‘Soul-destroying’ lack of funding to move people with disabilities back into community

State policy to enable people with disabilities to move from large-scale care centres to community-based support where they can thrive is underfunded to a “soul-destroying” degree, the Oireachtas Committee on Disability Matters has been told.

Following a range of submissions from charity-funded service providers and service-users, Fine Gael TD Emer Higgins said it was “soul-destroying” that additional training for nurses and care-givers was being funded by charities.

She was speaking after Padraig Mallon of the Co Cork-based Crann Centre said its efforts to support 300 families which include people with disabilities to live more independent lives received no funding from government.

The centre works with children, adults and families living with a range of conditions from spina bifida and hydrocephalus to conditions acquired through spinal injuries and stroke. Mr Mallon told the committee “these are complex conditions, which significantly impact the fabric of the family, requiring life-long clinical care and intensive in-community supports”.

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“There are over 7,000 people in Munster living with a neuro-physical disability. In addition there are over 20,000 family members whose lives are impacted – all requiring services and supports.”

But he said while referrals from the HSE were increasing weekly, Crann was dependent on charitable fundraising for 100 per cent of its work. Crann had applied for “modest” State funding without which “we cannot guarantee the future of this vital service which is not available elsewhere”.

Crann service-user Aileen Buckley told the committee her family had been concerned about her daughter, who has spina bifida and hydrocephalus and uses a wheelchair while accessing secondary school. She said Crann’s programmes including mobility training and training in independence and confidence measures had been “invaluable”. Ms Buckley said Crann had provided “lots of supports for me and all of my family”.

Tara Doheny, reform manager with the Genio organisation, said it had developed a methodology and training programme to help services reorientate towards community-based, self-directed supports “and to overcome deeply institutionalised practices”.

As part of the State’s Service Reform Fund (SRF), Genio advised on reform strategies, supported the implementation of change and provided resources from a fund of €45 million comprising public and philanthropic resources to implement change across the fields of disability, mental health and homelessness, Ms Doheny said.

She said healthcare staff were often supportive of change, particularly once they saw significant improvements.

Responding to the submissions, Ms Higgins said responsibility for services for people with disabilities was “siloed” between various agencies as diverse as the HSE, the Department of Transport and local authorities. She welcomed the person-centred approach outlined by Crann and Genio, but said it was incredible that additional training for care-givers was not fully funded by government. “We need to get to a position where every family gets that support,” she said.

Committee chairman Michael Moynihan TD said " for too long people with disabilities were treated with a medical model – we need a social model of care”.