The United Nations has ruled that all people with disabilities have the right to live in and be part of the community

Challenging Institutions

Community Living for People
With Ongoing Needs

Plain English Version
A Coalition Against Segregated Living Publication

CONTENTS

Table of Contents i

Thank You ii

1. Introduction 1

2. Project History 2

3. Institutions 3

3.1 Cluster Housing

4. Challenging Behaviour 4

5. Community Living 5

5.1 Hornsby Challenge

5.2 The Right Future Project

5.3 Deinstitutionalisation in New Hampshire

5.4 NIMROD and Andover Developments

5.5 Pleasant Creek

5.6 Hirondelle Improved Lifestyle Project

5.7 A Review of Three Supported Living Agencies

6. Types of Accommodation

6.1 The Past

6.2 Supported Living

7. Supporting People With Ongoing Needs

7.1 Positive Approaches

7.2 Gentle Teaching

7.3 Holistic Approach

8. Conclusion

Thank You

The Coalition Against Segregated Living (CASL) would like to thank the following people for their support and help:

Sue Brady

Jan Coles

Lesley Hall

Sue Smith

Jacqui Ward

Pauline Williams

We would also like to thank The Lance Reichstein Foundation for funding the Deinstitutionalisation of People with Intellectual Disabilities and Their Support Needs project. The Challenging Institutions report is one aspect of this project.

Members of the Coalition Against Segregated Living include:

Action for Community Living

Action for More Independence and Dignity in Accommodation (AMIDA) Disability Justice Advocacy formerly Action Resource Network

Disability Resource Centre

Reinforce

STAR

Westernport Speaking Out

Villamanta Legal Service

Westmove

CASL would like to thank AMIDA for managing the project.

For further information contact AMIDA:

Ph: 9650-2722

Fax: 9654-8575

E-mail: AMIDA@infoxchange.net.au

Web: www.infoxchange.net.au/AMIDA

Address: 1st Floor Ross House,

247 Flinders Lane

Melbourne Australia 3000

November 2000

1. INTRODUCTION

The United Nations has ruled that all people with disabilities have the right to live in and be part of the community. The United Nations also says that governments should provide people with the support and services they need to live in the community.

Over the past thirty years institutions all over the world have been closing down. Governments and people living in the community have learnt that institutions are not good places for people with an intellectual disability to live in. Many people now believe that everyone has the right to live in the community.

However, there are some governments and organisations that believe that there will always be people with intellectual disabilities who need to live in institutions. They say that people who have severe disabilities or who have behaviour problems may still need institutions.

There are some people who think that the government should build cluster housing estates for people with an intellectual disability. Cluster housing involves building lots of small houses and units on a large area of land. People with an intellectual disability who live in cluster housing live next door to each other, all their neighbours and all the people who live near them also have a disability.

This report will argue that it is possible for everyone to live in the community even people who have a severe disability or severe behaviour problems. This report will talk about:

the bad effects of living in institutions or cluster houses
different types of support services received by people with disabilities all over the world
different types of accommodation in the community

2. PROJECT HISTORY

Over the past few years the Victorian government has been closing institutions and some of the people who lived in these institutions have moved into houses in the community. In 1994 the Victorian Government decided to close two institutions Janefield and Kingsbury. The government moved two hundred and fifty people into housing in the community.

However, at the same time they also built a new institution for 100 people. This decision upset a lot of advocacy groups. They believe that all institutions should close. They also believe that the one hundred people who moved into the new institution had the right to live in the community.

Disability advocacy groups decided that they should join together and fight the decision to build a new institution. Nine groups joined together and organised a campaign to fight the government’s decision to build a new institution. The groups called themselves the Coalition Against Segregated Living – CASL.

CASL tried to stop the government building the new institution they:

held demonstrations
wrote to the newspapers
used the Anti Discrimination laws
wrote submissions to get funding
wrote reports.

CASL couldn’t stop the government building the new institution. They are now working to make sure that no more new institutions are built. They also want the government to close all the institutions.

3. INSTITUTIONS

When I first went to Sunbury I thought it was going to be a nice place. I thought I was going to be happy. After a few years at Caloola I realised that I wasn’t happy at all. I saw a dreadful and abusive side to the institution that I would never have imagined. I was pushed to the limits and the pain and the agony had only just began.

Doug Pentland

Institutions are not good places for people to live in. The people who live in institutions are separated from the rest of the community. They have to live by timetables. They are told what time they will eat, what time they will go to bed and they do not have independence. Staff control their lives. There are 40,000 people with an intellectual disability living in Victoria only 1000 people with an intellectual disability live in institutions. This means that the other 39,000 are living in the community. The majority of people with an intellectual disability are already living in the community!

3.1 Cluster Housing

Cluster housing is where lots of houses for people with an intellectual disability are all built together on the one property. People with an intellectual disability who live in cluster housing live next door to each other, all their neighbours and all the people who live near them will also have a disability. There are some organisations who think that cluster housing is the best type of housing for people who are now living in institutions.

CASL believes that cluster housing still separates people with intellectual disabilities from the community. The problems with cluster housing are:

people have to live by staff routines
people are kept separate from the community
people do not get to live with the people they want to live with
there is little chance to move to the community
people do not get to have a choice in what type of housing they want to live in or who they want to live with or where they want to live
If people want to go out on weekends you need buses

CASL thinks that the government should not build cluster housing because they are just another type of institution.

4. CHALLENGING BEHAVIOUR

Some of the people who still live in institutions are said to have what the government calls "challenging behaviour". This is a hard term to understand because not everyone agrees about what it means.

Some people think it means that the people who have the label may sometimes do things, which upset other people or upset themselves. CASL thinks that some people who live in institutions get upset because living in an institution makes them unhappy or because it may be the only way they can express themselves.

This report will not use the words challenging behaviour because we think it labels people. Instead we will talk about people with ongoing needs – which means people who need support staff.

5. COMMUNITY LIVING

In this section we describe different types of community accommodation available for people with ongoing needs. We are doing this to show that people with ongoing needs can live in the community and do not need to live in institutions. This report will show that people with ongoing needs are living in the community all over the world.

5.1 Hornsby Challenge

Hornsby Challenge is an organisation in NSW, which supports people with an intellectual disability to live in the community. They support people with ongoing needs who other people may say should live in institutions. Hornsby Challenge spends time getting to know people and finding out where they would like to live and the things they like doing. Hornsby Challenge supports people with severe disabilities and ongoing needs to live in all different types of houses not just group homes. The types of housing Hornsby Challenge provides for people includes:

sharing with two or three other people
living with a person without a disability
living with a person with a disability
living alone
boarding with a family
living in your family home

Hornsby Challenge believes that people should not live in institutions. They believe that people should be able to choose the type of accommodation they want to live in. Hornsby Challenge has shown that people with severe disabilities or ongoing needs can live in the community and do not need to live in institutions.

5.2 The Right Future Project

In 1993 the Right Future Project in Canada moved 118 people with an intellectual disability, some of which had severe disabilities or ongoing needs, out of an institution. When the people moved out of the institution they chose

what type of house they wanted and who they wanted to live with. Some people:

rented a house or flat
moved in with a family
had a support worker living in a flat attached to their home
boarded with families or friends
moved into housing cooperatives
went into foster care

Each person had his or her own support team. The team found out what the person wanted in their life. The support team used the information to find the type of housing, work, recreation etc the person wanted. The staff had a strong commitment to self advocacy. The Right Future project believes that:

all people have the right to live in the community
people can move straight into a community house they do not need to learn how to live in the community before they can move.
that a person with a disability does not have to prove that they are ready to move into the community instead the community must be educated and prepared.

The Right Future Project proves that it is possible for all people to live in the community regardless of their level of their disability or any so called behaviour problems.

5.3 De-institutionalisation Region 5

Region 5 in New Hampshire closed one of their institutions for people with an intellectual disability. When people first moved out of the institution they moved into group homes. However, people were not happy living in group homes. The staff believed that everyone should be given the support to live in whatever type of house they wanted.

Instead of living in group homes people can now choose from lots of different types of housing and living situations. The majority of people now live in their own home or flat, which they own or rent. The staff provides whatever level of support the person needs to be able to do this. This project also proves that people are able to live in the community with in all different types of housing and that they do not need institutions.

5.4 NIMROD and ANDOVER England

These projects provided housing for people who are said to have severe challenging behaviour. The people live in group homes. The people have been living in these homes for nearly ten years. Although the people are living in group homes the project still proves that people with severe disabilities and challenging behaviour can live in housing in the community and do not need to live in institutions. The people running the houses have proven people living in the community have a better social life, see their family more often and are involved in more activities than people living institutions.

5.5 Pleasant Creek Closure

Pleasant Creek is an institution in Victoria, which recently closed. Every person living in the institution moved into a house in the community. Before Pleasant Creek closed the government paid a team of people to find out if everyone could move into the community.

The team found out that people living in institutions often had poor health. They also found out that people in institutions didn’t get to go out and were bored because there was nothing to do. People didn’t have any choice about the things they did, who they lived with or where they worked. The team met with the people living in Pleasant Creek. They spent time watching them and they talked to the five people who knew the person best. The team decided that all of the people living in Pleasant Creek should move to housing in the community.

A member of the team has heard that since moving into the community some of the behaviour, which was a problem in Pleasant Creek, has decreased. This project shows that people benefit if they move from an institution to the community and that no one needs to live in an institution

5.6 Hirondelle Improved Lifestyle Project

In 1996 there was a fire at Kew institution. A unit burned down and nine people died. It was decided that the 40 people who lost their home when the unit burned down would move into the houses in the community. In 1998 the forty men moved into seven community homes. After one year the government decided to find out if the men’s lives had improved since they moved out of Kew Institution. The government hired people called consultants to find out if the men’s lives had improved.

The consultants found out that the move to the community had been a success. They wrote a report, which says all of the men lives had improved. According to the report since moving out of the institution the men:

engaged in more activities in the community
learnt new skills
had more contact with their families
had more choices
did not have as many behaviour problems
needed less drugs

The Hirondelle project proves that people who had lived in institutions can live successfully in the community and have a better life.

5.7 A Review of Three Supported Living Agencies

Options in Community Living – Colorado Residential Inc - Ohio

Centennial Development Service Inc – Wisconsin

These three organisations help people with ongoing needs to live in their own homes in the community. The organisations provide whatever support people need to live in the community eg staff, services, resources etc. The three organisations prove that it is possible for people with severe disabilities to live in their own homes in the community. The organisation believes they are successful because:

they are small – it is personal
all the staff agree with what they are doing
they think of lots of different ways to support people
they are flexible

5.8 Okalahoma Community Development Plan

In 1994 an institution closed in Okalahoma. All the people living in the institution moved in to the community. The closure was very successful – and shows that all people living in institutions are able to move into community housing. The government in Okalahoma is now planning to close two more institutions and provide the support and services people need to live in the community. They plan to:

listen to what people say they want
provide support and services based on what the person wants
use community services

Okalahoma are trying to make sure they have developed a good service by enabling people to have a say in what they want and providing the services and support that people want.

6. TYPES OF ACCOMMODATION

The first part of this report described the different types of housing and services people with an intellectual disability are receiving around the world. This part of the report will describe some of the ways services has been provided in the past and look at new ways of providing services for people with an intellectual disability.

6.1 The Past

In Victoria most housing and services are based around either institutions or group homes. Group homes have helped many people to move out of institutions however there are problems with group homes. The problems with group homes include:

people have to live with three or more people even if they don’t want to.
people cannot choose who they live with. They may have to live with people they do not like.
people have to share the things in the house.
group homes often expect people to shop, eat and do things together. Some people may not like this and want to do things on their own.

Because of all these things people may get unhappy living in a group home. When they do they may use behaviour to show they are upset. This can lead to them having the label of problem behaviour.

6.2 Supported Living

Supported Living is another way of providing services and support for people with ongoing needs. Supported living involves finding out each person’s wishes and desires - Where they would like to live - Who they would like to live with - The type of life they want to lead. The service agency then provides the support the person needs to have their wishes met. Supported Living says that:

each person is an individual. People should not have to live together just because they all have a disability. People with disabilities should have the same choices and opportunities to live the life they want.
no one should have to prove they are ready to live in the community
all planning should based on what the person wants
a community support network should be developed to help support the person living in the community
the services provided should be flexible and meet the persons changing needs
people should have access to technology including communication aids, computers, videos, talking books etc.
it is important to concentrate on the person’s strengths.
Plain English must be used at all times.
people with an intellectual disability should own and control their home

Supported living services provide:

Accommodation

The person receives a home, which is suited to their needs and wants. They have control of their home. The home should be in the community. The person may:

live alone
share with a person with a disability
share with a person without a disability
live in a family
board
share with three or four others

Support Networks

Supported Living organisations encourage friends and families to continue to be involved in the person’s life (if the person wants this).

Community Support

Supported living organisations help the person to develop a community network and to receive support from the community including:

recreation and leisure choices
cleaning services
home care
meals on wheels

The organisations that use supported living operate in a very different way from other housing service providers. Their main focus is on the

individual. The organisations have to be very flexible and respond to each person’s changing needs. They work closely with the person, their friends and family and the community. They work to ensure that people with disabilities not only have a say in how they live their lives but also how the organisation is run. This is called consumer participation.

Supported living can help people with ongoing needs to live in the community by providing them with the type of housing and services which is best suited to their needs and wishes. People who use supported living have proven that people with ongoing needs can live in the community and do not need to live in institutions.

7. SUPPORTING PEOPLE WITH ONGOING NEEDS

People who sometimes do things such as hurting themselves or hurting others are often labelled as having challenging behaviour. There are many different ways to help people to stop hurting themselves or others. This report will describe three different ways of helping people with ongoing needs.

7.1 Positive Approaches

Positive Approaches is one way of supporting people with ongoing needs. People who use Positive Approaches believe that the best way to help a person with ongoing needs is to find out what the person wants and feels. If the person is unhappy find out why and make the changes necessary to make the person happy.

Positive Approaches believes that behaviour may also change for the better if a person is given the opportunity to live in the type of accommodation that best suits them. Often people with challenging behaviour live in group homes and institutions. The things, which may make people unhappy when they live in institutions or group homes, are:

set mealtime.
not being able to eat snacks when hungry.
not having a choice about the food they eat.
not getting enough exercise.
not having money.
not being able to have a boyfriend or girlfriend.
not feeling important.
isolation from the community.
no access to transport.
not able to communicate what you want.

Communication

People who use Positive Approaches believe people need to be able to communicate how they are feeling. Staff need to find out why people are upset. Positive Approaches describes different ways of helping people who cannot talk to communicate. You can:

use communication boards
use pictures
watch the person to see what upsets them

Assessment

People who use positive approaches believe that it is important to find out if the person is upset because they are:

in pain
have a mental illness
have been abused
lonely
upset because they do not have any control over their lives

Medication

Often people with ongoing needs are given medication to calm them down. People who use Positive Approaches believe that it is not good to use medication to calm people down. They believe that people should only be given medication if:

they have a mental disorder which can be helped with medication or
they have an illness
if they are really hurting themselves or someone else.

People who use Positive Approaches believe that some ways of helping people with ongoing needs are:

learning what the person wants
learning what makes the person happy
learning what upsets the person.
providing supporting
trying different things
stand in the person shoes and think "Would I want people to be doing this to me?

7.2 Gentle Teaching

Gentle Teaching is another way of supporting people with ongoing needs. People who use Gentle Teaching believe that there are four important things, which need to happen when helping a person with challenging behaviour:

the person needs to feel safe
the person needs to feel that the staff is interested in them
the person needs to feel that the staff respects them and values them
the person should be taught to respect and value the staff

People who use Gentle teaching say that people with ongoing needs should:

have good health care, food, and clothing
feel safe
feel good, and be valued as a person.
have a life plan
feel they belong - have a home
participate socially - have friends
have activities to do during the day
feel content

People who use Gentle Teaching believe that people with ongoing needs may use behaviours as a way as expressing themselves. They believe that it is important to make a person with ongoing needs feel safe and respected. People who use Gentle teaching also say that we should:

not make large numbers of people with disabilities live in one place
not try to find ways to control people
not use drugs to quieten people down
not punish people

7.3 Holistic Approach

This approach was developed by an organisation called Hornsby Challenge. Holistic means to look at all different ways of doing things and look at all aspects of the person life – their wishes, desires, choices etc. Hornsby Challenge supports people ongoing needs by:

trying to prevent or stop the behaviour occurring before it happens
working to understand the person well
understanding that the people who are closest to the person understands them best
trying to find out what may be upsetting the person

Preventing or stopping challenging behaviour

Hornsby Challenge believes that people may have challenging behaviour because family, friends and staff do not take the time to listen to the person or give them the things they want. When this happens the person gets desperate and may get upset.

Hornsby Challenge says that if you provide people with the life and the things they want then the problem behaviours may not happen. To help the person find out what they want staff, family and friends should:

talk or spend time with the person.
change the way we work.
help people to live in the type of housing they want.
help people to work in the type of job they want.
make it easier for the person to have the life they want.
become involved in the things the person is interested in.

Hornsby Challenge thinks that staff should work to find out:

What sort of life does this person want to live?
What type of house would the person like?
What would they like to do in their spare time?
What sort of friends would the person like?

Hornsby Challenge believes that staff should:

respect people with disabilities and listen seriously to their concerns.
recognise what is good about the person.
make sure that people receive positive feedback and encouragement.

The purpose of the behaviour

Behaviour has a purpose and it is the responsibility of the people supporting to try and find out the purpose of the behaviour. Understanding the different purposes of behaviour is important when helping a person. Is the person upset about something? Are they sick? Is where they live upsetting them? Do they have problems communicating or doing things?

Giving the person what they want

Hornsby Challenge believes that once we understand the purpose of the behaviour. We then decide if we can give the person what they want. They believe that nine times out of ten the answer will be yes. If the person’s behaviour seems to say I am angry because I have no control over my life – then give them control over their life.

If the person says - I don’t like doing housework and I want to meet people. Hornsby Challenge says get a cleaner and get out of the house more. Now I’ll teach you how to ask for it without having to hit me.

8. CONCLUSION

A lot of people living in institutions have done so since they were young children. They have been kept apart from the community and they do not have many rights. They have had to live in institutions all their lives because they were unlucky enough to be born when people thought institutions were good places for people with disabilities. If they were born today they would not have gone into an institutions. Today we know that children should be kept at home.

This report proves that community living can be achieved for all people. It doesn’t matter about how severe your disability is or if you have challenging behaviour.

[AMIDA Home Page][About AMIDA][Raising Our Voices] [Reports] [News] [Contact Us]