Fears young people in nursing homes will miss out on NDIS

Most of Australia’s 6,000 young people living in residential aged care will miss out on the National Disability Insurance Scheme as many lack the skills, advocacy and support networks to access the scheme, a senate inquiry has been told.

In its submission to the inquiry, the Summer Foundation called for a national strategy to drive their registration to the new scheme to ensure young people in aged care get equitable access to services and equipment funded through the NDIS.

Initial research has found that 58 per cent of young people in nursing homes are not registered with the National Disability Insurance Agency in the NDIS trial sites and more than 18 per cent do not have anyone to advocate for them.

The foundation said most people would miss out unless someone goes to each facility to “find, engage and support” them to register with the National Disability Insurance Agency (NDIA).

The registration process should also be streamlined and there was scope for NDIA to use Commonwealth aged care data to locate and inform everyone under 65 living in aged care about their entitlements, the advocacy group for young people in nursing homes said.

In the short-term, a support project should target the 321 people under 65 in the trial sites to access the NDIS and a larger strategy developed in preparation for the national rollout from 2016-2019.

“The NDIA systems and processes seem to assume that participants either have the cognitive capacity to complete forms or alternatively have access to a family member or a formally appointed guardian who is able to complete paperwork on their behalf – this is often not the case for the marginalised population of young people in residential aged care,” the submission said.

The Summer Foundation said young people with disability living in aged care are one of the most marginalised and socially isolated groups of people in society. Just over half (53 three per cent) reported receiving a visit from a friend less than once a year and 82 per cent said they seldom or never visited their friends. A significant proportion also never participated in activities in the community, according to the foundation’s research.

New housing strategy

To support younger people to live independently in the community, the Summer Foundation also called for a range of more accessible and affordable housing to be built.

“The NDIS provides the best opportunity in a generation to address the unmet demand for services and supports to people with a disability, but it cannot do it alone. Collaborative approaches with the housing, health and aged care sectors in particular need to be in place,” the Summer Foundation wrote.

It said unless the current shortage of housing was addressed, the foundation did not expect many young people to move out of aged care as a result of the NDIS. (Related coverage: NDIS not the panacea for young in aged care)

Aged and Community Services Australia agreed the lack of affordable and appropriate housing was a major obstacle to young people’s choice over where they wanted to live.

“The dearth of affordable housing options catering to people with a wide range of needs threatens the success of any attempt to support people with disability to avoid entry into residential care and to assist those who do live there, to move to more appropriate accommodation,” the peak body wrote in its submission.

Aged care funding

ACSA told the inquiry aged care providers do not necessarily have the skills, experience or resources required to adequately support people with severe physical, mental or intellectual disabilities and the term disability was not mentioned anywhere in the Aged Care Act.

“The cost of ongoing rehabilitation, extensive allied health support, complex clinical care, assistive technology and disability specific case management are not recognised or accounted for by the Aged Care Funding Instrument.”

To recognise these higher costs, ACSA recommended that where residential care is used as a short-term option, the NDIS should be able to fund a person’s stay.

In its submission, the Young People in Nursing Homes National Alliance also raised appropriate funding for younger residents in aged care during the transition to the full NDIS as a key issue.

“Given the proven inadequacy of aged care funding levels for younger residents, a key question for this inquiry is whether, prior to the full rollout of the NDIS, the aged care funding structure should be retrofitted with an additional boosted funding level for residents under 65 years, or disability services programs should be required to co-fund the supports for these residents in aged care,” the submission said.

The national alliance recognised that aged care would continue to provide a transitional option for people until the appropriate housing and service options in the community were developed.

However, to meet the needs of this cohort aged care services must be backed-up and coordinated with health in-reach services and disability programs, the alliance said.

“Until the NDIS is fully rolled out and mature, these cross sector agreements will be crucial to successfully addressing the young people in nursing home issue.”

Impact of LLLB reforms

Elsewhere, the Summer Foundation said the recent aged care reforms and the shift to a more user-pays system was having a “perverse impact” on young people in aged care and causing significant financial disadvantage.

The Foundation said once young people with a disability entered aged care they often found it very difficult to return to the community if they sold their home to pay for aged care fees.

While the user-pays system may be good policy for older people’s permanent admission to aged care, it was inappropriate for young people with a considerably longer life expectancy, the foundation said.

Over 300 people under 50 are admitted to nursing homes each year in Australia and this senate committee inquiry represents the first dedicated inquiry into the issue.

The senate inquiry’s public hearings commenced on Tuesday.