obstacles in involving some stakeholders in the partnership. Frail older people are often unable to participate fully and wider views must be incorporated through proxies. The very number of stakeholders produces problems

A variety of formal and informal techniques of involvement were used in the project. 40% of the tenants took part in one to one interviews; three small groups were established and 14% of tenants took part in focus groups. An Advisory Board embraced key players; outside organisations formed a Consumer Panel. Scheme Staff could not be used as interviewers but they were made to feel comfortable with the process and were encouraged to cite obstacles to development, opportunities for improvements

What Worked? Front end planning took time but provided a focus for the project. Stakeholders, especially the tenants, drove the process. Good practice was shared and linkages maximised. Family members and carers acted as advocates

In semi structured interviews people were asked to rank what issues they felt to be important, and these were then compared with satisfaction levels 

Focusing on What Matters

Performance / Importance Matrix

 

Care

Staff

Control & Independence

Safety / Security

Keeping Informed

Choice

Flat

Cost of Living

Performance

%

%

%

%

%

%

%

%

Very Good

77

85

83

75

28

34

72

34

Fairly Good

11

11

11

19

30

17

17

26

Neither Good / Bad

2

2

2

0

9

15

4

6

Fairly Poor

2

0

0

2

13

4

2

0

Very Poor

-

0

0

0

6

9

0

0

No opinion / No reply

9

2

2

4

15

21

4

34

 

1st

2nd

3rd

4th

5th

6th

Importance

 A series of Soft Pi's was developed

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Having a say about the level of care and keep they get Feeling that staff listen to their views

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Staff always knock and wait for an answer

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There is security of tenure

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Information provided is clear and easy to understand

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One had a chance and made the decision to move into the scheme

In developing these themes one must be careful of one's interview technique and be sure that one compares like with like

Comparison and bench marking is very difficult. Service providers may collude in providing data. The quality of care provision is difficult to judge. In this project 39 similar organisations were contacted to form a Benchmarking group; only 21 responded and most of those seemed interested only in finding out what Eastleigh HA was doing, rather than provide information about themselves

Eastleigh HA developed its own Care Self Assessment model to enable comparisons to be made, to foster continuous improvement, to challenge'mind sets' and enable cost deficit analyses to be made

                          Stage 1             involved a Benchmarking Matrix

                         Stage 2             involved Self Assessment

 

Stage 1

Benchmarking Matrix

 

Intensive Personal Care

24 Hour on site care

All Meals Provided

 

 

cover

 

 

Mixture of non-invasive

24 hour on site care

Help with preparing

 

personal care via block

cover

meals or Meals on

 

purchased Contract

 

Wheels provision

 

None - Care spot purchased

24 hour central control

No automatic help with

 

according to personal needs

cover

meals - or Meals on

 

 

 

Wheels provision

 

None - Care spot purchased

Specific allotted care

Help according to

 

according to personal needs

time

personal needs - ie.

 

 

 

meals, shopping, etc

Care  Provision

 

 

 

 

 

 

SHN Scan Note – Regretfully we were unable to get this chart to scan effectively and therefore the display on our web site is distorted.

 

1 .                                                          Can customers choose who          1     1

        is involved in helping plan

        their care plan

        * Yes/No

2.                                                           Can tenants themselves              1     1                                              1

        choose what care is provided

        from a 'pick and mix' range of

        care options within a

        predetermined budget?

               Yes/No

3.                                                           Do customers have their own        1     1/2                                                                                                                                       %

                                                                                                                                                                                                                                                                                                                                           s

      personal copy of their care plan                                                                                                                                                                                                             U)

 

  4. ......   in a format which meets  (D

 

their personal needs ‑ ie large                                                                                   %                                                              U) (D

print, audio tape, braille?                                                                                                                                                                                                                                                                                     U) 2

 

Yes/No

 

5. Do you offer services tailored                                                                        6            4%                  4%             %                          41/2                                                              4                        5                           (D

 

        to meet cultural and different

        needs of the area you

        represent ‑ namely:

               Black and minority ethnic

               groups? ‑ Yes/No

               Dietary needs ‑ Yes/No

               Toileting needs ‑ Yes/No

               Religious needs ‑ Yes/No

               Physical design of the

               building ‑ Yes/No

               A gender based bathing

               service ‑ Yes/No

 

5. Are personal care plans                                                                                                                      1                                            1                                            1

 

formally reviewed with customers at least

 

quarterly? * Yes/No

 

00

   

The importance of different attributes was ranked and multiplied by the scores achieved in each, in order to give an overall quality index

The outcome of the project was an ability to challenge one's own work, to avoid complacency even though one's own standards were high

The project was costly! Savings made as a result of the exercise were but a half of its total costs; therefore the scope of a project is vital if you want to create economies of scale. Challenges remain in sustaining involvement, monitoring progress and reinforcing cultural change within the organisation

"From Multiculturism to Extra‑Care" ‑ Michelle Jogee assisted by Dorothy Miller and Mohammed Hosein ‑ Abyssinia Court: Hornsey HT

Abyssinia Court was developed seven and a half years ago specifically as a multi cultural scheme; V. of its residents are Asian (including Kurdish from Iran and Iraq, Farsi from Iran, Chinese, Bangladeshi and Indians from India and the West Indies), a third Afro‑Carribean and a third White from various European countries. Though quite lavishly provided with facilities many of these have remained under used and the scheme has operated substantially as Category 2. But it is now planning to introduce extra‑care services. The Court has successfully developed its multi‑cultural image and gained much national repute. A Tenant/Resident Association, ACTRA, has existed from the August 2000. About two thirds of  residents regularly attend its meetings. Religious festivals of all faiths are celebrated ‑ there is usually one such event each month. Recently a multi‑faith programme has been established. A most harmonious multi‑cultural atmosphere has been created. Some residents have moved on, because of their frailty, to residential care homes; and many of these have subsequently the home could not meet their cultural needs ‑ eg: appropriate meals, dressing or companionship, one returned to Abyssinia Court. Abyssinia Court therefore strives to meet their higher care needs. For six months discussions have been on‑going with LB Haringey to provide an extra- care team. All correspondence from the Court comes from the Chair of ACTRA; ACTRA officers are present at all meetings with the Council; the Commissioning Manager attends ACTRA meetings concerned with extra‑care. Jointly a care agency has been selected as sole provider Michelle will work closely with the care team (she has always closely monitored care packages of those residents not speaking English; she and the care team will endeavour to assign care workers appropriately as religious and cultural beliefs demand. Michelle believes that the cultural mix and tolerance existing within the scheme has done much to mitigate the tensions that commonly arise between the active and the very frail residents

 Summing Up ‑ Christine Thompson ‑ Elderly Services Manager, Family HA

 In summing up some of the key messages arising from the presentations, Christine highlighted:

The concern expressed by resident participants with care and support issues
The benefits of resident participation from the onset of planning
The importance of partnerships working between all Stakeholders

In discussion it was noted that residents would feel under valued if but one page of the Tenant Handbook was in braille or a foreign language ‑ though this page often indicates where a full version could be obtained. Hard copies were usually produced as requested. Many older residents for whom English was a second language were not literate in their mother tongue; for these a tape version was advantageous

Family involvement in care and support was welcomed; at Berryhill, for example, family members were often active in Village activities. But it should always be agreed with residents who should be called in an emergency, who should hold the spare key. Residents should have a choice.

DISCUSSIONS: TOWARDS GOOD PRACTICE

In the afternoon small workshop groups, participants were invited to consider three issues

What forms of care and support might residents need to enable them to remain within this scheme?

How might residents actively influence or promote the provision of such care and support, by collectively articulating their needs, suggesting modes of service provision and monitoring and evaluating these?

An affirmation that care and support provision is a proper issue for resident participation and involvement

The points raised by the six groups have been aggregated into a single narrative:

Perhaps not unsurprisingly, there seems to have been no dissent from the view that residents ought to be involved that they have a collective interest in the level and mode of support provided within their scheme

General Principles

In the course of their discussions participants provided a lengthy, and expected, list of services which should be available. In particular however they stressed five themes:

Reliability:  All services provided must be of a good standard and reliable; the mode of their provision should be negotiated with residents and not delivered at the provider's convenience

24 Hour Care:  Support should be available throughout 24 hours ‑ either by a scheme manager on duty, scheme manager living on site but off duty, a sleep over care team worker, or central control alarm system

Flexibility:  There should be flexibility within the system of care and support provision ‑ ie. support should be available at short notice in an emergency (without a lengthy wait for assessment) and it should be withdrawn as soon as it was no longer needed (that is to say, not left in place, encouraging permanent dependancy). There should be flexibility too in the tasks provided by care workers (eg: a care worker arrives to do weekly shopping; but a neighbour did one's shopping the previous day; the care worker is often unwilling to undertake alternative tasks for which she has no contract)

 Personal Choice: Whilst co‑ordinated delivery of care and support within a scheme by a designated team, by a single GP etc, might make for efficient delivery, residents should be free to make any personal arrangements ‑ eg: to retain their former GP, home help etc.

Information

There is a pressing need for information about services available:

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from statutory services (health and social services); and one's eligibility for such services, talks might be arranged within schemes

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from voluntary agencies and private sector agencies; a directory could be held within the scheme; cards and flyers displayed on scheme notice boards (provided especially by users of such services)

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a scheme newsletter could be used to disseminate such information

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the potential of IT should be explored (many schemes now have a computer for residents in the common room)

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residents should be fully aware of what services are, or could, be provided within their scheme; their prior expectations may well be misguided

Communication

In this, as in almost every situation, the need for extensive communication was stressed:

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discussions should involve residents, their family and carers; scheme manager and also management staff, service providers, both statutory and voluntarylinformal sectors

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discussions to create a better understanding of how systems of care and support operate

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collective discussion within the scheme develops community spirit and cohesion and thus facilitates further involvement

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discussion should be organised to meet the needs of black and minority ethnic residents for whom English may not be a well understood language, and of residents with sensory impairments who require braille or tape texts

What Residents might do

A variety of initiatives were suggested:

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residents (perhaps their residents association) should be involved in the negotiation of a Contract with any care agency whose team is to work within the scheme (some residents may have had past dealings with such agencies and have opinions about their reliability, standards of provision etc)

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similarly residents should be involved in recruiting other service providers ‑ eg: a handy person to carry out occasional jobs residents should be involved in arrangements for peripatetic professionals (eg: chiropodist/nail cutting, hairdresser, health visitors) to visit the scheme regularly, using a designated room in the scheme

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residents should, from their own experiences, be able to suggest more co‑ordinated patterns of service delivery (eg: where two or more care workers visit a scheme on the same day; two or more residents might join together to hire a single care worker for a eg: 3 hour period, flexibly arranged between themselves; one (on a rota) GP might visit a scheme daily and see any emergency cases, obviating a resident's wait for an appointment

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residents should urge their landlord to make necessary physical improvements in their scheme ‑ eg: wheelchair access, wheelchair storage area, lifts, etc

Monitoring and Evaluation

Residents should continually monitor service provision within their scheme:

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residents should be encouraged to use formal channels of complaint either to their landlord or the service provider. Such complaints will usually be recorded and reviewed by higher bodies

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residents should give honest answers to any 'satisfaction' surveys distributed without fear of service withdrawal

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residents should ensure that all their care workers are adequately trained and monitored by their employers

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residents should be aware of the competition between service providing agencies, which gives them more power in choosing between them

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residents are often distressed when a resident of long standing moves on to residential care; without becoming over involved in personal issues, they could use the occasion to question the levels of support available within their scheme

Collective Action

Collective Action has a positive impact within a scheme:

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training should be available to encourage residents to set up and become involved in formal resident associations

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suggestions or complaints coming from a residents association usually carry much more weight than individual representatives

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residents associations may create annual and immediate 'action plans'

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each successful resident involvement encourages confidence and promotes further activity and achievement

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resident involvement, in all spheres of action, enhances the social cohesion of the scheme