Interesting Models and Practices of Respite Care
Ireland and overseas
Prepared under agreement with Inclusion Ireland
Alternative Respite Care Project 2009
August 2009
Dr Pauline Conroy
Stewart Reddin B.Soc.Sc.
1
Contents
Selecting interesting models and practices
p.3
The role of volunteers
p.4
The role of intermediary bodies
p.5
The New American Respite Law
p.6
Community Living Canada
p. 10
Whole Family Respite Information Canada
p.11
Northern Ireland
p.13
Young Carers Respite Northern Ireland
p. 14
Ulster Council of GAA moves in disability awareness
p.15
Ågrenska Sweden
p.16
Mayo moves to social model Ireland
p.17
Scouting for All
p.18
Deaf Scouts
p.21
Raphoe – Steps to Mainstreaming Programme in Donegal
p.22
The Walkinstown Association – new thinking
p.24
…And on Saturdays –Cheeverstown has ideas
p.25
__________________________________
‘Beyond service settings the community tended to be experienced as fleeting and irregular visits to
unfamiliar public amenities, trips to the shops and walks which broke up the routine of service provision.
Staff usually accompanied service users into the community and generally controlled the timing,
destination and resources required to make public places accessible.’
P. Milner and B. Kelly (2009) Disability and Society, Vol.24, No.1, pp 47-62
2
Interesting Models and Practices of Respite Care - Ireland and overseas
Selecting interesting models and practices
In selecting some examples of interesting models and practices in respite care, a number of considerations
were taken into account:
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The model or practice could be reproduced in a different social or cultural environment
Some models or practices would suit adults – others would suit children
The models or practices had a ‘mass’ character and were not so unusual or atypical that it would
not be possible to replicate them
The models or practices involved, where possible, an already existing community or public
structure or organisation
Most importantly, the models or practices needed to be sustainable over time
Since people with an intellectual disability or on the autism spectrum spend an amount of time
with paid staff, we watched out for models or practices involving volunteers
Some informal observations in our search
Respite care is widely viewed as a separate service provision in its own right and having its own expertise
and clientele outside and apart from residential care in countries like Canada and the USA.
Intellectual disability or learning disability was more likely to be mentioned or understood than autism.
American websites are more likely than other English language websites to specifically mention autism or
autism spectrum disorder.1
In Ireland, there is considerable overlap between our search for community based organisations and the
area of Day Services. There is also an overlap between our search for community based organisations and
the Department of Social and Family Affairs supported ‘Steps to Mainstreaming’ – a community
integration programme for people with disabilities, overseen by the Disability Equality Specialist Support
Agency and the Family Resource Agency.
In countries like Canada or the US, respite services are more likely to be positioned within a social model
and seen as part of independent living, supported or assisted independent living or community services,
compared with Ireland.
1
A document commissioned in the UK proved exceptionally interesting on service delivery and organisation:
Department of Health (2006) Better Services for People with an Autism Spectrum Disorder – A Note clarifying
Current Government Policy and Describing Good Practice, UK.
3
Some respite services for people with disabilities and for frail elderly people are fused together in terms
of service delivery in countries like the UK.
A European Commission supported partnership has been exploring respite services for individuals
suffering from serious and rare disorders. This project is called Rhapsody. REHAB represents Ireland in
the consortium of four core countries. The goal of the Rhapsody network is not comparable to the goal of
this research.
A number of service providers have already undertaken considerable exploration of community outreach
from their residential or day services in Dublin South West.
The role of volunteers
In our enquiries and in examining various models, we observed that a range of different kinds of
volunteers were frequently mobilised, recruited or involved in community based activities with people
with disabilities. We noted that best practice seems to include some or all of the following:
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A simple policy on volunteering
Selection of specific kinds of volunteers matched to the needs of participant individuals, families
and activities
Orientation, briefing or actual training of volunteers
Police clearance and/or criminal record clearance
Volunteers had titles such as ‘volunteer’ ‘accompanying person’ or ‘buddy’
Recruiting volunteers
Our contact with Volunteer Ireland provided us with contact with their Dublin South West office and
useful information. Volunteer Ireland support organisations with their search for volunteers and
assistance or advice with Garda clearance, volunteer policy and supervision.
Our view is that the following distinct categories of volunteers might be mobilised in relation to respite
care:
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Transition year school children are already involved in many community service projects across
Ireland and could be engaged with new practices with individuals with a disability attending
community based sports or social activities. We have identified the secondary schools near the
area and note that they key person is the Transition Year Co-ordinator in each school and the
local Education Centre as the main venue for information and briefings.
Transition year children and other school going young people can become involved in home
respite. A 2 hour visit to a home can provide respite/distraction through playing with children,
engaging with young adults playing computer games, trying out hair/nail/makeup styles.
Volunteers from sporting organisations have been mobilised to accompany individuals in their
own chosen sport
Students and graduates intending to enter social work or social care studies are obliged to have
experience of a paid or voluntary activity in the social field. We have identified the educational
bodies providing such courses located near the Dublin South West area.
4
The role of intermediary bodies
Intermediary bodies - public, private or voluntary – play a key role in respite service provision delivery in
the UK, the USA and Canada. The reasons are as follows:
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the introduction of more and more supported and independent living in communities
the widening of choices of respite care expected by families,
de-institutionalisation policies for people with intellectual disabilities
the increase in direct payment or ‘money follows the person’ (MFP) systems of subsidy
Our models and practices show different types of intermediary bodies operate to bring families and
options together, to provide or organise training, to publish directories and to operate information
websites. These include publicly supported community respite councils or community service councils.
The Department of Social and Family Affairs are using Family Resource Centres for the delivery of their
disability integration actions at local level. Sports Partnerships function under the auspices of local
authorities in the case of Sports Inclusion Disability Officers.
5
The New American Respite Law
The adoption of the Lifespan Respite Care Act of 2006 by the US Congress marked the culmination of a
huge lobbying and campaigning effort by hundreds of organisations across the US. Many of these were
led by the 100 organisations making up the National Respite Coalition Taskforce and which was in turn
supported by hundreds more from the ARCH National Respite Coalition. The passage of the Act gives
respite care a statutory basis and separates it out as a distinct and special service in its own right. It
recognises family caregivers in public policy and allows Congress to allocate specific funds to respite
care. $53 million was set aside for 2009 and $71 million for 2010.2
In a broad scale review of respite care across the United States during the lead in period to legislation, a
number of interesting practices were identified. Some of these are described below.3
State of Oregon Lifespan Respite
The Oregon State respite programme aimed to reorient the practice of respite care being provided
according to the medical ‘categories’ of care receivers. The State of Oregon found that such ‘categorical’
provision produced duplication and fragmented services creating difficulties of access for families.
Oregon’s model is based on grassroot and local networks. It is based on what might be called the ‘social
model.’ This means respite care is provided according to need and not according to the type of disability.
Oregon State has promoted intermediary bodies to co-ordinate respite care. They establish start up
support, technical assistance and support to respite networks in different communities. Each network had
to have a leadership council of which 51 per cent of members had to be caregivers such as family
members. Each network maintains a database of trained in-home providers, volunteers, resources and
facilities that provide respite services. The networks match family needs to community resources, identify
gaps, and increase community care giving capacity. The networks are allowed to canvass for other
funding, grants and donations. The networks recruit and train in-home providers or volunteers and
provide information to families on skill levels and backgrounds of providers.
Choice as a model
Each network or centre has a Lifespan Directory which lists the services on offer for that community.
Oregon tries to offer at least ten different respite options:
1.
2.
3.
4.
5.
6.
7.
Care in the home
Care in a respite day centre
After school or weekend activities such as sport
Summer camp or holiday camp
Parent night-out
Respitality in a local hotel
Family barter and exchange systems
2
Public Law 109-442 Dec. 21, 2006 109th Congress
Mina Silberberg (2001) Respite Care: State Policy Trends and Model Programs, Policy Brief No.4 Published by
Family Caregiver Alliance, funded by Robert Wood Johnson Foundation.
3
6
8. A companionship programme/ Big brother/Big sister support
9. Group home or residential facility
10. Crisis or emergency respite care
Oregon considers that local community activities in sports, excursions and arts classes can be facilitated
by:
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Recognising them as valid for expenditure
Identifying an accompanying person
Advocating for the activity to be opened up and made more accessible
Helping with modifications to improve access
For respite care in the service user’s own home, Oregon has a very useful ‘Family Care Book’ with
common sense questions and blanks for families to fill in for individuals coming into their house. It
covers everything from what medication is to be used through to what is the preferred bed time, preferred
snacks, allergies and the names of neighbours!
The Programme has also encountered difficulties. Some families only seek help when it gets to be an
emergency. The mainstream community are not always very aware of the importance of respite care.
Building a strong confident network takes time. Families may be directed to particular resources or
services which do not have the funds or staff to meet their needs. Despite this a number of other States
have followed Oregon’s model, such as Wisconsin and Nebraska.
New Jersey State-wide Respite Care Program
The New Jersey respite programme is a stand-alone programme that is not an add-on to another service. A
part of its funding comes from taxes on gambling in its famous Casinos, a part comes from the Tobacco
industry. It is part of community services as opposed to hospital or residential services. Like Oregon, it
stresses the options that must be flexible to the needs of family caregivers.
It suggests eight options or choices and it is this diversity which has attracted considerable attention to
the programme.
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Companion service of an adult on an hourly basis in the service user’s own home. Companions
were in some instances paid, others were volunteers
Caregiver directed option- funds are provided to caregiver to purchase what is required
Homemaker who comes hourly or overnight and works as a personal assistant
Out of home care in a day centre or social or health programme –social day care or medical day
care
Private nursing by qualified nurses
Adult family care by placement in the home of a trained, approved individual or family
Short term care in a residential facility such as a nursing home or hospital
Attendance at an accredited summer camp facility
7
An early review of the New Jersey Programme found that the most popular option was the hourly paid
support in the home and, at the other extreme; the second most popular option was a nursing home.4 New
Jersey offers a large number of local ‘point of contact’ access to the programme across the State. Its
respite services come under the New Jersey Department of Health and Senior Services.
The programme is targeted at low income families whose resources are such that they cannot benefit from
free services. Cost sharing is operated for clients with higher incomes. The programme offers training to
caregivers and over the years has developed more and more specialised complements to its core services.
The National Resource Center for Respite and Crisis Care Services ARCH5
Many parents in the United States with a child with a developmental and/or physical disability, have been
reluctant to seek respite care unless they were in an emergency or were under extreme stress. ARCH
recognises that from a parent’s perspective, they have genuine concerns about the quality of care respite
services will provide and the training of their staff. A second concern is parents’ belief that no one can
take care of their child as well as they can.
From observations across the US, ARCH came to a number of conclusions about training for paid staff in
respite care provision.
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Staff in respite care need a distinctive or extra training in addition to generic training as a care
giver, care attendant or care worker
Training should emphasise strongly the concept of trust, without which parents will not be able to
collaborate successfully with service or programme providers
Parents should be part of formal training in the form of giving accounts of their personal
experiences and parents allowing respite ‘trainees’ to visit their homes
The concept of ‘family empowerment’ should underlie training in respite provision
ARCH and LIFESPAN wrote an open letter to President-elect Barack Obama in 2008 asking him to
release federal funding for respite care if elected, to include respite care in his plans for health care reform
and to keep to his promises if elected.
Mina Silberberg (2001) New Jersey’s Statewide Respite Care Program: A study of Program Design,
Implementation, Clients and Services. Rutgers University.
5
www.archrespite.org
4
8
‘Too many people who need assistance with activities of everyday life are faced with a
difficult choice. They can move into a nursing home and face safety and quality of care
problems or risk injury or death by staying in the community without adequate
services to take care of personal needs. The President believes that more can be done
to show federal leadership toward ending the institutional bias and more rigorously
enforcing the Supreme Court’s Olmstead decision. We can also build on existing efforts
to encourage states to shift more of their services away from institutions and into the
community, such as the Money Follows the Person (MFP) initiative, which is both cost
effective and humane.’
President of US Barack Obama 2009
9
Canada and Community Living
The Community Inclusion Initiative of Canada 2008 is a partnership between the Canadian Association
for Community Living, People First of Canada and Provincial and Territorial Associations for
Community Living with financial support from the Government of Canada. Its aim is to help
communities become more receptive to people with intellectual disabilities. The initiative builds on the
strengths of existing community associations and the strength of families and people with disabilities.
It provides opportunities for individuals with an intellectual disability and their families to identify ways
in which they can participate fully in the social, economic, cultural and political life of their communities.
Some Provinces focussed on inclusive education, others on employment and yet more on associational
life. The Northwest Territories produced a ‘Social and Recreational Inclusion – A How to Guide.’ In the
Yukon the emphasis was on the Performing Arts, especially dance involving carers, caregivers, people
with intellectual disabilities, young dancers – aboriginal and non aboriginal and theatre artists. In
Manitoba Province, child care centres were able to apply and participate in an opportunity for inclusive
child care. This opened up professional development workshops to those child care centres and others
working with children. Nineteen child care centres changed in how they support children and families.
For the Canadian Association of Community Living Respite Care Options and Resources should be
flexible, professionally qualified in-home and community-based with the introduction of professional
standards for home care workers and increased training for options for formal and informal care
providers.
The Community Inclusion Initiative brought about changes for the participating organisations themselves.
For the Canadian Association of Community Living it was a revitalisation and re engagement with its
own grassroots members within a national framework. For People First of Canada it was a chance to
focus on unnecessary institutionalisation of people with intellectual disabilities and strengthened their
voice on the national stage. Sheenagh Morrison lives in Victoria and has told her story to Inside Voice –
the Newsletter of Community Living British Columbia.
My name is Sheenagh Morrison. I live on my own. I am in the Supported Apartment Living Programme
through Community Living Victoria… I get support from the community living support workers with
cooking and cleaning. There are ten of us in the supported apartment living programme. We have dinners
together, we go to the movies and we have games nights when we play board games together. I also love
hanging out with friends and going for coffee or a meal and walking dogs with my exercise buddy from
Recreation Integration Victoria. My exercise buddy and I meet once or twice every week and we have
become friends. When it’s cold we go to a movie or bake cookies. I also work at Beacon Hill Children’s
Farm. I started off as a volunteer and now I am paid staff. At the farm I do everything from cleaning out
the barns to delivering baby goats. I worked hard to reach my goals of living independently and finding
paid work and my dreams came true.
2008
10
Whole Family Respite Information
The Canadian Association for Community Living6 has published their own very complete resource guide
for organising workshops on respite care for families which include a family member with an intellectual
disability. The 72 page guide was written because of the difficulties faced by families in navigating a
complex system of respite entitlement and options and their need to have clear, easy to consume
information. The guide furnishes advice from A to Z on the costs of a workshop, how to draft an
invitation, how to choose speakers, how to facilitate, how to start the discussion, the use of power point
presentations. After attending a workshop it is hoped that family members will be able to navigate
themselves through a complex system of respite options.
Emphasis is on individual personal planning for the whole family with choices of options. The
importance of individualised and personalised solutions for respite are strongly underlined. Families are
helped to form their needs and opinions in a fashion that enables them to make choices from what is on
offer.
The guide suggests that families and advisors should consider the following four classes of options:
Types of Funding and Support
Agency-based
Individualized funding for direct
purchase of supports
Family sharing/alternative
Community capacity building
The guide suggests that families choose broadly between in- home and out-of-home options:
Agency Based Respite
Out of home: group camp
Out of home: host family
Out of home: support worker
Out of home:day respite
In Home
6
Canadian Association for Community Living (2006) Real Respite for the Whole Family A Resource Guide for
organizing and delivering a family workshop on respite care for individuals with an intellectual disability and their
families. Email: inform@cacl.ca
11
Families are encouraged to self assess their own needs so that these can be clearly articulated in a proactive way. They are encouraged to discuss the options with all family members. Individuals with
intellectual disabilities may not want to leave their own home. Family members may not want an outside
caregiver in their home. A list is provided to help family members formulate their needs:
Family decision making plan lists options to plan respite for/with family member and advisors
What kind of support would work for you?
[ ] Someone comes into my home
[ ] My family member goes to their home
[ ] My family member is taken to age appropriate activities
[ ] I receive money to pay the caregiver directly
[ ] A day programme
[ ] A camp
[ ] A host family
[ ] I could pay a relative
12
Northern Ireland
The Northern Ireland Assembly got news of plans for respite care for people with intellectual disabilities
in December last year.7 Naomi Long (Alliance Party) asked Minister for Health, Social Services and
Public Safety Michael McGimpsey (Ulster Unionist Party) to report on respite care.
The Minister replied that spending:
‘…Will benefit children and adults with disabilities and among other things, will enable health and social
care trusts to provide an additional 200 new or enhanced respite care packages over the next three years
for people with learning disabilities and for their families and carer. It is anticipated that by 31 March
2011, those additional packages will have benefited 800 people8…The Department also considers areas
such as flexible, short term respite provision; day activities; residential respite care and domiciliary
support. Those areas must be addressed in order to provide comfort to carers who have, as Mr Craig
said, real concerns about the future.’9
In February this year, the issue of respite was raised again and the Minister said he was spending £33.0
million over three years on care specifically on a programme in the area of learning disability, a part of
which would be spent on new or enhanced respite services. A part of the repeated raising of questions on
respite arises from the campaign of Carers Northern Ireland. Their research showed many families were at
breaking point, had serious financial worries and were frustrated with bureaucracy. Their 2008
Conference had rallied a considerable number of carers into action.
Despite the references to a range of respite care services, on 11 March this year, the Minister opened a
large learning disability respite residential centre in Dungannon. Woodlawn House is designed to offer
respite care for 50 adults with a learning disability at a time, from Armagh, Newry, Dungannon and
Mourne areas. It is modern with individual en-suite rooms. The catchment area and the size of the facility
is such, that some adults will be quite a distance from home.
7
Northern Ireland Assembly Debates 8.December 2008, 3.15 pm
There are 185,000 carers in total in Northern Ireland. The packages will relate to 0.4% of them.
9
Jonathon Craig (DUP) and David McNarry (UUP) asked follow up questions.
8
13
Young Carers Respite
Northern Ireland
Crossroads Caring for Carers Northern Ireland is running a special respite programme for young people
aged 5 to 23 whose lives are affected by caring for a family member who has a long-term illness or
disability or mental health issue.10 Crossroads is a registered charity specialising in home based
(domiciliary) respite care. They were the first organisation to establish this form of respite care in
Northern Ireland. Crossroads Caring for Carers is part of a wider lobby of service providers seeking to
improve the status and services of carers in Northern Ireland along with Mencap, Citizens Advice,
Princess Royal Trust for Carers and many more.
The service offers opportunities to children and young people to avail of respite to go out with their
friends, take part in school activities or do sport or just do their homework. The scheme operates in four
locations in Northern Ireland in Ballymena, Lisburn, Belfast and North Down. The respite service is free
and Crossroads do their own fundraising for it.
The thinking behind the initiative is that young children and teenagers in care-providing situations, need
support to get social outings, need some befriending outside the immediate family and can need practical
help themselves to cope with the responsibilities which fall upon them.
Access to the programme is by a school nurse, a social worker, a GP or by self referral. The Programme
offers flexibility in that someone can come to the house to help out with shopping or cleaning up, or the
service offers someone to talk to or offers a respite break for the young person to get out on their own for
a few hours. For very isolated young people, there are organised activities such as going to the cinema
with other young carers, which take place once a month. In the past Crossroads has been able to
accompany young people and children to Disneyland or to Lapland to bring some sparkle into their lives.
The highlighting g of young carers has begun to be incorporated into service planning for children and
young people in Northern Ireland and is increasingly seen as a children’s rights issue and not merely a
subset of ‘carer/disability supports.’ Research on identifying the numbers of young carers and their needs
is being undertaken
10
See www.crossroadscare.co.uk/services and tel: 00 44 28 91814455
14
Ulster Council of GAA moves in disability awareness
The Ulster Council of the GAA has taken the first set of steps to advance the social inclusion of children
and young people with disabilities into the mainstream of the life and community of the GAA. Their
approach was to move beyond inviting people with disabilities to attend matches as spectators and wear
county jerseys. The goal of the Ulster Council was to develop membership, participation and training in
sports. Ulster GAA included the important work around inclusion within the work programmes of their
Regional Development Officers. These coaches link with clubs and the special schools and have provided
support where possible. It does require further resources. The project will move forward again as Ulster
GAA continue to build their relationships with the Active Communities GAA coaches. These GAA
coaches will actively engage with the target group who are employed through a partnership between
Ulster GAA and Local Authority consortia.
When people with disabilities played a mini game at half-time during an Ulster semi-final, the crowd
were astonished. A BBC producer who was present gave it full BBC coverage and this gave a huge
platform to disability awareness. The Ulster GAA knew that children with disabilities had been missing
out. This was clear from their work in Primary schools, where they saw that children with learning
disabilities or who were Deaf or Blind, were not getting enough participation opportunities. The first step
they took was to run a simple and short course for Coaches. At the course, the coaches got presentations
on the different types of disabilities that young people might experience and how to conduct training that
was appropriate to the level of participants. Regional Officers of the GAA would then roll out actions
across the region.
The coaching is at a very preliminary stage. It involves children and young people learning to be agile and
to develop balance and coordination. These lay the basis for a form of ‘physical literacy’ for participation
in sport. This is just one element of an overall work programme of the GAA to address special needs and
promote fuller community inclusion. While the GAA are involved in competitive sports, the impulse
behind these initiatives is participation rather than competition. The Ulster Council would like to develop
more comprehensive and strategic activities in the field of disability inclusion and community
development. They would like to create more outreach opportunities and engage clubs to offer
opportunities to people with disabilities. This would involve dedicated disability officers within the
Association and more specifically within the club environments. Ulster GAA will continue to lobby the
GAA at Central level and the authorities in the North to ensure that this moves higher up the agenda to
ensure inclusion and participation in Gaelic Games by All. Initial pilot projects have been very successful
and the potential untapped. The Ulster Council is determined to press on. It is what people with
disabilities want. It is what families want.
Contact
Ulster Council GAA
8-10 Market Street
Armagh
Co Armagh BT61 7BX
Tel 028 (048) 3752 1900
Web: www.ulster.gaa.ie
Email: info@ulster.gaa.ie
15
Ågrenska Sweden
In Sweden access to respite services is a legal right for families with children with disabilities, mainly
aimed at giving parents and caregivers relief from caring on a day to day basis. The law dates back to
1993. The Support and Service for Persons with Certain Functional Impairments Act, 1993 was adopted
and is implemented at a local level by municipalities. Unlike more recent Swedish legislation which
applies to all disabled persons as citizens, this early law was based on medical categories. It applied to
families with children who were mentally retarded 11 or were autistic or had a condition resembling
autism, acquired brain injury and certain other enduring impairments. Section 9 of the Act provides for
short stays away from home. In 2007 about 10,000 individuals benefited under this provision. Families
could request entitlements under the Act and if refused there was a right to appeal at a County
Administrative Court against such a decision. The Act has been under review and the outcome of the
review was due in 2008.
This short description of the statutory environment is a backdrop to the respite service offered at
Ågrenska outside Gothenbug is Sweden. Ågrenska is a private body and has the status of an NGO with
Consultative Status at the UN Economic and Social Council. It was established prior to the 1993 law and
celebrated its 20th Birthday in 2009 with a visit from the Swedish Queen. The entitlement to attend
Ågrenska is made by a decision of the local municipality. The municipality puts out a tender for bodies
which will supply respite care under the law. Centres such as this are approved for public provision.
An interesting feature of their respite care is that it is offered in some instances all year round. For
example the young people’s Summer Camp is organised in such a way that the young people come to the
Ågrenska Centre at weekends once a month and engage in a variety of recreation activities. The same
individual young people come on the same weekends and get to know each other. This group is the basis
of week-long Summer Camps among young people who know each other, know the staff and are familiar
with the Ågrenska Centre. The Summer camp can be the first experience of being away from home on
their own, so initially younger children attend on a day basis and older children stay over. Once enrolled,
a young person may attend Ågrenska for several years. A considerable emphasis is put on friendships and
trust.
11
Word used in the law at that time.
16
Sports and People with Disabilities –Mayo moves to ‘social model’ of participation
‘Since the formation of the Sports Partnership in late 2004 Sport for All has been at the heart of our
message to the people of Mayo’ says Charlie Lambert –Sports Co-ordinator for the Mayo Sports
Partnership, adding that ‘the ground breaking moment was the appointment of a Sports Disability
Officer.’12
The Mayo Plan
The Mayo three year plan for increasing the involvement of people with disability in sport is now in its
second year and has taken off, not just in Castlebar, Ballina and Westport, but in smaller towns such as
Belmullet and Claremorris and out across this vast County. Before launching their plan, the Mayo Sports
Partnership identified a number of important deficits:

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A narrow range of choices in sport in Mayo
Only half of organisations received people with disabilities and some feared to do so
People with disabilities had a lower than average experience of sports activities
Coaches and Committees lacked sports disability awareness
Moving to action
Sports Inclusion Disability Officer, Ray McNamara, was determined to open up new opportunities for
Mayo children and adults by involving existing sports facilities/clubs, existing disability service providers
such as the Irish Wheelchair Association, REHAB and Enable Ireland. The emphasis was on participation
sports rather than competitive sport and on activities which could be sustained over time rather than oneoff spectacles. The plan involved maximising the number of different kinds of volunteers so that the
wider community could contribute to sustaining activities and personally experience social inclusion.
Pitch-and-putt was a sports activity that took off well, especially for participants who had experienced
mental health difficulties. It started off tentatively with 12 community volunteers and 12 participants from
the adjoining Castlebar Training Centre. Volunteers came from Castlebar Youth Centre and the wider
community. Later it will move to a Pitch-and-Putt course where volunteer ‘buddies’ will be invited from
regular golfers to accompany participants.
Westport Leisure Park was the first Leisure Centre to win a National Disability Authority award for
accessibility. It offers gym activities, inclusive gymnastics and swimming to participants with disabilities.
Mark aged 27 and with Down Syndrome attends gym activities. In his own words he says:’ it has helped
me to do an activity I really enjoy and am good at.’ 13 The 25 participants from the Westport area in the
Gymnastics activities have a professional gymnastics coach. It has been especially popular with people
with intellectual disabilities who attend the Western Care Carrowbeg Enterprises group.
The role of volunteers
12
13
Conversation with Charlie Lambert 27.07.09
Mayo Sports Partnership Report 2008-2009 unpublished, cited with permission.
17
Carefully recruited volunteers have played a central role in Mayo’s roll out of their sports inclusion plan.
Disability Awareness Training is co-ordinated for volunteers and coaches. Achill Island partners hosted
two disability awareness courses for 15 participants in 2008. Training is provided in formal modules
which are developed by Coaching Ireland within the National Coaching Development Programme. Some
volunteers accompany participants during the activity, some engage in the sport themselves such as
swimming helpers and others are available as back-up. As part of a pro-active inclusion policy
Sports/Community clubs are strongly encouraged to attend disability awareness training when applying
for grants to the Mayo Sports Partnership
The role of Child Protection in sport is regarded as very important by Mayo and applies to all volunteers.
Volunteers come from the wider public, from existing disability service providers, from sports and youth
clubs and from transition year school students and their teachers. Having a full time disability sports
inclusion officer with a mobile phone contact makes the mobilisation of specific local groups of
volunteers more effective.
Promoting participation in sports
To promote awareness, widen choices and stimulate participation, Mayo Sports Partnership has
established a special County Open Forum to promote disability and inclusion. The Forum provides moral
and practical support to projects and facilitates exchange of information on the different initiatives.
Awareness initiatives have taken different forms such as local Sports Taster Days in Ballinrobe or a
Sports Ability Day in Belmullet with sports and games for school children. A children’s Saturday Club
has been established for every third Friday for children with disabilities and including family members
such as brothers or sisters. This one and a half hour club is provided free of charge to all participants and
it is hope to run this club fortnightly in Autumn 2009. In Summer 2009 two week long inclusive Summer
camps were organised in Castlebar and Claremorris including children, family members and friends.
Mayo’s success
Mayo does not use the word mainstreaming. Their strength is their belief that given support and training,
ordinary members of sports clubs, facilities and organisations will open up and adapt themselves to
receiving people with disabilities into their clubhouses, gymnasiums and sports pitches on a long-term
and sustainable basis. Their programme carries the assumption that people are basically generous and will
offer their time and effort to make change work. Having a Sports Inclusion Disability Officer has enabled
Mayo County Council to convert occasional well meaning opportunities into a programme of supported
choices.
18
Scouting for All
Scouting is one of the global and long standing voluntary organisations that have been coming to grips
with reaching out to young people with disabilities and partnering itself with organisations of or with
people with disabilities. Scouting is suitable for consideration as a leisure activity for children and young
people with disabilities because:

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

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
It is a mass organisation with large capacity for engagement at local level
It is open to young people of all backgrounds and sexes
It has identified children and young people globally with autistic spectrum disorder as among
those who can be included in scouting
It has identified children and young people globally with an intellectual disability as among those
who can be included in scouting activities
It has already published international and national guidelines on scouting for people with
disabilities
It already has published guidelines on safeguarding and child protection
In 2008, the international office of the World Scout Bureau in Geneva published Guidelines on Scouting
for People with Disabilities as part of its campaign of Scouts-Creating a Better World. The 20 page
document identifies how scouting can contribute to the lives of children and young people with a
disability. The views of founder Baden Powell are quoted from 1919 when he argued against over
protection and paternalism towards children who were blind or deaf and that they do not need ‘more
special tests and treatment than is absolutely necessary’. 14 The Guidelines recommend not making too
many demands on parents as scouting ‘may represent a rare opportunity of respite from their daily caring
duties.’ The international guidelines were edited and adapted for Ireland by Scouting Ireland’s National
Youth Programme Committee as a 12 page document Scouting for All – Reaching Out. 15 This documents
serves as an advisory for Venture Scout groups (age 15 to 17 years) who undertake special initiatives. The
document was part of a broad initiative to open up Scouting Ireland to children and young people with
disabilities. This decision was approved by the 2nd Venture Scouts Moot Ireland 2008 and the 4th National
Youth Forum, Ireland. The programme theme for Venture Scouts 2008-2009 is Scouting and Disability –
Accessibility and Involvement. A seminar on the topic was organised in 2009.16 The goal has been to
prepare and promote the accessibility of scouting to people with disabilities and to provide guidance and
resource documents to those who intend to take mainstreaming to the next step.17 To this end Scouts
Ireland has produced a disability awareness resource pack for scout groups to explore their attitudes and
practices in relation to disability.18
14
Geneva, 2008,p.7
National Venture Scout Programme Focus: Scouting for People with Disabilities – Accessibility and Involvement,
Dublin, 2008
16
Steven Cull, Programme Commissioner Venture Scouts
17
www.scouts.ie/venture-scouts
18
Scouting Ireland (2008) Venture Scout Resource Pack Scouting and Disability: Accessibility and Involvement
2008-2009
15
19
Scouting Ireland 19
Scouting Ireland has developed a low key approach to disability. This is part of learning from past
experience. During the 1980s, Scouting Ireland organised one or two big events attended by several
hundred young with people with disabilities along with several hundred scouts without disabilities. These
one-off and spectacular events were not sustainable and did not generate involvement in local scout
groups, despite the praise and attention that they attracted. After consideration, the practice was
discontinued. The integration of young people with disabilities now happens at grass roots local level.
There are about 30 Scout groups in the South West Area.
Scouts are organised in relatively small district groups within sub county groups. There are scout groups
in Crumlin, Harolds Cross, Walkinstown, across Lucan, Celbridge and Tallaght/Firhouse and along the
Dodder River. In the group, the Scout Leader organises the young people into patrols of 6 to 8 children
with a patrol leader aged perhaps 14 or 15 years old. The groups most likely to have young people with
disabilities as members are those which are located close to service provision centres such as Clontarf
(Central Remedial Clinic) and Celbridge (John of God).
The typical system for joining the scouts is when an existing member brings another child along one
evening – a child from school, a child from play, a neighbour. It is an informal system. It is not the policy
of Scouting Ireland to ask local Scout Volunteers to seek the inclusion of specific categories of
membership. Individual Scout Leaders can be very enlightened and can develop inclusive approaches
and practices. The 9th to 10th Aughrim Street Group for example, has in membership 2 young people with
Down Syndrome, a member with Attention Deficit Disorder and a child who uses a frame for movement.
Other scout leaders might have some fear and anxiety as to how and whether they could cope with a child
or young person with a disability or a long standing health condition.
Scouting Ireland has a policy of openness and integration of all young people. However, Scouting Ireland
would not claim and does not claim to have great numbers of young people with disabilities in their
membership. Integration and membership is controlled and implemented at local level, so contact and
discussion with local leaders in necessary. Scouting Ireland’s National Office is very happy to advise and
encourage their leaders and parents to work together for the development of young people, they will
advise and give back up when asked, and can refer leaders to other Scout troops, whose leaders have
addressed similar issues.
_________________________
Scouting Ireland National Office
Larch Hill
Dublin 16
www.scouts.ie
19
The views and opinions in this text are those of the author and should not be attributed to Scouting Ireland or any
of its associated groups.
20
Deaf Scouts20
An interesting example of scouting in Ireland is the 191st Dublin Deaf Scout group run for Deaf children
and young people by Deaf adults. At the specific request of the scout leader and young people, separate
meetings were organised where Irish Sign Language is in use. The Group organised an International Deaf
Scout Camp in Dublin in 2006.
Our group has four sections catering for a membership of over 35 young Deaf people. Most of the
members are from Dublin but many scouts and cubs are resident in St. Joseph’s School for Deaf Boys and
St Mary's School for Deaf Girls both in Cabra, and are from every part of the country. We have a leaders
team consisting of all Deaf and one hearing.
Again our group caters for Deaf boys and girls from 6 to 21 years under the guidance of Deaf adult
leaders. The leaders are Paul Moore - Group Leader, Kevin G. Mulqueen – Scout Leader, Karol McGuirk
and Paula Moore – Assistant Scout leaders, Brenda Dunne – Beavers Leader / Assistant Cubs Leader,
Niamh Gannon – Cubs leader, Donal O'Hannigan – Group Chairperson. We have a policy of total
communication although Irish Sign Language is the favoured means of communications with many of the
members.
Today we seek better access and opportunities for Deaf adult of Deaf children for Deaf Scout Group
especially in their education, communication, spiritual, and social and activities events. We also are
seeking better service and life for the Deaf scout in the wider region and to participate along with other
scouts at the national and international levels.
The full scout program and scout method is slightly modified by the young people and Leaders to suit the
members. They try whenever possible to participate with other scouts in competitions, programmes,
parties and anything else that are on offer from a national and regional level. The scout group itself, if
necessary, modifies the activity so members of the Deaf group can fully participate.
Examples of activities:
Spring / Winter Hiking Weekend
Weekend Training Camping
Regional Shield Competition
All Ireland Camping Competition.
Day Outings to historical places of interest
12 Days Camping Holidays in Ireland or abroad
Local and regional competition
Ten pin bowling
Cinema outing with subtitles and a lot of more!!!!
20
This page has been extracted and slightly edited from the website of the 191 st Dublin Deaf Scouts at
www.dublindeafscout.com
21
Raphoe – Steps to Mainstreaming Programme in
Donegal21
.
Background to the programme
Raphoe Family Resource Centre has been running a special ‘learning-participation’ group for people with
disabilities in the Donegal border village of Raphoe for two years and the Department of Social and
Family Affairs have approved funding for a third. The majority of participants in the group may be
described as moderately to severely intellectually impaired, or having learning or concentration
difficulties or additional mental health issues. Some have more than one disability. Of the group of 13,
which started out in the Steps to Mainstreaming Programmes in Raphoe, Co. Donegal ten stayed to
receive certificates for completion. Two have since left, one for personal reasons and one girl has started a
catering course away from home. The group meets once a week throughout the year for the whole day
including a hot lunch in the café next door.
The co-ordinator of the Resource Centre stated that this community participation programme was opened
up through ongoing support and a launch pad provided by the Disability Equality Specialist Support
Agency -DESSA. The Programme is called ‘Steps to Mainstreaming.’ Advice and training are provided
to run the programme.
Description of the participation programme
In Raphoe, the centre co-ordinator described the programme as ‘value for money’. He believes each
participant is contributing to an enriched experience in the Family Resource Centre. He notes that as the
Programme is run outside of the house or residential centre the participants are living in, it is more
beneficial to them. The Family resource Centre director considers individual outcomes for each
participant as essential in planning the programme. Some participants live in households where siblings or
parents also have a disability (Autism Spectrum, Parkinson’s Disease, learning disability).
Activities in Raphoe include role-play, golf, karaoke, music, first aid, indoor barbeque and Christmas
shopping. One woman with a physical disability reported on the difficulty in accessing education in the
past. She stated that she: ‘can catch up on skills and education in the group.’ Voter participation was
incorporated into the group through allowing each participant to vote on their Christmas shopping
location. However, when the group were asked to discuss work and training the group described the
programme as ‘more relaxed atmosphere than work, not as tense – or sitting in a quiet room’.22 The
group appeared to be a place for some of the members to express themselves. The facilitator stated that
for one male participant the group session provided a sanctuary every week.
DESSA promotes the employment of people with disabilities to run their Programmes. A person with a
disability facilitates the programme in Raphoe, the group were able to relate better with people with
disabilities and involve themselves in the programme. At the closing stages of the Programme a ceremony
21
This is an edited version of text from a larger report by Ralaheen submitted to DESSA in 2009 and which will be
published later in 2009.
22
Term used by service user for day centre location used for participants with challenging behaviours.
22
was organised, where participants who completed the programme were awarded with a certificate and
photographed.
Funding
The Family Resource Centre provides individual travel to the programme for each participant. This is
usually through a personal taxi service. Raphoe FRC estimates the cost at over €2,000 a year. Many
voluntary organisations and not-for-profit organisations have fleets of vans, which are idle some of the
day and are not shared with other organisations, despite public investment in those same organisations.
The use of cabs, however, means that people are not being ‘bussed’ into centres involving long journeys .
Costs for Personal Assistants are built into funding applications to the Department of Social and Family
Affairs Regional Office. This ensures participation of people with disabilities at meetings. In a third
application for funding Raphoe has incorporated reasonable accommodations to ensure that if a persons’
condition deteriorates over time, they will be catered for.
Responses from participants
Equality of participation is stressed with importance placed on decision-making for individuals in the
group. A participant described the setting for the Programme as ‘a nice place’. One participant
commented on the feeling of ‘belonging’ in the group and described each member of the group as equal,
adding: in the time spent in the group, others don’t talk over you and include you.
Programme Outcomes
The facilitator reported that many attending the group are upset at how they are being treated outside of
the group and this rejection can impact on a person’s life. The Family Resource Centre provides a
framework of support and information when an individual leaves a residential service or home.
Raphoe, with a very experienced facilitator-tutor, is successfully imparting participation skills to
members. A part of this is done through practicing role plays/micro drama, such as how to meet a doctor
to renew a prescription, how to argue without being aggressive or overly timid, how to hold on to your
argument. This is recorded though a DVD. Concepts incorporated in the drama production included
respect, advocacy, and confidence. Two members of the Raphoe Steps to Mainstreaming Programme
now sit on a Family Resource Centre management board. Another participant has taken on a part-time
work placement in a chemist. Others in the group reported becoming volunteers since their participation
in the programme.
23
The Walkinstown Association – New Thinking
In 2008 the Walkinstown Association was able to offer 23 participants an opportunity to have weekends
away in places such as Wexford, Carlow, Wicklow, Meath and Leitrim. 23Walkinstown service users are
able to identify where they would like to go and participants could have a weekend to which they could
look forward. Now with budget cuts, respite care 2009 has only minimal funds to replace the 480 hours of
respite care delivered in 2008. However, a positive development in 2008 was the opening of a Community
Inclusion Service and a post of Community Inclusion Coordinator.
Community inclusion is opening up a new range of social activities in the course of which service users
become community contributors. In Inchicore, volunteers from the Walkinstown Association services
maintain the large flower and plants in pots which have placed outside shops to enhance the district. This
involves frequent watering, many visits to shops to fetch the water and cleaning up the plant boxes. The
thinking behind such actions slots in well with Dublin City Council’s community development and social
inclusion ethos and perspectives. Community Inclusion, for Walkinstown, involves not just receiving
services as users, but giving back to the community in a reciprocal exchange. The principles of mutuality,
respect and reciprocity underlie this 2008 initiative.
Cooperation with local authorities like Dublin City Council, has opened doors for the Walkinstown
Association. This is manifest in the wide range of local networks, voluntary organisations and community
development actions, on which the Community Inclusion Coordinator can draw. It also provides an input
into city policy through contact with the Council’s Strategic Policy Committee and City Development
plans. At a more practical level, service users are now joining in the city historical walks organised by the
Council, using City libraries and attending VEC colleges. The Walkinstown Association can begin to be
seen actively by others as part of the community and not merely the ‘disability sector.’
The idea of participants (service users) acting as contributors to community life and community
development is deceptively simple since it involves a considerable switch in thinking which incorporates
the service user as a contributing citizen of their urban environment. Dublin City Council is not so much a
partner in Walkinstown’s initiative, as a facilitator of active citizenship for all its residents regardless of
ability.
23
See Walkinstown Association Annual Report 2008, p16.
24
…and on Saturdays – Cheeverstown has ideas
The Saturday morning club at Cheeverstown in Templeogue, South Dublin is a welcome respite for
parents and fun for children in the five to ten age group. The club is for children without disabilities and
with disabilities – mainly intellectual disabilities - who use several service providers in the area of west
and south Dublin. The fact that it is held on the Cheeverstown campus has got over several hurdles such
as a suitable venue and insurance, which arise when other facilities are explored. The club is almost selffinancing through a fee of €60 per term charged to parents. `
The Saturday club is supported by a large group of young volunteers who regularly offer their time to
Cheeverstown and who are familiar with the Cheeverstown venue, have already met some of the
participants and have had a briefing on disability issues. A number of the volunteers are young women
and men from local schools, who have already helped out during their transition year, or are relatives of
Cheeverstown staff or who know one of the families whose child is attending a disability service. The
Cheeverstown ‘panel’ of volunteers is generally oversubscribed and besides teenagers, includes staff or
teachers acting in a volunteer capacity. There is a core group of about 34 volunteers per year and with a
wider ‘panel’ rises to 50 in number.
“We’ve been running integrated summer camps for 10 years now and they work very well. We
link in with the local schools and children come back again and again,” explains Paula
Coughlan, recreation coordinator for Cheeverstown House which offers services for people with
intellectual disabilities.
“We find that at first the children who don’t have experience of children with disabilities are a
bit stand-offish but by the end of the week, they are completely integrated, helping the other
children in the camp.”
In the longer term, staff at Cheeverstown House would like to see children with disabilities
integrated into mainstream summer camps.
Cheeverstown in Irish Times July 7 2009
Cheeverstown was pleased that it could partner a Football Association of Ireland (FAI) -South Dublin
County Council (SDCC) one week camp with 24 children with intellectual disabilities and 24 volunteers
who came from Cheeverstown. It was provided free of charge thanks to the Council and volunteers. The
programme ran for three three-hour days per week and the children found it great but exhausting. In 2010
the partners hope to integrate the camp into the mainstream of the FAI and the Community where it will
join with the experimental wheelchair football which also proved attractive to children.
25
In the evenings, Cheeverstown have launched a Wednesday Club for older teenagers and young people
and a Thursday Dance club which runs all year round and is popular with teenagers; both boys and girls.
It is supported by volunteers and there is a framework of rules for appropriate and respectful behaviour
between couples which is maintained by the volunteers- despite considerable difficulties in doing so.
Indeed interesting activities for teenagers in the 13 to 16 age group is one of the gaps in leisure
opportunities for young people with a disability. Maintaining a balance between boy and girl volunteers is
considered important in this regard.
According to Cheeverstown, facilities for leisure and sport are opening up, bit by bit. One of the biggest
obstacles to the opening of doors is fear-fear of the unknown, fear of disability, fear of not knowing how
to react. Such fears are being overcome by leisure facilities and clubs organising Gymboree at Spawell, at
Playball in Terenure, at the GAA grounds in Ballinteer and in an Art programme in Templeogue. The
demand for Summer camps for children with intellectual disabilities or with Autism would justify
opening up at least two more Summer camps in Dublin South West in 2010.
26