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New research has highlighted what kind of support people with intellectual disabilities consider important to live independently in the community.

The Donald Beasley Institute report conducted by Dr Brigit Mirfin-Veitch and Dr Jenny Conder, entitled ‘From presence to belonging,’ interviewed people with intellectual disabilities about their lives, the things that were important to them and how they managed from day-to-day.

Recent disability policy in New Zealand aims to support people so that they can make their own choices, but there are concerns that people with intellectual disabilities who are living independently might then be at risk of poor health or social isolation.

Co-author Jenny Conder says that most people found ways to live that meaningful to them.

While the results show most participants were happy with how and where they were living, they said what was important to having a good life was about having people in their lives who could provide advice or support, and having access to the right kind of health and financial services.

It recommends that when people with intellectual disabilities need help to make a decision, they should be able to choose who helps them.

“People with intellectual disabilities have been demanding greater independence in their daily lives for some time,” says Dr Conder.

She says that adults with intellectual disabilities want family to be involved in a way that is respectful – to help when needed, but to also let them develop skills for independent living.

“Families need to be recognised for the major role they often have in helping with decision-making through protecting the person with intellectual disability’s right to choose.”

The report identifies that education and training is needed to help people with intellectual disabilities, family members and disability support service staff to understand and use supported decision-making.

It also recommends a review of funding for budgeting services and a service to be available nationwide, so that people with intellectual disabilities can access help to manage their money.

“Health services, especially primary health care and dental treatment, also need to be more affordable and consistent across New Zealand.”

The research was commissioned by IHC Advocacy, and funded by the IHC Foundation.

IHC Director of Advocacy Trish Grant says what participants said has reinforced what we know about the pivotal role of families as the primary, and most continuous, relationship for people with intellectual disabilities.

“Policy and practices need to respect and respond to families in ways that are more than that of a ‘carer’ role.

“This includes helping families know when to step up and step back, and to invest early and support people to stay connected with their families, friends and culture.”

Trish says having the right policies and legal frameworks includes developing coherent laws and funding practices.

“This includes recognition as valid decisions, knowing who can sign agreements, be an employer, where liabilities lie and protections for individuals, families and service providers.

“Increasing choices and decision-making authority should not be limited to those who are seen as ‘more able’.

“We have to make intentional efforts and work hard to include people who experience more severe impairments and communication difficulties, and those who rely on others to help represent their differences.”

ENDS