The government has been urged to introduce
urgent changes to the law to resolve decision-making
problems facing parents and carers of people with
intellectual disabilities who need medical attention. At
present, medical or surgical procedures cannot be carried
out without the informed consent of a patient over 16
years of age.
However, the law is not clear on what constitutes
informed consent, or what happens if the person is not
capable of giving their consent.
The only system for decision-making for adults under
Irish law is the 140-year-old Lunacy Regulation (1871)
under which a person becomes a ward of court. However,
once this happens, that person loses the right to make
any decisions about their person or property.
Inclusion Ireland, the national umbrella group for
people with intellectual disabilities, has said this is
"totally unsatisfactory" and that major gaps in the law
need to be addressed.
It said that the lack of clarity over intellectually
disabled people's rights means there is widespread
confusion over what happens when family members disagree
with a doctor, or each other, over what is the best form
of treatment. As a result, it is the responsibility of
medical professionals to make a final decision.
Among the gaps in the law it has said it wants
addressed is the introduction of a formal system to
assess whether a person has the capacity to consent to
medical treatment. It has also called for the
introduction of a legal basis for a person to give
consent on behalf of a person with an intellectual
disability to medical treatment, although this is often
done informally.
"It is clear that Ireland requires a form of supported
or substitute decision-making law. This means that the
present system will have to change and that an adult with
an intellectual disability who does not have capacity can
have an appointed person to assist him/her make
decisions," a spokesperson for Inclusion Ireland said.
Inclusion Ireland is today publishing an information
booklet to provide parents and families with information
on current practice in this often complex area.
The Government said it is preparing a new Bill on
Mental Capacity and Guardianship, which follows on the
recommendations of the Law Reform Commission report on
vulnerable adults. It is expected to include statutory
recognition to informal decision making by carers and
professionals. This would preserve the role of families
and carers in the lives of adults "who lack capacity by
giving a statutory basis to informal decision
making".
Another provision of the proposed law is the
appointment of a personal guardian. This individual would
deal with matters in relation to the property, financial
or personal affairs of the individual.
A major push towards greater supported and assisted
decision making is being driven by the UN Convention on
the Rights of Persons with Disabilities, which the
Government has signed, but not yet ratified.
This convention states "that persons with disabilities
enjoy legal capacity on an equal basis with others in all
aspects of life". The Article continues that countries
which ratify it should ensure that any measures relating
to the legal capacity of people with disabilities provide
appropriate and effective safeguards to prevent
abuse.
Source:
By Carl O'Brien, Social Affairs
Correspondent ©
2008 The Irish Times
