For the past two years I’ve been on a mission. While it probably started in my subconscious many years ago, the ‘Eureka’ moment was at the National Parents and Siblings Alliance AGM in 2007. That was when one of our members persuaded us to commit to looking at alternative ways for providing supports for people with intellectual disability and/or autism.
Let me explain in a few lines what I mean when I talk of ‘alternative systems of support and service’. At present, as everybody knows, the system for people with an intellectual disability is that they go to a service provider who provides a service. It could be a day programme or residential care or respite care or a combination of all three.
Unfortunately, many would feel that traditional services, at least to some extent, provide a service more connected to what the organisation has always given, rather than a service that the person needs. On the other hand, what I will call ‘alternative supports’ try to cater for the person’s specific individual needs, to bring them back into the mainstream of society and to remove the idea that people with an intellectual disability must live and socialise only with each other in groups. Instead, the person’s friends and companions would not necessarily be people with an intellectual disability. So, programmes are created to cater for the person’s needs and interests.
What many families fear is that such a system will mean cutting adrift from their service provider and accepting the burden of planning and organisation themselves. This could mean they would hire and employ all support staff. They would also take on the task of managing those staff—with all that involves. Of course, this is where family members take fright. They take fright because, for many, it really is frightening stuff! Yet the idea is simple and impossible to argue against. If we compare our lives to that of our sons and daughters with a disability: we don’t spend our day with a group of people trying to fill up our time—they often do. We are not likely to live for a large part of our lives in a house with a number of people whom we didn’t choose, under the control of other people who are employed to run the establishment—unless we end up in prison. We would not expect to have limits put on our opportunity to socialise. We would not expect to have limits put on our ability to eat what we wish. And so on, and so on.
It’s obvious that things are not good, but, for the average parent, there is no alternative! Well, a visit to Triest House in Portarlington on 16 Jan 2009 came as a welcome relief to me. There we met Hope Leet Dittmeier. She runs a small organisation in the US called Realizations.
Realizations has fourteen customers and is a mission-based organisation dedicated to creating custom supports that help adults with disabilities live in their own home, develop meaningful relationships, work, learn relevant skills, and obtain important roles in their community. They refer to the people they support as ‘customers’ because they believe that word more accurately reflects the nature of the partnership with the person, which is characterised by shared decisionmaking and responsibility.
Their customers live in typical apartments, condos and houses that they own or lease. Some live alone, others with a supportive roommate. Realisations helps customers move to their own home, including identifying housing, mobilising financial resources, recruiting live-in support (if desired) and creating a team of direct-support professionals who provide the day-to-day supports that help people live the life they want to live.
So, if they wish to avail of the services of Realizations, customers must first have their funding sent directly to them. They then take the money to Hope who will create a service using that funding. The service is based on the funding provided but Hope maintains that it costs less than a similar service would cost if provided by traditional providers.
Listening to Hope, if you’ll excuse the pun, gave me great hope for the future. Her service is based totally on a person-centred approach. I mean ‘person-centred’ in the way every family member ever imagined in their happiest dreams. As I said above, they call the person with a disability a ‘customer’ because, in the view of Realizations, that is exactly what they are. Their customers’ needs call the shots. A case, not so much of the customer being always right, as the customer’s needs and wishes being always right. Hope’s approach to staff selection illustrates the point.
First, the customer must have a detailed assessment of needs. This is not just a clinical assessment, but it also includes an assessment of the hopes and wishes of the customer. Then a service is built around that person. For example, Hope spoke of Jeff who was about to leave the institutions where he had spent a lot of his life. Because of his interests, one of the people employed to support him was a person with an interest in keeping fit and working out in a gym. Now, Jeff spends some of his time working out.
This raises the issue of who is employed to be a direct- support professional (DSP). Put another way, is it necessary to look for someone with training in intellectual disability who also has the required characteristics? Hope informed us that the majority of her DSPs have no professional background in disability. In fact, she said that she prefers it that way. What she requires is someone who can relate to the person with the disability and who has some special skill or interest to offer the customer. They are usually part-time people. Many are students or people who are trying to develop a career in areas like the arts, where, at the beginning of their career, work is short-term and often part-time. This suits Hope’s style of service because a customer’s needs might require short inputs from many different people.
The Realizations website describes DSPs as ‘interesting people with something to offer! That something could be commitment to a social cause, being a pianist, knowledge of the German culture, experience providing personal care, an interesting hobby, connections to a civic club, love of animals, etc.’ The description goes on: ‘People people [who] enjoy developing genuine, mutual, and caring relationships with others’.
Obviously, this begs the question, ‘what about staff turnover?’. Hope admits that there can be a high turnover of staff. She claims that because there are many people each offering their particular skills, this is not particularly disruptive for the customer. In fact, she says that even after, say, a DSP university student has left college, begun work and ended their contract with their customer, they often become a friend and keep contact.
Standards are very high in Realizations. There is a strong culture of service to the customer. Direct-support professionals are expected to have the highest regard for and courtesy towards the customer. For example, if a DSP arrives late three times without a good reason, that person is dismissed. Imagine that!
Another feature of Realizations which will amaze parents, is their policy of having all staff being involved in some way with the customers. So, each of the administrative staff has a customer that they provide support to for some period of time each week. Incidentally, each customer has a specific person assigned to them as their support coordinator. That person’s job is to ensure that all the customer’s needs are met and support is given throughout the required time each week. Also there is never a time when someone is left to fend for themselves or without support.
For this parent, on 16 January, the concept of alternative supports became a reality. Thanks to Muiriosa Foundation for that visit, and for the many other sessions they’ve had over the past twelve months and for making them available to staff and others—even parents on a mission.