My Life, My Way – Reflections from an Individualised living arrangement

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.

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.