Home sharing: valued respite for people with intellectual disability

Lack of regulation and legislation around services highlighted in recent report

 Fidelma Kelly of  St Michael’s House: “It epitomises normalisation. Words like ‘social inclusion’ are bandied about a lot, but this is what the scheme is about and it is so important.”    Photograph: Eric Luke

Fidelma Kelly of St Michael’s House: “It epitomises normalisation. Words like ‘social inclusion’ are bandied about a lot, but this is what the scheme is about and it is so important.” Photograph: Eric Luke

 

The lack of regulation and legislation around home-sharing services for people with an intellectual disability is highlighted in a recent report of a national expert group. “There is a very limited monitoring and management resource allocated to home sharing nationally and as such, there remains a significant risk to the 853 people [455 adults and 398 children] who are currently in receipt of this service,” the expert group says in the report entitled Home Sharing in Intellectual Disability Services in Ireland, which was published in October.

Despite these concerns and the inconsistent nature of such programmes nationally, the expert group calls for the continued development of home-sharing services. They have been operating in a piecemeal fashion since the 1980s but in some areas, they have developed significantly during the past decade as an alternative to centre-based respite.

A significant investment and commitment is required by the HSE, the reports says, just to continue the service, never mind develop it. Home sharing is divided into three categories:

“Short breaks” families who offer a placement to a person with an intellectual disability in their home for short periods once or twice a month, caring for that person as a member of their family. An allowance is usually paid per break provided.

“Contract” families who are specialist carers and can provide regular short breaks to children and adults with more complex needs. An annual retainer is paid as well as a per session allowance.

“Shared living” families who provide full-time care to a person with intellectual disability, similar to a fostering placement. In these cases, usually a weekly or monthly allowance is paid.

The group makes 12 recommendations, including asking the HSE to appoint a national lead to support the implementation of the report. It also calls for the standardisation of allowances paid to home-sharing families and that the Finance Act be amended to exempt such payments from tax, as for foster allowances.

The HSE’s social care division is committed to further developing home sharing as a person-centred and community inclusive type of support, the HSE has told Health & Family. While recognising the advantages of such a scheme, “there are strategic and operational challenges in the delivery of this model of support within an Irish context and the report provides the blueprint for resolving these issues”, it says. Some €1 million was identified in the HSE’s national service plan (2016) for alternative models of respite care and this funding has been used for additional respite throughout the country.

“A HSE disability specialist has been designated as the national lead for home sharing,” it adds, “and an implementation plan to progress the work of the national expert group on home sharing is being devised.”

Fidelma Kelly, a member of the expert group and co-ordinator of the St Michael’s House home-sharing programme in Dublin, describes it as “a service without walls”. In her 24 years working in the disability sector, she has seen “a huge shift from congregated settings in the community, campus-like communities, to these tailored, individualised services that are so refreshing. “For me, it epitomises normalisation,” she says. “Words like ‘social inclusion’ are bandied about a lot, but this is what the scheme is about and it is so important.”

It is well acknowledged that respite assists in keeping care situations going as it gives the carer and person a break, says a spokesman for Inclusion Ireland, an advocacy group for people with an intellectual disability.

“For many carers, short breaks result in improved coping skills within the family, a reduction in stress and a carer having a feeling of control over their lives. The break allows the person with a disability to experience independence outside of their family and they are exposed to novel experiences that enhance their communication and social skills.”

Yet the provision of services is extremely disjointed across the State and in many cases, the spokesman adds, families are not being offered a service that caters to individual needs. The lack of regulation and legislation around home-sharing services for people with intellectual disability is highlighted in a recent report of a national expert group.

“There is a very limited monitoring and management resource allocated to home sharing nationally and, as such, there remains a significant risk to the 853 people [455 adults and 398 children] who are currently in receipt of this service,” comments the expert group in the report entitled Home Sharing in Intellectual Disability Services in Ireland, which was published in October.

Despite these concerns and the inconsistent nature of such programmes nationally, the expert group calls for the continued development of home-sharing services. They have been operating in a piecemeal fashion since the 1980s but in some areas have developed significantly during the past decade as an alternative to centre-based respite.

A significant investment and commitment is required by the HSE, the reports says, just to continue the home sharing service, never mind develop it. Home sharing is divided into three categories:

“Short breaks” families who offer a placement to a person with an intellectual disability in their home for short periods once or twice a month, caring for that person as a member of their family. An allowance is usually paid per break provided;

“Contract” families who are specialist carers and can provide regular short breaks to children and adults with more complex needs. An annual retainer is paid as well as a per session allowance;

“Shared living” families who provide full-time care to a person with intellectual disability, similar to a fostering placement. In these cases, usually a weekly or monthly allowance is paid.

The national expert group makes 12 recommendations, including asking the HSE to appoint a national lead to support the implementation of the report. It also calls for the standardisation of allowances paid to home sharing families and that the Finance Act be amended to exempt such payments from tax, as for foster allowances.

The HSE’s social care division is committed to further developing home sharing as a person-centred and community inclusive type of support, the HSE tells Health & Family. While recognising the advantages of such a scheme, “there are strategic and operational challenges in the delivery of this model of support within an Irish context and the report provides the blueprint for resolving these issues”, it continues. Some €1 million was identified in the HSE’s National Service Plan (2016) for alternative models of respite care and this funding has been used for additional respite throughout the State.

“A HSE disability specialist has been designated as the national lead for home sharing,” it adds, “and an implementation plan to progress the work of the national expert group on home sharing is being devised.”

Fidelma Kelly, a member of the expert group and co-ordinator of the St Michael’s House home-sharing programme in Dublin, describes it as “a service without walls”. In her 24 years working in the disability sector, she has seen “a huge shift from congregated settings in the community, campus-like communities, to these tailored, individualised services that are so refreshing.

“For me it epitomises normalisation,” she adds. “Words like ‘social inclusion’ are bandied about a lot, but this is what the scheme is about and it is so important.”

It is well acknowledged that respite assists in keeping care situations going as it gives the carer and person a break, according to a spokesman for Inclusion Ireland, an advocacy group for people with an intellectual disability.

“For many carers, short breaks result in improved coping skills within the family, a reduction in stress and a carer having a feeling of control over their lives,” he says. “The break allows the person with a disability to experience independence outside of their family and they are exposed to novel experiences that enhance their communication and social skills.” Yet the provision of services is extremely disjointed across the State and in many cases, he adds, families are not being offered a service that caters to individual needs.

Home Sharing in Intellectual Disability Services in Ireland (HSE 2016) can be downloaded from hse.ie

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