Shared Lives in Northern Ireland-Annual Report 2017-18. This report provides a useful baseline in relation to a better understanding of the opportunities and challenges in delivering an expansion of a shared lives approach as the sector develops in Northern Ireland.
Reflecting upon 2018-19, Shared Lives carers now support over 1,100 individuals for the first time, a clear indication that people, including commissioners of services, increasingly know about and understand the benefits of its support.
Shared Lives England 2017-18 Report tells the story of what the Shared Lives community has achieved in recent years. Shared Lives vision is a kinder, stronger society built on sharing our lives and our homes. We help build communities where everyone lives a full life, regardless of the support they need. We do this by turning Shared Lives and Homeshare into thriving, mainstream options, with all the right structures in place to support and guide who want to share their lives and homes.
Sometimes referred to as a host arrangement, homesharing involves sharing your home and life with someone with a disability. It’s where you have someone with a disability come and live with you and you support them by providing the essential basics of home and belonging, in the same way, that you’d support your mum, your dad, your brother, your sister.
Tiffany is a young woman who lived in a “nursing” group home, and desired to direct her own life, live in her own home, stay connected to “her people”, and work…living life as most other young adults do. The Arc of Howard County partnered with Tiffany and her family, to transform their supports to make this possible.
This edition of CRUcial Times is an exploration of what it means to create a home. We want to explore how we can assist people with disability to have more than just a bed, a room in someone else’s home or basic shelter but a home that others would clearly recognise and maybe even envy. Having a stable home can open doors to community, growth and connection.
Creating a home and lifestyle is a long lasting and universal topic. If moving out of home is a milestone for most young adults, then we need to consider why this is so often challenging or out of the reach of people who live with disabilities.
Scott and Daniel Harry are living their lives as they want, they are taking full advantage of the national disability insurance scheme. They arrange all their own support and lead a free and very social life, the way they want to be.
In 2017 Inclusion BC and Community Living BC came together over the shared issue of inclusive housing for people with developmental disabilities. Together they formed the Inclusive Housing Task Force made up of people with lived and professional experience with inclusive housing and drew upon the expertise of approximately 80 individuals from around the province through a Housing Forum held in January 2018.
Kirby’s dream to move back to her own home was the focus of her NDIS planning. Kirby moved out of the nursing home into her parents’ home. Since this move, Kirby’s physical recovery has progressed significantly. Aside from ongoing physical recovery, Kirby’s goals include moving out of her parents’ home and living independently.
In her mid-twenties Julia moved out into a group home but she was not happy or well. Julia found out that her residence was closing and said she wanted to live in the city near her sister, so the family decided to relocate. They worked with friends and a service provider to plan how Julia could have a home of her own.
Matthew has always had a strong vision for himself as an independent person. His family were surprised and concerned at his plan to move to a larger nearby town. However, they wanted him to achieve his goals, so they supported him to that end. Originally, different options were considered, one of which was the idea of cluster housing with shared support. Matthew preferred the idea of a regular home in a regular street. He did not want to be defined by his disability. In the end they followed Matthew’s wishes.
Cameron Skinner lived with his parents Maggie and Greg but always knew he wanted his own home. With the support of his folks, his friends, and some brilliant house mates, he is now thriving in his own home.
June lived in an institution for about 40 years and then in a private hostel. There was a lot of abuse in the hostel system and June had lost contact with all her family. It took a long time for June to trust anyone but with the help of some advocates who remained faithful to her, she was able to find her family and to set up a home of her own.
Warren O’Brien has successfully achieved living in his own home along with the support of housemates. Warren’s mother Anita, was instrumental in the planning and implementation of this living arrangement for her son, along with Warren’s support workers and housemates
Tony has a simple well-designed apartment that accommodates his extensive assistive technology and allows for him to move easily around. Tony has set up his home with assistive technology so that he can do most things for himself, including choose his own music, enjoy reading and organise his own clothes and personal care.
Joe has always had a large, loving family, who live in a country town. After he left school, he went to a group home because the family thought this was the best solution for Joe at the time. Over time this was found not to be the case. Joe’s parents were concerned about who would look out for him when they were no longer able to.
Shared Living is about people living together, sharing experiences and building friendships in a place called home. This short film on Shared Living is all about friendship, fun and independence. This is the story of Jonathan as told by his father Arthur, his housemate Justin and his Support Worker Lincoln.
Luke lived with his family until he was in his early 20s. His parents realised that they needed to start to assist Luke to build his own life and community as they would not always be around. Luke rents a small public housing home. When Luke was settled, his parents relocated to be close to him. Luke receives support through a small personalised service, which allows Luke to employ, train and direct the support-workers.
Home is important for so many different reasons. Shelter. A place to rest. An expression of Identity. Independence. Autonomy. Love. What would it take for more people with a disability to have a home of their own?
Keys to Life describes examples that illustrate the context of innovation; guiding ideals, four leadership commitments, and innovation in the design and delivery of residential supports for ten people that have emerged from the organization’s commitment to innovation.
The stories in this paper provide examples of residential design that maximise individual’s relationship to others – families, paid support workers, advocacy and their growing network of support. The goal of the AHRC Homebuilders Program in NYC is to increase the capacity of individuals to live independently.
Supportmatch matched Geoff with Sarah,a music teacher who had previous Homeshare experience. They connected immediately at the first meeting; Sarah built a relationship of trust with Geoff from the start.
The National Alliance of Capacity Building Organisations (NACBO) is a national network of not-for profit, values-based, capacity building organisations. This document is NABCO’s submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. We define the meaning of home and what we consider to be best practice in home and community living. We list what each sector can do; people with disability themselves, families, allies, services, or government. We then consider how best practice for a few can become accepted practice for many. We offer three take-home messages from our work and offer four recommendations for government action. Finally, we share twenty-three stories which illustrate that people with disability can have a home of their own, establish networks of family and friends and contribute to a community where they belong.
31 May 2021 marks the ten year anniversary of the exposure of abuse and mistreatment at Winterbourne View, an Assessment and Treatment (inpatient) institution on the outskirts of Bristol, UK. The BBC Panorama documentary ‘Undercover Care’ highlighted a regime of physical and psychological abuse, neglect and mistreatment in a hospital intended to assess and treat some of society’s most vulnerable. This collection of family stories has been developed by some of those families.
Simona lived in an institution in Romania for 34 years, where she endured poor living conditions and unnecessary restrictions. Three years ago, Simona moved into a regular house in the town of Mihailesti. She now has friends, a job, the ability to make her own decisions about her life—freedom, in a word. This short film follows the stories of Simona and others who have flourished since leaving institutions and finding a place to call home.
Chris uses augmentative communication to help support his work as a Motivational Speaker, and to be an active member of his community. Chris lives independently in Holland, Michigan and strives to live his life to the fullest.
These essays were printed weekly in Community Living Ontario’s Update Friday newsletter, in a special Aging in Place series that ran from January to June 2021. The Community Living movement, including people who have a disability, parents, leaders, advocates and service providers have contributed freely to this writing project because they have long known and deeply understood the harmful effects of institutionalizing people in order to receive care and support.
Justin Clark tells the story of how he fought for the right to make his own decisions and leave the institution where he lived for 18 years, to live his life as he chose. In 1982, he won the right to leave the institution and make his own decisions about his future. The impact of his case — a pivotal moment in the Canadian disability rights movement — continues to be felt today.
In this edition, Institution Watch have asked individuals from across the country to provide their perspective on the issue of de-institutionalisation and provide commentary as to why we have successfully closed large institutions but have not yet enabled people to exercise true choice and control in and over their lives, and to offer suggestions as to how this situation can be changed.
This newsletter is written and produced by the People First of Canada and Canadian Association for Community Living joint task force on De-Institutionalisation. “An institution is any place in which people who have been labelled as having an intellectual disability are isolated, segregated and/or congregated. An institution is any place in which people do not have, or are not allowed to exercise, control over their lives and their day to day decisions. An institution is not defined merely by its size.”
This article features Claire Hendrick, who discusses the effect of the Ward of Court System and the Lunacy Act in Ireland, and why it must change to satisfy Article 12 of the UNCRPD. Claire grew up in Beaumont with her family. She lived as a Ward of Court for 3 years until, with the support of her family, she got out of the system in 2012 and bought her new home on Valentine’s Day 2013.
Bojana Rozman PhD shares the journey of the Association for Promoting Inclusion and the people they work for with as they have established community based support services for people leaving institutions in Croatia.
The 100 Leaders Project is about people living with disability who have taken control of their own life, who have a vision of what is possible, and who are taking personal action to build the life they want to live.
Tracy packed up her home in Florida and moved to Georgia in 2005, where she teaches at the University of Georgia. In this video Tracy shares her positive philosophy of life and love of the outdoors.
Jocelynne spent the first half of her life in foster care, group homes and institutions. She did not thrive in these environments. At the age of 22 she got the opportunity to move into a home of her own. It transformed her life. Check out what she’s achieved with her independence!
Nick took a leap and decided to purchase his own apartment. It’s a little bare at the moment, but he sees it as a blank slate to create exactly what he wants. He’s put a lot of research into his renovation plans and he wants to share so that others can learn from his experience.
As soon as Glenda laid eyes on this charming historic bungalow she knew it was the home she’d been searching for. Although it was old and a bit run down, she saw its potential. See how Glenda has transformed this house into her own colourful accessible oasis where she feels free.
Maria is an outside the square thinker, and after years of experimenting and trying out different ways to do things, she has a ton of accessible tips and tricks to share. Recently she has been adding accessible technology into the mix, which has given her more control over her home environment than she thought possible.
Living Our Dreams introduces you to people who are thriving in homes they have chosen. Having a home of their own has allowed them to express their individuality. It has provided them with a sense of control over their lives and an understanding that their preferences and choices are respected. It has improved the quality of their lives and has provided them with new opportunities. Most significantly, it has strengthened their family connections and has allowed them to develop meaningful relationships with others.
Heather is a happy mum and nan. She raised her two children as a single parent, which meant that having a well-designed home that enabled her was a must. Heather knew exactly what she needed and wanted, and so she met with an architect to bring her vision to life. The result is a functional, warm family home that matches Heather’s needs, interests and values.
For Rachel, living in her own home means freedom, strength and security. The location of her home is integral to her independence and well being. She lives a short stroll from shops, cafes, entertainment and public transport. She lives a busy lifestyle, which makes it all the more important that her home is her haven.
At the age of 28, Kate moved out of her parent’s house. Her friends and family had encouraged her, but Kate wasn’t confident that it was the right choice for her. She worried she would be lonely. But after only a few weeks in her new home, Kate realised she loved living on her own. Tailored custom accessible design and a great location make Kate’s charming single story town house a winner.
Despite all of his challenges, Stephen was determined to stay in his home in the country. Stephen says that good design, technology, routine and practice, combined with motivation and courage are the key ingredients to his independence.
After Pierre’s mobility decreased, he moved into a nursing home where he thought he was destined to live the rest of his days. He felt bored and lonely and longed for his independence. With his physical restrictions, he did not think he had any choice. However, with his friends’ encouragement and the aid of technology, he’s happily out of the aged care facility and into a home of his own. See how technology has helped Pierre regain control!
Trudy’s purpose built accessible home is full of great design elements that allow her to maximise her environment. Her favourite features are the private backyard garden and the home’s spacious layout, which makes it ideal for hosting friends and family.
I’m Robert. I’m a funny guy, I like joking around. I live in my own house. It’s especially built for me. It’s so roomy. It’s easy to get around the house. I wanted to get out of that hole I used to live in. All my sisters helped me achieve this house. My life is the way I want it now. Life’s more fun.
I own my own home here. It’s a small but very cosy little house. I live by myself, but I have my family and friends very close to me. I love my freedom, being in my own home, having my own friends, it’s just wonderful.
I’m Kyal. I live on my own. I’ve been living here since my 20th birthday. When I’ve had a busy day, I like to come home and just sit and relax and just sit on the couch and watch TV or do a diamond dot.
Before I moved I also lived on my own. It’s a much better house now. I think it’s perfect for me cause it’s so quiet here and peaceful. I just like living here by myself. I like quiet.
“I am the director of my own ‘institution’” depicts István’s transition to living independently with the support of people he trusts, and free legal support provided by Validity. The film shows the legal and social barriers István faced to gaining true independence, including the threat of being placed under guardianship and our legal steps to ensure he retained his right to legal capacity. It also describes Validity’s work to undertake strategic litigation challenging largescale systems of institutionalisation and guardianship that affect millions of persons with disabilities around the world.
With the support of family and friends Davi now enjoys living with a housemate in his own home, working in a builders supplies store, volunteering at a community bike shop, and many other community and family oriented activities.
This 3-part Podcast series is a conversation between myself (Sam) and Karen. We talk about our own lived experience of having a disability and leaving a nursing home. Our conversation is also about feelings – the feelings that might come with moving out of a nursing home or group home. We talk about the emotions that people with disability might have when deciding to move, and how they might feel after they’ve moved while living their lives outside the nursing home. We also talk to two other people with disability, Lisa and Liz, later in the podcast. They share their experiences of leaving a nursing home too.
Matthew first moved out of home 15 years ago. In this video, you will hear from Matt’s mum, Jill. Through intentional and thoughtful planning, Jill has tried to ensure that Matt is living a full and rich life, and that this will continue for many years. Jill discusses renewal, safeguarding, and inviting people to ensure this doesn’t all depend on her.
In this video, through two different stories, you will meet Jenna, Julius and their families, and hear how they each used Specialist Disability Accommodation funding to build their own homes. They explain why they chose to go down this path, some of the hurdles they navigated, and the benefits.
Brendon has lived in his own place since 2004. Prior to that he lived in a group home. His complex support needs were not met and as a result he nearly lost his life. Join Brendon, his parents and support workers as they show what is possible when people get their own home with personally tailored and directed supports.
Meet Jessica and her housemate Coralie as they interview each other about life in their share house and why it’s where they both want to be. Homeshare is based on relationship and is a more natural way for Jess to get the support she needs to live in her own home.
Together, Jessica and her family, planned not only for a house for Jess, but for a home in a community she knows well. In this video, Jessica’s mum, Julianne, talks about home-sharing, the planning behind it and the importance of community.
Cameron is in his early twenties and has always lived in the family home. To explore what life in a home of his own could look like, Cameron did some regular housesitting for a family friend. Cameron’s experience was positive and showed that he’s was ready to live in a place of his own with carefully-crafted support in place.
My Home My Way asked 9 Australians with disability about what ‘home’ means to them. Some have been living in their own place for years and are thriving in the homes they’ve created. Others are actively testing their options, and some are still imagining the possibilities. Like anyone else, they explain that each person’s vision for their own home uniquely reflects their interests, lifestyles, and preferences. And because they are in the driver’s seat, their homes are a place of pride, comfort, and joy.
Lincoln was unsure about moving into his own home until he had the opportunity, at a planning meeting, to express his vision for his own home. This video captures some of the planning, Lincoln’s Airbnb stay and moving day! Janice, Lincoln’s mum, shares important messages about planning and talks about the importance of starting early.
We are a group of self-advocates and educators working together to reclaim and teach others about intellectual disability history. Some of us are from a younger generation, who did not live in institutions. Nonetheless, many of us still experience institutionalized and unwanted forms of care and support. We have first-hand knowledge and diverse perspectives of what it means to live in communities that may continue to discriminate against people with intellectual disabilities. Our group also includes community advocates and researchers. These people help to organize the storytelling and activist work of survivors and younger generations with lived experience of intellectual disability.
Exclusion to Belonging houses three web-based projects developed by L’Arche Toronto. Listen to My Story is a collection of personal stories of institutional life by those who lived there and their families. “Birds Make Me Think About Freedom”, is a multi-media meditation on interdependence, inclusion, transformation and imagination, based on the testimonies of persons who were institutionalized, their families and friends. Healing and Belonging (coming soon) explores creative ways to listen to and support institutional survivors who have complex needs and limited means of communicating.