Friday, April 28, 2017
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From a Service perspective what would make a difference?

  • People with Intellectual Disability have a right to become parents
  • That right brings a responsibility to accept support and help where needed
  • Services should provide support where gaps exist and everyone should work together
  • Assessments should highlight strengths
  • All parents need help.

When people ask us as what we do as workers in services for people with Intellectual disability, in general we explain our role as ‘supporting’. That’s what we do; we support people in every area of their lives, ‘from cradle to grave’. We want people to do normal things, to attend school, to socialise, to work, and overall to participate fully in their communities.

When it comes to supporting people to parent however, it’s a bit different. Expectations and attitudes change, fears take hold and somehow we become less enthusiastic.  Every agency that supports people with ID advocates the fundamental right of people to become independent, to take risks and to make mistakes. However, when people we support want to, or become parents, this philosophy inadvertently becomes less prominent and invariably moves to a culture of child protection, restriction and risk aversion.

Many years ago, we had experience of working with a couple both of whom had ID. Like many others, they had contact with services as children but ‘drifted’ away as adults. Almost ‘despite’ services, they had a family, but over time came to the attention of the HSE’s child protection team, now TUSLA. Their children were taken into care, and the only opportunity for contact was through weekly access. We were asked by TUSLA to help the parents seek ‘training and employment’ opportunities so that they might become better role models for their children. The parents’ overwhelming need was to be reunited with their children and they consistently asked one question “What must we do to have our children back?” Consistently TUSLA’s response was “demonstrate competency”.
So we agreed to support the parents to learn parenting skills using a multidisciplinary approach involving Social Work, Psychology and frontline Social Care Workers. We helped them practice, to role-play, to model, to anticipate, to plan, and to reflect but their only real opportunity to ‘demonstrate’ was their weekly access visit. This two-hour ‘window’ became the sole opportunity and a microcosm for the parents to show their competency and learning. Over time however, each access visit became a test, observed and assessed by TUSLA childcare staff. Despite the intensive support before and after, each access visit became a disappointment, a failure to demonstrate the necessary competency and eventually, over time, they lost heart.
In one sense, these parents were lucky – lucky that they got good legal support to decipher a most complex legal system; in retrospect, it was never going to work. Weekly access with small children is an extremely emotionally charged event for all concerned, and any parent would be challenged to demonstrate the required skills, especially under the watchful eye of well-meaning child protection staff. In such an environment, it is difficult for competency to flourish, but the expectation in the first place was unrealistic and essentially flawed. The parents did not have support during the access visit and therefore inevitably they struggled.

As with all the people we support, we fill gaps with natural, paid and volunteered support that helps people function and live the lives they choose. Assessing people without these supports is similar to assessing someone with a physical disability without their wheelchair.
More importantly, it could not work because of the conflicting responsibilities that exist between us, as workers in a Voluntary body and those in a child protection agency.

Although we all share a child protection mandate, our mission is to ‘enable’ the parents requiring opportunity, and opportunity creates risk. This inevitably looked like we were willing to compromise child welfare and created an understandable and ongoing conflict with TUSLA’s responsibility to protect and effectively ‘police’ such cases. The risks were too great, and while we could minimise them, we could not eliminate them. In the general population, we get an opportunity to learn somewhat ‘on the job’ when it comes to parenting, with timely advice from family and friends. People with ID learn better when training is ‘on the job’, but this facility is often denied parents with ID because of the risk involved with children.
More recently, we had a role in supporting a lone parent mother with ID. Although her siblings received supports from us, this mother had lived very independently. Her pregnancy evoked an understandable concern from her GP and a referral to both our agency and Child Welfare.  On this occasion, we hoped to keep mother and child together and work with TUSLA to create a model that would safeguard both mother and child. We formed a good working relationship with involved parties. So, what could be done differently this time?

From early pregnancy onwards, we supported the mother to attend pre-natal appointments, explore housing and income issues and family support availability, and to consider the responsibilities and challenges that go with parenting. Mother was extremely receptive to support and aware that child welfare may have concerns. Her parents were not in a position to help for various reasons.  Ideally, she wished to live with her baby in a council house located between her father’s home and that of a very supportive neighbour, who had been a support since childhood. She was also willing to consider an extended family support option. These were considered at inter-agency meetings with TUSLA, and it seemed like a good support foundation was developing between agencies. Importantly a sense of ‘trust’ existed. However, a premature delivery prompted an emergency response, a voluntary care order, and suddenly mother and baby were placed in a temporary fostering situation.

A lack of foster families meant the mother had to live away from her local community. Significantly, however, she was accommodated with her baby in the foster home. We advocated that this foster family would become a supportive learning environment, where mother and baby would be considered as a unit. TUSLA agreed. Mother’s wish to live alone with her child seemed to have real prospect provided we could develop appropriate supports. Once again however, we were presented with the familiar challenge, ‘demonstration of competence’.
Proving competency became difficult. Tensions developed between the natural mother and the somewhat older foster mother, with the former contending that she was not given sufficient opportunity to demonstrate her ability. The foster mother on the other hand suggested that there was a lack of motivation from the natural mother. Again, TUSLA began to assess mother’s competence, without support, in the foster home.
The aforementioned and understandable conflict between our role as parent advocate and TUSLA as child protector began to reappear. In an effort to ‘neutralise’ our role, we prompted mother to engage the National Advocacy Service who allocated a personal advocate.
As a pilot and by way of advancing mother’s wish, we reached agreement with TUSLA to allow mother and baby move to one of our residential houses one weekend each fortnight. The house was staffed by women who had young children themselves. A different perspective began to emerge and staff reported positively on mother’s capacity to parent with support. Gradually the supportive neighbour became involved and began to replace staff. Real possibility began to exist, until suddenly a child protection concern arose and a breakdown of trust occurred between mother and the concerned neighbour. The project came to an abrupt ending.
When we support people in other areas, for example in employment or a new activity, we accept the risks involved as a learning opportunity. Parents in general also take calculated risks with their children in order to promote growth and independence. Understandably, child protection agencies are extremely cautious about risk with children in care. It is this reality that ultimately brought this pilot into an abrupt ending, as child protection services are naturally conditioned to be risk-averse.
One last possibility would have resembled the traditional residential care model where potentially, mother and child would live in a house supervised by care staff.  This however, was deemed inappropriate by TUSLA as staff consistency could not be guaranteed and therefore against the child’s best interest.Today the fostering situation remains the only reliable option despite mother’s protestation.
This environment, while providing security for the child, continues to evoke mother’s concern that she is not given sufficient responsibility in parenting, and consequently she experiences disincentive. The foster mother on the other hand continues to report disinterest on mother’s part. Both are valid but there is inevitability about mother’s apparent apathy arising from the vicious circle in which she finds herself.  She has no goal, no incentive and no realistic prospect outside foster care. Inconsistent staffing in TUSLA’s Social Work departments adds to her plight.

Tim Booth, former Professor of Social Policy at Sheffield University, has spent a career researching the challenges facing parents with ID. He refers to the failure of services to bridge the support gaps that exist for parents with ID and suggests that professional practice and service organisations undermine such parents and heighten their vulnerability. Booth extensively highlights the same key factors we encountered. These include:

  • Presumption of incompetence relating to parents with ID
  • Focus on Deficiencies
  • Provision of confidence-inhibiting support
  • Lack of trust
  • Crisis-driven services
  • Child-centred focus, and
  • Poor assessments and lack of goal clarity.

The concept of ‘good-enough’ parenting implies an acceptance that nobody is the perfect parent. Parents with ID may well argue that this principle does not apply to them, especially when they come under the microscope of child protection services.  In fact, as Booth suggests, there is a risk that parents with ID are asked to demonstrate a level of competency higher than that expected of parents without ID.

Going Forward
Ironically, as they become adults the children in the above case are returning to their natural parents after care. While in itself this is not an indicator, it adds weight to the suggestion that we should be compelled to create a successful care model where agencies work together to create agreed missions. Legal support, although available to parents with ID, is often complex, difficult to interpret, and directive. A ‘mediation’ model similar to that which exists in family law, where parties are encouraged to work towards agreement, could facilitate better outcomes.

Parents with ID can successfully parent children with support. This we know. Many of these parents are not connected to ID services, and cope well with support from extended family for example. The notion that an ID agency and a Child Protection agency can ‘marry’ their respective mandates to provide a trusting nurturing environment, without facilitation, is unrealistic. Facilitation should focus on the substantive conflict that results from differing philosophy, and the emotional conflict arising from workers’ fears.

Booth points to research indicating that between 60 and 80 per cent of women with mild ID wish to marry and have children. The Assisted Decision Making (Capacity) Act 2015 will undoubtedly generate support for that right and provide a better culture and spirit, but a successful model demands shared ownership where all parties have child protection at the core, and a shared obligation to fill support gaps towards realistic ‘good-enough’ parenting.

Parents are encouraged to engage with all services from the outset, but they do this with the understanding that it is for purposes of support. The dilemma for the professional in the Voluntary body is that the child welfare/protection mandate that all the services are bound to, quickly becomes the dominant concern.

Booth promotes further research indicating that parents with ID can successfully raise children. We know they can, as many of us who have been working in services for a long time know children who attended special schooling in the past, who are now competent parents sometimes with very little support.

The current fostering model and training appear insufficient to meet the needs of both parent and child, and this would need consideration.

Reference:

Booth T. – Representing Children, Vol 13, No 3, pp 175-188

Author Bio

John ArmstrongJohn Armstrong is a Social Work Team Leader with the Brothers of Charity Services in Roscommon having joined the services in Galway in 1981.

  • Everybody has the right to a relationship
  • Relationships need time, trust and responsibility
  • Services and family have to help and support
  • Adrian tells us about his happy and loving life with his partner

People with Disabilities have a right to have a sexual relationship like everybody else.

The relationship should not be made a big issue because this about the both people in the Relationship and not family or Disability Services.

There needs to be trust between the people with disabilities who are in the relationship, and their families and disability services. But if the relationship is stopped or tried to be stopped, the relationship will continue in secret so it is better the relationship is out in the open with the support of family and disability services.

If family accept the relationship, so should disability services and respect the family and the person with disabilities’ decision because at the end of the day, the disability service works for the person with a disability not the other way around.

The people with disabilities who are in relationship should sit down with family and the disabilities services and talk about the right support and the rules when they’re in their services around relationships.

By the right supports and the right information like information on sex and how to have protective sex being given to the people with disability, the relationship will work out.

Like my relationship with my partner Emily who I met on a course in a disability service 5 years ago now.

When we first got together the Disability Service and Emily’s family tried to stop us having a relationship not only because both of us a have an Intellectual disability but also Emily’s family and the disability services thought Emily was naiver in the world of relationships then me which was untrue. That was the view of both families and the disability services at that time.

We both learned from each other along the way, and are more in love now than when we first started to go out together.  But both Emily and myself (Adrian) proved them wrong and the both families accepted the relationship.

When it came to the sexual part of the relationship we both took our time and did not rush and have both learned through the experience, and also that sex is not the glue that holds us together it our love and respect for each other that does.

As for the disability service, they did not accept the relationship and continued on trying to break us up, but both myself and Emily went to see the manager of the service who gave us their backing and under certain conditions, like we could not kiss or hold hands when on the course, or if we were in the same room during the Course, we could not sit beside each other when we were working which was fair enough.

It is two years since we left the disability service we both attended after we finished our course, and have moved on.

Most importantly, we are still together and very much in love and are planning to get a place together in the future when we both get employment.

This story is for Emily by your partner Adrian Noonan.

Author Bio

Adrian NoonanAdrian Noonan is a Disability Self Advocate/Peer Advocate. He is P.R.O. of Seasamh, the Inclusion Ireland Self-Advocacy sub-Committee, and also of The National Platform of Self-Advocates.

Donal Fitzsimons outlines the implementation and history of Home Sharing initiatives in Ireland over the past 30 years, and identifies the challenges ahead…

  • Home-Sharing has helped many people to live independently
  • It has increased over the past few years, and improved quality
  • People can live outside of centres, and in their community
  • Service providers can give a better living option to people
  • People get to go and live with families in their own home
  • Health Services need to develop Home-Sharing to continue to improve life for people.

Introduction

Home Sharing in intellectual disability services has existed in Ireland for the last thirty years as an alternative option to the traditional residential and respite care models of support offered to people with intellectual disability and their families.  The last ten years has seen further developments in Home Sharing, which was formally recognised as a model of residential and respite support by the HSE in 2012, with the publication of the report of the working group ‘Respite/Residential Care with Host Families in Community Settings’ (HSE, 2012). Service providers continue to offer people with intellectual disability and their families, alternatives to the traditional models of centre-based respite and residential group home living. Service providers have been further guided in the management and governance of Home Sharing placements with the publication of the ‘Host Family Support Model of Service Provision – Governance/Guidance Document to Support Implementation’ (HSE, 2012).

Home Sharing has been further developed and fostered by the National Home-sharing and Short-breaks Network (NHSN), established in 2003 to promote uniformity and high standards amongst disability service providers throughout Ireland that offer Home Sharing.  This alternative to the traditional model of service delivery has assisted HSE services and HSE-funded organisations in the development of person-centred and community-based supports.  While acknowledging that Home Sharing is not for everyone, the support model has grown over the years and is becoming more and more popular with people with intellectual disability, their families and service providers (Merriman, B. & Canavan, J. 2007, Murphy, T. 2010 & Coll, M & Scully, S. 2011, ISBA, 2016).

The 2016 International Short Breaks Association (ISBA) conference (a worldwide community promoting the delivery of short breaks) held in Edinburgh, further endorses short breaks as an essential support system aimed at families caring for people with disability.  ISBA recognises and promotes the ‘Every Disabled Child Matters’ (2011) campaign and the English Government has legislated for the provision of short breaks for families of people with disability. They recognise the importance of providing short breaks to families as a means to maintaining and continuing to support people with disability in their home/community, and that the importance of these short breaks cannot be overstated. Broach (2016) states that this has been achieved in England through campaigning policymakers and through political influence (ISBA, 2016).

Development of Home Sharing in Ireland

Home Sharing has developed primarily within the non-statutory sector since 1985 and incremental thereafter over the years in response to service need and demands. It was offered as a means to providing alternative forms of residential care and centre-based respite for people with intellectual disability who found themselves in crisis situations. In some HSE community healthcare organisations (CHOs), Home Sharing has developed positively over the last ten years as a response to service providers listening to, and offering choice to people with intellectual disability in the provision of alternatives to the traditional models of centre-based respite and residential group home living. This development encompasses the ethos and values of the HSE Social Care Division Operational Plan (2016), that people with intellectual disability ‘achieve their potential, living ordinary lives in ordinary places, as independently as possible while ensuring the voice of the service users and their family is heard’ (HSE, 2016, pg 2). It must be acknowledged however, that Home Sharing as it is currently delivered is inconsistent nationally.

National Expert Group on Home Sharing

In further recognition of Home Sharing as a model of person-centred and community-based support to adults and children with intellectual disability, the HSE established a National Expert Group in 2016 to carry out a review of Home Sharing in Ireland. The terms of reference for the National Expert Group was to review the HSE (2012) document ‘Host Family Support Model of Service Provision – Governance/Guidance Document to Support Implementation’, and produce a report with recommendations for the future provision of Home Sharing in Ireland. The report of the National Expert Group, entitled ‘Home Sharing in Intellectual Disability Services in Ireland’ (HSE, 2016) was complete in June 2016 and presented to the HSE Social Care Management Team in August 2016.

Report of the National Expert Group

The report is divided into three sections. Section 1 examines ‘Home Sharing as a Model of Service Provision’ and makes a number of recommendations for the service as it (a) is currently managed and governed, and (b) for it to continue as a model of service on offer to people with intellectual disability and their families. Section 2 entitled ‘HSE National Guidelines for Home Sharing’ provides a clear set of guidelines that service providers must follow and implement when offering Home Sharing to adults and children with intellectual disability and their families. Section 3, entitled ‘Guidance Document to Support Implementation’ provides a comprehensive implementation pack to support and guide service providers in Home Sharing as a model of service. Section 3 also includes a training pack that service providers must adhere to and apply to the existing Home Sharing service, and to the implementation and further development of Home Sharing (HSE, 2016).

Defining Home Sharing as a Support Model

As recommended by the National Expert Group (HSE, 2016), all placements are collectively referred to as ‘Home Sharing’ placements.  A ‘Home Sharing Family’ refers to any household providing short breaks or full-time support to a person with intellectual disability in their own (Home Sharing family’s) home. In order to bring a consistent approach to the service from a national perspective, Home Sharing as a model of support is sub-divided into three categories, namely a) short breaks, b) shared living and c) contract families.

a)      Home Sharing ‘Short Breaks’ families

Home Sharing ‘Short Breaks’ involves a Home Sharing family in the community offering a placement to a person with intellectual disability in their home (Home Sharing families home) for short breaks, and caring for that person as a member of their family.

b)      Home Sharing ‘Contract’ families

The physical, behavioural or healthcare needs of some children and adults with intellectual disability are complex and more challenging. In recognition of this, service providers recruit ‘Contract Families’ (specialist carers) from their existing pool of approved Home Sharing families to provide short break support. Contract families are expected to be available to provide short breaks for ten (10), sixteen (16) or twenty (20) nights per month.

c)       Home Sharing ‘Shared living’ families

A Home Sharing ‘Shared Living’ family is a family that provides full-time care to a person with intellectual disability, similar to a fostering placement.  The shared living family make their home available to a person with intellectual disability, to share their home on a full-time basis as a member of their family.

HSE Disability Reform Programme

As the programme for reform within disability services in Ireland progresses, there is a commitment from the HSE Social Care Division that Home Sharing, as a person-centred and community inclusive model of service, which is embedded in the principles of normalisation, is available to people with intellectual disability and their families as part of the menu of support options on offer. In recognition of Home Sharing as a support model available to people with intellectual disability, the HSE has made provision in the National Service Plan (HSE, 2016) for the further development of Home Sharing as a model of respite and full time support available.  This commitment will enhance and strengthen the existing management and governance arrangements for the cohort of people who currently receive Home Sharing support; at the same time it will improve quality, and strengthen the safeguards that are in place to support people with intellectual disability who receive Home Sharing support, either directly by the HSE or on behalf of the HSE.

Home Sharing as a Model of Service Provision

It is widely held internationally, nationally and indeed from the experience of local intellectual disability service providers in Ireland, that there are many advantages to Home Sharing as a model of service provision.  Home Sharing aims to have opportunities for self-expression in all aspects of the person’s life.  Home Sharing strives to empower people with intellectual disability to have dignifying relationships and to be included meaningfully in the life of their communities. The uniqueness of Home Sharing is that support is provided for individuals with intellectual disability by families in the community, in their own (Home Sharing family’s) home. People with intellectual disability enjoy the opportunity of developing new relationships and being part of new communities whilst enjoying a short break or full time support (HSE, 2016).

Siun

Siun is a sixteen-year-old girl who has cerebral palsy, a profound intellectual and physical disability.  Siun is extremely medically frail.  Attendance at school is sporadic due to poor health and frequent hospitalisations. Siun requires twenty-four-hour care and receives all her nutrition through a peg tube.  Her natural family are overwhelmed and exhausted with this relentless cycle of caring for their daughter.  A Home Sharing family provides two (2) overnight breaks per week to Siun.  Her natural family have described this support as a ‘lifeline to them’. Significant training was provided to the Home Sharing family by the clinical nurse specialist with the support of the paediatric hospital. Regular contact is maintained with the Home Sharing family by the clinical nurse manager and the social work team leader.

Families of people with intellectual disability are advising service providers that one of the supports that they need to enable them to continue to care for their family member at home is short breaks. Short breaks give them a break from their role as carer, and provide their family member an opportunity to be with others and benefit from new experiences. In research carried out by UCC Science Shops (2011), parents spoke about the pressure on them as carers.

Families who avail of Home Sharing have reported that close and trusting relationships have developed between them as carers, their family members and their Home Sharing families (HSE, 2016).

Challenges of Home Sharing

While recognising the advantages of Home Sharing for people with intellectual disability there are, however, strategic and operational challenges in the delivery of this model of support within an Irish context. There is currently no legal framework for the regulation of Home Sharing in Ireland, which is urgently required to underpin the safe governance and management of the service. As Home Sharing has developed ‘piecemeal’ over the years, limited resources are allocated to the monitoring, management and further development of Home Sharing nationally. There is also an inequity in the protection afforded to children with intellectual disability who are in Home Sharing on a full-time basis but are not under the protection of a care order.

Notwithstanding these obstacles, the National Expert Group advocate for statutory recognition of Home Sharing and for the continued development of Home Sharing as a model of support on offer to people with intellectual disability and their families. This is in keeping with international and national evidence to support Home Sharing as an individualised, person-centred and inclusive model of support service, as Home Sharing supports people with intellectual disability to receive support with families in the community. Nonetheless, Home Sharing in Ireland requires a commitment and further investment by the HSE and various Government departments for it to continue as it currently stands, and for its future development as part of the HSE service planning process.  Immediate action is required in this regard.

Conclusion

The report of the National Expert Group ‘Home Sharing in Intellectual Disability Services in Ireland’ (HSE, 2016) has identified both strategic and operational challenges for Home Sharing within an Irish context while at the same time it has provided the blueprint for resolving these issues. The report calls for the further development of Home Sharing as a model of full-time and respite support for people with intellectual disability in Ireland. This must be delivered in line with the HSE Corporate Plan 2015-2017, where the overall aim is ‘to provide high quality, sustainable health care which encompasses the values of Care, Compassion, Trust and Learning’ (HSE, 2015, pg 4). At the same time, Home Sharing must encompass the mission of the HSE Social Care Division whereby the aim is about ‘supporting the ongoing service requirements of people with disabilities with the designs and models of care/support and services to support and maintain people to live at home or in the community and to promote their independence and lifestyle choice in as far as possible’ (HSE Operational Plan, 2016, pg 2).

Reference List

Broach, S. (2016) Making Change happen in the provision of short breaks.  ‘Aiming High for Disabled Children and the Short Breaks Regulations in England’.  Monchan Chambers, London.

Coll, M. & Scully, S. (2011) Respite Care Services for Families Caring for a Person with an Intellectual Disability: Decision Making, Experience and Models of Respite.  Community/Voluntary Group: Home Share/Brothers of Charity.

Government Equality Office (2011) ‘Every Disabled Child Matters’.  London.

HSE (2016) ‘Home Sharing in Intellectual Disability Services in Ireland – Report of the National Expert Group’.  Social Care Directorate, Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

HSE (2016) ‘Social Care Division – Operational Plan’.  Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

HSE (2016) ‘National Service Plan’.  Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

HSE (2015) ‘Building a high quality health service for a healthy Ireland’.  Health Service Executive Corporate Plan 2015-2017.  Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

HSE (2014) ‘Safeguarding Vulnerable Persons at risk of Abuse’.  Dr Steevens Hospital, Steevens’ Lane, Dublin 8.

HSE (2012) ‘Report of the Working Group on Respite/Residential Care with Host Families in Community Settings’.  Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

HSE (2012) ‘Host Family Support Model of Service Provision.  Governance/Guidance Document to Support Implementation’.  Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

International Short Breaks Association (2016) ‘Unlocking the potential of short breaks’.  Edinburgh, Scotland.

Merriman, B. And Canavan, J. (2007) Towards Best Practice in the Provision of Respite Services for People with Intellectual Disabilities and Autism.  Galway: Child and Family Research Centre, UCG.

Murphy, T. (2010) Room for One More.  Contract Families Pilot Scheme 07-09: Galway: Brothers of Charity Services Galway and Ability West Galway.

Ryan, M. (2011) An Evaluation of St Michaels House Contract Family Short Break Scheme.  Community/Voluntary Group: St Michaels House, Dublin.

www.edcm.org.uk/la_charter

www.isba.me

www.nhsn.ie

Author Bio

Donal FitzsimonsDr. Donal Fitzsimons, National Disability Specialist, Disability Reform Team, HSE Social Care Division qualified as an RNID in 1992 and he has held various clinical and managerial positions within disability services both in Ireland and abroad. He achieved a BA (hons) degree in 2003 and went on to receive an MBA in 2005. Donal’s career spans 25 years in disability services, and he successfully defended his PhD thesis entitled ‘A case study analysis of person centred planning for people with intellectual disability following their transfer from institutional care’ in 2012. Donal is currently employed by the HSE Social Care Division, as National Disability Specialist in the Office of Programme Reform. He was Chairperson of the National Expert Group on ‘Home Sharing in Intellectual Disability Services in Ireland’ (2016).

Fran, Molly and Nuala detail a life of struggle, the achievement of home ownership and getting to the stage of independence with the aid of focused services and individualized funding…

Fran and Molly
  • Fran finally owns her own home after many years of effort
  • Fran, her sister Molly and her mum Nuala have worked hard to achieve this
  • Personalised funding has help them to make it happen
  • She now has dedicated support staff, helping her to decide how she wants to live

My Journey to-date

“While my disability is part of me and means that I require lots of supports to live my life, it is not all of me and should never define who I am and what I can become. I am so much more than my disability and working in partnership PP has enabled me to grow as human being in ways I never imagined.”

As a thirty-five-year-old woman I’m about to celebrate my first year as a home owner. I now have a front door and a place that reflects who I am. A place I call my own. Most importantly I have a home that allows me to feel safe and to grow as a person. A place to build my future from. While becoming a home owner may not be surprising to many of my non-disabled peer group, for a person with the label of being intellectually disabled it has been a long and at times almost impossible journey.

Once you receive the label of being disabled, you begin to lose the right and opportunity to become what others take for granted – a valued member of your community. Instead you live a life removed from society, a special world. A world where you are forced to live with other people like you, surrounded by paid staff to manage and control you. Your family, those you love and know you best, continue to receive negative devastating messages of what you can’t and never will be able to do or achieve. How as their child you lack the skills to enable you to remain with your family, and therefore in the best interest of everyone you need to be removed and separated from them and your community.

fran-in-her-sitting-roomYet on 15th of May 2015, I took my steps away from my labels of being profoundly disabled, non-verbal with serious medical conditions as I became a home owner, a car owner and an employer. With each step I took away from these labels I moved closer to my family, my community and developing meaningful roles for an ordinary life.

The journey was at times challenging and tested us as a family. It has taken time and continuous effort to keep strong and not give up or lose our vision. To achieve my vision, my family spent lots of time thinking about me, my strengths and vulnerabilities. It has taken lots and lots of intentionally planning, around how we have and continue to create and develop a vision for my future, in the way that best meets my needs and dreams.

I am happy, surrounded by those who love me and know me the best. I have a future, which I can control. The possibilities are endless and with each day I am growing and finding new ways to let my voice be heard.

The path to a home of my own

I am a thirty-five year woman who lives in my own 2 bedroom home in Co. Waterford. The Annex is on the same property as my parents’ home and farm. I rent the property from them under an inclusive tenancy arrangement for a minimum yearly cost. Both my siblings live close to me and the family home, my brother also lives on the farm property also. I am extremely close to her family, I have many loving and important roles within my family structure.

I have the label of being intellectual disabled which has been diagnosed as profound to severe. I have a serious medical condition which can be life threatening if not managed correctly and can cause me great pain and discomfort on a daily basis. I do not use verbal communication however I have developed my own communication system and actively support all those around me to understand my needs and wishes.

I was part of a full time residential placement within a service provider for many years since I reached 18. Unfortunately, this setting continued to cause a detrimental impact on my health and wellbeing as it failed to meet my needs. From 2004 to 2013, due to ill-health I continued to return home from my residential setting for periods of time up to 8-9 months of each year, to be supported by my parents in the family home. However, since my move into my own home 2015 it has been also noted that my health has improved greatly and I’m able to enjoy a much higher quality of life.

My journey towards an individualised living arrangement began in 2006, when together with my family I undertook a PATH. A clear vision and set of goals emerged from this process, including the belief that I needed to live in my own home close to my family and community. From 2006 until September 2014, through the support of my family I explored every avenue possible to enable my funding to be released from the service provider into an individualised budget. This remained unsuccessful until I and my family began to work in partnership with Possibilities Plus (PP). Possibilities Plus is a support brokerage agency, which provides support to an individual and their family to discuss, plan and establish an individualised living arrangement. PP supports all aspects of the process from discovery work, staff recruitment, review, HR management and governance, and financial accountability.

Fran and Molly3Finally, in 2014 the HSE finally agreed to fund me in my own home. My home was established by securing funds through a Waterford County Council grant and developing an inclusive tenancy agreement. Both of these were achieved by my family during 2014/15, while negotiations with the HSE were on-going.

I moved into my own place in May 2015, after the recruitment of my own staff to support me to begin living a self-directed life. This recruitment involved a three-stage process. Candidates were invited to apply for the role of a direct support worker through the completion of an application form submitted to PP with their current C.V. Then candidates were shortlisted to a first interview which was again refined to select candidates for a second interview. This second interview took place in my home and each candidate got to spend time with me and my mother. Six individuals were successful and were offered part-time positons supporting me to live in my own home.

My family worked very closely with the staff in a shadowing capacity as part of the staff’s induction and training. Slowly over the past 12 months as my confidence and trust in each staff member has grown the family have pulled back from the shadowing role.

Over the past year I have continued to attend a day service. This decision was reached for a number of reasons. Over the past 3 months I have indicated that I want to explore other opportunities and avenues that have opened up to me since my move. I, my family and staff, through the support of PP are now in the process of exploring and developing more opportunities for me to forge more natural links and relationships in my own community. My sister and I are looking at potential areas in which I may develop my own micro-business. This work is ongoing.

Fran and Molly4Reflections from the past year.

To help and support me to plan and reflect on the past year together with my family and staff Possibilities Plus used an Individual Supported Living Manual (ISL) to review my individualised living arrangement. The tool has been developed in Australia and is currently being used to review 150 arrangements over there. As a family, we wanted to use something that had been developed in an inclusive way, which included the input of other individuals with the label of being disabled, their families and support network. We wanted something that had been reviewed by leading academics in this area and that had a track record of being beneficial in supporting individualised living arrangements

As a family, we found the tool very easy to use and inclusive. It enabled us to discuss and reflect on the past year in a focused and meaningful way. It allowed us to see what was working really well and all the achievements that had been reached along the way. It also enabled us to see things that are challenging to us and how to improve and solve these challenges. It gave us clear feedback on what we also need to focus on going forward and helped us establish my goals for the coming year.

What is great is that it is a live process which will enable us to plan in a creative and engaging way. It has enabled us to see all the positives and achievements from the past year, which affirms the work to-date and supports us to remain strong and focused on what needs to be achieved going forward.

Fran’s journey (captured by her big sister Molly) June 2016

Reflections from my family –  our journey so far!

“Often in time of illness or challenge, I would look at my daughter and only see my vulnerable young child, however since Fran has moved into her own home I can only see my adult daughter, even in times of great illness, (such as time spent in with Fran in AE recently)”.

Even though my daughter’s intellectual disability was cause by brain damage at birth, we have seen her intelligence grow substantially over the past 12 months. In securing a home of her own Fran has achieved a sense of security and well-being, which I believe has enabled this growth. While there are many areas of her life that we have seen the positive impact of her move into her own home, here is one example:

“Due to a complication with a medical procedure, Fran was required to go to A&E in hospital after a consultant at South Doc late on a Saturday evening in May 2016. The journey began at 9pm when Fran departed from her home and the group did not return home till the following morning at 7am. The night involved extensive waiting periods of time while she remained in great pain and discomfort. She had to deal with large groups of strangers and a range of doctors. Her space was repeatedly invaded to enable her to be examined. Throughout the whole event, Fran remained calm and understood every request that was made of her, her engagement with her surroundings and the people who dealt with her was far beyond what any assessment of her abilities ever stated she was capable of. When the doctors were required to insert a line in her hand, her sister simply explained what needed to happen and Fran gave her hand to the doctor. Fran remained on a trolley for hours, never attempting to get off or trying to leave. With the right communication and support Fran understood and showcased her ability to deal with the situation.”

This reinforced for us, Fran’s family, the benefits for Fran of living in a home of her own, and a life of self-direction which has enabled her to grow as a person to new levels which were scarcely imaged even by those she loves and know her best. The possibilities are endless.

Working in partnership with Possibilities Plus

Working in partnership with Possibilities Plus has offered Fran and us her family hope, support and guidance. Working together has made it possible for her to live independently and for us as a family to look forward and plan for her future in a positive way.

As a family we spent years trying to release Fran’s HSE funding allocation from her service provider. It proved the biggest block in preventing Fran from living in a home of her own close to her family and her community. PP supported Fran and us in every step of this process from engaging with the HSE, developing and costing her budget and support in setting up the systems required to facilitate it.

With regard to staff recruitment, PP ensured that we were central to the process of matching staff with Fran. They managed all the paper-work, interviews and HR associated with this process while acknowledging our input in a respectful way. PP offered great relevant training to new staff while supporting me to have confidence to teach the staff about Fran, who she is, her unique way of communication and her needs.

While we questioned whether or not living in a small community in rural Ireland would impact on our ability to recruit staff who would be even interested in supporting Fran, a year into it I am delighted to say that we have a wonderful group of staff, who are committed in their work to support Fran to live the best life she can.

Our Support Broker is just fantastic, she has become part of our family. Her skills, expertise and professionalism ensures the quality and sustainability of Fran’s arrangement. She is a constant source of guidance and it is a true and respectful working partnership.

It is not without its challenges; it takes a lot of work and commitment to set up and sustain the arrangement. It is not suited to every family, as the input required from families is high. There are often daily challenges and at times we questioned whether it would work for Fran and us. However, as I have watched Fran develop and grow over the past 12 months, she has assured us that she is facing and solving these challenges in her own way. She has found her voice and every day it grows.

For us as a family, we now understand that securing the physical space and the support staff is only the first step of the journey – the real work for us has only just begun, and that is to support Fran to live an ordinary live with real meaning.

Fran and Molly5The partnership with Possibilities Plus works for Fran and us as a family – however that does not mean it will work for every family, which is OK. Each person and their family should have choice, and a range of options, so that they can choose what will work best for them. Families and their loved ones need information, open communication and dialogue from the HSE; they need support to develop their understanding of the different types of services that are available, and which one may be a good option for them. It’s about choice and equality, choice around the person’s future and equality in how they are treated and supported by the system.

  • Fran’s mother Nuala – June 2016

Author’s Note

In writing this piece, as Fran’s big sister I deliberately wrote it in the first person. Having spent a lifetime immersed in this area, I have often witnessed that when a person receives the label of being intellectually disabled, they can become less human in the eyes of others. The individual is no longer seen as a person, but only the sum of their negative label. My sister is one of the strongest human beings I have ever met, she has shown such resilience and bravery in the face of challenges and struggles many others would not survive. Through everything, she retained her ability to love, to trust and a fantastic sense of humour with the heartiest laugh you will ever hear. Being her sister has taught me so much. While it has brought many challenges and testing times to us as a family, Fran continues to show me what it means to have a relationship with someone who wants nothing from you but to offer you love and respect.

While others may question my rationale for writing the piece in the first person, I did it simply as I wanted the reader to hear Fran’s journey and story through her voice (as best as I can capture it), I wanted the person reading this to see her and not just her label.

Author Bio

Molly O’Keeffe was based at the former National Institute for Intellectual Disability as course

co-ordinator of the Certificate in Contemporary living (CCL) within Trinity College for ten years before taking un-paid leave to support her sisters transition into a home of her own. During her time at Trinity, Molly was involved in a range of inclusive research projects, advocacy initiatives and worked in partnership with the students and their families through their journey as a student, employment, transition and life after college. She supported students and their families to share their stories both nationally and internationally.  Molly worked closely with philanthropic organisations and was a key figure in the development of a range of expressive arts projects. Moll resigned from her post in Trinity last September and is currently supporting other individuals and their families to achieve an independent self-directed live, she works as a staff member with Possibilities Plus while also working with other organisations and groups interested in exploring and developing this area within Ireland.  

Molly and Fran continue to share their lives as sisters, doing and sharing their time as sisters do together.

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  • Marina Giblin feels disheartened by how society views people with disabilities
  • Services appear compromised despite parents’ and families’ best efforts
  • The lack of central control and co-ordination has made it difficult for children to access early education
  • People with intellectual disabilities can be directed toward “special schools”, stopping them being educated with their friends in their own community
  • So, learning and living time are lost in travelling
  • Does society value all its citizens equally?

The Irish system and attitudes to people with a disability means that the only true advocates people with a disability have are more than often their parents. Remove parents from this equation, and what is left is the current appalling situation unfolding in the care system and the HSE.

Sadly, in my view, the evidence strongly indicates that our society does not fundamentally value people with any form of a disability. There is no allocation of meaningful resources at any level to support disability and this starts at birth and follows all through life. Parents are left to fight for practical support, therapies, services, education and training to ensure their children have any quality of life. It is soul-destroying because you encounter resistance at every step of your child’s journey. Your child is as important in your life as any parent’s child and you want only what is best for them. You want your child to reach their full potential like any parent, to be given opportunity to shine in life and experience every wonderful thing that parents dream for their children. In order for your child to achieve these things they need support, and it is this support that our state does not invest in.

All people with a disability need a holistic approach to early intervention – regardless of diagnosis, the approach needs to be multi-faceted.  This needs to include speech therapy, occupational therapy and physiotherapy as basic requirements for every child. Currently this is not easy to source or secure, and unless this is done early in a child’s life the potential outcome for the child can be devastating.

Education is the key to integration of people with disabilities into the community – it sets the stage for the person’s future. At the moment children cannot even access pre-school with the support they need. There is no co-ordinated approach centrally. In essence the reality of segregation is beginning to emerge. Once children are eligible for school, the problem is at crisis level. The Department of Education have absolutely no accountability for what happens at our state’s schools. Resources are allocated by the NCSE to the schools and that is where their involvement ends. There is absolutely no oversight by the NCSE and the Department of Education on how the approved resources are allocated at school level for the benefit of the individual child. The implementation of these resources and the success of their outcome are not audited by anyone at any level.  It is a well-documented fact that children with challenges learn in a different way and need input and implementation from various professionals to maximise their learning opportunities. In class sizes of 30, with very little (if any) direct interaction with the class teacher, and a maximum in very few cases of 5 hours resource learning, this is detrimental. SNA support is not the answer; this is just to facilitate the practical day-to-day of a child’s physical presence at school.

Our own personal experience with my daughter was harrowing. We felt by the end of our experience at ‘inclusion’ that our child was isolated, neglected and discriminated against, as were we as her parents. All we wanted for our child was to be educated in our community with her friends and neighbours where she could grow into an adult with the support of our local community and feel a valued member of society. The reality was very much the opposite. We were told that our daughter might be better off in a special school where she could be ‘the best at something’; we were basically exhorted to remove her from the school under threat of expulsion. All of this unfolded with hardly any of her recommended resources, from a huge team of professionals, being implemented. The entire experience has left us hollow and completely disillusioned and despite every effort on our part for intervention or accountability for the actions of the school, there is no recourse.

The experience has left us questioning the moral fibre of our society, and indeed if there is any collective consciousness. None of the parents supported us to keep our daughter in the school and hold the school accountable for their actions. Some crossed the road; some kept their heads down and most shook their heads. Some even said they could understand the school’s position because it was a drain on its resources to support our child to reach her full potential. I doubt anybody saw our daughter as worthy of the same educational opportunities as their children. She was viewed as deficient and part of a ‘special school population’, rather than a valued member of both the school and the community. I am positive many saw us as ungrateful because we wanted what she was entitled to – an education with her peers.

So, with no other choice and to give her some future she is joining the bus journeys that take place across the country every day to the special schools. She is being segregated because we have no choice and we have had to find another box to cram her into. All this to try to educate her in this broken and archaic system. This will only continue the attitude that Irish society has about people with disabilities, “out of sight – out of mind”, and continued lack of social integration.

The situation only gets more disheartening after school finishes and most teenagers and young adults with disabilities are left isolated from their peers – because they have already been isolated and segregated from the beginning of their lives. There are very few, if any, vocational educational programs available or job programs for school leavers with disabilities. Once again it is left to the parents to provide support and source opportunities for their offspring.

In summary, the current system is broken.  Gandhi said ‘The true measure of any society can be found in how it treats its most vulnerable members’.  In the case of Irish society our treatment of people with disabilities in particular is a very damning indictment on everyone.  The state cannot continue to abdicate responsibility at all levels to others. Ireland already has a long, sordid history of neglect and abuse and this is not changing in any measurable way until there is significant investment in the resources needed to ensure our people with disability are embraced, supported and valued in a meaningful way from the very beginning. This needs to start with education, the basis for any meaningful change always starts with education and moulding the views of disability from a very early age.  I am wondering – when will that time come? Hopefully in my daughters’ lifetime.

Author Bio

Marina GiblinMarina Giblin is a mother to a child with 18q syndrome. She is founder of Irish Education Rights Alliance, which is a parent advocacy lobby group looking for accountability and equal opportunity for Irish children to an education.

You can find out more about the Irish Education Rights Alliance at their Facebook page: https://www.facebook.com/irisheducationrightsalliance/about/?entry_point=page_nav_about_item

Deirdre Corby has sent in details to Frontline Magazine Ireland of a new programme launching in Dublin City University for people with an Intellectual Disability and others with in the field…

The School of Nursing & Human Sciences, DCU are launching a new programme in the area of relationships and sexuality for people with an Intellectual Disability.  It is open to all stakeholders working in the field of Intellectual Disability and is a graduate certificate course that aims to provide knowledge which is appropriate, accurate, evidence-based, up-to-date and free from discrimination, gender bias and stigma.  We are now accepting applications.

https://www.dcu.ie/prospective/deginfo.php?classname=DC675

Author Bio

Deirdre Corby PhD. Is a lecturer in Intellectual Disability Nursing at DCU.

Values matter. Values shape our behaviour, attitudes and choices. Values influence the priorities of organisations and how organisations go about their business. We need organisations that are committed to equality and human rights and that prioritise values of dignity, inclusion, autonomy, democracy and social justice. Such organisations would relate in a better manner to people, benefit the full diversity of people to whom they provide services, and offer a better environment for all their staff.  The new statutory duty on public bodies to have regard to the need to eliminate discrimination, promote equality and protect human rights could be the stimulus for the emergence of just such organisations.

  • Values matter.
  • Values affect how organisations operate.
  • Human rights would ensure that everyone has basic minimum standards.
  • Equality is the more ambitious. Human rights is the crucial foundation.
  • Even the foundational human rights step is missing in so many cases.
  • Values are what unites equality and human rights. Both are rooted in values of dignity, inclusion, autonomy, democracy and social justice.
  • Dignity is about respect and human worth; inclusion is about belonging; autonomy is about freedom and having real choices; democracy is about participation in decision-making and having a say; and social justice is about a more equal distribution of jobs, income, wealth, and public goods such as education, accommodation, and health.
  • The challenge then is to get the organisations with which we deal to be clear in their values of dignity, inclusion, autonomy, democracy, and social justice.

Values seem a bit of a luxury item when compared to the struggles of day-to-day living. They are something we should be concerned about, but maybe when we have a bit more time. Yet, whether we attend to them or not, values are shaping how we think, the choices we make, and how we behave. Values matter.

Values are relevant to how organisations operate. Organisations are always too busy to worry about something as intangible as values. They are still there, tucked away in a strategic plan, up on that dusty shelf. Yet values shape what organisations prioritise and how organisations go about their business. Values matter.

When we look at what we like or dislike about an organisation we can often track it back to the patterns of behaviour of those in the organisation. We can find, or be shown, the policies and procedures that govern that behaviour. What we don’t often get to talk about are the values that shaped these policies and procedures in the first place. If we have a compliment or a criticism to make about an organisation it usually goes back to these values.

We would have a better society if the organisations we had to deal with were committed to equality and human rights. These organisations would relate in a better manner to the diversity of people to whom they must respond. They would benefit the full diversity of people to whom they provide services. They would provide a better environment for everyone they employ. They would set a standard for all other organisations to follow.

Human rights would ensure that everyone secures minimum standards. These are set out in international instruments for civil, political, economic, social and cultural rights. These standards are to ensure people are treated with dignity. They are the foundation stone. Non-discrimination is a key part of this minimum standard. This is shared with the concern for equality that encompasses equality legislation that prohibits discrimination and harassment in employment and service provision – the Employment Equality Acts and the Equal Status Acts.

However, equality holds a greater ambition than non-discrimination. Even the equality legislation goes beyond such a minimum standard in requiring employers and service providers to make reasonable accommodation to ensure people with disabilities can participate and have access. This demands a proactive approach from organisations. The legislation also allows action to achieve full equality in practice by employers and service providers. This demands an ambitious approach by organisations.

Equality is about more than non-discrimination. It is about making adjustments to take account of the practical implications of difference. It is about ensuring real change and new outcomes for groups experiencing inequality. These outcomes would include economic equality in access to resources; political equality in access to influence and having a say; cultural equality in access to a status and standing in society for one’s social group; and equality of respect in access to relationships of love, care and solidarity.

When looked at in that way, the first thing that strikes one is that equality and human rights are different. Equality is the more ambitious. Human rights is the crucial foundation. The second thing that strikes one is that we have work to do to ensure the organisations we deal with in society are committed to equality and human rights. Even the foundational human rights step is missing in so many instances. This brings us back to values.

Values are what unites equality and human rights. Both are rooted in values of dignity, inclusion, autonomy, democracy and social justice. Dignity is about respect and human worth; inclusion is about belonging and accommodating diversity; autonomy is about freedom and having real choices; democracy is about participation in decision-making and having a say; and social justice is about a more equal and just distribution of jobs, income, wealth, and public goods such as education, accommodation, and health.

It is not that organisations or the people that run and work in them don’t hold these values. We don’t have to persuade them to take on new values. The problem is that they don’t prioritise these values, they don’t act on them sufficiently to make them the guiding motivation for personal behaviour and organisational operations. We need to persuade them to prioritise these values.

Organisations need to be more explicit about their values and they need to set out exactly what they mean by the values they say they espouse. When organisations are explicit they can be challenged about what values they prioritise and they can be challenged where they fail to live up to their values.

On a more positive note for organisations, when organisations are explicit about their values they can achieve a shared understanding of aims and aspirations among staff and service users, a stronger commitment to the mission and vision of the organisation, a better understanding among staff regarding their roles, and a coherent alignment of policy and practice with their values.

The challenge then is to get the organisations with which we deal to be explicit in making a commitment to values of dignity, inclusion, autonomy, democracy, and social justice. They need to be encouraged to develop and use an  equality and human rights statement. Such a statement would set out and define their values. It would establish objectives they wish to achieve in relation to each of these values in relation to staff and service users. It would identify the internal and external issues they must deal with to achieve such objectives.

The Irish Human Rights and Equality Commission Act 2014 might be of assistance, certainly when it comes to public sector organisations and possibly when it comes to publicly funded organisations. This legislation introduced a statutory requirement on public bodies to have regard to the need to eliminate discrimination, promote equality of opportunity, and protect human rights in carrying out their functions. This important development has yet to be implemented in any serious manner by the public sector.

The Act requires public bodies, when they are preparing strategic plans or similar documents, to:

  • Assess and identify the equality and human rights issues that are relevant to their functions as policy maker, employer and service provider;
  • Identify the policies and practices that they have in place or that they plan to put in place to address these issues; and,
  • Report on their achievements or developments with regard to these issues in their annual reports or similar documents.

What better way to implement this new statutory duty than by preparing an equality and human rights statement? This would strengthen and prioritise values that underpin equality and human rights in the organisation. It would render these values explicit and develop accountability for their implementation in practice. What better way to remind staff in these organisations of their equality and human rights values and how these should motivate their work? The Values Lab have already developed and tested such a model with public sector organisations and non-governmental organisations.

This all might seem like a big jump. We are as sure of our belief in equality and human rights as we are sure of being in a minority in holding such values. Recent research in England puts this into a whole new perspective. This was a survey, based on a thousand people, carried out for the Common Cause Foundation who have led this new values-based approach to social change.

People were asked what they valued in life. The researchers looked at groups of “compassionate” values like ‘helpfulness’, ‘equality’ and ‘protection of nature’ and “selfish” values such as ‘wealth’, ‘public image’ and ‘success’. They found that 74% of respondents place greater importance on compassionate values than selfish values, irrespective of age, gender, region, or political persuasion.

It is the second finding that is the most striking. They found that 77% of respondents believe that their fellow citizens hold selfish values to be more important, and compassionate values to be less important, than is actually the case. People who hold this inaccurate belief about other people’s values, the researchers found, feel significantly less positive about getting involved in action for change, feel a high level of social alienation, and feel less responsible for their communities.

How does an apparent majority holding values of equality and sustainability end up alienated to the extent that they don’t give expression to these values? The researchers asked people what values they felt were encouraged by key types of institution: arts and culture, schools and universities, the media, Government and business. They found that people believe that each of these institutions discourage “compassionate” values, and encourage “selfish” values.

There is work to be done in sorting that out. We need to find new ways of talking about our values of dignity, inclusion, autonomy, democracy and social justice. Only in that way can we establish that they are widely shared and we can strengthen the priority given to them by the organisations we deal with.

Author Bio

Niall Crowley is co-founder of the Values Lab, www.values-lab.ie

Bernie Fay introduces two well-established respite and support programmes which continue to benefit people with disabilities and their families.

  • Homesharing is an idea whereby people in services go and spend the night with a family in the community.
  • It has a great effect on everyone involved.
  • Services providing this have sprung up around Ireland.

The Muiríosa Foundation provides both respite and long-term support though the Share a Break and Room to Share schemes.

The Share a Break scheme has been developing over the past 30 years.  It provides respite in a family setting on an on-going basis to children and adults, the range of intellectual disability being from mild to severe.  The overarching aim of Homesharing is that the person placed feels part of the Host Family.  The processes involved in these schemes should have this as the ultimate aim.

This service allows people to have an individualised form of respite.  The scheme continues to expand each year.  This scheme is administered by the Muiríosa Foundation and funded by the HSE.  The Muiríosa Foundation administers the largest scheme in Ireland:

  • The counties involved are Westmeath, Longford, Laois, Offaly and south Kildare;
  • In 2015, 138 children availed of 5,739 days of Share a Break with 138 hosts;
  • A total of 135 adults availed of 6,682 days of respite under the scheme;
  • There is a total of 218 host families involved in the scheme.

The testimony below illustrates the important role this scheme plays in the lives of people with an intellectual disability and their families.

Catherine Keane (mother of Aidan (aged 10)): “Looking after my son is physically, mentally and emotionally demanding.  He requires a high level of supervision and it is difficult to maintain this on a daily basis.  It is very tiring, especially when you have other children whose needs also need to be met.

I have no family support network to help with his care.  I have come to depend and rely on Share a Break in order to help me maintain the level of care he requires.  Our life is structured around our son.  We have to work around him and his needs.  My other children also have to work around him, in terms of where he can go, what activities he can participate in etc.

Share a Break for me is a break. It is the only time aside from school when my son is away from home.  I do not have to worry.  I know he is safe and happy.  It gives me a day of freedom and a break from routine.  In his absence, the house is more peaceful.  It is even a break from the noise.  I have used this time to do even simple things such as go for a walk, sleep, go into town and walk around the shops with my daughter or go for lunch.  This is time when you know you can plan something, have a rest or just spend time with your other children.

We benefit as a family also.  My daughter can choose a programme on TV.  She recently started ballet.  This would not be possible without Share a Break.  Share a Break gives us the opportunity to experience a little normality – to do things that others take for granted.  I am very thankful for this.  It is invaluable to me and I do not know how I would manage without it”.

Increasingly, families are opting for family-based short breaks rather than seeking residential respite.  However, if some people prefer the latter service, it is important that this remains an option for them.

The Room to Share scheme has been in operation since 1993 and provides long term, permanent care in a host family setting to people aged 18 and over.

Those currently availing of the scheme live in Counties Longford, Westmeath, Laois, Offaly and Kildare.  The range of disability of those who avail of the scheme is from mild to severe.

What is distinctive about the Room to Share scheme is that people live with their host families on a full time, permanent basis.

In 2015, 22 adults lived permanently with families under this scheme.  These people feel part of the host family and this is a mutual feeling.   The testimonial below illustrates the way in which one’s quality of life can be enhanced by this scheme.

Thomas is a 63 year old man who enjoys the outdoor life and is particularly fond of working with small animals and doing gardening.  Six years ago, due to challenges pertaining to his family, Thomas ended up living in a large residential centre.  Those who were living there had needs which were greater than those being experienced by Thomas.  He became depressed and withdrawn.  It was agreed that his quality of life was being compromised by living there. 

Thomas started going for weekends to a respite homesharing family and very much enjoyed this.

His mood changed and it was decided that he would go to live on a full-time basis with this family.  He lives happily with his new family and enjoys time spent with their dogs and loves the work in their extensive gardens.  Thomas enjoys going to football matches with the family and likes the peace and tranquillity of the countryside.  Thomas also attends a day service and likes the time he spends there interacting with friends.

Equity and Inclusion:

The principles of equity and inclusion are realised in Homesharing.  Studies undertaken on traditional respite in comparison to Homesharing models indicate high levels of satisfaction with the latter scheme (Merriman et al (2007), Murphy, T (2010).

It is hoped that this can be expanded further in the future.

 

References:

Merriman, B. and Canavan, J (2007)

“Towards Best Practice in the Provision of Respite Services for People with Intellectual Disability and Autism”, Galway Child and Family Research Centre UCG

Murphy, T (2010) “Room for One More? – Contract Families Pilot Scheme ’07 – ‘09” Brothers of Charity Services, Galway and Ability West, Galway.

Author Bio

Bernie Fay is Head Social Worker with the Muiríosa Foundation.  She has been working on the Homesharing Projects since 1983.

  • Adrian discusses important topics such as medical cards and charges
  • He thinks the government and ministers dont understand people with disabilities and their families
  • He thinks a proper dialogue and understanding needs to be had by all parties

Will Government Ministers and TDs listen properly to the needs of People with Intellectual Disabilities & their Families?

I don’t think so, because Government and most TDs don’t think the needs of people with intellectual disabilities and their families are important enough.

The Government and TDs  just don’t understand how hard life is for us as people with intellectual disabilities and our families, with the constant cuts to services and secondary benefits/allowances like the phone allowance and the mobility allowance.

The prescription charges are a tax on people’s medication and has to be removed, and this prescription charge is hard on people with disabilities who are taking medication. It has jumped since this government came to power From 50 cent to €2.50, and is a very low blow, to tax medication which is vital for people with disabilities to take. If you have to take five different medications the bill could reach to €20 euro a month.

With news of the abuse of People with Intellectual Disabilities in services breaking nearly every month, it looks like the disability sector is in a mess. This is due to the lack of action from government / previous governments to make sure these services are protecting the clients’ human and civil rights, by making sure the clients’ needs come first and not that of the management or service.

Government agencies (i.e. Social Welfare, HSE to name two) seem to work against people with Intellectual disabilities & their families and friends. That is a view of a lot of people with Intellectual Disabilities.

The amount of forms and meetings and phone calls you have to make or give information or sign just to get your disability, invalidity and domiciliary benefits/allowances and apply for medical cards is ridiculous and should be made easier.

Even when you sign and give all this information, you might not get your benefits or medical card, if your mother and father are working, or your disability is not on their list of certain disabilities you don’t come under.

Just because your mum or dad is working you should not be punished. Your disability allowance and your medical card are yours, not your parents’. That should be looked at in the way they look how much you earn, and not take your parents wages into consideration.

The amount this stress causes to people with intellectual disability and their families & friends can be very hard. This is why the process of access to government services/agencies should be easier to access, and look at the person with intellectual disability and their needs – see the person, not how much it will cost the state.

This is why we need Government Ministers and TDs, and agencies to be given disability awareness training, and listen to people with intellectual disabilities and their families’ needs on how to make our life better.

We as people with intellectual disability and our family, friends and Self/Peer Advocates want Government, TDs and their agencies to look behind the Form or the PPS Number and see the Person with intellectual Disability and our family, friends and Self/Peer Advocates and to listen to our needs properly, by sitting down and speaking to us face to face and show us and our family and the self-advocates/peer advocates the respect we deserve.

This is what Government TDs and other party TDs need to do if they want my vote.

Author Bio

Adrian-NoonanAdrian Noonan is a Disability Self Advocate/Peer Advocate. He is P.R.O. of Seasamh, the Inclusion Ireland Self-Advocacy sub-Committee, and also of The National Platform of Self-Advocates.

Kevin Murphy illustrates how he managed to broaden his horizons, meet new people and travel – and all for his love of West Ham Football Club.

  • Kevin has been a West Ham supporter since 1974
  • He has found a supporters club that have accepted him as a member
  • He has travelled many times with them to Upton Park to watch his favourite team
  • He has gained massive independence and confidence and joy from this group he is a part of and made to feel welcome
  • He looks forward to West Ham’s move to their new stadium in 2016

I have been a part of WALK since 2002. Sport is a huge part of my life, particularly football. I enjoy watching football – both through going to games or watching on TV- and talking about the highs and lows the next morning with friends in work. I live in Inchicore in Dublin and regularly take trips on the LUAS to Tallaght to watch Shamrock Rovers, but my club is West Ham United.

I’ve been supporting West Ham since 1974. I’ve been asked ‘’Why West Ham!?’’, but I always enjoyed the style of football they played, particularly under the manager John Lyall. West Ham were relatively successful at the time. They won the FA Cup in 1975 and the following year they got to the European Cup Winner’s Cup Final, although we were beaten by Anderlecht. My father followed Aston Villa, so it was a claret & blue house!

Although I’d been following West Ham for a long time, I never really met other West Ham fans in Dublin. I discussed this with my keyworker at one of my planning meetings in the Summer of 2012.  I thought it would be great to find like-minded fans to meet up and watch West Ham games. A quick Google search later, and The Dublin Hammers turned up!

The Dublin Hammers are a West Ham Supporters Club based in Dublin. They meet up regularly in Branningan’s Bar on Cathedral Street in Dublin City Centre to watch West Ham games. This sounded perfect.

Jimmy Conway was the contact in the club. We contacted Jimmy to get more information about the Supporter’s Club and to express an interest in becoming a member. Jimmy was extremely helpful and said I would be more than welcome to join the Supporters Club.

As the season in England was coming to an end, and wasn’t due to start again until the end of August, I had a bit of time to work on becoming familiar with Brannigan’s Bar and importantly, how to travel there from my house. Over the next couple of months, I worked on figuring out the route and becoming comfortable with travelling it.  This involved getting the Luas from BlackHorse to Abbey Street and identifying landmarks, which would help me find Brannigan’s Bar. I also took the time to get comfortable using my mobile phone in case I needed it.

On 23rd August 2012 – two days before the first meeting of the Supporters Club in Brannigan’s Bar, I travelled independently from Inchicore to Brannigan’s Bar.  I agreed that a staff member would also do the journey, but they would do it a half an hour after I left.  I got the Luas from Blackhorse. I got off at Abbey Street and began looking for the landmarks. The Spire. Check. Burger King. Check. Spar. Check. And there was Brannigan’s. The staff member arrived shortly after. I told them how comfortable I was doing the journey independently, and was looking forward to travelling independently on Saturday and meeting Jimmy and the other Supporter’s Club members.

A couple of months passed and I was regularly travelling into Dublin City Centre to meet up with the Club. I looked forward to the meetings. It was a great atmosphere in the Bar. Cheering every Hammers’ goal and bemoaning every goal against. It was great experiencing these moments with my fellow supporters.

I was turning 60 in May 2013, and I was planning on having a party in the Red Cow. I had invited Jimmy from the Supporter’s Club and I was delighted he was able to make it. It was a fantastic night spent with many of my friends, with the occasional glass of red wine and Neil Diamond sing-along!

That night, Jimmy had mentioned that the Supporter’s Club were running an overnight trip to Cork in July to see West Ham play a pre-season game v Cork City, and asked would I be interested in going. It’s not everyday West Ham come to Ireland, so I was excited about this opportunity and expressed my interest in going on the trip. Jimmy passed on the details and over the next couple of weeks I worked on making the relevant bookings (train tickets, match ticket and a room in The Metropole Hotel in Cork – a beautiful hotel). I intended to travel independently to Cork with the Supporter’s Club.

Jimmy met with a member of staff in WALK to discuss the trip in detail. Jimmy said the other lads in the Club were always very positive about my involvement with the Club and that we were all there for the same reason – to support our team!  Jimmy felt this trip was something I could do without staff support. Jimmy felt that I had settled into the Club well and I was completely comfortable with everyone in the Club too. Jimmy and the staff member exchanged the relevant contact numbers and it was all systems go.

Now, I needed to spend time to figure out how to travel from Blackhorse Luas Stop to Heuston Station because this is where I would be meeting the lads from the Supporter’s Club to catch the train to Cork. I did several trial runs – both with and without staff supporting me.  I was comfortable travelling independently on this route ahead of the match date.

Another thing I worked on was identifying and becoming familiar with things in Heuston Station such as the location of ticket kiosks, platforms and toilets to avoid confusion on the morning of the trip. Jimmy agreed to meet me at the Heuston Luas stop on the morning of the trip, where we would both go and collect our train tickets together. We were able to book our seat together on the train – which was great – as we were able to keep each other company and discuss the game that evening – we were both really looking forward to it!

The trip went well. West Ham won 6-2, so I got to see plenty of goals and a couple of first-team stars were on show, which I wasn’t expecting, and was a bonus! It was great to bond with the lads in the Supporter’s Club too and we still share stories from the trip to this day (What happens on tour though, stays on tour!!!)

Having seen West Ham come to me, it was now my turn to go and see West Ham in London.

I didn’t have long to wait. The Supporter’s Club were running a trip to see West Ham v Aston Villa on at the start of November. The group intended to stay overnight, however I preferred to do a day trip. A staff member from WALK would travel to London on the flight with the Supporter’s Club, and after the game I would arrange to meet the staff member and travel back to the airport to head home.

My deposit for the trip was paid, my seat on the Supporter’s Club bus was booked, my flights were booked, my match ticket was booked and I was all set to go.

On the morning of 2nd November 2013 – a staff member and I travelled to the airport to meet the lads in the Supporter’s Club. We were all booked on the same flight, which was great. Upon touching down in London Stansted, the staff member exchanged numbers with the one of the guys in the Supporter’s Club and we arranged a meeting point after the game.

Unfortunately the game ended 0-0 – there is nothing worse than going to a football game that ends 0-0! The consensus amongst the Group was that it was two points dropped, but I had enjoyed the day and my first experience travelling to London with the Supporter’s Club. I promised myself it wouldn’t be the last.

Over the next couple of months, I continued to travel regularly into Brannigan’s Bar in Dublin City Centre to meet up with the Club and watch games on TV. The Club then announced plans to travel to London in May 2014 to see the game v Tottenham Hotspur – the derby! What a game that promised to be – I knew I just had to be there.

It was very similar to the last trip the Club ran in November 2013. The Club planned on staying overnight, but I preferred to do a day trip. I agreed a staff member would travel with me again to London, that I would head off with the Club for the match and afterwards I would meet up with the staff member to travel home. I paid the deposit and made the relevant bookings. It was just a waiting game now.

The morning of May 3rd arrived and the staff and I travelled to meet the Club – bright eyed and bushy tailed, in Dublin Airport. Again, we were on the same flight and we were all in jovial mood. West Ham v Tottenham is one of the biggest games of the season if you’re a West Ham fan, and I felt really fortunate and excited to be going to see this game. Going into the game, West Ham weren’t playing particularly well of late and Tottenham were in a good run of form, but ever the optimist, I was hopeful of a West Ham win!

On a beautiful summer’s day in East London, West Ham put in a great performance to win the game 2-0. I thoroughly enjoyed the game and it made the journey home a happy one.

I’ve been on three more trips to London with the Supporter’s Club – in November 2014, May 2015 and October 2015. In November 2014, we drew 0-0 with Aston Villa – again! – Which was like déjà vu from my first trip in November the previous year! In May 2015, we were beaten 2-1 by Everton – where I saw my record of West Ham never being defeated disappear! And my most recent – and arguably my most enjoyable – trip was in October 2015, where we beat Chelsea 2-1 in another derby game.

I particularly enjoyed that Chelsea game as the 2015-2016 Season represented the last season of West Ham playing in Upton Park before they moved to the Olympic Stadium in the summer of 2016. That famous old ground has been home to West Ham since 1904. When I went to visit family in London in 1974 – as a student at the time, I went to Upton Park to watch West Ham. 41 years later, I was possibly watching them play in that same old ground for the last time. It was great to win the game on the day to ensure my last memory of Upton Park was a happy one!

When West Ham move to the Olympic Stadium in the summer of 2016, it will open a new chapter in the club’s history and a new opportunity for myself too. I watched the London Olympics on TV in 2012 and was impressed by the stadium. It looked fantastic.

I look forward to my first and many more trips to the Olympic Stadium with the Supporter’s Club to seeing West Ham play.

Author Bio

Hi, I’m Kevin, I live in Inchicore. I’ve got lots of interests: dancing classes, choir, guitar lessons, going out to gigs – anything to do with the music side of things. One of my biggest loves is my work. I work part time in 2 cafes and a bar. I enjoy learning new skills and working as part of a team. I enjoy meeting the customers and looking after their needs. I enjoy the banter with the other staff and the customers. I am also a serious sports fan – soccer, rugby and gaelic. Developing this passion and meeting new people through it is what this article is about.