The Huntington's Scene In  New Zealand

Site Maintained by
Graham Taylor

Articles taken from the June 2004 Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand


In this Newsletter edition we are taking a number of related questions, which have arisen through Field Officers and combined the queries into one answer. All pertain to individual adults who are aged 16 -64.

Question one:

Recently I befriended my neighbour and offered to provide transport to the shops and to medical appointments as needed. I have since learned that S.P. has Huntington’s Disease and that S.P. feels that there is no help available. S.P. lives alone and looks thin and stressed. What can I do?

Question two:

I am a Dietician and have received a referral about S.P. When I visited the home to discuss nutrition needs and possible solutions I became aware of the apparent lack of home support for S.P. and the family. One hour per week home help has been approved but the family have to pay for it. Surely there is more help available?

Question three:

My ex-spouse S.P. lives alone and when our young adult children visit they are very upset about the worsening living conditions of S.P. The place is messy, untidy, smelling of mould, dirty and generally in a poor state of housekeeping. S.P. would not have lived like this before Huntington’s Disease. S.P. is allocated two hours home help a week—what is the helper doing?

Question four:

Please advise us, the Home Care agency about Huntington’s Disease as one of our clients (S.P.) is stopping the home helper from doing the approved tasks. S.P. wants the worker to do other things that are not on the approved list. Arguments and disagreements must be avoided if we are to keep workers coming in to the home. Already workers have withdrawn because they cannot complete their jobs and because of S.P’s attitude.

Question five:

Help us help our parent with Huntington’s Disease. S.P. lives alone in a small rental flat and spends so much time each day cleaning. We are very worried because S.P. is using up so much emotional and physical energy cleaning floors, walls and windows when there is nothing to be cleaned. And S.P. climbs on furniture to reach the high parts and already has fallen a few times. S.P. needs help to stop cleaning and to conserve energy.

Question six:

Our home help worker is struggling to do the required jobs in the home because S.P. does not buy the equipment and products needed to do the work properly. We have asked S.P. many, many times to no avail and will have to stop the service unless supplies are available. What do you advise?




It appears that the S.P. in each of these situations has been referred to the Disability Support Services (Ministry of Health) either by themselves, by the doctor, family or Field Officer. A referral gives S.P. access to the local NASC (Needs Assessment and Service Co-ordination) Services. The referral will be processed and a Needs Assessor allocated who will make contact with S.P. for an interview appointment in the home of S.P. The Needs Assessment process results in a determination of need, eligibility criteria and recommendations for the Service Co-ordinator.

Through the Service Co-ordination process a matching of need to funding and suitable Home Care Services will be done and reported back to S.P. From there the Home Care Services will usually have a supervisor visit and discuss with S.P. how to best provide a worker or workers. How the approved “hours of home help” or “personal care” will be best organised is also discussed with S.P. as will whether these will be fully funded or not. Usually if S.P. has a Community Services Card, the home help is provided by NASC but without the card S.P. will be charged for home help, but not personal care.

If S.P. is determined to be independent or is reluctant to accept helpers into the home, there are plenty of “windows” during the process for S.P. to decline help even before a worker is engaged. If S.P. gets to the point of accepting a home help worker, then there may need to be a period of adjustment to this new situation and new person visiting to carry out the approved jobs.

The home help worker may or may not be trained to work with individuals with Huntington’s Disease and will be trained to get approval and agreement from the client. And yet they will also need to be accountable for their task completion to their employing Home Care agency. It may be difficult to match S.P. as an individual with skilled helpers who are able to work happily alongside S.P. And it may also be difficult for the agency to keep staff or to cover when staff are ill. These are difficulties to be understood, prevented and solved if S.P. is to be supported at home.

When working partnerships do not develop or when issues are unable to be resolved, then a third party may be needed to ensure that S.P. is best supported by the staff of the agency. Even the best of workers may be tested to their maximum by the challenges presenting to them as described in the questions and they may benefit from specific information on ways to approach issues with S.P. and or the family. A new or change of worker may be required from time to time, but it is really the responsibility of the Home Care agency to ensure that they provide the services needed. If the approved funding level for services is inadequate then a review of the Needs Assessment can be requested.

Situations can and do arise particularly when there are differing opinions about what services “ought” to be provided, what Standard of housekeeping “ought” to be expected and what S.P. “ought” to be entitled to. Clear communication between those involved and those with knowledge and experience of S.P. is essential to keep the support going into the home.