Dorothy Tortell : Why is there a need for specialized houses

1 Introduction - History

Although there is an agreed principle that those with HD should be supported to enable them to be cared for at home for as long as possible, the time may come when some will need to move to a residential unit. Even for those who continue to be cared for at home, there is an intermittent need for appropriate daycare and regular respite care. Unfortunately, the units which have been available until recently, have been designed for the elderly or for those with psychiatric needs. These institutions have endeavoured to accommodate the needs of those with HD but this has often been very difficult for both staff and clients. A facility which is designed with the needs of those with HD in mind is better able to provide the necessary care and support.

For many years the WHDA has felt the need for specialized units and has made numerous representations about this. This need has been recognized recently by the Ministry of Health. About 18 months ago the process which was to lead to the establishment of an HD unit was initiated through contacts between MOH and the Association. This collaborative relationship has seen the Association working closely with the MOH and its selected provider (NZCARE Ltd). We value the opportunity that we have had to participate in the planning process for the unit.

2 Why specialized units

In the past when a person with HD was admitted to one of the existing institutions, family members often complained that care was not always appropriate due to a lack of understanding of the condition. Staff were not trained in aspects of HD and, for example, may not have been aware of the dietary requirements of those with HD, the need for a calm and quiet environment, the need for a daily routine, the need to avoid confrontation and understand the client’s anxiety, depression and inflexibility that often arise from the condition.

Physical facilities designed and built for the elderly or those with psychiatric conditions were not always adequate for HD clients. The buildings were often large complexes. Rooms were small and corridors were narrow. En-suite facilities were rare. Single beds were the norm. Dining rooms and common rooms were large to cater for the large “population” and as a result they were noisy and unfriendly. A specialized residential unit for those with HD should be as much as possible like a home for a large “family”.

Some facilities were located away from residential areas and this created two problems. Firstly, family members faced difficulties when wanting to visit. Secondly, it was not possible for the clients to feel part of a community outside the institution. Residents should be able to participate in the surrounding community – for example go shopping, to the pub, and go to the library.

In the Wellington region, Greytown Hospital was the first facility to encourage those with HD to spend time on respite care. As a result staff became very skilled in the care of HD and Greytown became a centre of excellence for HD care in the region. When Greytown Hospital closed, NZCARE Ltd opened Noel Hamilton House, a facility designed specifically for the young physically disabled. This concept is the closest we have to a unit which is designed specifically for those with HD. It has certainly helped to remove some of the stigma and negative feelings towards care facilities by some family members. However, what the Association has been aiming for and what you are going to hear about from my colleagues, goes much further. It will go a long way towards addressing most of those early criticisms from family members and the difficulties faced by staff and clients.

3 Essentials of a specialized unit

In its representations to the Ministry and its advice to the provider, the WHDA stressed certain characteristics for a specialized HD unit. Among the more important ones were the following

· Many people with HD prefer to sleep in a double bed because of their involuntary movements and restlessness.

· The size of the bedrooms need to take into consideration the marked involuntary movements as well as their wish to have a double bed.

· Corridors must be wide enough to ensure safety both for the person with HD and others.

· The staff of a HD unit need to be very flexible in their thinking and in the care they provide due to the often inflexibility and rigidity of those with HD and the progressive nature of the condition.

· Because of problems with chewing and swallowing, those with HD require special meal preparation. Meal times can be very difficult times for the person with HD as well as for staff. They often feel embarrassed by the way they eat.

· People with HD have special nutritional needs as many experience weight loss - they require small meals five to six times a day.

· HD units need to be sited in accepting communities and near shops, libraries and other facilities.

4 Overseas experience

Last September I was fortunate to have the opportunity to visit specialized HD units overseas while travelling to the International Huntington’s Conference. I visited two units in the UK and another one in Holland and I was pleased to note that the NZ initiative was moving in the right direction. In some aspects we even have the opportunity to learn from the experience of others and provide an even better unit.

For example two of the units I visited were large – with up to 90 residents in one, with an age range of early 20s to 90s. Each complex provided care for a range of conditions and HD was catered for in a specific floor or wing – in other words a specialized unit within a large complex. I felt that these large complexes where rather impersonal, with an institutional feeling. They are a far cry from the “family” feeling that we believe should prevail. One of the perceived advantages of a large institution is the justification for in-house facilities such as physiotherapy, occupational therapy, speech-language therapy, dietician, hairdressing, etc. However, the availability of these facilities in-house tends to alienate the residents from the wider village or town community and we believe in integration with the community to the extent possible.

In all three units that I visited, the staff were very professional, and in each case management commented to me how important it was to employ staff who were prepared to learn about HD and acquire the necessary skills. Our Association believes that any unit is only as good as its staff and we have worked with many of the providers to enhance staff expertise (including publications and staff seminars).

One initiative that I saw in the UK may be worth considering. The staff from one unit apply their skills and expertise in the wider HD community outside the unit. They visit and support those who are still living at home or in other rest homes.

Those with HD and their families have very specific requirements. These requirements are best met in specialized facilities.

From the point of view of the providers and staff of a unit, specialized units provide a better opportunity to acquire in-depth experience and therefore provide a better service.