I never thought I’d be in this place, almost 20 years after I watched my scrap of a daughter fighting for life in an incubator, just hoping she’d make it through another 24 hours. I never guessed that she would eventually survive and thrive and bring joy and happiness to so many, but be left with such severe disabilities that she will need life long support.
No empty nest syndrome here. The struggle for special needs services goes on and on. It is relentless, it makes no allowances for exhaustion or illness or old age or any other life events, when you are a special needs parent you are married to the fight until death do you part. And once your child becomes an adult it may become even more difficult. Because then the young adult in your care has no constitutional right to anything, and they may no longer be cute and loveable, so getting the public – or anyone else – to take an interest gets harder and harder.
My daughter B has just one more year to go before her first adult placement finishes. And I need to organise something else for her, so as soon as people returned from the summer holidays that we cannot go on, I began ringing and writing and emailing again.
And as I look at services for next year, I’ve started to consider the long term, what will happen if and when I can no longer look after her. And that’s hard, because I can’t imagine not living with her, nor can I imagine her living anywhere else, and I have nightmares about the reported abuses in residential services. All the talk right now is of personalised budgets and how these can enable disabled people to live ‘ordinary lives in ordinary places’ and I wonder how that can possibly work for someone as disabled as my daughter.
And when I see so-called success stories of people with disabilities living in the community I wonder are they just endorsing the current fashion for this idea, without mentioning any downsides? Sometimes I feel that my daughter and others like her are being excluded by a policy that cannot possibly accommodate her needs. Or can it?
My interest was piqued by this recent RTE News video from an Inclusion Ireland event featuring Fran O’Keeffe, a young woman described as having a profound disability who was living in her own home on the family farm. How could this work, I wondered? So I was really delighted when Fran’s sister, Molly, agreed to tell me more, and this is their story.
Fran grew up on a farm with her siblings, who are all close. When she was born, her parents were told that she had a profound learning disability and would never be able to understand anything. Thanks to their determination and the hard work of Fran’s mother Nuala, she more than surpassed those predictions, though she is still at present viewed as non-verbal and has very limited expressive communication. She is finding her voice since her move into her own home.
After leaving school, she moved into residential care with a day service as well, but it was clear from early on that this type of service provision based did not meet Fran’s needs as a person. She began to get sick and sad and her family wondered if there were any other options for her.
In 2006, Molly who was based in Trinity College, met with a range of people from overseas who had successfully supported individuals and their families to manage their own personalised budgets, and she learnt how having control over their money could give people with disabilities choice about how they live their lives.
It was a light bulb moment. If Fran could have access to the money allocated by the State for her support needs, then she could live a life in the community doing things she enjoys with the people she loves.
“As a family we sat down and tried to imagine the life that Fran would want,” said Molly. “Then we tried to make it happen.”
But that was just the start of a 9 year journey to persuade the Irish adult care system to find a way to release the money and give Fran that chance. Fran was involved at every stage, the family listened deeply to her so that she could make choices, and Fran was clear about what she didn’t like i.e. a place or a person or an activity.
“It is not an easy option,” says Molly. “It may not be for everyone, and that ok. It should be about choice, what works best for the individual and their family”. The individual and their family need to be offered real options, information and time to explore and choose the best option for them.”
The process was at times very challenging on the family, who were constantly told “no” by the system, at every turn. Endless excuses were made: her funding could not be broken out of the block funding for the service provider. Even if it could be, the loss of funding would cause the residential care facility to close, affecting other residents. And so on and so on and so on.
But the family never gave up, they just persisted with the phone calls, letters, meetings, lobbying of anyone who might be able to help. In 2014, Fran and her family began to work in partnership with Possibilities Plus. (This is an organisation that was set as a pilot programme through Genio funding to support the individual and their family to plan, design and manage an individualised living arrangement. Unfortunately, PossibilitiesPlus is currently at full capacity).
Finally in 2015 everything came together and Fran moved into her own home supported by her own support staff and her family. There had been a carefully planned transition and once she was into her own home, the family began to see Fran flourish. Almost immediately, her health improved, and over time so have her cognitive and communication skills.
Fran and the family have faced lots of challenges over the past 16 months. What they have discovered is that for Fran moving into her own home is the first step of the journey to an ordinary life. They now understand that there is lots of work ahead to support Fran to develop her relationships and to find her place within her own community. This will be a slow and ongoing process. She also still attends the same adult day service, when she chooses to do so.
“In finding her voice, Fran is indicating that she is ready for more opportunities to do ordinary things in ordinary places surrounded by ordinary people. She’s is now and will continue to gain more control of her days. Like most other adults.”
At no time during our conversation did I think that Molly was an untried idealist, viewing the world through a rose tinted lens of unrealistic expectations. Like the rest of us, she and her family have fought the system, the bureaucracy, the unbending rules, the fear of change and she was pragmatic enough to admit that everything is not now suddenly solved for Fran for the rest of her life. Things will change and there will be challenges in the future. It is not the end, it’s the start of a whole new phase.
And I realised that while I can’t yet imagine my daughter living an independent life, I no longer think of it as impossible. And that’s a start.