Frustrated father gets a hearing

04:23, Sep 27 2012
A LITTLE RESPITE:  Peter Humphreys and his daughter Sian, who has Angelman syndrome, protesting outside parliament yesterday.
A LITTLE RESPITE: Peter Humphreys and his daughter Sian, who has Angelman syndrome, protesting outside parliament yesterday.

A frustrated father who drove his severely disabled daughter to parliament to protest against lack of respite care has been granted a face-to-face with Ministry of Health officials today.

Ngaruawahia resident and Hamilton Christian Nightshelter co-ordinator Peter Humphreys took the drastic action after Spectrum Care announced in March that it would cut the Horotiu Respite Service from five beds to two, due to a consistently low 35 per cent occupancy rate.

Mr Humphreys said the service has now been transferred to Rototuna where there will be three permanent beds and two for respite.

It's not enough for the 20 families that rely on it and it's also a nation wide problem, he said.

Private company Spectrum Care is contracted to provide respite for adults with intellectual disability, autism, and physical disability. It makes decisions around how it operates within the terms of its contract.

Mr Humphreys' daughter Sian, 23, has Angelman's syndrome and has high and complex needs.


She requires 24-hour supervision, has uncontrolled seizures and requires medication to bring her out of status epilepsy.

During weekdays she gets one-to-one care while Mr Humphreys and his wife work full time.

The only time they have to focus on their other children, friends and themselves is when Sian's in respite at weekends.

Mr Humphreys said many families are in a similar situation and that puts pressure on beds during Saturdays and Sundays.

Since 2001, the Humphreys have had two weekends per month to themselves but the changes have carved that down to one.

In a letter responding to their concerns, health minister Tony Ryall said that given the demand for respite services in other regions, and the waiting lists that exist, all services must be well used to justify ongoing funding.

"I am assured that respite will still be available for families in the Waikato region."

Mr Humphreys and Sian were at parliament protesting yesterday and will return today from 11.30am to 1.30pm before the 3.45pm Ministry of Health meeting at The Terrace.

Mr Humphreys said his family are asking Mr Ryall for an ordinary life every second weekend.

"A life where we are not changing nappies or showering our daughter. A life where we don't have to brush her teeth. A life where we are not giving suppositories to our child to save her life.

"Most of all we would like to spend time with our other children who have always had to come second."

National Health Board spokeswoman Jill Lane said there had been greater flexibility around which day Sian could receive respite, due to fewer people using the service.

"The Ministry closely monitors demand across the country and funding is shifted to where there is higher need.

"Sian and her family continue to get respite care. However, access needs to be equitable for all families who need the service, and therefore no family can be guaranteed respite every second weekend.

"The Ministry is using some of its increased disability support funding [$144m] this year to improve the provision of respite facilities around the country, which will help achieve improved outcomes for disabled people and their families."

Waikato Times