Advocacy is an alluring concept. Everything thinks it is great—like apple pie and motherhood. But advocacy, while intellectually seductive, is nothing if it is not complex. An advocate is defined by Webster’s dictionary as ‘one who pleads the cause of another; one who defends, vindicates, or espouses to the cause by argument; a pleader in favour of someone; an upholder; a defender who supports and vindicates.’ Essentially to advocate for someone is not simple or easy, but then things worth fighting for seldom are simple or easy. To illustrate from clinical practice the many questions that present when attempting to advocate, consider the life of Mary.
Mary is now 30 years of age. Unlike her five brothers and sisters, who are married and have moved out of the family home, Mary continues to reside with her mother and father in their terraced house in a small village in the midlands. After Mary finished in special school, she began attending a local Activation Unit run by the Parents and Friends-sponsored service. This worked out well for Mary’s mother and father for several years. She was collected every morning in the white minibus and brought to the nearby town, 12 miles away, by the same driver in the same vehicle every morning. Mary presents as a tall, attractive woman and those who meet her frequently comment on her good looks. One day, when Mary came home from her day service she was upset. Unable to describe why she was upset, her mother and father made enquiries. The driver of the bus spoke to them about a new attendee who was infatuated with Mary and relentless in his overtures towards her. The bus driver thought that ‘nothing had happened’, but her parents, convinced that there was a real possibility of ‘something happening’, withdrew her from her day service.
Mary is now no longer availing of her day placement and her parents complain that they are stressed from the restrictions placed on their lifestyle when they have to meet Mary’s needs before they can do anything for themselves. They are reluctant to consider sending Mary back to the service and staff worry that Mary is losing out on many of the varied activities and stimulation which it used to offer her.
There is an unspoken fear that disempowers those who try to advocate for Mary and her parents. And this acts as a barrier to resolution. The ‘What if something happens …?’ suppresses the energy and creativity required to move forward.
Consider Danny. Danny is 42 years of age. Since his mother died thirteen months ago, he has been living on his own in a bungalow outside a busy town. His mother married Danny’s father after he had become a widower. His new wife, Catherine, moved into his home and helped to rear Danny’s older five half siblings. Sadly Danny’s father passed away when he was 10 years of age. When Danny’s mother was unwell, her stepchildren, Danny’s half siblings, vowed that Danny could continue living in his home and that they would take turns staying there with him.
They assured her that there was no need to make a will, and that they all had Danny’s best interests at heart. After all, she was their stepmother and had been good to them when their father’s first wife had died. Danny was always a capable young man, with Down Syndrome, and he had a place to go each day to the local resource centre where he was popular with his peers and engaged in horticulture, arts and crafts, and went swimming once a week.
Initially, after Catherine’s demise, Danny did well enough on his own with his half siblings checking in on him. By and by the clean and tidy bungalow started to look in need of attention. The front lawn was overgrown, house repairs were becoming inevitable, and the interior was getting more and more unkempt looking. While Danny could manage light housework such as doing his washing-up, he had difficulty with things like cleaning the bathtub and washing the kitchen floor.
Eventually Danny’s half siblings stated that they could no longer keep a check on him and that he would have to move out of the house. The property had been left to them and not to Danny. They demanded that a place be provided for Danny in a group home, where they deemed he would be ‘better off’. They stated that Danny’s health was deteriorating and they put that down to the fact that he was now going to the pub in the evenings instead of coming straight home from the Resource Centre.
Danny was asked what he thought about his life. He stated that he was lonely and that he missed his mother. He said that he went to the pub in the evenings because it was warm, and he wanted someone to talk to. He did not want to leave the only home he had ever known, but he was afraid at night when he heard noises.
In this case, efforts to advocate for Danny are thwarted by his half siblings who have done a u-turn on the promises they made to their stepmother before her death. In fairness, their circumstances have changed, they are busy people, they do not have time for Danny, and due to the downturn in the economy they would benefit from the bungalow being sold so they can liquidate the assets associated with their inheritance. The biggest barrier is that their solution focus is restricted by the one-dimensional problem solving which is simple as far as they are concerned—i.e. move Danny to a staffed facility. They are resistant to a range of other suggestions such as supporting Danny to continue to reside with supports where he is, moving funding from his day service to support Danny in activities of daily living within his own residence, and engaging a circle of support around Danny.
Now let’s consider Fiachra, who is the eldest son of three now-adult children. He has two highly skilled professional parents. Fiachra is now 24 years of age and his siblings are all at university. His mother and father are thinking about retiring from their professions. Fiachra is a relatively bright young man whose autism imposes restrictions on his coping skills. For example, Fiachra can do many things for himself, but he will sit in a self-absorbed state unless verbally prompted by his mother, when he is at home. Both Fiachra’s parents are concerned that when they retire their lives will be dictated by Fiachra’s support needs. While they live in a large palatial home, they are seeking an out-of-home placement for Fiachra. They feel this would be in a village complex for people with autism.
An obstacle advocating for an individualised service for Fiachra is that his parents are adamant that they want him ‘away’ as soon as possible. They feel that because Fiachra has autism, he should be prioritised on the waiting list for a residential place that they think they are entitled to.
Fiachra tries hard to please his mother and father and becomes distressed when they are not happy with him. He has not expressed a desire to leave home.
In advocating for Mary, Danny and Fiachra (and many other people with similar stories), the need for a set of guiding principles becomes evident. The quandaries outlined suggest such questions as:
1. What is the best interest of the individual?
2. How can we safeguard the individual’s basic civil rights as a citizen of Ireland? (Shouldn’t they have the same rights as you and I?).
3. Is what we are doing ultimately going to leave the person in a more vulnerable position? (This often happens when people leave their home and find themselves in staffed facilities where they do not have as much autonomy as previously.)
4. Is the solution we propose from ‘off the shelf’ in ‘service land’? Examples of this are common enough, i.e. someone dies in a community residence and suddenly a vacancy becomes an opportunity for someone on a waiting list. While this may provide a ‘bush in the gap’ solution, does it really reflect the vision we might have for each individual?
5. Are the needs of the agencies and service providers overshadowing the needs of the individual? For example, is the threat of losing funding if they do not provide a traditional service?
6. Is what is being offered driven by other agendas (perhaps better ‘value for money’?)
7. What Guiding Principle in Advocating for Vulnerable Adults do we have reference to?
8. How can families be guided towards a sustainable ‘good life’ for their family member with a disability?