Sarah Lennon takes a close look at what the new legislation really means in practical terms for people with an intellectual disability, helping them to determine their own lives and activities...
The Assisted-Decision Making Act is now the law and will come into effect later in 2016
This will change the way services have to do things
Up until now, a service-user might go to a doctor or the chemist with different staff member. Also, there may have been blocks to them signing leases or having their own bank accounts etc
With this law, service-users can name who they want to support them in areas of their life
It is a law that tries to help the service-users own preference and will be the guide to decisions in their lives
The Assisted-Decision Making Act is now the law of the land, so we have a bit of a wait until the law comes into force later this year – enabling us all some time to get our heads around the implications of the new law and how it will practically change all of our lives.
What is clear, is that it is going to mean huge legal, cultural and attitudinal changes for us all. There will be some help along the way, the new Decision Support Service will issue codes of practice once it has been established – handy guides along the way. In the meantime, we all need to familiarise ourselves with how the law could change how we need to do things from now on.
To illustrate this, let’s consider ‘Sarah’. Sarah is an imaginary woman, with an intellectual disability, living in an imaginary residential facility but facing many of the real decisions and experiencing the real types of roadblocks that individuals experience daily.
Sarah has a chest infection and needs to attend the GP. The staff roster will often dictate who goes with Sarah to the doctor and who takes her prescription to have it filled. Sarah feels that the doctor spoke to the support staff and not to her and was not asked for her opinion or consent during the process. Sarah will be given her new medication at the designated time. Sarah is also unhappy that a different staff member goes with her to the doctor each time and would like some consistency in her support.
Sarah receives a weekly disability allowance, and the Department recently switched the payment from post office to bank account. The bank that Sarah uses insisted on her opening a joint-account with her mother as they did not believe that she had capacity to manage the account on her own. Sarah’s mother was reluctant to do this but the bank insisted. Sarah’s mother is worried that Sarah could become a Ward of Court if anything happened to her or the account would be frozen. Sarah manages her day-to-day finances but doesn’t have experience using the ATM.
Sarah is also in the process of moving to the community from the residential facility. She is looking for a new home in the community but nobody seems to be clear about who can sign the lease. Sarah also needs to get gas, electricity, phone, waste disposal and other services that require a contract. Sarah’s sister has volunteered to co-sign the lease but the landlord isn’t too keen on that process.
What we can see is that a series of blockages have cropped up, and in the absence of a clear legal framework a series of informal processes have evolved. In making our new system work, these informal processes will need to be unbundled and a new way found, of looking at decision-making using the Assisted Decision-Making, Co-Decision-Making and Decision-Making Representation structures. Although we cannot ascribe each system a category of decision-making or say which system best suits someone with a mild intellectual disability or a moderate intellectual disability etc., we can start to look at how things may be done differently for these everyday situations.
If we take Sarah and look at the effect of the new law over her life, there are many different options available to her. First of all, Sarah must be presumed capable of making all her own decisions herself, and if she wants support it must be a person of her choosing.
Sarah may wish to choose an Assistant to support her around going to the doctor. This person must be someone she trusts and with whom she has a personal relationship. The person should also be available and willing to support Sarah. Sarah would choose her cousin Annie, as she lives nearby, and is of a similar age. They also get along well and share trust. Annie could attend the doctor with Sarah, help her to understand the things the doctor says and help her to communicate a decision.
Annie does not make the decision for Sarah. The relationship is registered with the Decision Support Service, as evidence that Annie is Sarah’s Assistant for medical decisions so the GP cannot refuse Annie entrance and nobody else can take Annie’s place unless Sarah chooses another Assistant. Although staff in the service have taken care of these decisions for Sarah up to now, they cannot do that anymore as even if she wants her Assistant to be a staff member, the law doesn’t allow owners, managers or staff from residential units to carry out this role.
Although Sarah has a joint bank account with her mother, it is only Sarah’s Disability Allowance that goes in. Under the new system, Sarah could choose her mother as a Co-Decision-Maker for her financial decisions instead and register this with the Decision Support Service. This arrangement would involve Sarah and her mother making all decisions together. Sarah’s bank account would only be in Sarah’s name but Sarah and her mother could make decisions together. Were something to happen to Sarah’s mother, and she could no longer support Sarah, she could choose another person to be a Co-Decision-Maker. Like the Assistant, the Co-Decision-Maker must be a person with whom she has a personal relationship. Sarah’s mother can explore using the ATM with Sarah, as one of the guiding principles of the new law is that individuals should be encouraged to improve their decision-making capacity.
Finally, in respect of Sarah moving to the community, she could call on the full gamut of decision-making supports around the process if she wants them. Depending on the complexity of the decision, Sarah may require a different support for each decision. If she enjoys good decision-making capacity around paying bills or grocery shopping then an Assistant or Co-Decision-Maker may suffice. If there were significant concerns around Sarah making serious financial decisions such as entering a tenancy, then an application to become a Decision-Making Representative could be made. This application is made to the Circuit Court and the person bringing it must show that Assisted Decision-Making and Co-Decision-Making are not sufficient or suitable. In Sarah’s situation, her sister Alice could apply to the Court – in practical terms this means that Alice would sign the lease on behalf of her sister. However, at all times, Alice must observe the will and preference of her sister. Alice, knowing that Sarah loves the cinema and shopping, chooses a property near the town centre, rather than the property closer to the service or the GP, because this is what Sarah would choose for herself.
The examples above are not exhaustive and every individual will need their own specific support. This examination will hopefully go some way towards illustrating in practical ways the manner in which the new law will change the customs and cultures that were created while we waited for the law to change. The new focus is on what support a person needs to make her own decisions, from her own natural support structures and how to express her own will and preferences, sometime through other people who know her well.