A Sixmilebridge family say they’re under intolerable strain to care for a seriously ill child, pending the ironing out of concerns over new regulations in a care package being offered by the HSE.
Since January, the HSE has introduced a new clause in all home care plans for sick children.
It requires a parent, or other suitable adult, to be at home at all times with the child while the agency staff are also present.
The family of Jordan Perez say they won’t accept the package on offer until the controversial clause is removed.
10-year-old Jordan Perez has spinal muscular atrophy, which is a degenerative disease of the muscles.
He’s wheelchair bound and has complex care needs.
In January of this year, his family say they were shocked to learn of the introduction of an ‘in loco parentis’ clause in their home care package.
It affects five other families in Clare and, in practice, means a parent – or other nominated adult – would have to be at home at all times, while nursing or care stuff were present.
Jordan’s family say this affects their ability to work and to care for the four other children in their family.
They have decided not to sign their care contact while the clause is in place and have privately hired a health care assistant for day time.
Sinead Perez who cares for her son at night, says that without HSE support the strain is huge.
In a statement to Clare FM, the HSE Midwest says staff ‘will not assume sole responsibility for a child where parents may not be available’.
In that case, the HSE’s stipulating that parents must find an appropriate adult to act in their place.
Sinead’s partner Anton believes the clause is simply unworkable for most families of seriously ill children.